Is Herceptin really the miracle drug it is made out to be?
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rozem,
That is what really bugs me about the issue of the standard recommendations, in that we aren't allowed to participate in trials like SOFT, or TAILOR-X, to offer those who are premenopausal or perimenopausal and who are in places where the spendy coverage is limited, so that they could consider the option of doing cheaper OA plus trastuzumab instead of coverage for chemotherapy that then runs out before they can do a full year of trastuzumab.
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kayb, I belive there was only one trial I would have been eligible for. The trials were already showing positive results at the time. I would have done OA as an alternative to chemotherapy, and asked about it at the time but did not receive any discussion about it and did not know that indeed at that time one clinical trial had shown that it was equal to doing CAF.
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Leggo, I am very sorry you did not have a good outcome. And as you said I feel the stats can be manipulated, or at least are not clear to the average person, which is why I made this post, for clarification. For instance when they make claims like "This difference in disease-free survival is a 24% lower risk of recurrence among the women who got adjuvant Herceptin" that 24% seems like a significant amount. But what does it really mean? Although correct, it is very misleading. When you read that in actuality "Nearly 79% of women who got adjuvant Herceptin were alive with no recurrence (disease-free survival) compared to 72.2% of women who didn't get adjuvant Herceptin" it seems like a much smaller benefit, i.e, a difference between the two groups of only 7% of actual people who benefitted.
I am sure many people are as confused as me as to how to read the stats, and by presenting it in those terms, I wonder if people are mislead into thinking that the benefit is a lot greater than it really is. (Of course, that might be because I am trying to make myself feel better if I don't get it!)
Kayb, so true that this is all a crap shoot. Thanks so much for the moral support...but when everyone is promoting this as a "miracle drug" and you will not be able to get it, anxiety level is even higher than usual !
Bluefox, I really am not trying to make any point, just trying to figure out how beneficial Herceptin really is. I find all the information out there very confusing. Thanks for saying that I will still get SOME benefit even if I don't complete the entire course.
My goal is to weigh whether or not it is worth it in the long run to put my family into debt to pay for this astronomically expensive drug (my husband wants to do what it takes, even if it means taking out a loan to pay for this). I am not sure at all if it is worth it to do so, especially when there are articles like the one posted by Alaska Angel, that say "about half of HER-2 positive patients do not respond to trastuzumab therapies due to various resistance mechanisms ".
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Deblc - please do not listen to AA.
Given your diagnosis ie stage 111c - if I were you, I would do everything I could to get the whole course of treatment.
Have you tried writing to the manufacturers yet?
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Susieq yes I did contact them, they don't do anything for those living outside of the U.S.
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I wish I could help you - it's just not fair.
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Deb, I had no idea of your situation. I thought you were just asking in general. Knowing now that you're trying to make a personal decision, my apologies for weighing in.....none of my beeswax. Hope whatever you choose works out for the best.
Rozem....HA! Didn't you just hate that frickin' stats class? I think I skipped half and napped through the other half. You make a very good point too. The evidence would have to be compelling for our gov't to dish out that kind of dough. I distinctly remember when Avistan was all the rage for us late stage gals. I was a little pissed that it wasn't paid for (especially since reading that there were several gals in the US getting it) until I talked to my onc at length about it. Turns out, in his experience it did more harm than good for bc patients, even killed some, and the benefit would have been an extra six months, tops. Thought maybe he was just yanking my chain to stop me from bitching. Low and behold, he was right and the drug was pulled for bc shortly thereafter and I quietly noticed that those at the clinic getting it for lung cancer quickly passed away.
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I remember a trial where Herceptin was so successful they stopped the trial and started giving it to everyone - can't find it though.
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There are all sort of interesting points being made here.
Deb, I know you weren't making a point - my comments were actually directly at the author of that annoying article.
Yes you are right that (say) a 25% or 50% decrease in (say) cancer deaths at ten years might actually translate into only a few people out of a hundred being saved. But this depends on the risk for those people. If you have a very low risk cancer with only (say) 2% mortality then halving this only saves 1 person per hundred. If your remaining risk is high (say) 50% mortality then using Herceptin to halve this has a huge effect - an extra 25 out of a hundred are saved.
This is why high risk cancers need the most aggressive treatment and people with low cancers are advised they need less treatment.
As you are IIIc you have the highest risk of recurrence so it is important to get as much treatment as possible now even if it means borrowing or moving back to Canada.
Alaska, In papers I've read and risk calculators I've played with, the difference in risk between chemo and no chemo gets bigger with time. This means the benefits increase with time implying that it works to reduce both the risk of early and late recurrence. If the gap closes with time ie both groups had similar risk at (say) 20 years, it would be reasonable to assume that chemo only delays recurrence, which then catches up with some of the patients. But I've never seen papers with results that look like that.
In the Predict calculator, they assumed that Herceptin only reduced the early risk of recurrence (out to 5 years) because they didn't have good data on long term benefits. Now they know it reduces the risk of later recurrences and this means that Predict underestimates the benefits of Herceptin.
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Here are some preliminary results from the trial that compared 6 months with 12 months of Herceptin.
http://abstracts.asco.org/144/AbstView_144_131379....
This showed that for the patients in the study at around 3.5 years, 10.8% in the 6 month group had disease relapse versus 6.2% in the 12 month group.
The risk of relapse within 3.5 years will be different for different groups of patients, and your risk is probably higher given your stage, so the impact will be greater.
If we could look 10 years out, the study will show more relapses which will also means greater impact.
NB The above results are subject to statistical uncertainty due to the relatively small numbers in the study.
But my (layperson's) advice is get as much Herceptin as you can afford (up to one year's worth) - you want to get that relapse risk as low as you possibly can.
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Leggo please don't apologize, I wanted as many people's opinion and input as possible, and I am glad you weighed in
SusieQ that's why I said in the other thread that I think Australia and Canada are civilized countries because of free health care . Not to get political but I don't know why so many people in the US were against that. In Jamaica, the public health care system sucks and to get any kind of meaningful private insurance is beyond the means of the average person. Unfortunately it's hard to justify paying a lot of money for insurance when you have other immediate pressing financial obligations, until the day you need it!
Bluefox thanks very much for all the info, you have made the stats more comprehensible to me
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I think you'd be hard-pressed to find ANY cancer treatment that worked for every patient, given the heterogeneous nature of the disease and the way it cleverly evolves to outsmart those treatments. Herceptin has a proven track record of being effective in a large portion of HER2+ patients, so it's become the standard of care.
That having been said, until genome testing technology catches up and gives us really specific insights into the unique profiles of our cancers and is capable of identifying pathways that can really be targeted with personalized treatment, the current trend seems to be toward offering HER2+ patients a double-pronged approach to shutting down the HER2 receptors, which is why so many neo-adjuvant protocols now include both Herceptin and Perjeta. Bombarding those receptors with the two drugs they've got for it is the best hope available at the moment. It's a source of constant annoyance to me that Perjeta isn't automatically offered in conjunction with Herceptin to everyone diagnosed with HER2+ cancer, but I guess there's a fine line to be walked between being extremely aggressive and overtreating a patient for whom Herceptin alone might very well be sufficient.
That fine line is probably more visible when you're an insurance statistician having a theoretical discussion than it is when you're actually the person trying to keep the disease from returning to your body. I'm pretty sure that if those people walked a mile or two in our moccasins, they'd be hurling drugs at us as fast as their arms could throw them.
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all I can give is my personal experience. I feel lucky that I was diagnosed right after the cleopatra trial. I received taxol for 18 weekly infusions along with herceptin and perjeta every 3 weeks. After taxol ended my scans showed complete resolve in my 12cm tumor in my breast, my 3 liver lesions were all around 1cm (a 50% reduction), and my spine met did the same as liver mets. I have continues on h and p every 3 weeks and will continue it until it stops working or se's are too bad. I started treatment oct 12, ended taxol in feb 13...so 16 months of h and p alone and my mets have actually continued to reduce in size. One lesion is not even detectable now. I also got very excited to see that the cleopatra trial actually doubled life expectancy for stage 4 her2 patients from 18-24 months to 45 months!!!! So I am just one person. With little to no side effects from h and p. I hope you can figure out what is best for you!
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Wow K - you are amazing - just shows you how wonderful Herceptin is.
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I wish Herceptin worked for me. I took it a few years ago from March to the first of June. I was pulled off of it because my EF dropped from 65 to 42. I was even given a lower dose. I was breathless. I could hardly walk up the stairs. I had no energy. I knew the her2 positive cancer put me at risk for a recurrence. My oncologist hoped the few months I took it helped as she said some European studies concluded that a few months of herception was enough for early stage cancer. At that point I was told I had a 50% of a recurrence, which left me a little concerned. Unfortunately two years later, I'm again dx with the her2 positive cancer, grade 3.
I do not know what to do. There is a part of me that says again just do surgery, trust God, and live. Forget about further treatment. I did a little research AGAIN and I'm coming to the same conclusion I had the first 4 bc dx. Call me stupid, don't know. This whole thing has to make sense to me. I hate that I'm going through this again.
However, there is a new treatment ... heat therapy? Maybe I'll look more into it.
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Hindsfeet, have you been on Perjeta at all? I wonder if it's possible to explore using it instead of Herceptin, given your heart issues on the latter. I hope you find a way xoxo
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Herceptin has been very good to me. Dx with mets pretty much from the start (liver and bone), I was NED after three cycles of TCH and have stayed that way for now six years. I have been on Herceptin only after I finished my chemo in August 2008. I also see a naturalist and have been on a lot of supplements all the while too which I think help. Who knows how much or for how ling Herceptin will be my miracle drug but so far I am a believer. I wish it worked for every her2 woman.
Jen
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From what I read Perjeta has the same side effects for those sensitive to Herceptin. I haven't had all my scans yet so I really don't know what is going on...other than the biopsy, which is on the chest floor wall, her2+++, invasive, grade 3 nodule. There are a few new treatments such as heat therapy/radiation. I came here only to see what is new out there figuring if anyone heard about her2+++ new treatments you all have. Apparently there is nothing that new at least what would not affect my heart.
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I was able to participate in a clinical trial that allowed me to have neo-adjuvant tx with Herceptin, Tykerb and Femara. I've just finished up the 24 week trial. I've had a complete clinical response (couldn't even find any tumor to biopsy at the end of the trial) and will have left mastectomy June 23. My onc is expecting a complete pathological response as well (NED.) I'll follow up with 12 weeks Taxol and continue the herceptin x one year. My echo and EKGs have shown no change in heart funtion and I've had (literally) no side effects, have continued to work throughout. This website has good information on the most recent research on HER2 : http://www.breastcancer.org/search?utf8=%E2%9C%93...
While on the trial, I improved my diet and exercise regimen and have participated in a mindfulness group,as well as done yoga...I'm a believer in integrative health! However, the article in "Health.net" appears to be based on hearsay instead of hard science. I would just hate for anyone out there to be scared off of some good treatments out of fear. Love to all of us out there going through this journey together!
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Hmmm...my sister was on Perjeta last year when it was first approved for metastatic cancer; her onco gave her a list of side effects, but heart involvement wasn't among them. Of course, it's usually given with Herceptin, so anyone who's on it has already been warned about potential heart issues, but I don't believe that Perjeta alone is known to cause any significant issues with LVEF.
There's also Tykerb, which is an oral-dose HER2 kinase inhibitor (again, used primarily on patients with advanced disease). It has some liver implications in that it may increase your liver enzymes, but pretty much all chemo/drug treatments impact the liver on some level as it's the organ that processes toxins.
Maybe ask your oncologist if there are other options? Both of these drugs would be off-label use on you, but there are also dozens of clinical trials currently underway featuring HER2 bio agents - in fact, I think the E75 vaccine just moved out of Phase II trials. Once again, I wish you luck - I'm headed for an echo tomorrow to assess what Herceptin is doing to MY heart, so I (along with every other woman who visits this forum, I'm guessing) perfectly understand your concern.
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I credit and thank Herceptin for my NED status and my ability to keep working! I strongly support the right of everyone diagnosed with HER2+++ to have the option of taking Herceptin. And for the development of better targetting tools. I was diagnosed at the beginning of December 2007 wi stage IV grade 3 ER/85% PR/20% Her2+++, mets to sternum, nodes below sternum but not to underarm, a big honking tumor on left side in muscle on chest wall & toward center wi mets below on a couple of ribs plus a spot in the cartilage on left shoulder. After getting my port, I started on TCH in December of 2007. My mets pain went away after the the first infusion. After 4 TCH pet showed a really good response. After 2 more TCH I had lumpectomy (twice to get good margins) followed by about 30 or more IMRT radiation treatments. Another PET scan in August-September showed NED. I have continued on Herceptin + xgeva (before that zometa) + arimedix and then the generic. Subsequent tests show that the areas of bone mets remodeling. There has been no change in my ejection fraction. After my 74th birthday in January of this year I went to Herceptin infusions every 4 instead of every 3 weeks so I only go in once a month - except for the one month of the year I go in twice. I take a lot of supplements to counteract the side effects of anastrozole on my joints and arthritis, and hopefully anti-tumor supplements such as mushrooms, curcumin and green tea extract that can pass the blood-brain barrier because herceptin cannot. About 30-40% of us stage IVers end up with brain mets and i am trying to tilt the scale a little in my favor. I love Herceptin. My oncologist says that if and when there is any progression, there are other options for Her2+++.
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Thanks for sharing Miraclemile, you really lifted my spirit. I don't understand about blood brain barrier? Never heard that before. I have 3 Herceptin treatments left. Love and hugs to everyone.0 -
lovewins - Herceptin is a large molecule drug and when infused can't cross the blood brain barrier - in other words, can't treat a metastatic spread to the brain.
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India, fighting the high price of herceptin, was trying to bring a biocopy of the drug in. Of course that got blocked. A similar battle was fought over HIV drugs with positive results.
Herceptin kept me stable for almost two years.
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Thank you SpecialK....very interesting. Thank you for all you do SK, I have learned a lot from reading your posts.
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hey there been awhile since i've been on BCO. herceptin damaged my LVEF and i had to go off it for a couple of months while heart repaired...i got a cardiologist, 2 new heart meds, and an ECHO every 90 days out of th deal...but on the good side herceptin and perjeta are keeping me NED!!! I passed my 1st year cancerversary and will be on herceptin + perjeta infusions for the rest of my life. that's the important part...they are keeping me alive and the side effects are not the focus. I look at what I can do now not what I used to do and can't now. hope that helps to all
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Positive: I see you were diagnosed with mets 3 months after your first DX. I was wondering how the mets was diagnosed and if you were in treatment at the time
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I need Herceptin to be a miracle drug. A few years back I took it for about five months and was taken off of it cause my EF dropped from 65 to 42. I was having a lot of heart palpitations, and breathless. I've had my second infusion...so far so good. I was dx with stage 1 again after my mammo in April. I asked for a PET scan and I went from stage 1a to stage iv. it was in my lungs, under my sternum, hiler limph nodes, spot on liver and spine, femur and a few more spots. I am hoping it is not in the brain. If so, shoot me now.
I will be taking Herceptin with Perjeta...also bone hardening shots along with hormonal shots of anti-estrogen...everything but chemo. I'm hoping for no side effects, and to be strong for my friends and family. Trusting God for wisdom as it is a lot to do right now...will be going through 3 weeks of radiation beginning a week from Monday. During that time no Herceptin/perjeta.
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Hindsfeet, sending lots of positive thoughts and energy your way. I hope it works!!
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