Need input!
 

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.

Re: Need input!
 

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

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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.

Re: Need input!
 

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

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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

Re: Need input!
 

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.

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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.

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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!!

Re: Need input!
 

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

Re: Need input!
 

Hi Becky

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

Thanks
Juls

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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

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Thanks Becky

Will research it!

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

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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!

Re: Need input!
 

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?

Re: Need input!
 

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

Re: Need input!
 

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!

Re: Need input!
 

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.

Re: Need input!
 

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.

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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

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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.

Re: Need input!
 

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

Re: Need input!
 

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.

Re: Need input!
 

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

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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

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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

Re: Need input!
 

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.

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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.

Re: Need input!
 

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.

Re: Need input!
 

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.

Re: Need input!
 

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.

Re: Need input!
 

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!

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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?

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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.

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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

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I'll find out on Thursday. Fingers crossed.

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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

Re: Need input!
 

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?