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- This topic has 6 replies, 5 voices, and was last updated 8 years ago by
sister of patient.
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- March 1, 2018 at 3:56 pm
Hi! I was diagnosed with stage3 melanoma in late 2016. Had lymphnode biopsy then had the rest removed. Started Interferon Alpha2b in February 2017 and finished in 2018. Ive tried so many forums online to find out about life and effects after you finish but came up with nothing. If anyone who finished treatment could help I’d be immensely greatful.
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- March 2, 2018 at 6:06 pm
Hi there, You've found a great place for your question but you might want to post it again as your subject line is confusing and I suspect people with helpful information may not have read your post as a result. I have not been on interferon myself so I cannot be more helpful to you. Best of luck to you.
Cheers!
Maggie
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- March 3, 2018 at 12:06 am
Hi – Can I ask where you are located? Also, were/are you being seen by a melanoma specialist? Asking because interferon is no longer the stage 3 adjuvant treatment most folks are offered now.
Immunotherapies such as Ipilimumab (aka Ipi or Yervoy) and now Nivolumab (Nivo – even more effective than Ipi) or targeted therapy (for those with BRAF mutations) are far more effective, though approvals for nivo and targeted therapy are very recent..
Interferon is thought to be effective in only about 4% of cases. Because of that low rate, combined with the fact that most people who endure it are sick and miserable for an entire year, even several years ago (when there was nothing else), many who were offered it were refusing. If you do a search for "interferon" on this board, you'll see that the majority of posts are at least a couple of years old or more … so, it may be tough for you to find someone to share info with.
Back to asking if you are seeing a mel specialist (you definitely should be) because it's hard to believe that a specialist would put you through this in 2017, unless you are in a country where other (ipi, nivo) immunotherapies aren't offered. I wish you the very best outcomes from what you've (likely) put up with!!!
Barb
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- March 3, 2018 at 11:21 pm
Hi, thanks for your reply. Im from Ireland and I’m not sure wether my oncologist is a melanoma specialist. I was only offered interferon.. it was that or wait and i couldnt take the chance.. even if the chance was as low as 4%. Ive only recently had my genes tested.. they said it could take up to 5 months to return. Im 23 and I’ve never been reckless in the sun or used a sunbed. My uncle passed away 8 years ago from what started as melanoma and spread to other sites and other members of the family had it.. so im pretty sure its gene related. But i won’t know until gene results come back. I’ve to see my oncologist this month and I’ll definately ask about the other treatments you mentioned. Thank you. -
- March 4, 2018 at 12:04 am
Hi Anon, I would want to know if your Oncologist tested your original tumor to see if you have the Braf mutation. It is very common in younger Melanoma patients and it open up the options of treatments if you were to progress. Most Oncologist are giving Immunotherapy treatment first for stage 4 and they are using either of the two approved Pd-1 drugs (nivo or pembro). Targeted therapies are also given if you have the Braf mutation, I have a link for others in Europe that are stage 3 as to what the standard of care is, quite different than the US. Interferon is still being used at stage 3 in Europe as standard treatment. https://www.youtube.com/watch?v=Y5ysCono4IQ
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- March 4, 2018 at 2:38 am
Hi again – Yes (as Ed's post states too), looks like they are not yet offering better immunotherapies as adjuvant treatment for Stage 3 (in Ireland anyway), however, most of the "heavy hitters" – Ipi, Nivo (both as mono or combo), Pembro and Tafinlar (dabrafenib) are now in use for stage 4, which is great!
I don't know if you can "google" your oncologist but if you can find a bio online, it should state what his/her specialty is, if there is one. Definitely talk to your onc about immunotherapy possibilities should you ever progress (hopefully you never will!!) and ask about the BRAF status of your melanoma (as Ed states – it's found thru genetic testing of the cancer. Just in case that's confusing, it's not the same thing as the genetic testing you recently underwent for yourself).
Unfortunately, one doesn't have to be "reckless" with sun exposure any more to develop mel – and even though you may find you're genetically inclined somehow, it appears that Ireland has a growing incidence of it and other skin cancers – skin now being the #1 cancer. I'm so sorry that it's taken a toll on your family and I sincerely hope you never progress.
Again, wishing you the best, always!!
Barb
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- March 3, 2018 at 4:31 am
I'm stage 3 also and finished interferon in Jan of 2015. Life after interferon is much more tolerable than life while taking interferon. What I've noticed most since off the interferon is I still have trouble falling asleep and staying asleep at night. I was so miserable at night while on interferon because my injections were at night, so the side effects made it difficult to sleep. I have neuropathy on my right side which is tolerable. I lost a lot of weight while on interferon but have gained it all back plus some :(. I also lost a lot of hair during that time and it has all come back in. I feel great! Life without interferon is amazing. Good luck to you
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