Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Niv/ipi infusions and side effects

athw
Posted by

So did your hubby have only 3 ipi/nivo treatments?

Stage iii melanoma, WLE, SNB, Axilla node removal.

NOw stage iv - June 2018 Mets in right lung

athw
Posted by

So did your hubby have only 3 ipi/nivo treatments?

Stage iii melanoma, WLE, SNB, Axilla node removal.

NOw stage iv - June 2018 Mets in right lung

DAAD
Posted by

Hi,    yes that when he started to get diarrhoea. It was controlled by Imodium so was put on steroids. These we worked but took several weeks to wean off them . That's when the decided to stop as didn't want to cause any toxicity in his bowel .

hubby was little angry and worried at  first but after scans showed that his immune system seemed to be dealing with the tumour in his liver then felt a bit more positive . 

Health wise generally he has been fine . He has changed his diet too so that his body has best chance . 

All we can do is wait for next scans , but more waiting then see what oncologist says .

How I hate this bit , but as hubby says what choice to we have !!     

1 step at a time 

Hope your all doing ok     x

Fuzzylarue
Posted by

Hi Dancingintherain, Thankyou , I hope you are still feel ok and long may it continue, alls we can all do is try to keep strong and positive, some days are easier than others. Big hugs . X

athw
Posted by

Think you and I are in a similar boat. My husband`s stopped due to toxicity. His combo treatment has ceased - full stop.

He has today received his program for maintenance treatment, lasting for a year. He has still not received his 

scan - Nov 2 then the big reveal - Nov 13th which I am terrified about. xxx

Stage iii melanoma, WLE, SNB, Axilla node removal.

NOw stage iv - June 2018 Mets in right lung

DAAD
Posted by

Hi athw 

yes it does seem so , try stay positive , so easy to say . But you are never alone , always people here to get you through .  I know how you feel about the big reveal . We should get ours about the same time . Let us know how it goes  

big hug  

athw
Posted by

Of course I will x It is wonderful - this platform;  don`t feel I contribute much but the wonderful reassurance and hope we receive is just tremendous. I need my melanoma forum fix daily - my crutch to get me through this dreadful experience x

Stage iii melanoma, WLE, SNB, Axilla node removal.

NOw stage iv - June 2018 Mets in right lung

KTatHome
Posted by

Hi , we all get nervous around Scan time, well I know I do! My next scan is 9/11 and results 21/11, but far enough away at the moment to keep those thought in a box, till they start jumping up and down wanting attention ! 

I think since my diagnosis I dislike Halloween, it feels a bit like it’s taunting me, especially as I don’t eat sweet things anymore.

A daily fix of support has no calories so excellent for us all. 

KT 

athw
Posted by

Thanks x His scan is 2nd and results 13th November.  Wishing you the very best of luck x

Stage iii melanoma, WLE, SNB, Axilla node removal.

NOw stage iv - June 2018 Mets in right lung

Maisies mum
Posted by

Hello dancingintherain- i started ipi/nivo in july following groin dissection in feb 2018 then progression in pelvic nodes which was unresectable. I did 3 treatments - rash immediately , no other side effects .the treatment itself is painless ! After 3rd treatment i had a cough ,gp prescribed antibiotics and i informed my team who called me in for full set of bloods. Raised liver enzymes led to oral steroids. Aftef 5 weeks enzymes rose to 2000/400 and i have been in hospital as inpatient since 18.10 while they tried to sort  this out which they have done as 2000 is now 1000( liver enzymes) so discharge today .had liver biopsy yesterday so they can better understand what has gone on. My ct scan was 3 weeks ago and doc confirmed yesterday no melanoma seen !!! The ipi/nivo has worked its magic - i am hopeful of no long term liver issues - keep the faith - i hope all goes well for your treatment - keep your team informed of every side effect so that they can deal with issues quickly - good luck to you and all reading this post dealing with this xxxxx

Fuzzylarue
Posted by

Oh what wonderful news for you, hope you have continued success in your health. Hugs  xx

Maisies mum
Posted by

Thankyou so much and sending all my best wishes back to you too xxxx

DAAD
Posted by

Hi  so happy for your good news .  

Helps us stay positive for hubby results .

Had scans yesterday so playing the waiting game for 2 weeks till we see how his body is doing . 

  

Hoping we get the the same good news . 

 All the best to you & your family for continued good results x 

Maisies mum
Posted by

Thankyou so much - just got to get liver under control now!! Still sat waiting for blood results and hopeful dischargd in next hour!! I hope you get good news- thinking of you- stay strong xxx