immunotherapy treatment

Hi I was clear from melanoma for 7 years after having a left groin dissection. However it came back to various parts of my body and some of the tumours were very large. I was given dam trap tablets for 7 months and they made some of the cancer disappear. I had more side effects with the tablets but everyone is different   I then went onto immunotherapy and for me it gave me a complete response. I had less side effects with immunotherapy I felt tired 2 days after the treatment ; joint pain and a mild rash at times. I am so glad I had the opportunity to take this treatment as without it I would not be here today living a normal life . It is scary havin* melanoma and you do feel it’s never ending but I do wish you luck. 

Thank you for responding is very kind of you and has given me some hope and whst I should do as all very confusing. 

I'm so glad that you are now well and living a normal life which is a wonderful thing 

Yes I have scans every 6 months now which although daunting gives me reassurance. It was a long journey as my first melanoma was 14 years ago and then a relapse 7 yrs ago . I then started immunotherapy treatment. I wish you all the best and hope you have no side effects. If you do contact the clinic and in my experience they are very helpful 

Hello

I have recently started 12 months of immunotherapy (Pembrolizumab). When I read about all the side effects I thought twice about going ahead with it, but I did. I had my first infusion two weeks ago and so far so good. Feeling a bit tired and I’ve had headaches but nothing worse. When I saw the oncologist he was reassuring about the low risk of my getting serious side effects so I thought it was worth trying. Cancer had been found in two of my lymph nodes so I decided that anything that helps kill off any other cancer cells in me was worth trying. 

Best of luck

Hi Aliwiz,

I'm about 1 year and 1 month into my immunotherapy and I had some bad side effects for short episodes, followed each time with a period on steroids and weaning off steroids (which was a bit tough on my energy levels) BUT I feel normal-but-some-fatigue for a couple of months now. I've already had two holidays abroad this summer and I'm going to France  (fingers crossed) for a holiday in August.

I've been told that even if the cancer is gone, it can come back. Your consultant will be able to tell you about the probability or not of it coming back. I had a Stage 3a melanoma in 2020 and after surgery, it was all gone. Still, they wanted me to have a year of targeted therapy (Dam and Tram pills) to make sure it didn't come back. Ultimately, that didn't work for me - the cancer came back in 2023 - but that was probably because I had to stop taking the targeted therapy for 4 months, while they sorted out a little bit of breast cancer (totally fine).

I had bad side effects from a Combined form of Immunotherapy: a cocktail of Ipi/Nivo. However, it worked very, very well. I was told that the Combined Immunotherapy can cause bad side effects. It turned out to be true, but, you know what? The doctors were ready and knew exactly how to treat the side effects and it was all fine. Since they moved me onto Single Immunotherapy (Nivo), I've been able to settle down on it and I don't have side effects any more, except some fatigue. I can honestly say: Immunotherapy rocks.

Unlike chemotherapy, the side effects don't happen every time you get a dose of it. They just happen randomly and they they stop. I believe maybe 50% of people don't get any side effects at all? Your consultant will know the correct percentage.

I feel really lucky I'm on immunotherapy. I did have some bad side effects but they were managed very well and then they were over. :) 

I wish you well. I did find the journey very confusing and, at times, very scary, but having come out the other side, I can see now that the hospital staff have seen it all before and know what to do . I hope you get all the support you need.

Dots x

Hello Aliwiz,

I’ve not been on here for a while and you have miby made a decision by now but I thot I’d drop a message in case it helps. I’ve had 4 rounds of Ipilimumab & Nivolumab. I didn’t read too much about side effects, I’m stage 4 and put my life in the teams hands. I was terrified the first day they plumbed me in and I saw the treatment bags all hooked up ready to go. 
I had previous spinal health problems prior to getting this treatment and over the months I actually felt better. I don’t know if the treatment helps with inflammation or not.

my friends & family see a difference in me, I don’t know if it’s mind over matter, and I’m grabbing life with both hands (when I can)

I do get a bit of stomach pain the first couple of days after treatment but a couple of paracetamol and a hot water bottle helps. 
I nap every day, I’m sure it’s the treatment that causes the fatigue but considering my body is healing, it makes sense.

I continue with nivolumab once a month and I also get zoldronic intravenously once a month for the last 4 months. I don’t feel any side effects with it. This is to strengthen my bones as I had a fracture when I was diagnosed that wasn’t healing too well.

i have numerous large tumours but the treatment feels like a miracle because the large tumours have disappeared from my head and liver (despite a few Proseccos)!

• Oh wow that so good to hear. I've just been told I'm stage 4 after several surgeries and they have found it in my lungs. I'm at the point of considering treatment options and am seriously thinking about the one you are on tho there is the possibility of a clinical trial. I'm so glad I read your post. Best of luck for the future and thank you