TRIPLE POSITIVE GROUP
Comments
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kltb - my eyesight worsened on chemo (for far sightedness). Onc told me this happens a lot with chemo and often improves; said don't get a new script for several months after chemo.
I am almost 6 weeks post and will be seeing an opthamologist for a baseline exam (re: cataracts) before starting Tamoxifen within the next week or two. I expect I'll be going back in a few months for a follow-up to get reading glasses. My eyes were changing prior to chemo to start with, normal for my age.
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I am 55 and therefore don't qualify for the clinical trials unless I talk them into it. Kidding ...kind of.
Omaz...it is my understanding from what the radiologist told me that the microcalcifications on the mammo...in my case were like several lines going toward my underarm from the mass are the cancer spreading out. My gp said she was concerned about the surgery because it would be cutting directly across the cancer, and therefore going crazy once cut in to. It kind of makes sense, but what do I know...I am strictly a layman...or woman. I think that is why they hit you with the meds after surgery...esp radiation...to try to contain the cancer migrating to other areas after being disrupted. This is not a medical analysis....just from what I have been told and what I have read. I am happy to hear fromsomeone who knows factual info disputing this.....I wish it was different in my case especially.
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kltb,
My vision also changed during chemo. I finished chemo the end of May last year and the Dr wouldnt get my glasses until December. By that time the dust had settled from hard chemo. Turns out my more challenged eye had changed...for the better. I also had taxotears so I was seeing the eye dr every 3 weeks during tx.
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NANCE...do the surgery asap! You don't want to wait. It is already worrisome. If I were to choose chemo and herceptin, I for sure wouldn't take them at the same time. Tt doesn't make sense. The Herceptin works in that it locks into the HER2+ protein stopping it from over production. Once it does that the Herceptin being foreign agent in your body flags down the killer cells immunoity to destroy it. If you are doing chemo the same time, you won't have the immune killer cells to destroy the HER2+ cancer cells. I asked my oncologist about this theory and she had no comment. No one else has adequately answered this question for me. Doing chemo with herceptin seems counter productive. If, I were to do chemo (highly unlikely) I would first do herceptin, followed by chemo.
With all that said, those who are younger, immunity seems to bounce back quicker than those who are post menapause.
I'm not 70 and I had no problem getting herceptin alone. A nurse said to me that I was the only one other than a chemo nurse who chose not to do chemo with the herceptin.
If you do a mastectomy they are bound to get wide margins. The nodes is another story. No opinion there.
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Thanks for the input Eve. Herceptin only is my only option after the surgery. I am looking into that now. The one onc I talked to said the research shows it is not effective alone so...I may not do it at all. I am taking one step at a time. Having so much fun along the way!
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Nance - herceptin has been proven to work better with chemo - there are studies that show this. Also microcalcifications are not cancer unless they have been biopsied.
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Susieq58, there are indications to the contrary, after just 3 weeks of trastuzumab being given alone. Because it was then subsequently given with chemotherapy does not mean we can conclude that it "works better with chemotherapy" than without, since chemotherapy significantly adversely affects the immune system and trastuzumab given alone does not:
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nancedawg I didn't have nodes. My margins were clear (although close on one side. My tumor was in the posterior region). My BS thought for sure I would have micromets in the nodes but did not. Tumors are not like a bubble waiting to explode. The concern is making sure all stray cells are removed locally. Surgery and radiation are used in this manner. (Please note I am only talking about early breast cancer). If you have surgery first chemo/herceptin are being used to eliminate any cells that might be in your system. Yes it could also deal with the local area although the blood supply has been disrupted by surgery and might not have fully repaired when you get chemo. I think this is why they do rads.
BTW I disagree with evebarry. If you are going to do chemo it's best to do it with Herceptin to increase it's effectiveness. At least that is what the studies have proved. Then you will finished up with Herceptin for several more months. I would pose the same question she asked to your onc.
Bottom line here is to discuss all of this with the doctors that are treating you. None of us here are trained medical professionals.
Herceptin does have effectiveness alone but its even more effective with chemo. I would do further research on that. I don't know where your onc is getting his/her info.
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Thanks everyone for your breastfeeding info.....fascinating stuff.
Nance, I had a MX. My tumor was just over 2 cm IDC. I am one of the few women here who hasn't had any type of PET/CT scan. It's hard for me to feel bad for you getting them because at least you know you're clear for mets over a certain size. I don't get even that little peace of mind.
I wanted them, but my Onc refuses to do them, even after surgery when they discovered from my SNB that the cancer had spread into the lymph system. (This is a long story, but I didn't allow them to rip out my axilla when it was standard practice in 2010. I allowed them to take 4 nodes, and they all were positive. I elected (based on studies about to come out then) to have radiation to the rest of the axilla (instead of removal) to kill whatever cancer the chemo/herceptin didn't kill. My cancer team didn't like that decision so I was punished with no scans.)
Two years later, now, barring gross disease in the nodes, leaving the axilla intact and radiating is pretty standard tx even with MX. There is still a risk of LE, but it is much lower with SNB and rads than with axilla dissection.
My Onc also refuses to do blood marker tests because they are very unreliable. And I must say I only know one woman in real life whose Onc uses them every year for her. Her markers stayed the same for 7 years after tx, she experienced hip pain, went for a scan, and had mets all over her hips, spine and ribs, but her markers never moved.
Anyway, that's the extent of my "experience" with marker tests. I believe scans are much more reliable than the markers, but even they have issues with not catching things that are too small.
The big pharma theory is interesting. Which is why I encourage you to look at the research, talk to other BC survivors, etc before making the big decisions.
Good luck.
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Just as a side note...Herceptin is not without its risks.
My ejection fraction was compromised with Herceptin, and I had to stop taking it. September is a year since I stopped taking Herceptin and my heart has not improved.
Chemo left me with no lasting effects. Herceptin did though. And it affects me every day of my life.
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Lago,
We don't know yet whether chemotherapy is more effective with trastuzumab, or if trastuzumab is more effective with chemotherapy, or whether trastuzumab is more effective when given alone. We only know that chemotherapy is more effective with trastuzumab than use of chemotherapy alone.
A.A.
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nance...for sure talk to your oncologist, and do pose the question or theory I gave on chemo with herceptin. No one has refuted or given me a logical answer. There aren't enough studies on herceptin alone to say it works better or doesn't. And, if you decide you want to do herceptin alone, I'm sure if you look around, you can find a oncologist who is willing to give you what you want. My oncologist initially pushed chemo, but when she saw how I had my heels dug deep and wasn't about to change, she thought herceptin was better than nothing. After all the side effects of herceptin, she no longer brings up chemo. I now have a low EF, and heart issues, I don't regret the little herceptin I had. I am hoping what I had gave me the antibodies I needed to kill any possible micro mets. For most, herceptin is pretty easy.
You won't know the complete story until the surgical path report comes back. Meanwhile, do some window shopping for an oncologist who is willing to listen to you, and work with you. Don't give up, because one oncologist says no.
You sound a little like myself. Hugs & Prayers, E
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I agree with Eve. Finding an Onc that will work with you, and accept your decisions is critical.
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Regarding chemo + herceptin synergy - here is a very technical article that reviews the synergy seen with various chemo's and Herceptin. It is pretty tough to follow, and I won't even begin to say I fully understand it...but some of you may find it interesting if you'd like to really investigate it further.
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I'm a curious person...check out this article...talks about chemo and Herceptin and the synergistic effect seen with immune cells...pretty interesting stuff:
Abstract
This study evaluated by immunohistochemistry (IHC) immune cell response during neoadjuvant primary systemic therapy (PST) with trastuzumab in patients with HER2-positive primary breast cancer. In all, 23 patients with IHC 3+ primary breast cancer were treated with trastuzumab plus docetaxel. Pathological complete and partial responses were documented for nine (39%) and 14 (61%) patients, respectively. Case-matched controls comprised patients treated with docetaxel-based PST without trastuzumab (D; n=23) or PST without docetaxel or trastuzumab (non-taxane, non-trastuzumab, NT-NT; n=23). All surgical specimens were blind-analysed by two independent pathologists, with immunohistochemical evaluation of B and T lymphocytes, macrophages, dendritic cells and natural killer (NK) cells. Potential cytolytic cells were stained for Granzyme B and TiA1. HER2 expression was also evaluated in residual tumour cells. Trastuzumab treatment was associated with significantly increased numbers of tumour-associated NK cells and increased lymphocyte expression of Granzyme B and TiA1 compared with controls. This study supports an in vivo role for immune (particularly NK cell) responses in the mechanism of trastuzumab action in breast cancer. These results suggest that trastuzumab plus taxanes lead to enhanced NK cell activity, which may partially account for the synergistic activity of trastuzumab and docetaxel in breast cancer.0 -
This is 2012 and yet these studies are years old. I would love to see recent research.
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Well, these studies are from when Herceptin was being studied/developed. If you want to know the theories it was based upon, you have to look at the beginning studies.
If you find recent research, please share.
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nancedawg,
So would I.
Dancetrancer,
Those are interesting studies. However, I am raising a logic question about bias, and perhaps you can explain the reason they use the term "synergy" for their conclusions.
I do understand that the efficacy of chemo plus trastuzumab varies depending upon which chemo is used, but I don't understand why they use the term "synergy", since "synergy" means that combining two or more substances results in each of them becoming more effective, and I don't see where they have proven that. To me, it doesn't prove or disprove synergy, since some chemos may also be having a lessening effect, or reducing the effect of the trastuzumab, whereas other chemos are just allowing the trastuzumab TO work better.
Perhaps if they had clear evidence from trials that they had used trastuzumab alone for adjuvant patients (with intact immune systems, more chemo-naive patients, and lower tumor burderns than with the use of trastuzumab alone with metastatic patients) and it didn't work as well as trastuzumab plus any one of the chemos, that might be better evidence. But as far as I can tell, they haven't.
In addition, with the use of chemotherapy, statisticians have failed to provide for the possibility that for some patients, chemotherapy itself may contribute to further development of breast cancer. I don't think oncs provide that logical and essential information to patients.
A.A.
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My name is Michael and I am in the UK. My wife, Janette died in March of advanced BC. Her original diagnosis was triple negative BC, her nodes were clear. In April last year she had a prophylactic breast removal and developed a hematoma. It was downhill from there and in November last year she was diagnosed with advance BC which had spread to her lung, on the same side as the hematoma. I don't know if there is a corrolation but I feel there is. As you can imagine it has been a traumatic time for my family and I.
I am basically kicking my heels at the moment. I had been so busy caring for Janette and now I have nothing to do. Janette came from a humble background with quite poor education and yet gained a PH'd and was a leading authority on Michel Foucault. I don't want her memory to die, as we, her family evenually die, so I have decided to establish a charity. What I am asking here is for ideas. I want the charity to be specific to triple negative but I am unclear at the moment on what areas to focus on. As it will be Uk based, funding of treatments is not an issue so I am asking for ideas on what areas I should focus the charity's efforts on; should it be education, research. sponsorship? Any ideas you may have will be gratefully received.
Thanks
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AA, I don't feel like delving into it further, just wanted to share the articles for those who may find them interesting or helpful.
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chatterbox2012, your post is very touching, and your efforts to make something positive out of something negative are very meaningful.
My personal preference would be to find some way to encourage the establishment of having all breast cancer patients as well as their tumors thoroughly documented and analyzed at time of diagnosis and followed through treatment for their hormonal status as well as any genetic basis, to try to glean better information as to why tumors (and patients) develop as triple negatives or triple positives or a mixture of those characteristics.
This is the triple positive thread, BTW; you may wish to post on the triple negative thread as well.
But I am just one person here giving one person's impression.
I wish you success. May your wife's life remain fresh in the memories of many.
AlaskaAngel
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dancetrancer,
The articles are interesting and may turn out to be accurate. It isn't easy reading. I'm just not sure whether there is something in there that I'm missing, that favors their use of the term "synergy".
Thanks
A.A.
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AA during the phase III trials back in the 1990 they did have some women on herceptin only. Some did respond some didn't. Granted these were metastatic patients not early stage.
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Alaska Angel
While it's not the entire etablishment I am in just such a study. It's called Nbreast. My SO sent my fresh tumor biopsy tissue to Mammaprint . Mammaprint is a 70 gene assay assessment of the likelihood of recurrence etc.
I then had neo adjuvant TCH chemo and was fortunate enough to have a pathologically complete response to therapy. They are following us and will do further RNA analysis as well.0 -
Correction NBRST..not NBreast.....
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Nance - I really doubt any oncologist would allow you to have herceptin by itself given your positive nodes - fair enough for someone like Eve with neg nodes, but you are in a far more risky situation.
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I was under the impression that the drop in immunity we experience during chemo is addressed with the neulasta (sorry not sure of spelling) shots. I received mine for 5 days, starting on day 5 after chemo. They boost your white blood count and the body's ability to fight infection, aided by the herceptin. Also if you are Grade 3 chemo has been shown to work well on fast growing cancer cells. And of course herceptin is continued alone for 12 treatments.
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We don't get neulasta shots over here - I survived without them.
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We live in 2012 not in the future. We are offered treatment options that have been researched and proven to provide the best chance of survival NOW in 2012.
I am a cancer clinical trial coordinator. I work for an academic institute but before this job I worked for a so called "big pharma" company. The reality is that you are right and most of the current drugs available have been developed with profit in mind. The pharma companies are in the business of bringing new drugs to market to raise their profits - no argument there.
BUT, there are international regulatory rules in place to ensure that all drug trials performed on humans is ethically sound. These rules were put into place after the second world war when it was realised how horrendous the nazi medical trials on their captives/victims were. The rules are laid out in a documents that are collectively called ICH-GCP (International Conference on Harmonisation - Good Clinical Practice). These rules are in place to ensure that only those treatments that are truly proven to have benefits that outweigh the cost of the side effects are brought to market and no humans are harmed during the process.
What has been PROVEN is that surgical removal of an early stage breast cancer tumour gives better survival than no surgery.
What has been PROVEN is that treatment with specific chemotherapy drugs gives better survival than no chemo for many types of breast cancer.
What has been PROVEN is that radiotherapy to the breast, and sometimes the regional nodes, gives better survival than no radiotherapy.
What has been PROVEN about triple positive breast cancer is that herceptin in combination with chemo, and more specifically chemo that includes a taxane class of chemo drug, gives better survival benefit for women than chemo alone or nothing.
None of the above options come without risk. Nothing in life comes without risk really?
There are many theories about what can or can't help increase your/our likelihood of surviving breast cancer, but many have not been proven and remain just theories. It takes a LOT of money to run a clinical trial and this means that many theories will never be proven because our world really does revolve around money and there's not enough to go around...
As I said at the beginning - we live in 2012. Everyone has the right to choose the treatments that are proven now, or alternatively choose to forgo the proven treatments or choose unproven treatments. Just please don't insult "big pharma" or doctors for being "of our time" and selling or recommending proven treatments.
My choices for me have all been based on benefits outweighing risks:
- surgery. Definite benefit outweighing the risk.
- chemo. FEC-T, with me declining Taxotere and choosing Taxol instead based on side effect risks.
- Herceptin. As my cancer was highly Her2 positive the proven benefits outweigh the risks.
- I quit radiotherapy 2 weeks ago after finding that due new information about my medical history I had heightened risk of short term and long term side effects from radiotherapy ie: benefit did not outweigh risk for ME.
- anti-estrogen therapy. Due to start this in the next few weeks and the proven benefits definitely outweigh the risks for me since my cancer was so highly estrogen positive.
This is about as personalised as it gets in 2012. I wish it was more personalised but I have to accept that it isn't...
regards Jenn0 -
Well said Jenn
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