How do I cope with waiting to start melanoma immunotherapy after stage 3b diagno...

The waiting period before starting treatment can feel incredibly difficult, especially when dealing with worries about what might be happening in the body during that time. These feelings of uncertainty and anxiety are completely normal for someone in this situation, and many others in this community have experienced similar emotions while waiting for their next steps in treatment. Connecting with others who have been through similar experiences with stage 3b melanoma and immunotherapy might help provide some comfort and practical insights during this challenging waiting period. The community here has many members who understand what this journey feels like and can offer valuable perspectives.

All understandable, I had the same situation. Started off with a mole that came back positive, surgery then a year later found a lump in my right breast area. It metastasized which lead to another surgery and 23 lymph nodes removed. It’s scary and changes your life. Don’t look up things, it only makes it worse. I have been doing immunotherapy for over a year now with good results but we have to keep positive and believing. This app has been a great positive to reach out to people experiencing the same thing. I wish you luck with your treatment and will be thinking and praying for you

Thank you William. Just got the call I start my first treatment tomorrow. Have you had many side effects from it?

Early on the only side effect I had was itchy skin but my dermatologist gave me some cream which helped. After a while it did seem to subside but I have been on Opdivo for over a year now. What do they have you on, if you don’t mind me asking? I was getting it by IV but after a year plus my veins have built up scar tissue so I just started the Opdivo subcutaneous shot which is so much easier and faster, no longer have to sit there while the IV drips through. Anyway, the itchy skin was the only side effect I had, a little fatigue but not too bad. I am also 58, I hope your treatment goes well and if you have any other questions please reach out. It’s nice to have a community like this where people understand what we are going through.

I was told Opdivo I will find out exactly tomorrow. Interesting how you said your veins built up scar tissue. I wonder why they don’t just do it that way. Thank you for your kind words, it is very nice having a community like this; I don’t feel so alone. Wishing you well

Hope your treatment went well. Please reach out with any other questions. Hope you and your family have a great Thanksgiving.

It went real well… so far no side effects. I hope it stays that ways. Thank you and Happy Thanksgiving to you and your family!

How are you feeling? Any side effects popping up? Hope you are feeling good and stay positive!!

I understand completely what you are going through. I was diagnosed with a 4B melanoma and after two years of immunotherapy, I am now in complete remission and have been for about a year. I had no side effects other than some fatigue and chemo brain where my memory wasn’t as wonderful as it should be but what a small price to pay to have life extended. I get PET scans regularly every four months and so far so good. Just hang in there and try to stay as positive as possible. Immunotherapy is a wonder drug.

Hi Lisa, so happy to hear your news!!! If you don’t mind me asking what immunotherapy drug did they have you on? I have been on Opdivo for a little over a year and they recently switched me to the subcutaneous shot from the IV due to it becoming harder to find a vein with the scar tissue and such. I have been a little nervous about it being as effective but my doc assures me it is. Anyway, apologies to bother but it was great to hear your news and gives us all hope.

Thank you for that🥰 I started off on two drugs for the first three treatments. One of them began with an I and I’ll be danged if I can remember it, but it was only used for three treatments because it affected my liver. Normally it is used for four treatments and in spite of my liver numbers, I had great results. After that it was straight up only Nivumolab( sp?)….the results have been nothing short of incredible. I have been off any immunotherapy or meds for about a year now and the scans are still coming in clear. I just stay positive, focus on my life that it is now and try not to become too stuck in the negative thought process which, believe me , is a tough thing to do. I learned to trust the process and trust my sense of humor. Some days are (as I’m sure you all know) tougher than others. By the way, during the immunotherapy I also had radiation a few times ( no s/e) and it was a 100% successful and a splenectomy where the very last particle of cancer had decided it was going to make it home. So far so good.😊

I did three round of radiation about a month ago but they are waiting til January for my next scan. I was diagnosed with metastatic melanoma of my right breast, they gave me two immunotherapy drugs before the surgery for few rounds then removed the tumor but then it decided to find a home on my T9 vertebrae. They did a bone biopsy which did come back negative but it grew in size between my last scans so they feel it was a false positive and did the radiation along with the immunotherapy. As you know there is a lot of scanning then waiting and like you said there are good days and bad days but it does help to be able to connect with people experiencing the same thing. Thank you again for responding and congratulations on your news. Stories like yours gives us all hope. Thank you again!

Great news, Lisa, congratulations. I agree it’s stories like that that gives us hope. I started having waves of nausea and stomach cramping and several trips to the bathroom. The whole lasts about 2 hours weird I know. It’s been 7 days of this so I thought it should be a side effect from the treatment but the nurse said that it doesn’t normally occur like that. 🤷‍♀️ I have my next treatment on the 23rd of December. Hang in there William, sending thoughts and prayers your way.

Sharon and William, I so appreciate you sharing your stories. Everyone’s cancer is different but it just seems the medicines get better. The treatments get better results and sometimes just staying positive or maybe ,as I call myself delusional, you get through it. I know it sounds like just words but really keep up the positive spirit if you can. It does wonders for your mental state.❤️

Thank you Sharon, you as well. They gave me Zofran for the nausea and it did help with nausea. Will keep you guys in my prayers and keep positive thoughts and thank you both for your responses. Hope you both have a great holiday season with your loved ones and the new year brings us all positive vibes and good news.