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Hi Siegfried, 

Sorry to hear the news of your melanoma. 

I don't have immunotherapy experience, so can't offer much on that but wanted to give you thumbs up for your attitude. As a medical scientist myself,  I am trying to remember that there are so many  new treatments and developments and I am lucky to be living In the UK, where there are many good doctors and medical research.

I try not to worry for things didn't happen yet  and trying to stay positive, by keeping myself busy with work and hobbies during the waiting times.

Thank you Elmyra. Totally agree with your approach too. I did 500 skydives and never worried about the parachute opening until I went for the pull. You can only do thorough preparation, be armed with all the relevant knowledge to make decisions and after that   ...it is what it is. Good luck with your situation.

Sorry for taking so long to reply. I am at present on holiday in Norfolk. To answer your question on immunotherapy as you said everyone’s different. My friend who had stage 4 melanoma could only cope with one ipi and Nivolumab and it put him in hospital for a week. I on the other had managed the four treatments and have now been on Nivolumab for over 2 years. I did have a very large tumour burden. It was in my lung,near my spine and a very large lump near my kidney. The treatment was very successful and now all I have are 2 tumours one 7 cm one smaller near my kidney. They  are unsure whether they are active but to be on the safe side I can continue use with Nivolumab every 4 weeks. 

Regarding side effects it was worse having both of the drugs but not unmanageable. I developed and still have vitiligo on my arm and chest I had some joint pain and a slight rash at times. Now after the infusion I am tired on that night.

I forgot to say I had 7 months before this treatment on the tablets but had some progression so was switched to immunotherapy.

I do wish you well. I know when I was first diagnosed I found it very hard and suffered from anxiety. However as time goes on I become accustomed to the routine and become less anxious. Scan result times are difficult but they are for everyone and I try to keep busy. I also try to eat mainly healthy food and go walking most days. I have good support from my husband and friends and that helps so much. Good luck I wish you well.

Hi Siegfried,  I've now had two doses of Pembro IV at the chemo unit in my local hospital.  It's been painless and mostly symptom free.  I've felt some aching in my limbs and my oncologist has asked for extra blood to check up on a raised liver enzyme.  After reading up on this it does happen but often rectifies itself. 

From what I've read on here there seems to be positive reactions (ie: tumour shrinkage) with these fairly new drugs so personally (and so far)  I'm happy to be on them as a preventative therapy.

Good luck with your decision making Siegfried.

Thank you Alottment lover and Lgrgdg90(intriguing)  both for your comments. I am very positive and your respective experiences are encouraging. 

Like me I am 2 doses of pembro in… so far so good x 

Hi SSiegfried

I have just had my 2nd dose of immunotherapy. Side effects gave not been too bad.  Mainly loss of appetite and nausea for which they provide you with medication. 

I wish I could be like you and have a positive attitude. I ha e a very supportive family  it I feel like I have been handed a death sentence. How do you keep yourself positive??. 

I don't want to phone the helpline as all I want to do is cry and feel people don't want to listen to that

How do you keep yourself so positive? I would love some feedback

I wish you well on your journey

Parklands

Dear Parklands.

I am so sorry that you feel as you do. I am not a counsellor but I would say straight off that it is ok to cry and ok to be down and I have no doubt that no counsellor would judge you or mind if you did. Maybe my turn to cry is down the road a bit. It must be part of the process musn't it?

Your positives are these:- you have a supportive family; you are receiving therapy that stands a very good chance of working compared with even eight years ago; you are so far coping well with side effects.  All this is good.  But allow yourself some professional counselling - it may help you.

I don't regard this as a death sentence. I regard it as life affirming and I am already beginning to have heightened appreciation of the world around me, my relationships and my achievements and even my failures. It makes me vow to make more of the remaining years.

A friend in USA is celebrating a year free of breast cancer and she urges me to embrace the whole experience of therapy and recovery. She made mental images of the drugs eating her cancer cells like little pacmen as she sat in her chair during infusion. I plan to imagine similar taking an image from that awful film Fantastic Voyage when medics are miniaturised into a submarine injected into a patient to go laser a brain tumour or something. There is a scene where lego-like "antibodies" whiz along the blood stream and clamp themselves onto hostile bodies (including the submarine!). Well that's my image of how this stuff works! And me a scientist!!  

Play some games in your head with silly images like that. Think about great experiences you have had and vow to damn well be around to have some more - soon. Don't cope with the melanoma - Make it cope with you!  Good luck. Keep messaging if it helps.

Hi Siegfried, good to hear your story and the manner in which you tell it. I won’t detail the saga I’ve been on (through?), suffice to say I did 6 infusions of Pembrolizumab as adjuvant therapy (I had been Stage 3C) before recurrence and now that it’s back again, they’ve put me on the powerful and toxic Ipi/ Nivo combo, I’ve just completed No.3 of 4 infusions of the ‘hard stuff’.

As you know, each patient has a markedly different experience in terms of side effects ( Immune related adverse events! - you medical types!!) I kept my eye on the basic stat. 90% complete the course on Pembrolizumab (or Nivolumab) when given as a single agent. As someone with no co-morbidities, I was confident I could take it and the raft of mainly gloomy anecdotal ‘evidence’ didn’t do it for me. That said, this site is good on how to cope with events after they’ve occurred. 
Best of luck

Tim

Parklands I can totally sympathise as some days ( not all) I feel like I also have been  handed a death sentence. Today is one of those days x I have accessed the BUPA counselling through this site and hoping that speaking to someone will help me. I am trying to keep reminding myself of the facts… it’s all cut away, I am having pembro as a preventative treatment, I am feeling absolutely fine . But some days my mind just runs away with itself x