› Forums › General Melanoma Community › Failed Opdivo
- This topic has 8 replies, 5 voices, and was last updated 4 years, 7 months ago by MelanomaMike.
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- August 31, 2019 at 12:10 am
After starting opdivo in Feb 2019, all the scans have been improving, except the one in Aug which showed two more spots in liver, got a biopsy done and just got a call from doc office , It is indeed melanoma. No pain no symptoms, I dont even believe i have melanoma. But got to beleive what we see on the PET’s and biopsy results.What are my options now. May be a heart attack is better to finish it in one go ……Crying ……………..
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- August 31, 2019 at 3:46 am
Hi sks2019! There there! Its gunna be ok, THIS IS NOT THE END AS WE KNOW IT! And just because you have new Mel mets doesnt necessarly mean youll stop your Opdivo! My oncologist kept me on atleast 5 more infusions just because it was keeping my Lung tumors in check! (Stopping them from growing) but, on July 10th, it was stopped (plus all surgerys) because 3 new tumors popped up, Intestine, side of Stomach, and right Butt Cheek Muscle…they may keep you on! Feb you started? What, 10 or 12 infusions you did? assuming you did the every 2 week plan and not the Monthly plan. You dont have a Biography here at MRF telling us your story (whats been going on since your diagnosis) is this your 1st Immunal therapy? Theres still a few for you! Pembrolizumab (Keytruda) and Ipilimumab (Yervoy) , did you do Yervoy already? As a combo with your Opdivo?, if not, That may be your
Immune system “Enhancer!”….relax sks2019, you DIDNT FAIL nothing! Your Melanoma needs to be better analyzed for your next Weapon Of Mel War thats all…cheer up….-
- August 31, 2019 at 11:28 am
Mike, started in feb on every 2 weeks and then 3 month scan in May showed good results with no tumor but only little enlarged lymph nodes which tested negative on the biopsy so doc thought opdivo is working and he put me on monthly opdivo until these recent scans that showed the liver thing. Devastated as we all were hoping clean scans this time
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- September 1, 2019 at 1:46 pm
An earlier post said that if melanoma was found in your liver, the plan would be to give ipi + nivo immunotherapy. That plan looks reasonable to me. Melanoma spread to several more of my bones, while I received Keytruda immunotherapy. After I received ipi + nivo immunotherapy, my bone cancer disappeared. -
- September 2, 2019 at 5:12 am
Hi SKS. Sorry to hear about your recent setback. But I’m sure there are other tools in your oncologist’s toolbox to continue the fight. If not, maybe a second opinion would be warranted. One thing you do not want to do is take treatment advice from patients on this message board. There is a big difference between personal experience and medical advice. Here you will find compassion from other similarly situated patients and stories about their experiences that may help you in discussions with your oncology team. Although well intended, some comments cross that line between compassion/experience and medical advice. I’m new to Opdivo and just had my first treatment 5 days ago. No side effects yet and first post-treatment scans will be in 3 months. If there is bump in the treatment road, I will work with my oncologist to find a different path. In reading many helpful posts on this website I have quickly realized that there are many obstacles to overcome. The best way to proceed is to partner with your informed doctor and beat this awful disease. Best of luck.-
- September 3, 2019 at 5:09 pm
@studiodad Appreciate your perspective. Hope your Opdivo journey is smooth and gets you into remission. Good luck and God bless.
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- September 4, 2019 at 7:25 am
It is all very humbling. I love this forum because I learned more about melanoma here than anywhere. Here you get it all! The treatments, side effects, the good and the ugly and you feel better prepared for what is next. No oncologist, even the best melanoma specialist will ever tell you what the patients on here do. Use all this to your advantage. There are only a number of treatments for stage IV melanoma. You either go on Keytruda (sister drug of Opdivo) or Opdivo or Yervoy/Opdivo combo. If you are BRAF+ you have the option of target therapy which is usually used in second line defence since 100% of the tumors shrink however the shrinkage is temporary and 90 % of tumors start growing in 7-11 months. Of course there are outliers. The more therapies you have, even if not effective at first, apparently after radiation or chemo their effectiveness increases. There are always trials as well. Basically, even with approved therapies we are guinea pigs because no one knows the most effective doses, nor the optimal number of treatments, nor why something works for some and doesn’t for others. Having said all this, you are by no means alone and you have many options which you need to discuss with your melanoma oncologist. This is just one bump in the road to recovery. I had four large liver tumors, along with lung ones and after only two combo infusions they have shrunk 50 % in 2 months and another 30 % in the following 2 months even after I stopped treatment. The key with this disease is that at this stage it is a chronic disease and we need to learn to deal with it for the rest of our lives. Although this is one difficult pill to swallow, in the end we are all stronger. I guess that is why we are all warriors!
Wishing you all the very best and I am confident you will get over this bump. Also, please remember that attitude is half the battle!
Melanie -
- September 5, 2019 at 1:22 am
Hi Sks2019, its me again, just read a “reply” here under your post, i cant let this go. Like MelMel was saying, this MRF board is “thee” best board for ANYTHING/EVERYTHING Melanoma, this particular person said that there isnt anyone here who are part of the Medical profession/field and there “is”, dont be missled by this fake news, MRF has plenty of help for you, both on the MRF Forum and when you scroll down when you log-in, the button “under” the Forum button will take you to an Email system of professionals who will answer your questions, or direct to a physician/nurse who can help you with Melanoma. Also, in the upper right hand corner of MRF’s front page, youll see a button that offers you “Science of Melanoma”, & Research of Melanoma and so forth. A “good number” of us here at MRF know more about Melanoma then our oncologist do, i teach my onco when i see her, she, in return, teaches me but shes Not a Mel specialist and we both have studied since my diagnosis, im her first Melanoma patient, alot of folks oncologist are not mel spc., Mel is a different can of worms…i just felt you needed to know this, its ok to continue asking questions here at MRF, we havnt killed anyone yet with our information or opinions…love ya sks!
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