- February 21, 2019 at 2:37 pm
I’m newly diagnosed Stage 3a. My melanoma specialist suggested “wait and see” with scans every 3-4 months. While my oncology surgeon said he would start immunotherapy if I were his sister or wife.
I’ve been doing a lot of research and talking to several other melanoma patients and I feel that I should move forward with immunotherapy. However…since this is considered preventative as currently I am NED, however no one knows if there are still cancer cells floating around waiting to attack me again. But here’s my question….I know the standard course of treatment for Opdivo is typically 1 year…12 or 24 doses. However, I’m wondering how quickly does the treatment start doing it’s job? Maybe I don’t really need an entire year of it? Makes me wonder if a few months of treatment would be enough to make a difference and potentially kill any remaining cancer cells that might be there. And then of course continue with regular scans. I would think some is better than none. I guess my thoughts are…if 12 months of Opdivo is the treatment for Stage 4 with visible tumors then is it “too much” for Stage 3a NED?
i guess I’m concerned too that if I really didn’t need it now…will it be as effective when / if I should need it in the future.
I appreciate any and all comments!
- February 21, 2019 at 3:05 pm
I'm not sure there is any solid scientifically backed answers for your questions, as adjuvant immunotherapy is still considered such a new option. Researchers are still trying to answer the question on "when" it's ok to stop treating stage IV patients (both with and without visible disease). Too many factors come into play with each individual and their immune system's response. I suppose the bigger question you could pose to yourself would be "Can I mentally tolerate a wait and see approach?". I'm the super aggressive type, sooooo… wait and see would crush my soul. That said, you'd also have to consider potential side effects of the Opdivo and whether you are willing to dive into those odds as someone who is currently imaging as NED. You're in an incredibly difficult position full of personal choice, with no concrete answers as to the "best" standard move.
- March 3, 2019 at 4:39 pm
Thank you Niki for your response! I appreciate it! I decided to move forward with immunotherapy as like you, I’m not a wait and see kind of girl.
I just checked out your website and read your story. Seems like you are doing well and staying ahead of this monster. It gives me hope so thank you for sharing!!!
- March 5, 2019 at 7:41 pm
You're going to find yourself very close to the front edge of immuno use as adjuvant treatment (outside of trials, which have tight parameters). This will be both great, and "well… we're really not sure", as you move on down the road. Welcome to the pool of "research facilitators"! May you continue mela-meat free!
- February 21, 2019 at 4:47 pm
Hi Holly –
Sorry to hear you are in this situation. It really is a difficult decision, and I dont think there is a wrong answer. I was diagnosed 3A june 2017, and after surgery and lots of research started a year of Opdivo in October. I finished October 2018 and have to say it was all worth it! I feel like I have done everything I can, and maybe that will keep this evil disease at bay. I had lost my ex-bf to melanoma just months before my diagnosis, so I wanted some extra assurance.
I have no idea when/if the Opdivo worked. and struggled with the length of treatment also. But I always had faith that the drs had the research that backed a 12 month treatment length for 3A. If it comes back, I know there are OTHER immuno drugs that could be used, so that was helpful in sticking with it.
The once a month treatment -which started halfway thru my treatments -made it MUCH easier – was hard to get psyched up for every other week visits to the clinic- so hopefully that's an option if you go for the Opdivo.
Best of luck – feel free to contact me.
take care- Beth L
- March 3, 2019 at 4:44 pm
Thank you Beth for your response! I did decide to move forward with treatment. In fact I had my first one on February 22. Felt really good after and was hoping that maybe I wouldn’t have any side effects but yesterday morning I woke up with a rash pretty much all over. Interesting that it took a week for it to hit me. Did you have a rash at all? Did you have any side effects?
How often are you getting scans and what type of scans?
Did you notice any difference of going to monthly treatments vs Bi/weekly?
Appreciate your time!!!
- February 21, 2019 at 4:48 pm
Hi Holly, just to add to what has been given to you already, there is a good series from Onclive, video's that feature a panel of expert melanoma oncologist talking about the new standards for adjuvant stage 3 treatment. The series was made last summer and there is 4 or 5 as well as the one I will give you. Onclive is worth joining to keep up to date on data and new findings, they don't send you stuff so no worries there. Best Wishes!!! Ed https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-options-in-melanoma
- March 3, 2019 at 5:33 pm
Thank you Ed for this link!! It was very helpful in helping to make my decision to move forward with treatment. I had my first treatment last week and thought I tolerated it well. But just yesterday, I have a rash all over. Not real itchy but just spots and rash. I hear that’s a common side effect.
- February 21, 2019 at 10:13 pm
Hi Holly. As has already been stated, there is no right or wrong answer. You really have to come to a decision that YOU can live with. For me, personally, if I'd opted to watch and wait and it came back or progressed, I would never have forgiven myself for not doing everything possible to prevent it.
SarahTXParticipantHi Holly! Looks like we are in the same boat…3A, though I have yet to have a PET scan. My doctor told me today that we will be doing Opdivo. I am definitely freaked out, but I guess the odds of it working are surely better now than later. I have also totally changed my diet (since yesterday, but I’m motivated and excited) and started taking CoQ10 today. My doc is skeptical about the CoQ10, but I figure it can’t hurt. So we’re going to attack this beast with dynamite, I guess.
- March 17, 2019 at 5:04 am
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