Metastatic melonoma unknown primary

Hi A_321 and a very warm welcome to the online community and to the melanoma group in particular.

I haven't had immunotherapy but I noticed that your post hadn't had any replies yet. There are lots of people in the group who are on immunotherapy, so if you're can tell me which drugs your oncologist is proposing to treat you with then I could link you to some of the people in the group who are on the same ones.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Evening.

I can offer a bit of advise as last week I had my 23rd immunotherapy (nivolumab) infusion.  Unsure which treatment you will be receiving however I felt the worst after my first infusion shivering and high temperature however my only real side effects are lethargy for a few days after, aching joints and itching. 
please feel free to reach out if you want any other advise or support I have metastatic melanoma so have a wealth of knowledge.

Thank you for coming back to me I have just updated my profile x

Hello thank you for your reply. I am glad immunotherapy is working for you.   I will be starting next week pembrolizumab which I will have every 6 weeks for a year.  They have recommend me doing this for prevention.

Good morning squash, my wife was diagnosed with metastatic cancer last January and had a tumour and two lesions in her brain as well as 4 lymph’s and some metastasis in her lung. She was put on dab tram and this had an amazing effect without any side issues shrinking everything back to ‘residual abnormality’ until November when when two tumours reappeared 

she has now been put on a course of immunotherapy (IPi/nivo) and is coming up for her third session on Friday. The impact seems to be very different on this treatment. After session 1 she had mild aches and tiredness but not for long.  Following the second session she has become extremely fatigued and lethargic, a few rashes are now appearing (albeit manageable) and she has started to get gastrinal issues and is losing her appetite resulting in losing 3lbs this week. 
in all none really serious but it seems that side effects are mounting it’s very worrying and it breaks my heart to see her suffering like this

I appreciate everyone will be effected differently and this may be a stage we have to right through before we start to see some improvement 

my question a long way round is how was your experience in the early days and how did you find coping? Has the journey on nivo been any easier?

Morning Ken

Firstly I am sorry about your wife’s diagnosis.  Your wife is following the exact treatment plan I started 21 months ago.  Unsure if she will be moving onto single nivolumab treatment after the initial 3 rounds of ipi/nivo.  However if she the only real difference I found was the actual infusion time as I still get the same side effects but my body has just got used to them now.  

Unfortunately immunotherapy can come with severe side effects which can takes months to surface however if she has any concerns it is best discussing this with the oncologist.  I still suffer with fatigue, itching skin and rash, endocrine problems (which contributes considerably to my fatigue currently on steriods ) along with gastro issue’s.

The advice I would give your wife is to listen to her body if she is tired rest.  If she feels nauseous I would take the anti-sickness drugs even on her good days as when the nausea kicks in I find it difficult to keep it under control.  For the fatigue I try and have a short walk and ensure I’m eating healthy but if still lethargic I will take a short nap, itchy skin & rash I take antihistamines & have a cream and the gastro problems I take laxatives daily.   It sometimes is an uphill struggle but considering where I was 2 years ago I can only say the immunotherapy is what has kept me alive.  

wishing you well in your journey ahead xx 

Good morning Squash, thank you so much for your prompt reply and kind thoughts. My wife will be having four courses of IPi/nivo then starts nivo every 4 weeks after a 6 week break

its useful to hear your experience and your advice on how to prepare is so helpful.

I wish you luck on your journey and hope and hope you continue to cope with the side effects

thanks again

Hi A_321 

Now I know you're on pembrolizumab, I've found these previous threads from others who are on this type of immunotherapy for you to have a look through.

I'm also 'tagging' DaisyRed and GingerNinja as they are the most recent posters who have talked about being on pembrolizumab. Hopefully, they'll pop on and tell you about their experiences.

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Thank you so much for your help. Much appreciated. I am seeing my oncologist on Wednesday for the results of mri and scan. I am very nervous but trying not to think about it.

GA

Hi DaisyRed 

I'll keep my fingers crossed for you!

I tagged you as I was hoping that you could tell the OP about your experience on pembrolizumab.

Wishing you all the best

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