Nivolumab / immunotherapy and alcohol

Hi I had ipi and Nivolumab for the four times then four years of just Nivolumab. I continued to drink a glass of wine on Frid , Sat and sometimes Sunday evenings. I was not told not to and don’t really think in my case it did me any harm. I have been off treatment for a year now and have regular three monthly scans. So far there has been no evidence of disease. 

I think it’s an individual choice about drinking. I tend to have a healthy diet without going overboard on it. I walk each day and have tried to continue my former lifestyle as much as possible. I wish you well in your treatment 

Susie - can I ask where, which hospital is treating you with Nivolumab. It’s an option for me but I have been told funding is hard xxx sending love 

Can I ask where in the country which hospital you had the treatment - it’s an option for me and I have been told funding is hard to get xxxx

Hi,

I'm so sorry to see that I didn't reply to you! Appreciated your frank sharing. And encouraged by your experience.

Hooray for you being NED and long may that continue.

I've also tried to walk each day, started swimming a couple of times a week recently which is really helping with aches and pains and relaxation. 

Thanks again for your help.

Hi Sarabg,

I'm being treated at Weston Park Hospital, Sheffield. Use of Ipi + nivo then nivo alone seems to be totally standard here, after a certain point in the progression of melanoma. Have not had any funding difficulties or problems about that mentioned to me.

That's including for the 12 week limit on funding continuing if you have to stop it for side effects, which I did. They just applied to start again afterwards and off we went.

Apparently it can now be funded continuously after 2 years if needed.

Have you asked a specialist nurse about it? Or for a second opinion?

Maybe it depends on the status of your disease.

Wish you well with it and possibilities.

The side effects of the combined ipi + nivo were totally horrendous - there's no point beating about the bush about that - but I managed 3 lots if the combo (out of a possible 4) and it reduced the disease in my leg from 15-20 possible melanomas down to 3. So big recommend from me. 

Thank you so much for replying and I’m so pleased it has been successful for you. 

I am under the total Marsden as well and need to wait for them to come back as well. Xxxx

I’m on a different immunotherapy drug for Myeloma (isatoximab) so not sure how relevant it is but I’m ok on a beer or glass of wine without issues. (Tonight I had a beer AND a wine and I’m fine apart from being awake at 4am!)

good luck! I’m trying to continue my life like nothings happened - only problem is that my white bloods are through the floor so I’m susceptible to picking up infections. That means crowded pubs and restaurants are out ️

Hi. I've found I cant tolerate alcohol any more. Been on nivolumab on and off for one year now. Had hepatitis last year and it's since then it started. Now have adrenal insufficiency and nivolumab is attacking my kidneys. Hope you get to enjoy a glass or two off wine.