New patient

Hi Mark,
I drank lots of water before and during. I got through three infusions feeling great then the diarrhea hit me and liver numbers went up. I am on prednisone now to bring down liver enzymes. I still don’t feel bad physically in any way.

However, even two or three infusions is effective according to data provided by bubbles and Ed here on the forum.

Regards,

Hi Mark,

So very sorry you have to join us here, but there are many smart and caring peeps on this forum – so in that spirit – welcome.

Gearing up for melanoma treatment certainly requires us to traverse a steep emotional and educational curve. Unfortunately, there are not many specific scientifically determined absolutes as to what makes therapy go better – or worse. Most oncologists would simply advise that to the best of our abilities, we follow basic known health practices. In other words, eat as healthy as you can. Get the exercise that you can. Get your rest.

However, there are a few scientifically backed points.

Exercise: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-in-2013jump-up-jump-aroundand.html

Much has been made of the gut’s microbiome in research and not-so-researched-media recently in regard to how it impacts our health and response to disease as well as treatment – specifically immunotherapy. Here are only a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=microbiome
The basic consensus from all of this data is this: Eat your veggies. Especially those high in fiber. Probiotic pills don’t cut it and may even cause a decreased response. Don’t take antibiotics unless absolutely necessary. Eat the good cultures found in buttermilk, yogurt, kimchi, sauerkraut, kefir, etc.

Since immunotherapy can adversely affect liver function in some – it might be wise to avoid or minimize intake of things that stress our liver – like alcohol and acetaminophen.

Which brings me to NSAID’s – like ibuprofen. Nothing very conclusive – but lots of data: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=NSAID%27s

Oddly enough there is some data regarding coffee – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=coffee and curcumin, the yellow stuff in mustard and curry – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=curcumin But, to be honest, I wouldn’t worry too much about either of those.

Research has made it clear that adequate vitamin D (while utilizing sun protection – Harmful rays from the sun and vitamin D are two entirely different things!!!) is very helpful in melanoma. Here are reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=vitamin+d&max-results=20&by-date=true

Your therapy sounds set, so I don’t know that you would find this helpful – but here’s a link to a primer of current melanoma treatment that I put together, which also includes a link to a glossary of acronyms at the end: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

Hope all that helps. Mostly – do the best you can. Report any odd untoward to your doc. Hang tough! Ask more questions as you have the need. I wish you my best. Celeste

Hi Mark. There are no naive questions. All questions are good and most welcome. If any of us can help and alleviate any issues I am sure we all would be more than happy and glad to help. Most of my combo infusions (I managed only two before a liver injury) were in the morning and as such I would have a black coffee before my lab, dr’s visit and I would catch a bite just before my infusion. Usually, something light but I had a toast and egg, veggie quesadilla, soup, sandwich or some fruit since I do not like feeling full/heavy during my infusions. If I did not feel like eating I would have something to drink and a few crackers or pretzels to knibble on during my infusion. Now that I am on Opdivo only, the infusion is quite short and I usually have a small apple juice or nothing. Once I am done, I eat at home whatever I like. Basically, listen to your body and keep hydrated but not on pop and sugary drinks. I avoid even orange juice before my blood work because I do not want to get my blood glucose to go up and I want to see the fasting blood glucose value. This is not necessary but I just prefer to know for my own piece of mind. As for the kind of food and drink, see what works for you and what you feel like at the time. Few times, during my combo infusions I felt some twitches inside my chest and abdominal cavity, so I choose to lay low especially when it came to food. These resolved themselves quickly and I had no issues. Afterwards, the key is to listen to your own body. Do what and as much as you can and rest when you need it. Some people have few side effects, others are not so lucky. My view is to err on the side of caution and help your body heal, so avoid strenuous excercise at least until you see how the side effects treat you. You should expect to see side effects 3-4 weeks following the first infusion.
Hope this helps. Best of luck with your treatment.
Melanie