HER2 Positive-anyone 10 years out?
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Thanks Helena, I think the reason for discontinuing it during rads was because it was on the left side and to the chest wall. I don't know why it will be stopped for surgery. I don't think that is that uncommon, though, because I remember reading about some women who missed a dose when having reconstruction surgery. I think it is just bad timing in my case. I alreaady missed the doses during rads and would normally start back up if this new situation hadn't presented itself. I think most women don't do the ooph/hyst surgery until after done with the year of herceptin. Mine is just a unique situation in that it's being recommended to do now. I also don't know if it's because I might not be able to do it laproscopically??? (did you have lapro surgery?) Maybe because it will most likely be the bigger surgery, they don't want to take any chances??? I don't know the reason, but the more and more I think about it, the more anxious it makes me! I meet with the gyn-onc on March 10th and I have an appt with my regular onc the next day.
I thought herceptin only stays in the body for a little over 3 weeks, hence the every 3 weeks dosage?
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No - it takes a long time for Herceptin to leave your body, definitely more than 3 weeks. But there should be boatloads of women who have all kinds of surgeries and just keep their 3-weekly Herceptin. Talk to your Onc about this. He or she should also be able to double check with a cardiologist.
Take care,
Helena.
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I had herceptin during reconstruction and I did not stop my herceptin treatments for my reconstructive surgery. I made sure that the surgery was scheduled the week after a herceptin treatment and two weeks before the next one. This way I was sure that the drains would be out by the time I needed to have another treatment. No issues.
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I also had my mastectomy and reconstruction while getting herceptin - I had the herceptin the day before surgery. No issues here either.
I would ask you onc again for the Herceptin or a better explanation of why you should not have it.
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Weety -- is there a heart scan or test you had that showed some cause for concern re: your heart? I can understand (I guess) the cessation of the Herceptin while getting rads to your left chest. But I confess I've never heard of stopping Herceptin while undergoing surgery. What is the risk there? I think it might be worthwhile to get another opinion on this (from another oncologist) to find out why you can't resume Herceptin once rads are done. Especially since you are getting it once every three weeks, why would it matter if you're having an ooph/hyst or not? It seems to me you can do both. Mind you, I'm not a doctor and don't have all the info about your specific case... but this is just to say I've never heard of foregoing Herceptin while having surgery! I had my MX, for example, while continuing regular Herceptin treatment.
I agree that you need not worry about having been off Herceptin for 6 weeks, though. And how great that you got it once a week for the first six!
Lilah
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I am very late--like 5 pages--in answering this, but I think that the fact that I had a year of Herceptin in '03-'04 while stage 3 (not stage 4) was confusing to someone. My rate of Her2 overexpression was one of the highest that my onc had ever seen. He called Eric Winer at Dana Farber and a few other experts and they all said that despite Herceptin being unproven in stage 3 at that time, that my onc might want to go ahead and give it to me. I did not enter the trial because my onc did not want to risk my being placed in the control arm. We did a year of Herceptin as an experimental drug and later the trial results proved it to have been the right decision. And, of course, I dodged the heart damage bullet.
Hope M.
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Thanks Hope for sharing!!
Did you have TCH, or ACTH?
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Question: how do you know your rate of HER2 overexpression? Is it the Ki67 number? (I believe my Ki67 number was 42, which is not super high but not low either).
Thanks,
Lilah
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I'm sorry to say that I don't know how Her2 is measured now. My cancer cells were trying to make 17 copies of themselves every time they divided. So my tumor was highly mutated and was 8 by 9 by 2 cms.
Anyone else?
Hope M.
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Sorry, mmm5, forgot to answer your question. I actually had Taxotere-Adriamycin-Cytoxan 6 times at 21 day intervals. This was before the studies with dropping the Adriamycin. It was a killer treatment plan!
Hope M.
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Just chiming in (hope this helps?)... I had TCH, because my med onc believed it is the best course of action for hormone negative, HER2+ patients. I continued Herceptin during my 1st surgery -- left mast -- then throughout all my left side rads (33) and had no heart problems, as verified by echocardiograms.
However, on a different note -- my PS wanted me to wait on recon (DIEP) until a month or two after my last Herceptin infusion ... and she didn't want me to do a trial on neratinib either ... I think she believes that they might interfere with healing of the flaps.
Gayle
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Thanks all,
I don't have a huge problem with the short break from herceptin for rads (I kind of see the point) but now that I'm looking at extending that "short" break into a longer break, I'm getting too nervous. I think I'm going to try to schedule my surgery in between treatments like someone above mentioned. Hopefully I can get my onc on board with that . . . Last time I asked her again about taking the break while on rads, she said, "No one knows when or how long it takes herceptin to do its job. Maybe, they'll find out that giving it intermittently with short breaks in between will end up working best!" I hate getting the "NO ONE REALLY KNOWS" speech!
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weety911 - I know exactly what you mean about the NO ONE REALLY KNOWS speech. I have heard it multiple times since January 20 when they had to stop my herceptin after 17 times. I have to have faith that I believe I have been told in Canada the standard given (or at least in BC) is 17 or 18 and I thought I read that about some parts of Europe too, and then there is the Finland study of only 9 weeks. Hopefully we are good!
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It is correct that in Canada, 17 herceptins are given. I had mine at 3 weeks intervals. I began in November and finished in Sept. I did 16 treatments and opted out of the last one which would have been in Oct. 09. My onc explained that no one knew how many tx's were required and that doing 16 and not 17 would not matter...he told me about studies in Europe where, as blondie mentions, 9 wks has been studied. A friend who has her2+ and who lives in the Netherlands said they don't give herceptin there. She is taking an AI and after 8 yrs is still NED. There are many women who have not had herceptin, or not taken the full regimen and they are fine. I'm not saying to not do herceptin, just that the drug is not understood totally. How many tx's are done in the US? Is that based on what is good for the patient, or based on how much money the drug companies receive for giving the drug? Just wonderin'.
tuckertwo -Dianne
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tuckertwo - I soooo am asking the same question as you regarding the drug companies, it was my first thought when I was wondering if I have gotten enough herceptin. I think you hit the nail on the head so to speak.
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I think 17 three-week treatments are the norm in the states (17x3=51weeks) hence the "year" of herceptin that everyone talks about on this site. I have heard of some gals who have gotten 18, but I think 17 is much more common.
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blondie: I try not to wonder too much but, that said, there is so much money to be made in the cancer industry. Do they really want a cure? Hmmmm.....
weety: Canada follows the same protocol. I still think 'they' need to individualize giving herceptin. Some women probably need more than others, some women need much less. Maybe those who do well would have anyway w/o herceptin...just my opinion/thoughts, I'm certainly no expert!
Does anyone know if getting herceptin once a week is better/worse than getting herceptin every 3 weeks? Again I've heard pros and cons but no consensus. On the pro side, I heard that you get a less toxic dose every week so it is less hard on the body, is that true? On the con side, toxic is what chemo is about so maybe every 3 weeks is best?
tuckertwo - Dianne
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"Do they really want a cure?....." Tucker, I'm not sure if you are kidding.
For the record - I work for big pharma, and I have 3 thoughts about your question:
1. I absolutely understand why people are upset about the cost of medicine. Perhaps costs have become so high, that the perceived benefits of new medicines are becoming obscured by peoples' anger at the costs.
2. Big pharma employees and their families get and die from cancer. My brother had melenoma, my father had prostate cancer, and now will probably die of MDS (a hematological malignancy). No magic protection shield for my family. So you are mistaken thinking that we don't want a cure.
3. Do you think Herceptin would have been developed if the possibility of huge profits wasn't making the risk worthwhile for Genentech?
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Just wanted to add something about Herceptin. According to my onc (provided that I understood him correctly) , Herceptin is NOT a chemo med, rather it is a medication that was developed to work in conjunction with the chemo meds. That said, this might be why the side effects from Herceptin are so different from chemotherapy medications, thus no hair lose from Herceptin, etc. Thank heavens, I am hopeful to see my hair start growing back once I am only on herceptin every three weeks!0
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weety911 - I got Taxol with herceptin for 12 straight weeks last summer, done with that September 30, next week got the herceptin alone and then every 3 weeks from there until January 20 when I was supposed to get another 3 week dose and then my ejection fraction was not good. Soooo I am wondering for me if going to a higher dose once every 3 weeks just finished my ejection fraction off. Poll: Who got herceptin for 12 weeks in a row with Taxol or taxetere and then once every 3 weeks and who got it only once every 3 weeks from the start?
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Herceptin is a monoclonal antibody which attaches itself to any cancer cells and signals the immune system to kill the cancer cells.
Also, you have to realise that there are ladies being kept in remission by herceptin, something we forget. It's absolutely fantastic!!!!
In Australia we are lucky in that the government pays for our herceptin - to the tune of $70,000. Not so lucky in New Zealand where early bc patients have had to fight to get it.
I am having my herceptin every 3 weeks with the taxotere and carboplatin.
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Blondie -- I've only ever gotten Herceptin once every three weeks. I started it the day I started the Taxol. I started chemo with Adriamiacin (sp?) and Cytoxin 4x DD every two weeks then moved to Taxol 4X DD every two weeks and Herceptin every three. Finished ACT November 9 and will continue getting Herceptin once every three weeks until next fall.
So I fall into the "once every 3 weeks from the start" category.
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I got herceptin every 3 weeks from the beginning for a total of 16 tx's and opted out of #17.
tuckertwo
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Hi suepen,
Yup, that is correct; herceptin is a monoclonal antibody. It works in about 50% of patients. The problem I have with herceptin is that there is no way to tell if it's working for a particular patient. It is not measurable in the blood. There is no way to tell if the immune system is reacting or not. If we survive it's because of the herceptin. If we don't then 'they' can say the herceptin didn't work for us. Either way the company (Genetech) has it covered...sorry, I don't want to rain on any parades including my own but that is my understanding of what herceptin does and does not do. The fact that many her2+ women are doing fine and have never had herceptin, years out from their dx, also makes me wonder.
tuckertwo
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I'm getting Herceptin weekly, until my 4 (or 6?) chemo treatments are complete. Then Herceptin infusions will happen every 3 weeks.
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tuckertwo:
For us node neg patients, we don't even know if there are any cancer cells in us after surgery. Do you want to take the chance? Even if it only works for half the patients, I'd rather have it than not. My onc says it has made such a difference to survival. He was pleased I was HER2 because of herceptin.
Sue
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Does it also mean that if you have Her2 overexpression, the overexpression is only on the breast part or on the whole body?
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Hi, Y'all!
A patient navigator with our local Breast Cancer Resource Center told me about a study on Herceptin and thought y'all might be interested. Here's what she said:
There was a large study in Europe showing that 6 weeks of Herceptin was just as effective (without heart issues) as what we do here in the U.S. which is one full year of treatment. Of course, one study is not enough to validate that finding and others are being done to see if this is truly the case. It may be 5-10 years before we really know for certain if that's the case. If it's true, then it's news that will be welcomed by patients everywhere.
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I got herceptin every week while I took 6 rounds of taxotere and carboplatin (t&c every 3 weeks), then started getting the larger dose of herceptin every three weeks. I'll continue getting it until I've finished a year, by October.
Herceptin actually searches for the protein that Her2+ cancer cells produce. That protein causes the cells to make more receptors, which makes the cells multiply faster. Once it finds the protein, herceptin plugs those receptors so the cell doesn't continue multiplying.
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Diane -- Can you post links to info about Herceptin only working in about 50% of patients? This is the first I've ever heard that.
Thanks,
Lilah
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