Stage IV confirmed – scared beyond believe

Personally, I think you need to be positive, have faith that this is the correct treatment for you and try to eat healthy. I strongly believe that our gut microbiotic health is the key to making the immunotherapy more effective, as well as reducing or minimizing the immunotherapy side effects, not to mention to keeping our mind and bodies healthy. There are numerous scientific studies which point to these. Healthy gut, healthy immune system and a healthy body and mind. I started eating more naturally fermented foods such as sauerkraut, kimchi, yogurt, probiotic fresh cheese, etc. One study I looked at found that melanoma patients who had a specific gut biome had better outcomes than others. The authors of the study said that the particular gut bacteria can only be obtained through food and they recommended drinking pomegrante juice. At the time, I had oatmeal every single day. Apparently, the more watery or gruel like the better since it protects the stomach. I had acid reflux as well. I cut out processed foods and concentrated more on vegetables, fruits and lean meats. Basically, find what works for you and what your system digests readily. I took a few supplements including alpha lipoic acid which protects the liver.
One usually sees some side effects within three weeks. Having said that, even with my liver issues, I could get through the day all be it a little slower and getting rest and naps.
Best of luck and try to tell yourself that you got this! Staying positive is the key! Mind is a powerful thing so as the saying goes, “fake it till you make it” if you have to. The end result is what counts and not how we got there.

Melanie

This is a great overview of potential side effects / frequency etc – it also gives you an idea of what treatment might be needed depending on severity so that you can flag symptoms early and ensure they get dealt with.  I’m hoping you get none of these – but I found it a super helpful guide.

I did not take the combo.  Rather I had nivo for 2 1/2 years.  However, I have been following the melanoma literature for 18 years!  The best I can determine regarding side effects to immunotherapy is that they are, within the defined scope of what we know they cause, RANDOM! Some people get one thing, some people another.  What I wrote about them a few years ago that holds true today:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

So, that helps explain WHY immunotherapy causes the side effects it does.  We also know that sadly, the ipi/nivo combo causes side effects more often than nivo alone.  Ipi is the bad boy there.  On a positive note, the combo has a higher response rate than anti-PD-1 as a single agent.

Most folks do deal with fatigue and rashes, no matter what.  But – there is a bright side to that as well with vitiligo and itching being very positive signs (though absolutely NOT required in order to attain a good response) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/icky-skin-stuff-good-in-relation-to.html

Personally, I had lots of itching, vitiligo, joint pain and wheezing.  Wheezing was a real cramp in my style, HA!  I do have asthma so I was used to it to a point.  It was treated with inhalers (both albuterol and an inhaled corticosteroid) which made it manageable.  I had a pretty continual low grade pneumonitis, it actually showed up on scans many times, but never had to stop therapy or treat it with steroids which can be used with good effect if needed.   My most detested nemesis, however, was mouth ulcers!  Colitis can occur with immunotherapy.  And when you think about it, the GI tract is just one long tube.  I never had the symptoms of colitis.  Just the ulcers to my mouth, which is not very common, though a couple other forum members have dealt with it as well.

So….how did I manage those years?  I lived with my hookah (as my kids called my nebulizer).  I ran – albeit slowly!  I worked full time, 12 hour shifts taking care of kiddos in my office.  I used soothing lotions and hydrocortisone cream for my skin.  I did all manner of things for my mouth ulcers – none terribly effective – but hopefully that is not something you will face.  I took advil for my joint pain.  I just kept keeping on!  Not always easy, but it can be done!

I have always exercised and eaten a plant based diet (yes meat and fish are in there, too!)  That did not prevent my melanoma initially, nor its progression.  Still, I believe that whatever we can do to keep ourselves healthy generally has got to be good for us when we are under siege from both disease and its treatments.  There is data to support all of this.  Here are a boatload of melanoma articles that address the microbiome and why – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=microbiome&max-results=20&by-date=true  The bottom line there is – eat your veggies, eat your good bacteria in food (like kefir, yoghurt, kimchi – not a pill), don’t take antibiotics unless you absolutely must, fecal transplants work for folks in distress.  Regarding exercise –  there is this:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-in-2013jump-up-jump-aroundand.html   But, also this:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/02/i-feel-like.html

Beyond that, my only weird tip is this.  From the get go, my treatments made my mouth oddly dry and left a weird taste.  Drinking lemonade helped make it feel better.  I would always grab a bottle right after treatment on my way back to the airport.  Don’t know why or how.  The same thing always helped my little peeps get through their treatments.  If you’re really bored, this is (partially) the story of a little one I would buy a bag of dill pickle chips for on my way into the hospital – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/12/my-life-with-cancer.html

So – you gotta do your best.  Know that figuring out side effects quickly is beneficial.  So, if something is bugging you tell your doc!  Most side effects can be managed – often with steroids and a small break in treatment or with replacement hormonal therapy if it is endocrine related.  Eat well.  Play hard.  Rest when you need to.  Cut yourself a break and a big piece of chocolate cake (or whatever is your preferred indulgence) every once in a while.  Don’t fall for quack docs or diets.  (And yes.  It is often hard to tell the difference.  I have a whole series of posts about all the things that cure cancer!)  Yell and/or ask questions here if you have the need.  And LAUGH!  It isn’t always easy.  But something is always ludicrous enough to bring a smile in cancer world!!!

I wish you well.  c

I had a low tumor burden but a large brain met. I have doing well for awhile now.

oh, and don’t read go fund me profiles. Everyone seems to die there.