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Stage IV confirmed – scared beyond believe

Forums General Melanoma Community Stage IV confirmed – scared beyond believe

  • Post
    Christinad
    Participant
    Well I got confirmation today that I have metastasis in multiple areas and start immunotherapy next week. Of course I have many different emotions at this point and I’m going to allow myself time to sort through all of them and then it’s fight mode!  I’m praying immunotherapy will be effective for me and I can kick melanomas butt yet again! How should I expect to feel after the infusion? Anything I should do or take to help with side effects?

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  • Replies
      Christinad
      Participant
      I have wide spread disease on the pet scan. Seems like it’s pretty much everywhere.

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      ed williams
      Participant
      What drug or drugs will you be given Christinad?

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      Christinad
      Participant
      Hi Ed, I’ll be getting Opdivo and yervoy combo and then after three months I’ll just go to one of them. My oncologist is trying to get me in by Tuesday for the infusion. He’s been my doctor since my stage 3 diagnosis in 2014 and I trust him.

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        ed williams
        Participant
        I just had Nivo as part of checkmate 067, so not able to help as to what to expect with combination from personal experience. Many patient’s have issues with diarrhea and itching (skin reactions) at the beginning of treatments. Really important to stay in contact with medical team. about half of combination patient’s develop grade 3/4 adverse events with about 33% or close to that % having to stop treatment because of adverse events, good news is patients who have to stop do just as well as those who don’t. They can pick up many of the issues with blood work but some side effects like diarrhea require patients to inform medical team when issues arise. Much easier to get things under control if treatments (most of the time steroids) start quickly, so don’t try and hide information from team is best advice that I can give! Good luck!!! Ed

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      Christinad
      Participant
      Thank you, Ed. I’ll be sure to report any adverse effects to stay on top of it.

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      MelMel
      Participant
      I can imagine but try to get control of the situation. You know what you are dealing with and you are tackling it the best way possible. It helps that you trust and are comfortable with your melanoma oncologist. For me, it took so long (2 months) to get diagnosed that once my diagnosis was confirmed, I was actually relieved. Now, I could concentrate on one cancer type instead of researching seven.

      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

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        ed williams
        Participant
        Melmel, I would love to read that scientific study where an Oncologist doing research on gut micro biome in melanoma is suggesting drinking pomegranate juice! Nice, giving advice to some one starting Ipi+nivo that pomegranate juice is the way to go. Show the research, when you make wild medical claims so that new members can see the validity to your recommendations or in this case the lack of melanoma research on using pomegranate juice when doing immunotherapy drugs.

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        MelMel
        Participant
        Ed with all due respect you are pathetic. Discrediting other people’s beliefs just because they do not align with your own is despicable. While I may not be able to find the exact article at this very moment, there are plenty of others which prove my point. As I recall, your gang ganged up on me about two years ago regarding this exact matter. To each his own.

        https://ascopost.com/issues/april-25-2020/gut-microbiota-emerging-as-key-player-in-response-to-immunotherapy/#:~:text=An%20analysis%20of%20fecal%20specimens,%2Dcell%E2%80%93inflamed%20tumor%20microenvironment.

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7086073/

        https://www.nature.com/articles/nrmicro.2018.12

        https://today.oregonstate.edu/news/melanoma-patients-respond-immunotherapy-after-changes-gut-microbiome#:~:text=Melanoma%20patients%20respond%20to%20immunotherapy%20after%20changes%20to%20gut%20microbiome,-February%2014%2C%202021&text=CORVALLIS%2C%20Ore.,of%20providing%20long%2Dterm%20benefit.

         

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        ed williams
        Participant
        Melmel thank you for confirming  my point that you don’t have any research to back up your wild suggestions that drinking pomegranate juice is recommended by melanoma researchers ! I did enjoy your attempt to flood the page with gut micro biome articles, what was your thinking? If I just put lots of stuff up and make a lot of noise that no one would notice that none of the information is about melanoma research with pomegranates! It might surprise you that I actually follow on Twitter Dr. J.A.Wargo of MD Anderson and I have read most of her gut micro biome research and I have read most of Dr. Thomas Gajewski research on this and SRS radiation as well. Melmel you claim I don’t respect your beliefs, this is where my issue is and it has nothing to do with beliefs but “Science”. Would you recommend melanoma patients use IDO inhibitors, of coarse not because clinical trials found it didn’t improve pd-1 performance. You post Dr. Gajewski paper from 2017 research and he found area to further study (Bifidobacteria) and probiotics, well we all know where the probiotics research led to!!! It is not recommended with immunotherapy now! In conclusion, I do have an issue with non science backed opinions and especially when those opinions are given on the board and the author can’t back up the claims!

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        MelMel
        Participant
        1. Ed, I found the research articles connecting pomegrante with specific gut bacteria Akkermansia municiphila which is not only responsible for better immunotherapy responses in melanoma patients but also has a protective effect on the gut and may prevent colitis which is a serious side effect of immunotherapy. I am not flooding anything you just need to do a bit of reading. Unfortunately, the data I had provided is not in your favorite form of a video where you can go to a specific second and hear it. You will have to do a bit of reading which you obviously dislike. So please stop harping about things in the name of “science”. It is getting a bit old and you should do your homework. Also, this is a forum where patients can exchange information both scientific and personal. It is up to individual to see what they want to further research and believe in in the name of science and inform themselves in order to make the best decision in their treatment plan. If you believe that drinking Coke and rum on the day of the infusion is advantageous, by all means go for it. I speak of my personal path and the reasons I chose what I did because science has led me to this research. Once again, you are free to believe whatever you like. I am not here to change your mind in any way, shape or form.
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        ed williams
        Participant
        Dear Melmel, you are right as always I don’t like to read but thanks to your encouragement I decided to go into detail on the links you provided. The first link by Jennifer McQuade of MD Anderson was very interesting and I did find she did reference a Lung Cancer and Kidney Cancer mouse trial from France which looked at Akkermansia muciniphila and the effects of antibiotics on French patients in those two cancers. With a little more looking I found and read the article from 2018 and found it interesting for Lung and Kidney cancer patients who have taken antibiotics in mouse trials. Still looking for the melanoma link that you suggest so I kept reading and came across in your second article written by Andrees Stancu dept of dermatology, Brigham and Women Hospital, Harvard Medical School a reference to your Colitis cure claims, in the PRIMM trial see following links. Now, this observational trial which is still trying to find patients 3 years later makes a suggestion that their gut microbiome observational study “might” find a cause of colitis by studying the stool samples of immunotherapy patients over time. They have a theory and are trying to find out if it is correct, far from conclusive since they are still trying to fill their trial with patients 3 years later. In the article by Stancu she goes into detail, listing in two tables research going on in the microbiome in cancer patients taking immunotherapy drugs. In table one she gives 12 references in which 11 are for melanoma by Jenn Wargo or Thomas Gajewski and one link was to  the French Lung cancer trial. In table two of the article she covers 7 trials of interest with only one being in melanoma and it is called “Beans to Enrich the Gut’ see following link. So I am still looking for that melanoma Akkermansia Muciniphila link that you suggested exists and oncologist suggest melanoma patients should follow and drink pomegrante juice. Stancu article link follows. Here are links to PRIMM colitis study.https://clinicaltrials.gov/ct2/show/NCT03643289 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7086073/

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        ed williams
        Participant
        I missed on link to ‘Beans ” trial from Md Anderson. https://clinicaltrials.gov/ct2/show/NCT02843425

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        MelMel
        Participant
        Ed, you wanted studies and evidence. Take a look at Akkermansia muciniphila as it relates to success of immunotherapy especially in melanoma patients (link#1) and prevention and protection of unwanted side effects especially colitis, etc. (subsequent links). Information is the key and just because you are not informed on a particular subject and choose to ignore it does not mean that information is wrong or that it does not exist.

        1. https://news.uchicago.edu/story/specific-microbes-digestive-tract-can-boost-success-cancer-immunotherapy

        2. https://invivohealthcare.com/education/articles/blackcurrant-pomegranate-polyphenols/

        3. https://www.researchgate.net/publication/311501913_Pomegranate_ellagitannins_stimulate_the_growth_of_Akkermansia_muciniphila_in_vivo

        4. https://biomesight.com/blog/akkermansia-muciniphila

        5. https://atlasbiomed-com.cdn.ampproject.org/v/s/atlasbiomed.com/blog/what-is-akkermansia/amp/?amp_js_v=a6&amp_gsa=1&usqp=mq331AQHKAFQArABIA%3D%3D#aoh=16222784199479&referrer=https%3A%2F%2Fwww.google.com&amp_tf=From%20%251%24s&ampshare=https%3A%2F%2Fatlasbiomed.com%2Fblog%2Fwhat-is-akkermansia%2F

         

         

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      Ireland1
      Participant
      https://www.esmo.org/content/download/124130/2352601/1/ESMO-Patient-Guide-on-Immunotherapy-Side-Effects.pdf

      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.

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        Christinad
        Participant
        Thank you for sharing. This guide is very helpful. It gives a good idea of possible reactions and how to treat each one.

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      Bubbles
      Participant
      Hey Christina,

      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

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      JudiAU
      Participant
      Welcome. Lots of good information here. I’m really hits people differently and speculation doesn’t help. Make sure you understand the possible reactions and their grades. You can have a mild reaction and continue the drugs. Have a strong reaction, get treated with a pause, and restart immunotherapy. You can have a severe reaction and get kicked off. There is disagreement among even the best oncologists about how to treat/stop/resume/ reactions how and when steroids/radiation are involved etc. my oncologist will allow steroids during immunotherapy (worked well for me) lots of doubled up treatments. There is not waiting around to taper steroids etc before resuming therapy etc. I think of this as full throttle.

      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.

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      JudiAU
      Participant
      As for healthy living, my oncologist says to do what feels good and makes you feel cared for. That might mean Uber health diet vs a diet of health and pleasure and sharing a bottle of wine on the weekend.

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