I am starting my OPDIVO journey tomorrow. I was wondering how many participating patients in this forum have had success with either OPDIVO or KEYTRUDA alone? I just had a neck node reoccurrence only one month after surgery and radiation. MDA wants me to leave the nodes in place and just start immunotherapy. I have been trying to read as many patient stories as possible within this patient forum. Now that’s a task being a analytical person. It seems that most stories I read, patients here start on one immunotherapy drug and then end up on a combination. I know everyone is different. I appreciate any input and stories possible.
- May 21, 2020 at 6:35 pm
MelMelParticipantAfter all is said and done, nothing matters more than finding the correct therapy for YOU specifically! As a stage IV patient, I have decided on a combo immunotherapy since it had the best response although it had the most serious side effects as well. You are stage III with a particular subset of conditions so single agent therapy seems logical and prudent. The key is that there are multiple options and hopefully this will work for you.
- May 21, 2020 at 7:06 pm
BubblesParticipantI was diagnosed with Stage IIIb (skin lesion and 1 positive node) in 2003. No treatment other than observation (Yervoy and targeted therapy was FDA approved in 2011, Opdivo was FDA approved for Stage IV patients in 2014, for adjuvant therapy in 2017 – Here’s a report on adjuvant therapy for melanoma and the history of its development if you’re interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuvant-therapy-for-melanoma-state-of.html) because there was no effective treatment. Was followed and gunk in my lungs was discovered in 2010 on CXR. Turned out to be melanoma – had the upper lobe of my right lung removed. Brain met was found and zapped. Developed met on tonsil which was removed. In Dec of 2010 gained a place in a phase 1 trial of what is now called Opdivo. Was in active trial for 2 1/2 years. Last dose of Opdivo in June of 2013. Have been NED for melanoma ever since with no further treatment. Celeste
- May 22, 2020 at 12:23 am
- May 22, 2020 at 1:43 am
A little over three years I had a second recurrence, five months after my second surgery. So rather than a third surgery (and the likelihood of another recurrence), they put me on immunotherapy and I guess this was neoadjuvant. After a year of this it had gradually progressed, we were going to do surgery but instead added TVEC which worked (thankfully). I think evidence for the neoadjuvant approach is improving as I think it gives the immunotherapy something to fight rather than surgery removal and then immunotherapy when there is no obvious target. Its a bit scary not remocing the damn thing but i think its a good option, and if you do end up having to have surgery, the immunotherapy may work better to prevent a recurrence (I think this is the theory). Seems like you have a good plan.
Not sure why they dont put you on the combo, but it is more toxic and risks you being taken off. Probably they keep you on single agent with surgery or even tvec as a backup plan? Good luck Mark
camanParticipantHi Thmoore, found out I was stage 3 late March. Melanoma showed up on my lymph node on my neck I chose to take Keytruda then remove the node after 3 infusions. I think Neoadjuvant Therapy will the standard of care in the near future. The medication worked right away on me. Just had my 3rd infusion 3 days ago. My node feels completely normal. The doctors are now thinking I should take a 4th infusion before operating. Still thinking about that one. I this point I really dont feel there is super rush to remove whatever is left of it. Hope it works out for you. The people that developed this drug should get the NOBLE PEACE Prize. I think you are doing the right thing.
- May 22, 2020 at 3:59 am
TsvetochkaParticipantKeytruda alone got rid of it by my adrenal gland (9 cm!), and in my side, breast, lungs, and lymph nodes. I’ve only recently gotten the all clear, so I don’t know how long this will last, if it will come back, but it seems to have worked really well.
- May 22, 2020 at 7:11 am
- May 22, 2020 at 3:28 pm
I was DX in 2016, stage one, June 2017 it was found in lymph node in groin, then Dec. 2017 PET showed spots on liver…stage 4. My onc put me on Opdivo only due to pre-existing condition of colitis and not wanting to flare it up. By March of 2018 all spots on liver were gone. I had a recurrence in Jan of 2019 in my small intestine that was removed surgically. I have been on Opdivo only for 28 months and recently stopped due to over a year of clear PET scans. I forgot to say I had an inguinal node in my groin that lit up as well along the way, but went away after about 6 months on Opdivo.
So from my experience, you can have success with only one of the immunotherapies. I know I am very lucky with the results I have had so far, and I know that if something new were ever to pop up I can go back on that therapy and hopefully have the same results.
- May 27, 2020 at 10:49 am
My father, after progressing to stage IV (lung metastasis) was given only keytruda and he got to a NED status after 3 months. He has been off keytruda for 17 months now and his last CT scan was clear. He didn’t have any side effects, except some minor vitiligo on his face. Good luck with your treatment, i think, given your staging, you could benefit from a single agent, they can still, should there not be a great response, change it to the combo.
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