Need input!

[Juls]

Hi All

Need some help!
I have just been told on 24th Dec. that my CT of 21st Dec. shows 2 bony lesions -
I quote:-
"2 bony lesions now noted that were not documented before.
1 in inferior left sacral wing.
1 in top of right femur.
Possible disease.
Have been there since January 2015"
This has really shocked me as I have had at least 5 CT's this year. I was on a trial and CT's 9 weekly. All CT's reported as Excellent! I feel so let down. The Hospital made a big thing about Rad/Consultant and that important same person read all Ct's.! Not sure on size (hopefully not that big if just noticed)
Today my Nurse called back to tell me what treatment has been decided for me -
Taken off trial (as I expected)
They are saying Xeloda with a biphosphonate (IV 6 weekly) plus continuing Herceptin. Herceptin will now be by injection into leg 3 weekly.
Leg to be x-rayed.

Nurse was upset that she had made things worse by telling me about "been there since January". She wanted me to know what was written. I told her that this has really concerned me.
A year and not noticed! Have lost a bit of faith & hope this week.

Can I have some input please? All thoughts appreciated.


Treatment to start 31st Dec.

[Lucy]

Lots of thoughts running through my head. One of which is they said "possible disease" but it sounds like they're treating it as if it is a fact it's cancer. I don't know how things are done if it's in the bone but no biopsy? Will this plan treat any cancers in other areas of the body? I'd go forward with their treatment plan, for now because it sounds like you don't have much choice in the matter, but I'd be asking a lot of questions and would be considering going for a second opinion. Is perjeta lost to you now?

I'm sorry you're having to deal with this. Hopefully things will get better soon.

Sending you hugs

[Becky]

A few questions I would ask is if the location and size has remained the same all this time. Did any other cts pick this up. Have all of them looked at by the same radiologist or rad onc. Really have someone study all those pictures and if your medical onc can coordinate the pictures in reference to what treatments you were on (or not on) when those pictures were taken. See if there were any changes when not in treatment.

What is your cancers hormone status? Erpr positive cancer likes the bones. If this is there, it may have changed and tamoxifen or something may greatly help.

[Juls]

Hi Lucy
Yes- I queried the possible disease part. Asked if Cancer or Osteoporosis etc. She replied Cancer!! No biopsy done or even mentioned. Unless it is suggested after next x-ray.
All other areas supposed to be clear. Your right, don't think I have much choice in this! Perjeta no longer an option now as it was a trial drug only. So far its not approved for general use here. Also Nurse said not working for me anyway (?) How do they know which one or in fact if all no longer working?
Have written list of questions.
Thanks
Juls

[Juls]

Hi Becky
They say that it was only picked up on this CT but because found this time they have looked back at all Ct's. Knew where to look?!!
My understanding is that both lesions appeared/obvious in last weeks scan and I took that to mean they have grown. The wording on the report is a bit strange - "2 bony lesions noted that were not previously documented"
Really disappointed about this. I was told that it was same Rad Consultant that has checked all my CT's because this was best! Really!!
I am Triple+ and on Herceptin, Perjeta and Femara for last 2 years. Perjeta cancelled from this week(31st)
I had a tiny mark on L1 2 1/2 years ago that Oncologist thought was cancer. Even though CT's and MRI state not connected to cancer. Strangely enough on this weeks report they have actually written, for first time, that L1 "no change and not connected". They can see this tiny mark on vertebrae but missed pelvis and femur?!!
Really don't know what to think.
Juls

[MaineRottweilers]

Becky gave really good advice and asked pertinent questions. I would add, they can't definitively say it's cancer without a biopsy or at very least a PET scan. I would imagine a biopsy would be an absolute must to be certain that the cancer hasn't changed at all.

Juls, I hope they are mistaken.

[Becky]

How long have you been on Femara? It might be time to change to Aromosin. It is an AI that works differently than Femara and Arimidex. Faslodex is another alternative. An anti hormonal switch is probably in order.

[Juls]

Thanks Tracy
I think they have decided worst case scenario - seems to be the way here!
I am not sure if I will be given pet/mri etc & if honest not sure I want to go for further tests as they have always caused more problems. They then waste time on them (L1 mark) and miss the obvious! One of my reasons for being in the trial was - I was continually checked..After all they would catch things quicker!! So that backfired!!

[Juls]

Hi Becky
Been on Femara just over 2 years. I did wonder about changing to another one. I will ask the question tomorrow when I see Oncologist.
Thanks
Juls

[Juls]

Hi Becky

Does Finish have another name. Checked web and can't find anything!

Thanks
Juls

[Becky]

I don't know why my tablet wrote that. It was supposed to be Aromosin. I changed it above too so I don't confuse anyone

[Juls]

Thanks Becky

Will research it!

PS - Finish is a dishwasher powder here!!! Maybe its better !!

[Juls]

Just an update.
At hospital today. Treatment as expected - to be Xeloda, Biphosphonate ( drug to be decided) & Herceptin by injection. Home with the Xeloda to start tomorrow. Also taken off Femara. Told not good with other treatments but then said might add in another AI later (?)
As I expected the comment re CT's -" now know where to look & a subtle change in January"
All CT's to be sent for and studied.
Onc asked me what I understood from this CT report!!
Bone scan & x-ray being arranged asap & Onc wants Surgeon to check bone.
Not sure what to make of all this but just have to go with it. No other option.
Thanks for everyone's input. Much appreciated.
Juls

[Andrea Barnett Budin]

So, Juls, a biopsy would obviously be necessary. They can say possible disease, possible cancer, but they surely need to confirm their suspicions.

I was able to get 2nd and 3rd radiologists to view my ev 8 wk scans back in the day and #2 and #3 disagreed with #1 -- none of them knowing the others existed or what their reports said. #2 and #3 decided they weren't looking at tumors but the dead remains of tumors. So if you can, get additional input. Mine came with onc #2 and onc #3 each independently asking me to see my scans and let their radiologists view them.

When I had June 2015 scans radiologist's report said suspicious of carcinoid tumor, which had been suggested by the previous scan which they compared 6/15 to.

Turns out without surg, which I declined, they did special ocreotide scan which would determine if what they saw was carcinoid and I passed the 4 hrs of scanning w/flying colors. NOT carcinoid, which I agitated about for a full year, till I got an oncological surgeon on board (an hr away, but worth the trip cause he's the only one who knew about this test). I thought my wonderful onc who knows everything would know about such a thing, but it was beyond his scope apparently.

Did you have the bone scan? Did you have an xray? Did you meet with onc surgeon to check bone?

What tx are you now on? You mentioned Xeloda, Biphosonate (to be determined) and Herceptin by injection.

Are you a part of the team who decides what the biphosonate will be?

Is anyone on this board familiar with Herceptin by injection?

I haven't heard of that before.

Did they biopsy yet?

Juls, please fill us in when you can. We are all thinking of you and hoping for your roller coaster ride to come to a stop, with conclusions. So much on your plate. Don't panic yet. Go with the tests and all the input you can muster so make a sane plan.

Hugs,
Andi

[Juls]

Hi Andi
Biopsy not mentioned yet. Think they have decided it is cancer regardless.
Been on Xeloda since 1st and had Herceptin injection on 31st. It was really quick - just a bit stingy, took 3 minutes and finished. Leg a bit marked and achy for a day but otherwise very easy. A step forward.
I did ask about the bisphosphonates & was told Zometa/Zoledronic Acid. When I mentioned other ones (particularly oral bisphos.) & denozumab she decided we would discuss later. She did mention another one -Ibandronate (?) Think I was supposed to just accept Zometa. I am trying to research bisphos. but don't like info on any of them. Does anyone know if one is better than the other?

Wish I could request other radiologists etc but don't think that would go down well here!

Anyway enough of my moans. It's been a long day!

Hope you are well and thank you for your kind words.
Take care
Juls

[Juls]

Becky
Re my comment about Finish dishwasher powder.
When researching bisphosphonates - one of the first articles I read started with
"active ingredient used in laundry detergents and fertilisers. Would you put in your body?"

Just a bit worrying?!!
Will know tomorrow which one Oncologist wants me to have. Feel a disagreement coming!

[Juls]

Just back from hospital
Had leg x-ray today. They let me out so according to Nurse can't be an immediate concern (that I break femur)! What!!! Nurse also said "you have had (lesion) it a while" - Yes, only because it was missed on CT!
X-ray being sent to Oncologist & an Orthopaedic Surgeon to look at.
Didn't get bisphosphonate. Nurse not comfortable giving it because I have to get a root treatment next week. Even although my Dentist says its ok because only just starting bisphos. So one step back again. Also Zometa is bisphosphonate they want to give. I asked about Denosumab but apparently I don't fit criteria ( too young and no kidney problems) Plus it's too expensive! So looks like Zometa. Only good points are that I have 3 weeks to research other bisphos. & get root treatment done.
Does anyone know if one better than another?

[supportwife]

Are CT you refer same as bone scan? I have always been told that CT only looks at soft tissue and not bones. A bone scan is more accurate to check for bone issues. Is that not true?

Thanks

[Juls]

Hi support wife
CT and Bone scan different. CT can look at bones but bone scan is more accurate.

They have been using CT to monitor a mark on my spine (not connected to cancer)for last 3 years & it was in my last CT that 2 bone mets found.
Had to have leg x-ray as well - more detail!

[supportwife]

Thanks Juls,

However that brings up a good point as part of regular scans, should we as patients / caregivers request for bone scan in addition to CT? From what I see, it does not seem like a protocol.

[agness]

What a nightmare for you. It happened to my friend as well, they didn't mention the 1cm bone lesion last year, she was in a trial, the bone lesion spread while the others decreased. She wasn't told.

Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what.

Xeloda has been doing some amazing things for women on the Inspire.com forum so I think that isn't a bad step for you. It might just be your magic bullet. Think positive things.

Also, see about whether rads might be appropriate -- if it is still small and you can get to a proton center you might be able to nuke it and make it go away for good.

Also, you might have a mosaic of cancer cells -- some more HER2 and other more luminal/ER+ -- your body is pointed in that direction in its response. Own that even if you docs seem to not. They sometimes get fixated on one type of cancer type and that isn't the case at all and you are seeing that at work in your body. Use your body as the guide.

Ask questions and if I can help I will.

Hugs.

[Juls]

Hi support wife

I think you are right - we should have regular bone scans as well. This bone scan was only my second in nearly 3 years. When I was on trial drug, Oncologist could ask for private scans if she thought appropriate. I was never considered to need one! Myself and Medical team have all been trusting the CT scan.
Juls

[Andrea Barnett Budin]

I 2nd ev word Agness wrote in above post.

Get copies of ev report and read them. I need to google a few key words sometimes but I get the gist. So will you.

Compare all reports to previous ones.

Remember WORDS MATTER. I know you know this.

NOTHING should be kept from the patient.

My breast surgeon in 1995 who was wonderful in all ways possible confided in me that he hated trials. Because of things such as withholding info you would hopefully ordinarily tell the patient.

B/c they stick to a certain protocol, regardless of what is going on with you, and often to your detriment. I have witnessed this first hand. I was outraged. Clearly the chemo wasn't working and the cancer was spreading (while on chemo) and the onc kept saying let's wait and see with the next set of scans (in 8 wks). And then he did the exact same thing again.

She kept spreading and they kept her on the chemo that obviously wasn't working. Till they stopped all chemo, period, and let her die...

So, what I'm saying is stay positive, be alert, be nosy and noisey...!!!

AGNESS -- "Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what. "

You have the right to know what is what.

And again as Agness says, listen to your body. You could have a mosaic of different cancer types and you have to viewed in that way, with that in mind. No cancer is the same as another even if they have the same pathology. Every "body" is different. Responds differently. Your tx must be tailored specifically to you and what you have going on.

They spotted bone mets and didn't order bone scan?? That sounds not right.

I would discuss this and request this. It is obvious that it is needed, no?

You had mentioned xray and seeing orthopedic surgeon a while ago, or is my sense of time totally messed up?

We are all with you, Juls. Post away.

Hugs,
A.

[Juls]

Hi Ann
Thanks for your reply. I really don't know what to think or do at the moment.
Yesterday at hospital was a bit strange. My usually very decisive Nurse - indecisive. They just keep repeating that things like this happen all the time. Not very reassuring!
I can ask for my reports but not freely given. Funnily enough my Nurse has taken to reading them out fully to me. Never did this before.
Re bone lesion - size not mentioned - but reckon femur is the problem as pelvis lesion not being mentioned very often.
Thanks for input re Xeloda. I was not sure if it was any good. The decision to give me it took no time - I felt that it was dished out without much thought. Also I am strongly ER+ but Femara removed immediately & this concerns me.

Rads have not been mentioned so far but Orthopaedic Surgeon has. I am concerned that femur lesion is already a problem as leg been a bit uncomfortable. Not sure if there is a proton centre here. Only a few centres in Scotland & not sure if each centre has all types of rad treatment.
I was originally diagnosed as strongly triple +. Could have changed.
Can you help me with - "your body is pointed in that direction in its response" Not sure I follow?
Have been asking questions & been forthright in my approach - not sure they like this. My Nurses parting comment was "I know your not happy with us at the moment." Said not personal but very disappointed that lesions missed in Ct's ,5 times! They spent 3 years looking at a tiny mark on my back that was not cancer (to the point of being fixated on it) and in this last report actually wrote not connected. Wish they had spent as much time studying all scans as they did on this tiny mark.

Now having a problem with dental treatment and Zometa. Nurse scared to give me it yesterday as root treatment to be done in next week. Dentist totally confident about doing it. Had to leave hospital yesterday without having 1st IV of Zometa. In a no win situation.
Any help/thoughts etc much appreciated.
I seem to be moving back a step every time.
Juls

[Andrea Barnett Budin]

In googling Zometa and dental work I found this (below). They are being cautious and covering their asses and perhaps doing the right thing with their advice re dental work, Juls.

Your doctor may recommend you have a dental exam for preventive tooth and gum care before you start your treatment with Zometa. This is especially important if you have cancer, if you are undergoing chemotherapy or using steroids, or if you have poor dental health.


Some people using medicines similar to Zometa have developed bone loss in the jaw, also called osteonecrosis of the jaw. Symptoms of this condition may include jaw pain, swelling, numbness, loose teeth, gum infection, or slow healing after injury or surgery involving the gums. You may be more likely to develop osteonecrosis of the jaw if you have cancer or have been treated with chemotherapy, radiation, or steroids. Other conditions associated with osteonecrosis of the jaw include blood clotting disorders, anemia (low red blood cells), and pre-existing dental problems.

Avoid having any type of dental surgery while you are being treated with Zometa. It may take longer than normal for you to recover.

[Juls]

Hi Andi

Had bone scan on Monday and leg/pelvis x-ray yesterday.
Bone scan confirmed 2 lesions in area mentioned before. X-rays being sent to Oncologist and Orthopaedic Surgeon. My Nurse did remark that if a major problem "x-ray staff would not have let me leave the x-ray unit or would have called her to stop me leaving ward." So can't be in imminent danger of fracturing my femur. I was a bit p..... off with this remark and said that "I sincerely hoped I was not at that stage already" Talk about making things worse!
I can't shake the feeling that my treatment is not right for me & that I am looking at hip joint replacement (worse case scenario). Added to this is the indecision about zometa and dental treatment.
Its a bit worrying when your normally decisive Nurse becomes indecisive and uncomfortable with you. Should have insisted on Zometa yesterday. So on Monday I will have to go and speak to my Dentist again & ask for reassurance for my Nurse, more than for me.
As I said before - one step back again.
Juls

[Juls]

Thanks Andi
Good to know that info about Zometa.
My Dentist was extremely confident about treating me in next few weeks as I would only have had 1 IV of zometa. Had tooth removed last week because of imminent zometa & root treatment to be done in next week. Also upper jaw work less of a problem than lower. I wonder what you are meant to do if you have toothache or break a tooth when you have been on zometa for years. Apparently bisphosphonates stay in body for up to 10 years!
Confused & more than a little p..... off!!
Juls

[Andrea Barnett Budin]

I understand and it is all being handled poorly, I agree.

Nurse is advising. Doc seems absent. Assume she is repeating his instructions but can't be sure.

But from googling it does seem prudent to do all possible dental work before NOT DURING Zometa.

Seems easy enough to do.


I doubt anything even in writing from the dentist will assuage your team's concern about the possibility of damage to the jaw if done during Zometa. I'm sure you don't want bone loss to the jaw so why are you resistant to doing whatever need be with your dentist immediately, to speed the process.

Doesn't seem outrageous, but perhaps I am not fully understanding your reasoning.

Yes, you surely have lots to be dissatisfied about with your team. And I am proud of you for not only expressing your disappointment but doing it clearly.

If they are displeased with you standing up for yourself (as you rightly should and must) that is their problem. They may be accustomed to -- 'I'll let the doctor worry about that' patients. They absolutely would be distressed by me I can assure you.

Why weren't they telling you and / or watching the bone lesion 5 x. How often are your CTs? Why didn't they order a bone scan long ago? Why aren't they on top of your medical situation?

Seems like the nurse is stuck between you and the doc. Can you not communicate directly with the doc? Send him a FAX. That's what I do. Then my concerns are in writing and must be addressed. My FAXs are always followed up by a call from the doc, as his/her name is in the top line of the FAX. TO _______________...

FROM: My name
My phone number

[Juls]

Andi
Yes- Apparently as I am not on drug trial now - Doctor does not have to see me every cycle. I was asked yesterday if I wanted to see her but said No. Would rather wait till x-rays checked.

Dentist trying to do all treatment asap, but tooth removed was next to tooth needing root treatment so she wanted it to heal a bit first. Also next appt available is 3/2/16 unless cancellations.

Apparently other bisphos. can be given orally and don't affect jaw as much but they don't seem keen to give them. Cause stomach issues & need to be taken daily etc.
They only noticed the bone lesions on last CT as now obvious & they knew where to look - so looked back at all my CT scans & noticed that there was a "subtle change" in the 2 areas last January! CT's were 9 weekly.
My Daughter's friend is a Doctor & she said the same as you - put in writing and they have to reply. Not sure whether to do this at the moment. They are well aware I am not pleased with situation. I know things can be missed but in 5 Ct's! Can forgive first 2 Ct's but latter ones not so much.

[Juls]

A step forward ?
Or maybe not!
Dentist yesterday & tooth filled - after all this didn't need root treatment.
I can now have Zometa.
Today I call Nurse to arrange Zometa asap & I'm told just leave to next visit for Herceptin. All of a sudden no urgency!

On a plus point - I now know more about bisphosphonates & dental treatment and the risks are the exception not the rule.

[Andrea Barnett Budin]

So Juls, that's great. Dental work over. No need for root tx. Can move forward with Zomenta.

Now they say let it wait till next visit. There it is -- words. Again. They have so much power. We give them so much power!

We hang on their every word, their every pause, deep breath. We see their telling eyes and their body language and we KNOW what they are thinking and it can be very scary.

I must wait till next June to re-visit my discussion about omental caking being written on my CT script as the reason for the test. My point was missed. Oh, we use all different words, doesn't matter. Maybe not for the purposes of the insurance company but to the patient, who sees and reads every word and the agitation it causes -- WORDS MATTER.

Especially when we see a word we haven't heard before in reference to our situation, we become inquisitive and we google and we are emotionally impacted. I want to repeat that reality to my onc who missed my point and will continue doing oh that, whatever, with other patients. Stop thinking about the insurance company and remember THE PATIENT. We are living in a very precarious place and doing the best we can and we need you not to forget that midst your busy day.

Just saying.

Glad you got to know more than ever wanted about bisphosphonates & dental treatment and the risks are the exception not the rule.

But now you can advise others when they are in need.

Sigh.

Keep us posted please.

[Juls]

Hi Andi
Yes - it's words again. Pause and think should be a must before they talk.
Re the bisphosphonates - my dentist told me that she checked with an oral cancer specialist, who confirmed what was & wasn't suitable. (She wanted to make sure she had correct info) Then dentist called my nurse to reassure her. Apparently didn't go well - Nurse actually telling Dentist how to treat & that most root treatments fail! Fortunately dentist is not easily offended! Would be funny if not so serious.
Will get zometa next week - not the treatment I want but they will not give me Denosumab. Apparently I'm too young, don't have kidney problems & it is expensive. Guess which one I think is most relevant.
The plus point in this is I have found a great dentist who wants to work with me and have me participate in my treatment.
Hoping Nurse was just having a bad week & ok when I go in on Thursday.

Your right with - Sigh!

Re your CT report -
Do you have to wait till June. Seems a long time.

[Andrea Barnett Budin]

Shame on that nurse with the bad attitude. I have meant a few, though it's rare.

Re my CT -- I get same day reports. I go to a place that does that, not to the Imaging Center that doesn't.

Been doing it that way since 1999. I am good. Onc surgeon says he is no longer worried about me having carcinoid tumor or any cancer in my mesentary. And, does believe I have omental caking. He was up tight when we met in August, but as I've jumped through all the hoops and passed all the tests, scans, biopsies and follow up CT -- yay!!!

I will meet my oncologist who I saw in Dec and gave the surg's report to in June, after my next CT. Will get a same day report then. But follow up visit will have to include me explaining WORDS to my doc who is so so sensitive and insightful and brilliant and articulate.

He is generally excellent with words. He is gentle but to the point. Has a fabulous manner, knows when to be aggressive, when to pass a problem on to a surgeon, etc.

It was his nurse practioner who I met once and seemed very lovely and informed and spiritual who used that phrase on the script. My onc was I suppose defending her.

I need him to explain to her about the use of words and their impact on the patient. I understand she was thinking of the radiologist and the insurance company but the script was given to me, the patient and I actually read all the details (which is a new a quite lengthy piece of paper covering A through Z).

SHE doesn't get it. And she needs to be more aware.

Since I complained about the assistant in December and my onc defended her, I wasn't going to push. My fav onc and I have been together since 1995. I have only once complained to him about a staff member who was brusque and impertinent (nurse). So mostly I offer praise galore.

This can wait till June, when we meet face to face.

No worries here.

Now let's focus on YOU. May all go well, Juls.

And again, please let us know how you are doing.

Hugs,
A.

[Juls]

At hospital last Thursday & I got Zometa IV.
Questioned again about dental treatment before they would give me it.
Asked again for another bisphosphonate - no go!
Zometa their drug of choice!
5 days in and flu like symptoms.
Fed up!

[MaineRottweilers]

I'm so sorry you feel so awful. Maybe it's time to look for someone who will listen to you. Can you go somewhere else?

As an aside, I haven't been able to take Zometa or Xgeva since Dec. My CA, PHOS & MG are still too low, in spite of supplementing and adding K2 to help with D3 absorption. How are you keeping your levels up?

[Juls]

Hi Traci
Can't change team - will just keep mentioning Xgeva. On plus side flu symptoms better today!
Only had 1 IV of Zometa so far so don't have blood report yet. All my previous reports show low calcium and I have repeatedly told Nurses that I am concerned that this is not good in general and particularly with Zometa. They just offered Adcal to take (1200mg of C & 800 IU of Vit D a day) which in my opinion is too low particularly in Vit D. I am already taking 1000 IU of VIt D3 a day and have read that when you have cancer, dose should be much higher. Magnesium been ok as has phosphorus (its been quite high- wonder if there is a reason ?) have also read that Phos not good to take if bone cancer so maybe I'll just monitor that at the moment.
Zinc and selenium has come up in a lot of articles so wonder if worth looking at as well.

[Juls]

At hospital yesterday - After one of IV of Zometa 3 weeks ago - calcium dropped too low to have next infusion. I have been taking Calcium and Vit d.!! So now told to double it up! On plus side have dental treatment (filling) next week so don't have to worry about Zometa!

Traci - like you I am adding in Vit K . Also changing to Calcium Citrate as it is supposed to be easier absorbed. Have you got your levels up yet?
Juls

[MaineRottweilers]

I'll find out on Thursday. Fingers crossed.

[Juls]

Hi Traci
Hope level is up on Thursday!
Just had another lady e-mail me re zometa. She had it 3 wkly for a year and not once had problem with calcium. Still on it but at reduced dose. She didn't take calcium supplements at all - she binned them!!
Would love to know what I'm doing wrong or does it just suit some people better?
Take care
Juls

[Juls]

At hospital yesterday.
Did get 2nd Zometa.
Told Nurse that if Calcium not up - must be something wrong because I had been taking calcium, vitD, Vit K & mag every day! Fortunately it had come up to 2.34 (minimum scale level is 2.20) This is highest Calcium level I've had! Still to low end though!
Only problem was that liver markers (ALT,AST & Bilirubin) all up . Hopefully only because of Xeloda.
So one thing fixed and another appears.
Don't have symptoms of liver problems but still a bit concerned especially when Nurse tells me that I can't do anything to improve. Surely there must be something?

Anybody have this &/or suggestions?

[MaineRottweilers]

Glad you got Zometa, I finally did too. My Calcium is still borderline low but they went ahead with the infusion because my PHOS and MG were better and I haven't had an infusion since December.

For your liver values, look into Milk Thistle.

[Juls]

Hi Tracy
Glad to hear you got calcium levels up. My level at 2.34 is still at low end but glad I increased it. Didn't feel "me" on 1st Zometa . Hope it was because of calcium plummeting and not the zometa!
Have discomfort in my leg today - wonder if its the Zometa?

Have read about milk thistle but not sure if I should take it. I think I read somewhere that milk thistle not good for ER+ or not good if on Xeloda. Just can't remember which one!

Juls

[Jackie07]

Drug Metab Dispos. 2015 Sep;43(9):1353-9. doi: 10.1124/dmd.115.065086. Epub 2015 Jun 12.
Milk Thistle Constituents Inhibit Raloxifene Intestinal Glucuronidation: A Potential Clinically Relevant Natural Product-Drug Interaction.
Gufford BT1, Chen G1, Vergara AG1, Lazarus P1, Oberlies NH1, Paine MF2.
Author information
Abstract
Women at high risk of developing breast cancer are prescribed selective estrogen response modulators, including raloxifene, as chemoprevention. Patients often seek complementary and alternative treatment modalities, including herbal products, to supplement prescribed medications. Milk thistle preparations, including silibinin and silymarin, are top-selling herbal products that may be consumed by women taking raloxifene, which undergoes extensive first-pass glucuronidation in the intestine. Key constituents in milk thistle, flavonolignans, were previously shown to be potent inhibitors of intestinal UDP-glucuronosyl transferases (UGTs), with IC50s ≤ 10 μM. Taken together, milk thistle preparations may perpetrate unwanted interactions with raloxifene. The objective of this work was to evaluate the inhibitory effects of individual milk thistle constituents on the intestinal glucuronidation of raloxifene using human intestinal microsomes and human embryonic kidney cell lysates overexpressing UGT1A1, UGT1A8, and UGT1A10, isoforms highly expressed in the intestine that are critical to raloxifene clearance. The flavonolignans silybin A and silybin B were potent inhibitors of both raloxifene 4'- and 6-glucuronidation in all enzyme systems. The Kis (human intestinal microsomes, 27-66 µM; UGT1A1, 3.2-8.3 µM; UGT1A8, 19-73 µM; and UGT1A10, 65-120 µM) encompassed reported intestinal tissue concentrations (20-310 µM), prompting prediction of clinical interaction risk using a mechanistic static model. Silibinin and silymarin were predicted to increase raloxifene systemic exposure by 4- to 5-fold, indicating high interaction risk that merits further evaluation. This systematic investigation of the potential interaction between a widely used herbal product and chemopreventive agent underscores the importance of understanding natural product-drug interactions in the context of cancer prevention.

http://www.webmd.com/breast-cancer/evista-for-breast-cancer-prevention

[MaineRottweilers]

How about SAMe?
The Zometa infusion made me feel awful too, I had increased nausea and lots more pain than I am used to. Enough that I am grateful for scans on Monday to rule out progression, my ribs are very painful in some very specific spots. Hope you are feeling better very soon and that it's just a symptom of Zometa doing what it's supposed to do for us.

[Juls]

Thanks Traci
Hope so too! My 1st scan since bone mets diagnosis is 5th April. Hoping Xeloda is working. I am trying to tell myself that pain in leg, that has just started in last few days, is because Zometa is working!!
Fingers crossed!
Juls

[Juls]

Thanks Jackie07
just reading this - not sure if I follow but taking its a no or at least needing further research regarding interactions.
Juls

[Juls]

Just an update!!

At hospital yesterday and my CT report still not back (10 days since CT). So not very impressed.
Got sent to Doctor anyway.
Waited 50 mins thinking, waste of time, as what can we discuss if no results ?
It was a new Doctor who apologised for lack of info but then said she had looked at scan online and that it was ok. I asked what size were bone mets as I have never been told. Seconds later I was looking at my last 2 CT scans and being shown the 2 areas of concern. Well this was a first! In over 3 years I have never been shown anything about my body!! I found this enlightening and could clearly see both mets. Fortunately it looks like Xeloda and Zometa are doing their thing as areas sclerotic.
But I am really annoyed about mets being missed for nearly a year by CT Consultant. I am totally untrained yet I could see clearly the 2 areas involved without Doctor needing to point them out!!
Still don't know actual size but strangely feel better having seen them!!
Yeah - a step forward!!

[PeaceMomma]

Glad you got some information, even if it's not what you were hoping for. I've always asked for all my images (sometimes, it's hard to get them, but I insist on getting them on disk so I can view at home). Information is power and even if I'm not trained, at least I have something I can point to and ask questions. Sounds like the new dr might be helpful. I hope so. Also glad the Xeloda and Zometa are doing their job!

[Juls]

Thanks PeaceMomma
I was really surprised that I was allowed to see scans. Not usual in UK! One of the other Ladies has been asking to see her scans for 3 years - still not seen them! Would love to have scan disc..
You are so right - information is power.
Will be happy if I get to see this new Doctor again!

Juls

[StephN]

I have always been shown my scan if I want or even as a matter of course by my rad onc for following my (non) brain mets. Once you get a reputation for insisting on what you want, things should go easier when you ask.

[Juls]

Need input again!!

Had a CT on 11th Oct. This morning (12th) got call from my Nurse. Radiographer urgently looking for me yesterday immediately after my CT.. Problem again with my right Femur. Told her no calls so Rad consultant didn't try very hard!!
Met in Femur now requires intervention!! Scan sent to Ortho Consultant & they will phone later!!

I got a call a few hours later from Oncologists Registrar. She said " We want to keep you going for a while yet!" Bone needs to be "nailed" asap. Can you go to your local hospital tonight for operation tomorrow.
This call happens while I am in Wedding dress shop with my Daughter.
The shop is 21/2 hours from my home!!
What should have been a lovely day ruined!! The Doctor knew I was away from home. I told her a bit difficult to get back before 5pm! I was then told Orthopaedic Surgeon was going to call me in next 15 minutes. Sure enough phone goes again and same Doctor tells me that Ortho. Surgeon now saying I don't have to go tonight. It can wait and they will see me at their clinic on Tuesday.
So here I am in the middle of a Bridal shop - where I burst into tears. In front of my Daughter and a Lady I have just met! Can my day get any better!!

The Doctors are suggesting "putting a nail through bone" (bone has a fracture) to stabilise it. Doctor told me this was preventative treatment not curative. I am disappointed by this and feel that this is not enough. The area of bone affected is just below ball at top of femur. A tricky area!
Has anyone had this treatment? Any suggestions.
My head is telling me femur/hip joint should be replaced but have been told that this is not done in Scotland for mets patients!!
Don't think I'll sleep tonight.

All thoughts/suggestions welcome!!

Juls

[MaineRottweilers]

Juls, I'm so sorry. It should have been a better day. You have my prayers.

[Juls]

Hi Traci

Thanks for reply. Still don''t know what to think! At least all other parts ok!!

Julie

[jra40]

So so sorry to read your news Juls and that they blew up your special day with your daughter. I have no advice just prayers for you

Jessica

[Juls]

Thanks Jessica.

Did a bit of research today. 1st thing I read is that a pathological fracture is rarely an emergency. So don't know why the panic and rush!

Juls

[Juls]

Just an update.

At Ortho Consultant today. He told me I am not in any imminent danger of fracture and was not overly concerned. Yes there is an area that could be a tiny fracture line ( looks like tiny dots )but it is not in an area that is typical of femur fractures. so he recommends watch and wait!
He did offer preventative treatment of pin etc if I wanted to do this, but if it was him he would leave alone and monitor. On the Mirel score I barely make 1! To see him again in 12 weeks for x-ray etc.
The area that has tumour is lower down the femur shaft and it is sclerotic. It looks better than it did in April so treatment working!
Major panic by my Oncology team & stress for all.
The joys!!

Julie

[Carol Ann]

Well, that is certainly better, YAY!!

So sorry your team had to put you through so much stress!

Carol Ann

[MaineRottweilers]

Ah, Juls, I am so relieved for you but also annoyed as he'll that your MO team worked you over so and on such a special day. Onward!

[Juls]

Thanks Carol Ann & Tracy

It will be interesting to hear what my Oncology team have to say about this on Thursday!

Julie

[Juls]

Me again!!!

Hospital yesterday. No-one had much to say about "panic" scenario! Also I had to fill them in re Ortho Surgeon as report not in.
I told them MY decision was watch and wait.
Actually got to read Ct report (1st time in nearly 4 years)
Doctor offered rads if in pain. Said "no thank you" Not in pain and that I would discuss this and other options later when required.
Found out that I have a bit of pleural thickening at one lung. It has been seen before & in this Ct it's very slightly thicker. Never mentioned to me before. Told not to worry about it! So as you can imagine now concerned about it.
Any suggestions/comments welcome.

Trust is in short supply at the moment!

Juls

[Juls]

Well - here we go again.

I broke a tooth a few weeks ago & looks like root cracked.
My own dentist not available and the one I saw wants to remove tooth. At that point I had to stop her and repeat that I'm on Zometa.
Next thing she is going to write to dental hospital Consultants for advice. Her next comment was you might have to go there to get root removed. I asked why - what would they do different? She told me " nothing just take onus off me"!
Having experience of this hospital I'm not keen to go back.
Geez - is nothing straightforward?
Now waiting for Consultants reply.

At hospital this week for Herceptin & Zometa etc. Told my Nurse about this.
Once again not happy. Her comment "you cannot have tooth removed".
So here we go again - major panic with me stuck in the middle!

In between times - tooth filled & so far ok! Waiting to see my own dentist but her hands may now be tied because of other dentist writing to Consultants.
Is it just me?!!

[MaineRottweilers]

How incredibly frustrating, Juls. I'm so sorry for your plight. I think we are supposed to withhold Zometa for six months before an extraction and and six months after. I could be wrong. Are you in pain? I pray not.

[Juls]

Hi Tracy
I'm not in pain so hoping my own dentist can look at tooth and x-ray. Hopefully there is something else that can be done. I feel quite comfortable with her as she is a former staff nurse who retrained as a dentist. So she knows situation from both sides.

My Nurse did say to me - whats more important, bone or tooth? I said bone & that I wanted to have zometa. The tooth has been root treated and it is ok (at the moment).
When I got back to hospital in afternoon for treatment, my nurse offered to cancel zometa iv. Then repeated as I was leaving - no extractions!!

One of the other patients overheard my conversation with nurse & called me over to say she'd had a tooth extracted but bone damaged and gum needs packing every 2 weeks now. Because of situation with tooth, her op to repair fractures in leg & replace a pin has been postponed.

Geez!!

[Juls]

Just an update!
This has been going on for months!
Eventually after many consultations, e-mail & tel calls about broken tooth - My dentist took root out with minimal damage to bone. Her words " just wiggled it out".
Oral Surgeon agreed with her that it was ok to remove but he suggested a stitch should be put in to help close over gum etc. She is now going to monitor for next 3-4 weeks to see how it is healing.

My Nurse still not happy - doubt if she ever will be - she has confided in me that it is difficult for her as the Oncologists/Doctors will not agree on how to deal with zometa and dental treatment. Some say go ahead with extractions etc, others are definite "no's." Not good for the patients!!

I might refuse next weeks Zometa though- probably pointless but think everyone will be happy with this decision!
Juls

[Juls]

Another update!!
Just back from check up at Ortho clinic re met in femur.
No mention of suspected fracture mark in hip that caused the major panic last year.
Bone met - no change!
Op not required.
Check again in 3/4 months.

Now only CT report to go - Fingers crossed!

[Mtngrl]

Good grief.

Stories like yours are what have kept me refusing Zometa so far. I have one bone met. I have tooth issues (who doesn't, after years of chemo?) I'm looking for a less risky way to deal with the bone met.

Hang in there!

Amy

[TiffanyS]

Hi Juls, I just read you earlier post regarding your tooth issue, and I’m glad it’s finally been resolved. I’m sorry you had to go through that stress though. I’m also glad that your test results showed no change, and I hope you get a good CT scan result. Keep us posted.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.

[Juls]

Hi Amy

I did a bit of research at the time but it didn't occur to me to refuse! How daft am I!
One report mentioned it was an ingredient in soap powders etc & I still went ahead!
Nurse also told me that zometa helps with cancer - not just bone!! Not sure how. Fortunately now on 6 weekly IV's & hoping they will be reduced to 9 then 12 weekly.

It would be great to find a better way to treat!

I've convinced myself that Vit D helps so have increased my intake.
I'm working on the principle " every little helps"!!
Juls

[Juls]

Hi Tiffany
I think Nurse more stressed than me. You would think they would have had some protocol in place.
All I did was wait till they all sorted it out - it was med team & dentist making all the calls. I told them - contact me when you have a plan!!

Mind you - I'm not looking forward to getting stitch out!!
Juls

[Mtngrl]

Jules--

I think they think stronger bone is less cancer-prone. Could be true. But a new study on Zometa for early stage BC was discouraging, as I recall. For those with recurrences, they had less bone mets but more organ involvement. Since bone mets, by themselves, are not lethal (though they can be debilitating and painful, and people often progress) that doesn't seem like a good result.

Bottom line, we need a cure for Stage IV!

Amy

[Juls]

Hi Amy

My Med team tell me bone will be stronger with zometa but other research tells me bone is actually more brittle, like a dry twig!
Juls
PS - Love the new photo!!

[Juls]

Well here I go again!
At hospital today and taken into a side room.. Immediately knew CT report not good. I have waited 3 weeks for it and now I find out they knew I had progressed but didn't tell me earlier!
The scan showed a met in liver in exactly the same area that I had tiny met 4 years ago (had asked for ablation 4 years ago but by time Liver specialist replied the met had responded to chemo)
I have been offered a trial again (apparently my timing for this is perfect - Its only open for another few weeks)with TDM1 & an immuno drug ( or placebo). So it's a no brainier, I have to do it! If I don't I will not get TDM1 at all as its not given in my area. If Oncologist applies for it she expects that application would be turned down. Other offer was ablation and some unnamed drugs, possibly AI's, but if I do this I will be automatically excluded from trial. So looks like the trial!
Rest of report is good so trying to take positive attitude. At least it is not numerous mets.
Any thoughts or input appreciated!
Juls

[Mtngrl]

Well, don't you wish stuff would stay "resolved?" Sorry about your progression.

Sounds like either arm would be a winner. If this is your only way to get Kadcyla, I say jump on it. Kadcyla is a "home run" for some people, and for most it's pretty well tolerated.

Amy

[Juls]

Hi Amy
It is only way! So a "no brainier." Anything else means no Kadcyla!!
So even if I end up with Kadcyla & a placebo think I am still best on trial!
Can't start for 28 days - so timing works out, as last Xeloda was a week ago & I would start 3 weeks today which gives me 28 days!
Apparently I'm lucky!!
Thanks
Juls

[Carol Ann]

I am with Amy ... I guess if this is how you get the Kadcyla, bring it on.

The timing is perfect ... another positive!! I am hoping this is your homerun that knocks your mets wayyyy out of the park!

Carol Ann

[TiffanyS]

I’m sorry to hear about your progression Juls, but I agree with everyone that joining the trial is the only way to go. At least you’ll get TDM-1, which I’ve heard has worked wonders on a lot of people. I hope you get the immuno drug with it, but, even if you don’t, you’ll at least get TDM-1. Is TDM-1 not covered in the UK? Is that why you won’t get it if you don’t join the trial? I thought it wasn’t covered in Canada, but, it seems it is covered as a third line treatment. Given the success rate of this drug, I don’t understand why it’s not covered for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Hi Tiffany
It's not given in my area of Scotland.
Oncologist said she could apply to "NICE" Med Board for it but she reckons 99% a "No".
I had already said that when I progressed I wanted TDM1 & expected a fight to get! The trial is with TDM1 & an immuno drug or placebo. So would get TDM1 regardless. It's the only way to get drug so a no brainier.

The immuno drug would hopefully be a bonus - although I am told it can have "strange side effects" (Oncologists comment)so think it might be obvious if you are getting it.

The only other option mentioned was AI's but Doctor pointed out "you have already failed on Femara." Now I have failed on Xeloda and Herceptin with Zometa.
I realise that scans are not infallible but I have had a few things missed so don't have much trust. Tumour is 2.5 cm in under 12 weeks!
Trial requires tumour testing & scans again to get on it & then frequent testing during it.
If not for this trial I don't think I would have great options for next treatment so I have got to get on it!!
Off all treatment for next 3 weeks. A bit worrying!
juls

[TiffanyS]

Juls, I’m sorry to hear that TDM-1 is not covered in Scotland. It’s too bad because it has helped so many people. Is it because it’s too expensive? If the trial is the only way to get TDM-1, than that’s what you have to do. Even if you get the placebo drug, you will at least be getting TDM-1, which I hope works for you. It’s too bad that we still have to fight for drugs that could save our life, but, what can you do. I guess it’s all about the money! At least you’ll be scanned regularly while on the trial, and, I hope kept up to date on your prognosis. The next three weeks will go by fast, and then you’ll be getting the drugs you need.


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Hi Tiffany
Yes - all about money!
Have to do trial & only trial! If I do any other treatments I am automatically excluded from trial. If I wait (till after my Daughters wedding) I'm excluded on time.
I did immediately say "Yes" then Onc told me some other options which were not great.
It's my only way to get TDM-1
Juls

[TiffanyS]

When is your daughter’s wedding? I’ve heard that there are very little side-effects with TDM-1, so hopefully you’ll be feeling okay for her wedding. You have to do what you have to do though, and you need this medication. I’m just glad that the trial is available for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

End of April!
Yes - I'm glad as well - if I had postponed my scan until after wedding - which I had thought about. I would have missed the trial by over a month!!

[Mtngrl]

Juls,

I have to agree--you are very lucky.

Kadcyla/TDM-1 is expensive for what the average result is. It doesn't double overall survival (looked at from a group perspective), but just adds months. I'm glad they're looking at other drugs to combine with it. That being said, it has been a "home run" for some people. Herceptin alone is actually a home run for some people.

Cancer is us, and each of us is unique. Eventually every cancer patient will have a unique, customized treatment plan. Until then, those of us who are already in the "lottery" as Jedrik calls it have to play the cards we're dealt.

[Juls]

Thanks Amy.

I am wavering a little tonight!
Wonder if I am focusing on Kadcyla & not investigating other drugs etc. Not that I have been offered anything other than another AI if I don't get on trial.
Surely there are other drugs available?
In my area of UK - TDM-1, Tykerb & Perjeta n/a unless on a trial.
Have already had Docetaxol, Perjeta, Femara, Xeloda along with Herceptin and Zometa.
Also not sure if off Zometa when on trial drugs.
I was told I did well on all treatments! All blood tests, particularly in last few months really good, so a bit surprised by all this.
Any thoughts anybody!
Fortunately I feel good!
Juls

[Mtngrl]

Dear Jules:

Here's a link to a summary from about a year ago: http://www.gotoper.com/publications/ajho/2015/2015apr/her2-positive-breast-cancer-update-on-new-and-emerging-agents

And here's another good overview: http://www.medscape.com/viewarticle/870720

There's a new drug coming along for people who are both ER and HER2 positive that looks quite promising. It's called tucatanib.

That being said, I see no reason not to try Kadcyla (a/k/a TDM-1).

While I wait around for something new to be approved (or for a study. . . .) I'm doing Herceptin and Eribulin. I have mets in my lungs and in one vertebra. My bone met doesn't seem to respond to HER2 targeted therapies.

There are other classes of chemo that can be given with Herceptin. And novel combinations can be tried.

Hang in there! I'm so glad you feel good and your blood tests are good.

Amy

[Juls]

Thanks Amy- I'll have a look at both.
Have read a little about Tucatanib
Just been on Onco link re this new trial drug I have been offered! Has many side effects!
3 am & I'm still up researching!
Juls

[TiffanyS]

I spoke to my doctor about Tucatanib a few weeks ago, and she told me that you can’t take Tacatanib (or be part of the trial for it) until you have taken Perjeta/Herceptin/Taxol and TDM-1 first. She also told me that there are better drugs on the market, although she didn’t tell me what they were called. That being said, I think people need to take TDM-1 before they qualify for other drugs. Juls, it’s up to you what you do, but I think that the TDM-1 trial is your best option right now, unless you can get Perjeta/Herceptin/Taxol (although I think you said that Perjeta is not covered where you live). Talk to your doctor about your other options, and see what she says.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Hi Tiffany

Thanks for reply.

I have already been on a trial with Perjeta & had progression after approx 2 years on it. To be accurate I had nearly 3 years on Perjeta but that was because 2 bone mets missed for a year on 4 CT's(?) so perjeta continued. Got 12 months more that I should have had! Hopefully it did help even if just a little.

I haven't been offered anything else. The only reason that an AI mentioned was because I said I'd hoped for no treatment change until end of April (after my Daughters wedding in 11 weeks) & Onc said she could give me an AI to tide me over till then! Personally I don't think an AI only for 3 months is a great option. It's a no go anyway because trial closes in less than 8 weeks.
Once again I feel that they had already decided my treatment. It had already been discussed with everyone except me.
I know its my decision in end but I think all options should have been given.
I do think that trial is my only option - I want TDM-1. Just concerned about side effects Apparently trial drug (if I get it) has "weird s/effects!!

Got appt with new trial Doctor on Thursday so will find out a bit more!
Juls

[TiffanyS]

Hi Juls, I’m sorry to hear that you had progression on Perjeta. At least it worked for two years, which seems to be the average. I’m hoping to get two to three years on Perjeta before I have to transfer to the TDM-1.

I have to say I’m surprised that Perjeta is not covered in Scotland. I thought the health care system in the UK was pretty good. Is it different from region to region? I can understand by TDM-1 isn’t covered (although it should be), but I can’t understand why Perjeta isn’t. Is Herceptin covered at least?

My oncologist always decides my treatment for me before discussing it with me. She just comes in and tells me what drug she will be giving me next, and I have to research it on my own and then ask her questions at my next appointment. I’ve since been researching drugs on my own, which I have discussed with her, but I don’t’ think she likes that. She’s referred to “Dr. Internet” a few times, and not in a good way. I have made it very clear though that I was to be involved in all decision process, and, that I want a copy of all of my test results, and they told me that they would keep me informed. We shall see.

I think the TDM-1 is the best route for you to go right now, and, even if you get the placebo, you’ll at least be getting the TDM-1. I’ve read that on average, it works for about two years, which is the same as Perjeta. By then there may be a new drug on the market. I’ve also heard that there side-effects are not that bad from TDM-1. If you get the immuno drug, you’ll have to let us know what the side effects are.

I hope you like the trial doctor, and that he/she is a little more informative than your current oncologist. Keep us posted.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Hi Tiffany
Thanks for reply!

Perjeta is a trial drug only at the moment in my area. I was lucky to get on trial of it 4 years ago.
Herceptin is standard so available to all.
Kadcyla is also not available mainly because of cost. I want Kadcyla and only way to get it in my area of Scotland is this trial!
I see new Doctor tomorrow and have been told he is very nice!! Think I might have met him before when my current Oncologist was on holiday. Fingers crossed it goes well. Tumour test results might not be back from Germany (Trial lab there) so this might delay decision.
Juls

[Mtngrl]

I'm keeping my fingers crossed for you, Juls.

Amy

[Juls]

Thanks Amy
I'll update when I have more info re this new treatment & trial. Got appt tomorrow with Oncologist & bone scan on Friday.
Juls

[TiffanyS]

Juls, I hope you meeting with the new oncologist goes well today. Keep us posted.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Thanks Tiffany
It seemed to go well today. All my questions answered directly and with no hesitation. As I expected - no real alternative offered. Once I've got my head round all this I'll update!
Have another long day tomorrow as I have bone scan.
Haven't changed my mind - think this is still best for me at the moment.
Apparently the drugs available as standard here are getting less and less- so have to get on this trial!
Juls

[TiffanyS]

I’m glad everything went well, and that the oncologist answered all of your questions. It’s sad that the drugs available as standard care where you live are getting less. You would think it would be the opposite, and that with all of the new drugs on the market, you would have more options, not less. Can people at least pay for the drugs not covered by your medical care if they can afford it? I know that only a select few can afford to take these drugs on a regular basis, but they should at least at the option. It’s too bad. I’m really glad that this trial is available for you, and I hope everything works out for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Hi
Bone scan done on Friday.
Have been told I will probably need another CT - amongst other tests.
Off all treatment for 4 to 5 weeks - For some reason Onc not overly concerned about this! He seems to think if met grows when off treatment it grows!!
Just realised today is 4 years exactly from original diagnosis. It's that lucky 13 again!
Geez!!

[TiffanyS]

Hi Juls,

I’m glad that you’re getting more tests done. That way, you’ll know exactly what you’re dealing with when you start the trial. Don’t worry too much about not getting treatment for four to five weeks. My doctor told me that for most people, the cancer will not grow in such a short period of time. It will only happen if you have an aggressive cancer, which is what she keeps telling me I have. I think you’ll be okay, and you have your daughter’s wedding to keep you busy until then!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Juls]

Thanks Tiffany.
Oncologist not overly concerned re growth but I don't know him well so don't know his work style.
My previous Oncologist seemed to go looking for issues even when reports said otherwise!
This liver met has appeared in less than 12 weeks on a Ct - & already at 2.5 cm. Which makes me think it was missed in October scan or is fast growing.
I commented on the fact that it was regrowth of original tiny liver met that should have been ablated 3 1/2 years ago. ( It wasn't done because of delay between Onc & liver specialist & by time replies received I had started chemo)
My new Onc then said he doesn't believe in doing any type of liver ablation. So if I don't get on trial , ablation is also out! A bit disappointed in this as I'm sure many ablations are successful.

This trial is a phase 2 with only 200 places worldwide. There is already 1 Lady on it in my area. Fingers crossed that I'm 2nd!!

Re - the wedding arrangements - exhausting!! In all ways.

[TiffanyS]

Juls, I know how you feel. My oncologist is not overly concerned with the “pimples” that have grown along my scar, and she thinks they are just scar tissue, but is monitoring them for now. I, of course, am hesitant to believe that since that’s what they told me the last time, and it turned out to be cancer. Her mentality is that if it is cancer, it wouldn’t change my treatment plan anyway, and that the chemo should get it. I, however, want to know if it’s cancer, as that means it grew back while I was on a chemo break, which means the Perjeta and Herceptin don’t work for me without chemo.

I think that you are right, and that your liver met was missed in October. Let’s hope that’s the case, and that it’s not fast growing. Let’s hope you get on this trial so that you can get the drugs you need to shrink that liver met! In the meantime, try to enjoy life. I know that’s easier said than done!



¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

[Mtngrl]

Keep us posted, Juls! Keeping my fingers crossed for you.

Amy

[Juls]

Thanks Amy
I am still waiting! Doesn't look like I will be starting next Thursday!
Juls

[Andrea Barnett Budin]

On Long Island (NY) I had two additional oncologist's. One in Manhattan. One in Westchester. Both requested I bring CTs to them for their radiologists to review.

This was 1999. All my many CTs were STABLE showing same tumors in liver. I had multiple tumors throughout liver too many to count from the getgo. So what they saw was what remained. After Taxotere 9 mnths and Herceptin 7 months at that time.

I got copies of MY Ct's which we all have a right to, from the Imaging Center and I subsequently collected copies after every CT (waiting back in waiting room for 10 minutes to get them).

I took the CTs to both oncs who each had their radiologist read them.

Both independent radiologists who did not know each other (one in Manhattan with Mt. Sinai), one in Westchester with radiologist previously from Sloan Kettering) -- said the same thing.

WHAT I AM LOOKING AT IS NOT TUMORS. THEY LOOK MORE LIKE NECROTIC TISSUE. THEY ARE CYST-LIKE, FILLED WITH FLUID.

Both radiologists said -- I WAS STABLE WITH NO EVIDENCE OF DISEASE.

From that moment on I decided to listen to radiologist #2 and #3.

I have remained STABLE WITH NO EVIDENCE OF DISEASE SINCE APRIL OF 1999.

I remained on Herceptin till 2008.

Been off tx since.

Still STABLE.

Still happy.


I would have insisted on a biopsy before tx. It is our right.

I see you write you have no choice and I remember thinking when I first saw you write those words it didn't sit well with me.

Forgive me for being blunt, but we always have a choice. We are talking about our body and our life !

I informed my oncs that I was a part of the team. I was a part of the decision making.

I was moved to say that because one onc had made a decision to give me more Taxotere than the stated, conventional protocol at the time (1998/1999).

I also had a Florida onc. I spent half the time on Long Island and half the time in Boca. I carried a FLOW SHEET from onc to onc, to keep everyone on the same page.

When I got to Boca Dec of 1998 I felt like total crap. I could barely walk (I shuffled and kept tripped as I couldn't lift my leg/foot enough to clear the floor) and I could barely speak above a whisper.

I had a pleural effusion and a peri cardial effusion from the Taxotere among many awful side effects that were painful and debilitiating.

My Boca onc looked at the flow sheet and said OH NO WONDER YOU FEEL AS YOU DO. YOU HAD AN EXTRA WEEK OF TAXOTERE THAT YOU WEREN'T SUPPOSED TO HAVE. NO BODY CAN TAKE THAT MUCH TAXOTERE.

When I got home I called my very much loved Long Island onc and was told by his nurse that well DOCTOR DECIDED YOU WERE DOING SO WELL (WITH SHRINKAGE) THAT HE WOULD GIVE YOU AN EXTRA WEEK.

That should have been discussed !! Well, it was the doctor's decision.

NO. NO. NO. I am a part of the decision making panel. I am on the team !!

And I made that clear to all my oncs. As I say, we were talking about my body and my life. I may have chosen or been persuaded to do the same thing but I should have been given the choice.

That's my take.

I don't mean to be blunt or rude. Forgive me if I sound it. But I feel passionately about this. And yes, I am outspoken. I feel it's my responsibility to share what I've learned with friends. That's what good friends do. Hell, I would share my thoughts with strangers. You can always ignore me. Just hear me out.

I love you, Juls, and I love you all.

I am always on YOUR side! Always !!

Hugs to all,
Andi

[Juls]

Hi Andi
Thanks for your reply.

As you know I was not happy with decision (re Xeloda & Zometa) last year when bone met found & told Onc so. I felt the decision was made without me being included & I was never 100% that Xeloda was right for me! I felt that as I am high Er+ & Pr+ that this was not being treated -Xeloda and an AI can't be given together (I did take it for 12 months. Liver met re-grew in same place over last 11 weeks.) It was just a gut reaction it wasn't right for me. I know it works for many others. They offered nothing else and I felt I had no option but to take it.
Yet here I am again - walking into ward 3 weeks ago unaware CT showed progression & not knowing that they had already had a meeting regarding my treatment. Nurse looking uncomfortable and telling me she didn't know whether to call and tell me over the phone priot to my appt. because we had never discussed protocol. Rubbish - she has called numerous times! This trial was only option given. Yes - I did ask for other options! Both Oncologists saying that this is best option. My current Onc mentioned an AI to tide me over until after my Daughters wedding and then they would look at me again (Guessing it would be another chemo) but trial would then be closed..This trial includes Kadcyla and this is only way to get it here. Apparently the drugs available in my area are getting less and less mainly due to cost. Even if they apply to Health Board for Kadcyla outwith trial I have a 99% chance of not getting it. So seems pointless.
I got a call today re Ct and Echo - got appt. for tomorrow 1st thing. Got them to add on blood tests as well to save a double journey. Doesn't look like I will start this week - more likely next Thursday. If I don't carry this PD ligand(?) not sure what will happen.

This Phase 2 trial is only allowing about 200 worldwide & it closes in a few weeks. If I do any kind of treatment (AI,Ablation,chemo etc.) or if I delay I am excluded. So between a rock and a hard place!!"
Trial is an immunotherapy drug ( 2 in 3 chance of getting it) and Kadcyla ( all patients get it)
Will update when I get any other info.
Re - Biopsy - not needed at moment for trial. I asked for ablation but told no as I would be excluded from trial plus new Onc. doesn't believe in ablation.
Is it just me!!
Juls

[Juls]

Had Ct and Echo today.
Heart fine!
CT - got to wait for report. Normally CT scan is of chest,abdomen and pelvis. Today it also included head. Never had that before & wish I had been told in advance.

Met new Nurse for 1st time. Trial blood tests and ECG done. Found out that the 1st patient on trial started last week & already another 4/5 being considered.
I asked if she knew of any options if I didn't get on this trial. Her reply was another chemo!
Did find out that tumour test back and results good for trial.
The downside is they say I can't start for another week. Which means 5 weeks since last treatment.

[Juls]

Yesterday I started new immunotherapy drug trial.
Also got CT report -
Brain - OK!
Liver - lesion grown 1.2 cm in a few weeks! A bit concerned about that.
Fortunately only change is in liver and it is in exactly the same spot as 4 years ago.

Thought I was off treatment too long but met another Lady waiting to start same trial who has been off treatment since beginning of January. She can't start trial for another 1 to 2 weeks!

Started at 12 - got out at 5 pm. No idea if given placebo or immuno drug. Had a bit of tightness in forehead and lower back when 1st drug given but that was all.

New oncologist questioned me about right hip as Ct report went into great detail about "hip fracture" Apparently 2 radiologists studied the scan. Had to give him whole scenario of last years panic. That was good enough for him. He couldn't understand how if I had major problem with hip I was not in pain or limping!
So far today- feel fine. Long may it last!
Juls

[TiffanyS]

I’m glad your brain is okay Juls. I have my second brain MRI in a few weeks, and I hope it’s clear!

Sorry to hear that your liver met grew so much in the last few weeks. You’re on treatment now though, and I hope the TDM-1 gets rid of it. Even if you don’t get the immunotherapy drug, at least you’re getting that!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled

[Juls]

Hi All

Have been on this trial with Kadcyla & Tecentriq/or placebo for 6 months.
Liver met reduced to under 7 mm on CT 4 weeks ago.(It was 3.5 cm at start of trial)
Side effects change every cycle but none are terrible.

Hit a problem last week as bilirubin too high and as per trial protocol I was not allowed 10th cycle. Wasn't expecting that!

Oncologist says he is not worried & I've not to worry either!
Next cycle to be in 3 weeks. Would have been happier if it was this week

Has anyone else had this on Kadcyla?

Juls

[donocco]

Jules

Tecentriq is not an anti Her 2 Neu drug. It is a PD1 inhibitor like Kaytruda (pembrolizumab).It can cause immune related side effects like imune related hepatitis, colitis etc. I think the oncologist is just being cautious.

Paul

[Juls]

Hi Paul

Thanks for reply.
You are probably right about oncologist being cautious.

Just read info on immune related hepatitis so would prefer not to go there! I have a 1 in 3 chance of being on Tecentriq.

Think I'll just take the break & hope it clears all side effects so I can get 10th cycle & many more.

Thanks again Paul

Juls

[Juls]

Another long day at hospital.

Only half of blood test came back in morning - the important result (bilirubin) held up in bio-chemistry lab as machinery broke down! 6 hours later told that I could have treatment as bilirubin down to 27. (max allowed is 30 and under)

It seems that the 3 of us on the trial have all hit problems in last 3-6 weeks. We are all on different cycles - 1 on 5th cycle, 1 on 8th and myself on 9th.
1 had treatment withheld for 3 weeks because of severe pain.
1 for inflammation. So she has decided to continue with Kadcyla only & drop trial drug - but remains in the trial!
& me with high bilirubin.

10th cycle received. Fingers crossed.

Anyone-else on this trial?

Juls

[Carol Ann]

Fingers crossed for you, Juls!

Carol Ann

[valleygirl]

I'm currently on TDM1 and Keytruda. Currently stable

[MaineRottweilers]

Fingers crossed that things stay good for you, Juls.

[Juls]

Thanks Traci
So far - so good!!

How is H & P going?

[MaineRottweilers]

Pretty smoothly for the most part. GI issues and the itch they say is not related to Perjeta and is not a neuropathy...even though it follows a nerve up my left arm and across my collar bone. I'll take it though! It's all worth it to keep living and breathing. I am incredibly fortunate to be well and NEAD for two years. Hooray for us!!!

[Juls]

Good to know.
I had H & P on a trial for 20 months. Found it ok to do - but I was the only one not to have the itch! Most of the ladies said once off perjeta - itch stopped!

Juls

[Juls]

Well - this trial is up and down!
I'm off treatment again as bilirubin up. Only plus this time is that if bilirubin under 30 next week I should get treatment.
So far I haven't been to bad but others having inflammation, joint pain and immune system side effects.

[Juls]

Hi Valleygirl
How are you finding TDM-1 and Keytruda?
It seems similar to trial I'm on - TDM-1 & Tecentriq (Targets PDL-1) or placebo

Juls

[Laurel]

Praying the Bilirubin is down for your next treatment. That combo sounds a bit rough, but if it is working then worth every discomfort. You are one tough lady!

[Juls]

Hi Laurel
Yes- hope it comes down! Will really be annoyed if it doesn't!
Doctor now wondering if I have naturally higher bilirubin!

Have upped intake of red fruit/veg, water and coffee!
Didn't know that coffee helps bring bilirubin down & here I was trying to be good & cut it down a bit!!

Anybody looking for me I'll be in Costa!

Juls

[Becky]

Have a blast. You deserve a break. I am always thinking of you and all our members in active treatment. I admire the strength of those in trials that push the race for a cure one step closer.

[Juls]

Just checking in!

Still on trial of Tecentriq (Atezolizumab).
The drug company has looked at 1st reports and have found that results show little difference. So trial has been "un-blinded."
Turns out I'm on Tecentriq with Kadcyla.
Other than problems with high bilirubin ( caused by Kadcyla) I am ok.
We can stay on trial or come off and have Kadcyla on its own. I've decided to stay on it for now. Will review again in March depending on next scans etc.
Trial had 7 on it. Now down to 3. To date I don't know if other 2 ladies staying on trial. Might just be me!

No idea if I'm making right decision!

Juls

[MaineRottweilers]

Juls, that's the way of trials, you never really know if it's the right thing. However, your willingness to contribute to the body of evidence (good, bad or indifferent) is pretty heroic, in my opinion. Much love to you and fingers crossed that it IS right for more than the greater good---right for YOU.

[Juls]

Hi Tracy
Thanks for reply - especially tonight. All went pear shaped today. Looks like I'm off trial.
Bilirubin been high & I've not had treatment since 30th Nov. As per trial rules - number of days without treatment has put me out! Should still get Kadcyla when bilirubin reduces but under NHS rules.
Got to wait to next week for further info.

Can't decide whether I'm upset or angry!

The joys of a trial & treatment!!

Julie

[MaineRottweilers]

Bummer, Juls. I can hear your frustration. Are you doing anything to support your liver so you can get back on Kadcyla post haste?

Beets, milk thistle, radishes and barley are things I have heard of using as liver support in pets. maybe they are useful in people too.

I'm sorry about this rough patch. You are doing great, keep moving forward.

XO Tracy

[Juls]

Hi Tracy

Have tried extra juices, B12, red fruit & veg etc. Also coffee - it apparently helps bring down bilirubin. Didn't help this time. Another suggestion was 1 tablespoon olive oil twice a day - haven't tried this yet!

Hope all good with you.

Juls

[MaineRottweilers]

Olive Oil, YUM! Salt and a little red pepper ground over the top, dip bread and you're in Heaven and lowering bilirubin. A few tablespoons will not be enough. :)

I'm still flying under the radar <touch wood>.

[Juls]

Hi Tracy
Will try that.
Sounds better!
Juls

[Becky]

Believe it or not, I still take high quality evoo right off the spoon. 3 tablespoons a day and use for salad dressing etc

If buying tumeric buy it with piperdine which is the active in black pepper. This makes tumeric 2000% more bioavailable. Also take the tumeric with the fattest meal of the day or at least with your tablespoon of evoo:)

[nancy dip]

Hi Becky. Do you still take arimidex? I had to stop in November 2017 because of NHS funding....I live in the UK. I am asking because I am thinking of trying to start again if I can access it but Docs here tell me there is no evidence of any one in UK continuing beyond 10 yrs and no evidence of benefits for doing so..... I would gladly self fund if I could.
Also, could you let us know what supplements you take. You are my poster girl as you are one of the few on the board who has followed the UK protocol of herceptin after chemo!
very best wishes, Nancy

[Juls]

Well as I thought - off trial as time barred although still to get trial CT's etc.
Bilirubin even higher this week so once again no treatment.
Doctor telling me that it might be months before he can give me Kadcyla. Bilirubin has to come down below 30. Last week it rose to 48!
Anyone had this?
I am getting concerned that I've had no treatment except 1 x Zometa since 30th Nov.