HER2+ and no chemo for early stage?
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It also takes some bravery to choose any treatment -- and particularly harsh, difficult, prolonged treatments, when study conclusions fail to clearly state their limitations.I would have been and would be quite happy to volunteer.
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kayb, I would have probably made the same choice you did in that case.0 -
Kayb,
On the one hand, patients are expected to make their own independent choice about treatments that are vague in terms of the result for most patients. On the other hand, the information provided is limited.
At a minimum, ethical disclosure should include that kind of open acknowledgement to include a simplistic physiologic potential rationale for recommending chemotherapy when a study is phrased so carefully in support of including chemotherapy, particularly given that patients are instead usually given a simplistic sales pitch description of potential cell death as being the primary basis for recommending chemotherapy.
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VR, a clinical trial that includes only those who are elderly is unlikely to demonstrate the basis for effective treatment for those who are pre, peri, or marginally postmenopausal if in fact menopausal status is affected by chemotherapy in younger patients (which we already know it is). It can provide helpful info for the elderly and I'm glad the trial is being offered, but by no means should it be used to demonstrate whether trastuzumab used alone is effective in general.0 -
AA...it has been stated to you numerous times by me and others on multiple threads that it would be unethical to do a Herceptin ONLY study on younger patients AND if they did open such a study to younger patients, it is unlikely that they could get enough BRAVE younger patients to join. So, are researchers being unethical by NOT pursuing finding out? Are they being unethical by stating they can't offer an opinion? AA, let's agree to disagree and let other newbies decide for themselves what they think is ethical.
And Kay....I agree that health reporters can and should do a better job...and I also think that the peer review that takes place at our finest medical journals could use a little scrutiny. That said, IMHO, I disagree with AA's idea that researchers are UNETHICAL by choosing to withhold information regarding the LACK of Herceptin ALONE data or desire to study Herceptin ALONE.
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kay...I agree! And....most important studies do discuss the limitations of previous studies as well as the limitations of their own studies and what future trials might wish to study. That said, one can't blame researchers and question their credibility when their foremost concern when designing a study is to first do no harm. Sadly, nothing either of us can say, which I might add has been pointed out to AA numerous times before on countless threads, will convince her otherwise......I respect that she is entitled to her opinion. But as the esteemed late US Senator Daniel Patrick Moynihan once said....everyone is entitled to their own opinion, but NOT their own facts. I stand by the fact that most researchers and clinicians are ethical and do not wish to do harm to their patients. Implying otherwise, which AA chooses to do often regarding this subject is just plain wrong.
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Hi all, glad to see more discussion here.
Kayb, the study you mentioned is so relevant, and to help me put things in perspective, one of the doctors I consulted actually illustrated it this way:
"The research shows relative risk reduction from Herceptin is similar in all subgroups. But if the absolute risk is low,the absolute risk reduction is small.
If we were to take an analogy from the supermarket, there are two products priced at RM100 and RM10 respectively. Getting a 40% discount translates into RM40 and RM4 savings respectively. That is basically what you get from Herceptin, 30-40% relative improvement in survival benefit."
Hope the illustration helps others in a similar position to make a decision. The analogy makes it really clear for me, yet I'm still finding it challenging to make a decision (especially on the chemo part, and especially since an oncologist told me Herceptin is more effective with chemo and it's not clear whether it can be a stand-alone drug at this stage). ARhgHGhghg!!!
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yensmiles. That is a very hard decision to make. When I was diagnosed I would have fought for chemo. I thought I would have to. But i was Her2 grade 3. That bumped me up. However I could only take 6 months of Herceptin. I hope that is enough. They were looking at stats to see if 6 months was enough but I don't know if they got a sample large enough.
AA. I consider that the doctors are adding Herceptin to the standard of care. If you had a large cut doctors always sewed those up, and then antibiotics came so then they sewed them up and added antibiotics. They wouldn't stop sewing the cuts up and just pour antibiotics on it would they? Just to see if it worked? Wouldn't you insist on them doing what they know works? Adding the abx to the stitches? That's what I think is a good comparison of chemo and herceptin. Chemo was first and helped people. Then Herceptin came and helped more. But to take away something that works and now works better together, makes no sense. That's my opinion .
Much love.
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I was DX with IDC, 11 mm, grade 3, her2+...I had a lumpectomy, clear margins, no nodes.., chemo A/C, radiation and herceptin for a year. Tamoxifen. My nose also dripped constantly from the herceptin. I am 6 months out of herceptin and my nose isn't dripping anymore, but I do notice my nails are soft like a babies...not sure what from. I live in Canada and I haven't had to pay for anything..
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Bearcub, it's good to hear your nose isn't dripping anymore.. hope your nails grow stronger.. i have read a few posts mentioning that.. the nails brittle/cracks/thin.. like you i had clear margins, no node, and in fact Grade 2.. but that HER2+ thing.. sigh! it really helps hearing how calmly you describe your treatment.. did you have any other side effects from the chemo? i think if i go with herceptin, and choose this one oncologist that I'm comfortable with it would be AC (doxetacel + Cyclophosphamide). Glad you didn't have to foot the bill yourself.
Moonflower, haha, it's ironic isn't it, how you would have fought for chemo, while i feel like I'm fighting not to have chemo by finding everything and anything I can get hold of to tell me it's okay to NOT have chemo. Thank you for the analogy too, and I think Herceptin 6months results was pretty close to the one year results.. yet they need more studies to conclusively say it's okay!
I'm hoping that if i choose the HErceptin route, halfway through it, i'd get to stop! That'd be huge cost savings for me since the medical bills would be out of my own pocket.0 -
Regardless of your choice of treatment, yensmiles, I am glad to have provided some additional information for you to consider as part of the process. That is what this website is about -- helping each other, regardless of whatever decision each of us chooses to make about treatment.
Sometimes, there is a tendency to feel and react very strongly in favor of our own opinion, especially about a topic that involves life and death. For example, based on the way the trials for trastuzumab unfortunately were done, we don't have as much information to document the need or irrelevance for continuing to use the known previous dismal effectiveness of chemotherapy in treating bc as part of treatment for HER2 positive bc. I would like to point out that while the ethics of continuing that practice are debatable, I don't claim it should not be done. The point I am making is that the referenced study failed to do one thing:
As VR pointed out: "most important studies do discuss the limitations of previous studies as well as the limitations of their own studies and what future trials might wish to study"
While valuable information would have otherwise been suppressed, my point is that the cited study given did not include the disclaimer, which serves to continue to promote the unproven impression that trastuzumab is more beneficial when given with chemotherapy than when it is given without it. That is a piece of information that is genuinely important to know IF true "informed consent" is being provided.
Having that disclaimer on only "most important studies" is considered "good enough" by some. My comments about the lack of true informed consent are disdained by some. I consider the bias created through the lack of true "informed consent" quite relevant for people in the process of making decisions about treatment.
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Perhaps doing neoadjuvant treatment with trastuzumab used alone could also provide some helpful info for us all.
One problem with doing more intensive treatment initially is (as some who have recurred despite the treatment have found), the person who recurred often is then barred from some clinical trials offered, because it would not be possible to separate out cause and effect due to the previous treatment.
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AA - you keep failing to point out that you are probably still alive 12 years on because you did have chemo. I know you suffered a permanent impairment as a result but your bias should not be used to try and convince someone else that they shouldn't have chemo. The fact remains that chemo and Herceptin is the best treatment one can have for HER2+ve cancer.
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hi all. Just thought that I'd share. I'm triple positive - my details are below. My treatment is FEC - T. Round 2 of FEC is next wed then final round three weeks after. The last 3 rounds will be taxotere with herceptin. Herceptin will then continue for a year. I will then be on tamoxifen for 5-10 years. This seems to be fairly standard for triple positive in Ontario
So far no major SEs and I hope that this continues. My MO is the chief of oncology at the hospital and highly respected so I am comfortable with his reco
He feels that my prognosis is good with a 15-20% chance of reoccurence. Not much I can do but live my life. Sure I cry every now and then ( like last night ) but breast cancer is no longer a death sentence and I know several survivors of 10+ years with no reoccurence
Aside from cancer I am fairly healthy. Never had to deal with a chronic condition my whole life other that juvenile epilepsy which stopped on my early 20s. Even now I still feel good other that mild SEs such as fatigue headache stomach cramping and nausea which all happened within the first 8 days of treatment
I am now on day 18 and my hair is falling out and I've had chills but no fever. I've been trying to walk approx5 miles a day which I think has helped
I rush everyone good health!!
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Hi Susieq60,My onc didn't think so. He recommended chemo as a long shot. I just wasn't as educated about it then as I am now. People usually choose based on knowledge and/or their ability to tolerate risk. I can tolerate some risk, as long as I understand the pro's and con's. No one was being straight with me at the time about the con's of doing chemotherapy, so I went ahead with it. Chemo provides no benefit for the vast majority of early stage bc patients, since most of us wouldn't have recurred even if all we had was surgery.
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Sorry AA, but the studies would disagree with you.
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Thanks for sharing Footballnut! I might be having the same treatment as you.. (still in decision-making mode)... today I consulted an oncologist who suggested that, and he also mentioned the FinHER study (a small sample from Finland where the doctors gave just 3 doses of Herceptin with Taxotere and followed by 3 doses of FEC and the results were good, comparable risk reduction with that of having the one year Herceptin). Google it if you'd like, the research paper is accessible and i read it, though i don't seem to be able to link things here despite the bar that allows us to do that!
SusieQ, AA, being early stage has it's disadvantages in decision making for me.. and today's oncologist probably helped me the most. He too was hesitant to recommend a treatment.. as i am neither very high risk, nor very low risk.. somewhere "in between" because of the HEr2+ status..and pretty much solely because of the HEr2+. His suggestion of 3 doses of FEC + 3 doses TH was after hearing more about my concerns regarding side effects. Surprisingly, despite what research indicates, many people here in Malaysia take to taxanes poorly. I heard it the first time I consulted an oncologist (and at that point in time, I thought she was lying and wanted to promote perhaps other drugs), then I heard it again from other doctors I consulted, and today the oncologist also mentioned that he is a bit suspicious of the results concerning taxanes side effects because the population here takes it poorly. I asked for his observation on how many patients get nerve damage from taxanes (docetaxel/paclitacel) and he said 50% for paclitacel and 20% for docetaxel though docetaxel gets other equally nasty muscle aches, which for some patients last beyond years. Well, what I'm trying to say is, I think research papers/science do tell a lot, and perhaps a lot is also not known at this point in time. The oncologist also told me, (when i commented that I'd be flushing money down the drain since there's no telling whether I'm responsive or resistant to the expensive drugs that I might choose), that that's most likely the case because for my stage, the risk isn't that high.. yet he also admits, if it comes back and is mestatasised.. it's more difficult to treat.. and prognosis is poor.. so he can't really dissuade or encourage me to what might be the best treatment. His recommendation though is the regime that Footballnut is having, which gives me the option too continue Hercepting if I want, or stop at 3 cycles which might be good enough (as indicated by the FinHEr study). It really is very different here in Malaysia, I think more people are probably against chemo than for it, yet will do as doctor thinks fit. Plus, because costs is a real issue here, it carries weightage which oncologists would discuss with patience.
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and SuzieQ, thanks for pointing out Herceptin, I don't think I'd go for chemo if I am not getting Herceptin, and I will do chemo to get Herceptin (as for now, there's no significant study to say it's okay for adjuvant treatment to do Herceptin alone). So now, i think i've reached a 90% mark in terms of doing chemo.. arghghghg it's still scary.. and maybe it's my surgical brain, i find myself for it one minute, then against it the next, and crying episodes at times thinking about chemo side effects!!!!
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yensmiles,
In a way, the advances in communication both make it easier and harder to make the choice (primarily affecting those who are dx'd with early stage bc). Back when I was diagnosed, online support was nowhere near as organized or accessible as it is today. And, like you, I live where the large research facilities and treatment cost a LOT more and are less easily accessed. In some ways that too makes it easier and harder to make the choice. Out here overtreatment is less prominent, whereas in areas with all the access, there is more of a tendency to sell overtreatment, with more medical systems being dependent upon keeping that system rumbling.
In looking back, what bothers me the most is the failure to adequately and honestly present both the upsides and downsides of the choices available, to help patients make the choice with as much accurate information as possible. I think you are getting more than I was able to get, yet I see from both inside and outside the medical environment that it still is very much the case that unless one persists in wanting to know the downside of doing more extensive treatment, the general focus is to gloss over the downside and to criticise those who try to provide it.
Any of us can recur at any time, regardless of whether we do intensive/expensive treatment or not, and as your doctor said, once recurrence happens it can be more difficult to control.
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AA...No. There is NO overwhelming overtreatment in areas where there is good access to care. In fact, the OncotypeDX test would NOT have been developed, had oncologists not questioned whether or not patients were being over treated! Over diagnosis, over treatment and what some believe is "over screening" is currently be fiercely debated among researchers and clinicians. Today, physicians have begun to be proactive in working with the patients to come up with a treatment plan that is individualized which includes INFORMED CONSENT. The dialogue between clinicians and patients have changed in the decade since you were actively treated and has changed even more so in the 4 plus years since I was diagnosed.
And yes, you are very correct that many patients will do well with just surgery without adjuvant therapy. However, since Herceptin was discovered, adjuvant therapy has improved the mortality rates SO MUCH, that those patients today who are diagnosed with aggressive HER2 positive tumors are now approaching the survival rates of those patients with HER2 NEGATIVE disease. While we can't individually identify WHICH HER2 positive patients are the ones who are surviving, the percentages speak for themselves and Suzie is correct on that note as well!
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VR, I do think yensmiles is receiving more accurate info than I received in 2002, and while testing like Oncotype is another step forward, it still is only minimally helpful. I have no problem with those like Susieq who feel that recommended adjuvant therapy is always "the best" answer. I only have a problem with the general failure to provide accurate and adequate information to patients about the down side of adjuvant treatment.
You agree that "many patients will do well with just surgery without adjuvant therapy" . I don't water it down, and stand by my comment "Chemo provides no benefit for the vast majority of early stage bc patients," not just "many" of them.
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AA... No I do NOT agree than many will do well with surgery alone! You took my words out of context! Until there is a way to know who does well, the numbers speak for themselves. Doing the Standard of Care of surgery followed by adjuvant therapy improves mortality! Period!
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yensmiles - my tumour was smaller than yours and my oncologist (one of the best in Australia) was very clear that I should have chemo and Herceptin. There is a 23% chance of recurrence - too big a risk for me to not do it. The treatment halves that risk.
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VR,Although trastuzumab wouldn't have done squat for me personally even though my tumor was HER2+++, I agree that using it has improved results for others who are HER2 positive (even if only for a while for some), and that makes it worth doing. I see no clear evidence indicating that chemo is useful in addition to trastuzumab for early stage HER2 positive bc for patients who are HR+, other than for the possible effect on the cancer of bringing on menopause (which can be done much less harmfully by other means).
I accept that you did not intend the phrase "many patients will do well with just surgery without adjuvant therapy" to be interpeted literally, but I'm not sure what you meant by it.
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AA...the other means you are referring to is ovarian suppression...Researchers are aware of "chemopause." Presently, there are several ongoing studies trying to determine if ovarian suppression, surgically or by chemical means, does improve survival. Those trials' preliminary results will be known later this year, or early in 2015.
AA....I'm sorry that your bad chemo experience continues until this day. I'm also sorry that your clinicians did a poor job of providing you with proper informed consent. I genuinely mean that! However, as you question and criticize chemotherapy's role in treating cancer, because your bad experience persists, I think others need to be aware of your clouded perspective.
Feeling as passionate as you do regarding chemotherapy, perhaps directing your concerns and thoughts towards the NIH, NCCN and the American Cancer Society might be more helpful.
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Regarding my statement which you took out of context....I do not understand what it is that you don't understand. Have you ever read about the discovery of chemotherapy and its use for childhood leukemia? Before the discovery of chemotherapy, some cancer tumors responded well to surgery alone. Clearly a cancer that develops in the bloodstream will not respond well to surgery. With the discovery of chemotherapy, leukemia is no longer a death sentence for many children. As new chemos were developed and used for other types of cancers, mortality rates improved. So you ask, why do I say many patients do well with surgery alone and isn't that a fact? That is a loaded fact taken out of context. With individualized treatments which include surgery, chemo and/or targeted therapies, the facts speak for themselves. Most cancer patients are surviving longer. And with more and more brave patients entering clinical trials, the future looks brighter.
And getting back to ovarian suppression and the upcoming preliminary results of the SOFT and TEXT trials, my oncologist is not getting as excited as I am. He said that most of the people enrolled had good prognostics to begin with, so statistically significant data shouldn't be forthcoming for a long time!
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Yes. Those trials are going to be helpful to some patients. As we have discussed elsewhere, there are several trials in progress, all of which prohibit those who are HER2 positive from participating in them, to be able to then apply the trial data to their situation. Once again, there is a failure to investigate the benefit or lack of benefit of chemotherapy for those who are recommended to receive trastuzumab.0 -
AA....and have we NOT ALREADY discussed MANY TIMES BEFORE why those patients were excluded? AND have others including AnniceMD discussed WHY? I am going to explain WHY once again, not for YOU but for others who are new and might want to know why....BECAUSE IT WOULD BE UNETHICAL FOR CLINICIANS TO DO A TRIAL, OR FOR THAT MATTER TRY TO RECRUIT PATIENTS INTO A TRIAL THAT ARE HIGH RISK OF RELAPSING AND NOT OFFER THEM THE STANDARD OF CARE WHICH INCLUDES CHEMOTHERAPY. That is why the Herceptin ONLY trial is being offered to a very small group of older patients.
I haven't the time or patience to continue this discussion with you AA. Because we have just been brought back to where we began this discussion. Full circle. One word. ETHICS.
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kayb,Yes, the standard of care has been to use a type of drug (chemotherapy) that failed to work well for HER2 positive patients prior to the use of trastuzumab, and then to continue to use it with trastuzumab without determining what benefit or detriment the chemotherapy provides to that group of patients. The standard of care is to then offer trial after trial to other patient groups to determine whether such measures as ovarian ablation is protective or not, and to continue to fail to determine whether even those HER2 positive patients who are at least risk (stage 1) would also get that same benefit. This then promotes the continuation of therapy that has never been proven to be very effective for HER2 positive patients, i.e., chemotherapy.
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AA. What you fail to recognize is EVEN IF the NIH WAS WILLING TO ALLOW A CLINICAL TRIAL THAT DEVIATED FROM OFFERING THE STANDARD OF CARE, which, by the way they are allowing with the tiny Herceptin only trial of 300 older patients, which we won't even know until 2016, if they accrued enough patients, do you think the NIH would conceivably spend millions of dollars on funding a larger clinical trial that didn't offer the standard of care on one arm and risk not only those brave patients lives, but not getting enough patients to join the trial that would one day potentially not yield statistically significant data? I'll answer the question. No. Why? Because besides being a waste of money, it might waste valuable time and waste lives. Will there be a study designed like you favor? Perhaps. But not in the foreseeable future. So for now, I suggest you stop muddling the issue and stop bashing the researchers that are in the trenches trying to come up with safe therapies. I strongly also suggest that you consider counseling. I've suggested this to you before. It seems that time has not diminished your physical and emotional pain. Rest assured that others appreciate your feelings and how poorly you perceive how you were treated by physicians who were supposed to be helping you. I get it. You don't want others to suffer fools gladly. However, continuing to question over and over again this topic only serves to continue your pain. I wish you peace.
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