Re: Need input!
 

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.

Re: Need input!
 

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

Re: Need input!
 

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/e...cer-prevention

Re: Need input!
 

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.

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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!!

Re: Need input!
 

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!

Re: Need input!
 

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

Re: Need input!
 

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.

Re: Need input!
 

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

Re: Need input!
 

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

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Hi Traci

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

Julie

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

Well, that is certainly better, YAY!!

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

Carol Ann

Re: Need input!
 

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!

Re: Need input!
 

Thanks Carol Ann & Tracy

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

Julie

Re: Need input!
 

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

Re: Need input!
 

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?!!

Re: Need input!
 

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.

Re: Need input!
 

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!!

Re: Need input!
 

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

Re: Need input!
 

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!

Re: Need input!
 

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

Re: Need input!
 

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.

Re: Need input!
 

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

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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

Re: Need input!
 

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

Re: Need input!
 

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!!

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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

Re: Need input!
 

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.

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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