› Forums › General Melanoma Community › I’m not trusting the statistic,,,need help making the rescission to have treatment !
- This topic has 12 replies, 4 voices, and was last updated 5 years, 3 months ago by Bethharte.
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- January 30, 2019 at 2:49 pm
My husband recently had two cancerous lymph nodes removed ( he was diagnosed stage 3 melanoma) and his latest PET scan shows he’s cancer free. His oncologist is prescribing opdivo immunotherapy….the problem we have is that I have MS and 10 years ago the doctors prescribed interferon to me and it made me sicker than the ms ever has…and I still have side effects to this day…we both have serious doubts about immunotherapy…..can anyone help?
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- January 30, 2019 at 3:27 pm
Monalisa61 could you give some more detail about your husbands original tumor removal ( path report details) like depth of primary, ulceration etc. Also, when you say he is stage 3, is he been staged 3a or 3b,c,d etc? Makes a big difference as to how aggressive he should be with treatment. I did interferon back in 2012 and I hear you loud and clear when it comes to worrying about side effects from treatment. Some things to consider with adjuvant treatment have been covered in a recent ASCO serier on Onclive peer exchange, here is a link to some experts talking about adjuvant treatments and how they are now approaching treatment with the new drug approvals for stage 3 folk. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-options-in-melanoma
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- January 30, 2019 at 3:32 pm
I am sorry for what you and your husband, have, and continue to go through. Interferon sucks!!! It is horrible and though years ago was utliized in the treatment of melanoma ~ we found that it did liitle good, had no statistical impact on overall survival and made folks extremely ill and miserable!!! Those are statistics and they are true!!! However, immunotherapy today in melanoma world has saved thousands of us.
I was diagnosed with Stage 3 melanoma (positive node after cutaneous lesion was removed much like your husband in 2003). The only treatment available at the time was 'watch and wait' and interferon. I knew what interferon did (and didn't) do…so I watched and waited. Another cutaneous lesion was removed in 2007 with negative nodes that time. In 2010 I developed melanoma brain and lung mets. After radiation to the brain and surgery to remove the upper right lobe of my lung, I was then NED (no evidence of disease)….but….I was also Stage IV. I was lucky to gain entry to an early NED trial of Nivolumab (Opdivo) with an arm for Stage IV patients with active disease and another for those who had been rendered NED thru surg and/or radiation like me. I and my fellow ratties took the drug for 2 1/2 years and did very well….compared to those treated with nothing or interferon and were part of those leading the way for FDA approval of the drug for Stage IV patients in 2011 and as adjuvant more recently.
Immunotherapy (anti-PD-1 (Opdivo or Keytruda), or anti-CTLA-4 [ipilimumab/Yervoy]) are certainly not without risk. But, I would do it again in a heartbeat. I know I still have one due soley to my treatment!!! Further, though it is a little more complicated a decision….I wish I could have done it in 2003…when I was Stage 3.
Here is a primer I put together they may help you see how far immunotherapy (and other melanoma treatments) have come as well as info regarding administration, side effects and outcomes:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html There is also a glossary to acronyms frequently used at the end.
What we choose to do to treat our melanoma and care for our health generally is exceedingly personal. However, after my last treatment in June of 2013 – having been faced with the prospect of 6-9 months to live – I remain NED for melanoma! Now that's some stats that are worth getting behind!!! Hope this helps. I wish you and your husband my best. Celeste
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- January 30, 2019 at 3:38 pm
Here are a zillion reports on adjuvant melanoma care generally if you are interested:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant
celeste
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- January 30, 2019 at 3:59 pm
And finally, the question you pose and suffering I can only imagine folks like you and Ed have endured….pushed me into completing this post that I've had sitting in my files for a bit:
Again, sorry you and your husband are having to deal with all this. I am sure you will develop a plan of action that you feel is best. I wish you well. Celeste
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- January 30, 2019 at 5:19 pm
I was diagnosed with stage IIIA SS Melanoma in 2010. After complete resection of tumor and lymphnodes in left groin I chose to do the Interferon therapy. I did four weeks IV and 48 weeks self subcutaneus injection. It was rough. I knew the odds, statistics and physical challenges that would come but I weighed that against the mental and emotional aspects of not using everything at my disposal. I was afraid if I didn't use it and had a recurrence I would regret not trying. Mental and emotional health and outlook have a huge impact on our immune system and I wanted mine at peak preformance. I lasted the year and remained recurrence free until this past October when I found a small lump in the region where my lymph nodes were removed. I have turned out to be lucky again as all the remaing nodes tested were negative. though there is no pathological proof I believe that due to the fact not all lymph nodes can be taken and tested one of the ones left had microscopic disease. The adjuvant Interferon helped my body fight it for the last few years until it finally started to grow. It was removed on January 7th. In February I will start Opdivo, Nivolumab, as an adjuvant treatment just as I did Interferon years ago. Opdivo has a statistical 85% success rate of shrinking tumors and discouraging recurrence while Interferon had 20%. As Melanoma is one of the trickiest of all cancers, cells can hide for years and people have been know to have recurrence as much as thirty years later I will most decidedly choose Opdivo or wait and see. This is my experience and thoughts. In my mind stage III is way to close to IV to not take advantage of all the new and breakthrough therapies we have in are arsenalt now.
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- January 30, 2019 at 6:43 pm
Hi Anon, here is link for your consideration about the 20% number that you used for interferon. The study published in 2017 showed no (Zero) advantage over observation in an adjuvant study of Ipi. https://www.oncologynurseadvisor.com/melanoma/induction-therapy-confers-no-additional-survival-benefit-for-intermediate-risk-melanoma/article/635136/
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- February 2, 2019 at 6:50 pm
Here is a little checkmate 208 data for RFS and over all survival for adjuvant Nivo vs Ipi, not sure where Anon is getting 80% from??? https://news.bms.com/press-release/corporatefinancial-news/bristol-myers-squibb-receives-fda-approval-opdivo-nivolumab-ad. https://www.cancertherapyadvisor.com/asco-2018/melanoma-sustained-benefit-nivolumab-ipilimumab-risk/article/770925/
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- February 2, 2019 at 6:51 pm
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- February 2, 2019 at 6:52 pm
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- February 3, 2019 at 6:44 pm
The link shared said "page not found" I am getting my statistic from My Oncologist who is a leading Melanoma Specialist at Juravinski Cancer Centre in Hamilton Ontario and has been working with Nivolumab for what he says is "the last ten years".
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- February 1, 2019 at 4:51 pm
Immunotherapy has come a long way in ten years' time. It's good you are aware of the pitfalls of Interferon, which used to be a drug of choice for Stage III melanoma patients. The side effects were harsh and the trade-off was questionable. The treatment lasted for a year and if you were one of those at risk for a recurrence, it could delay the recurrence by about a year. But in the meantime you were dealing with some harsh side effects.
When I was diagnosed in 2010-2011, my options were Interferon, "Watch & Wait", and a clinical trial. So the fact that your hubby is being offered Opdivo is pretty awesome. While drugs like Opdivo are not without side effects, they are not as severe as those of interferon. Opdivo has saved lives of Stage IV melanoma paitents.
Here's a thread from this forum by folks who have done both Nivolumab (Opdivo) and Interferon:
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- February 3, 2019 at 6:52 pm
I agree completley! When I was diagnosed stage IIIA in 2010 Inteferon and "Wait and Watch' were my only options. Because of my somewhat reduced risk factor as a IIIA I was not a candidate for the clinical trials offered. In hindsight I am not sure if the Interferon did anything to delay my recent recurrence but emotionally, I wasn't ready to just move to the watch and wait phase.
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