immunotherapy

Hi Pricilla 

What's the name of the immunotherapy you'll be having? Providing the name will mean that those with experience of that drug can share relevant experiences with you.

I've not had immunotherapy, but that was because it wasn't needed for my stage (2a) of melanoma. However, I've had a WLE and SLNB and I'm happy to answer any questions you might have about those operations.

The two operations are done at the same time under a general anaesthetic. My WLE was on the back of my arm, and didn't require a skin graft, while my SLNB was done in my armpit. I took over the counter painkillers for 2/3 days afterwards but then found I could manage without any further painkillers. I had full use and movement back in my arm after a couple of weeks but I did make sure I did the exercises I was given.

It's all doable and I'm sure you'll get through it, no matter how daunting it seems right now.

Hi Pricila

i had a combination of nivolumab and ipilibumab and didn’t really have the option of declining immunotherapy as my melanoma had spread to my lungs. It can work really well and did for me. Latchbrook is right that people have different experiences. The one thing I’d say is listen to what the oncologists say about potential side effects. Unfortunately much of what was told to me happened but as I said I didn’t really have a choice and it has worked well on the cancer. 
 
I wish you all the best and if you do have immunotherapy I hope your side effects are minimal. 

Thank you I hope you continue to keep well 

I don’t know as yet what drug I will be getting the consultant just mentioned it would more than likely be part of the treatment plan going forward, I’m jumping ahead of myself with anxiety as I haven’t even had the WLE yet. Thanks for replying your positivity and encouragement has been a shining light at a dark time for me.

Hi Pricilla,

I think your friend is wrong!

I had (1) Targeted chemotherapy in 2020 and (2) Immunotherapy (2023-ongoing) and I would choose Immuno EVERYTIME. It is amazing. I didn't have 'full-fat' chemo, just targeted chemo but I suffered a lot: raging fevers, shaking, some vomiting and diarrhoea. These effects happened for 3-4 days every 4-6 weeks. Personally, I felt terrible during this time and often thought I'd have to ring an ambulance. (I never did need that. The solution to the effects is very effective: I was advised to stop taking the targeted chemo for 2-3 days to return to my baseline. This always worked.)

I did not suffer so much with Immuno. Currently, my Immuno has settled down and the only side effect I have it some fatigue. I work full-time. 

I had very heavy-duty Immuno first: a double dose called Ipi-Nivo. After 6 weeks on it, I had serious side effects and I was sick for two weeks. Steroids made me feel better. It was like a really, really bad flu but no vomiting, fevers etc.  - thank god. Aften 8 weeks on Ipi-Nivo, they switched me to a single dose of just Nivo (this was always the plan). I then had colitis/diarrhea for 10 weeks which was difficult but not painful. Just fatiguing. The docs said this was from the heavy Ipi-Nivo. Steroids sorted me out but broke my adrenal gland, so I'm on replacement tablets for life now. 

And that is the worst that happened. ALL my oncologists say that Immuno is much gentler than full-fat (cytotoxic) chemotherapy [the one that kills everything and makes you loose your hair]. I am so grateful that I'm on it. Of course, everyone reacts differently to Immuno. It is a very personal, individual thing. 

I don't know the statistics but maybe 50% (?) of people on Immuno have no side-effects? I think? It's a possibility!

Best of luck going forward,

Dots

Hi,

As someone else has said, I'm afraid your friend isn't giving you the best advice.

I've not had chemo, but I know a lot of people who have, and in general,  I think the short-term side effects of immunotherapy are much less demanding than chemo.

Of course there will always be exceptions, however I had very few short term side effects, and the immunotherapy has sorted out my Stage 4 cancer.

Listen to your oncologist and take a view then. I was told I had 9 to 12 months left without the treatment. Now I'm in remission. 

Good luck & all the best.

Thank you that’s very reassuring 

Thank you it’s so good to hear the truth from others who have gone through it. There is a lot of confusing information out there 

There is, but the advice above is good. I've just done a year of immunotherapy. It's no picnic at times, but it's worth it for the boost to survival chances at stage 3...

I had a Kidney removed and felt so much better.  I am on my second treatment of immuntherapy and I have had no reactions and I actually feel better after the infusions.  Don't be scared of it. Putting the port in was the most irritation I have had.  Good luck!