Hallo my melanoma was removed at my right ankle and I had also affected lymph nodes . I am on immuno therapy and will get it another 2 years . Has someone have any idea if I have to have this immuno therapy a live long that is really bothering me .
I noticed your post hadn't had any replies, so I just popped in to say hello. It sounds like you're having a difficult time while the graft is healing and that it's starting to get you down. I know that facing long term treatment can affect us physically and emotionally so I hope everything heals soon and that you'll feel able to start up some of your usual activities again.
I haven't any relevant experience to share, but I can see from your profile that you're a member of the melanoma group. Hopefully someone from there will pop in to help soon. Meanwhile, I wonder if it might help to post your question in the Ask a Nurse forum here https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_a_nurse/. Sending you lots of good wishes for the future.
Hi , I’m not sure if I’ve got this right, you are on a trial for the combination ipilumamab and Nivolumab due to a spread to your pelvic and abdominal lymph nodes. Ipi only every has 4 doses, Nivo I don’t know how long that is given for as a precaution but, as you had to sign a trial agreement perhaps you already have that info somewhere or have access to a specialist nurse or your consultant to help explain that to you in your case.
My own experience on starting Pembrolizumab (which is similar to Nivo) due to melanoma in my pelvic and abdominal lymph nodes and left ovary was that I was originally expecting I would be on Pembro for life, until it no longer worked. Then as my own reaction was so good that at my 9 month scan I was clear, I was expecting to have it for 2 years. At one year I was given an option to come off Pembro if I received it for one year and was clear for 6 months, but most in an earlier trial had it for 2 years at least, when it had spread beyond the lymph nodes.
I don’t have the experience to answer your question if your question is when can you safely stop having Nivo, and feel only your own medical team can answer that question. In theory you can stop a trial at any time but you need to know the consequences of stopping, and if you had a further spread what options might be open to you and weigh that up against you continuing with treatment in the hope to remain cancer free for a very very long time, they are hoping decades.
I hope in some way my non answer helps. I was hoping to be off treatment for a very long time but after one year mine came back, and I will never know if it would have come back that soon on treatment if I had continued or if I had continued longer on treatment instead of stopping at 1 year wether I would be a complete responder for years and years. So for me I’m back on treatment and hoping for the best and not looking to far ahead, as I don’t really know how long I will be on Pembro for. Will it be until my next scan and taken off when a further spread occurs, or will it be 1 or 2 years as I become clear and they think this is sufficient, or if some melanoma can be seen on a scan in 2 years will it be for longer? It has been doing my head in while I waited to see my first scan results which I had 3 weeks ago. My treatment is working again, and my treatment continues.
The uncertainty of how long treatment can continue for and how long will your own immune system cope for afterwards can be hard, but there can be help available in the form of counselling or hope courses. Your hospital team has a remit to help with the psychological side of things as well. I know you have said before you work long hours and have found it hard to cope. I don’t work and sometimes have difficulty with fatigue to continue as actively as I would like on all days, it’s just the day and a few days after treatment and will get better the more active I get, because that’s what happened the first time.
My advise would be talk to you team make notes on what you need to discuss, you may feel you only have short appointments but if you have questions prepared your team will usually take what ever time you need to talk things through and suggest ways to help. There is always the Macmillan support line as well.
0808 808 0000 open Monday to Friday 9am to 8pm
Please feel you can vent whatever you are feeling in the melanoma group, or ask for others experiences.
Hallo Justin I am sorry to hear that . Well only one lymph node was a little bit worse at my lung what they said but I am fine . I had chest infection before and urine Infection. I went back to work on Monday after 6 month it’s not very easy to go back to work . I had this combination immuno therapy before I had a lot of side affects my immune system was completely down . How are you getting on then ?
I finished my two year nivolumab immunotherapy and got the all clear after the last CT/MRI/PET scans. 20% of return but at least I am eligible to return onto the treatment if/when it returns.
I had to come off six months to go because I was already healing so came off treatment and went onto steroids to clear the chest/lung infection. Then went back onto it to finish the last few goes. All good now.
I used the St Georges in Tooting London throughout. They were all amazing.
