A few ideas needed: Ipi/Nivo is off the... - Melanoma Caregivers

Melanoma Caregivers

A few ideas needed


Ipi/Nivo is off the table due to severe toxicity and relentless diarrhea even three months after last combo. Had 20 days of radiation, as well.

Unable to continue with Nivo maintenance - so what and where should I be looking for ideas of treatment to talk to oncologist? I have googled tons- but would love to hear if your loved one was in the same boat what did you do next?

11 Replies


Does the bad GI continue now in spite of steroids? This is the point when my husband got a single infusion of Remicaid which started dramatic improvements within 3 days. He could have gotten a second round, but it wasn’t necessary.

Because of toxic reactions and history with two immunotherapies (Lots of Keytruda, then Yervoy) and still advancing disease, we looked at clinical trials to see what was possible after consults with 3 other melanoma specialist on the east coast (Johns Hopkins, Georgetown, and MSK in NYC). My husband has wild type melanoma, so The most knowledgeable investigator about BRAF said not to use the BRAF or BRAF-MEK combos in his case because likely wouldn’t help and more recent research indicated increased risk to develop second cancer for his situation. That sent us looking at NIH on Cancer.gov for clinical trials

Wayne was a potential candidate for TIL due to his situation (no brain Mets, accessible tumors for easy harvesting we’re main ones, plus advanced metastatic melanoma). You can see some of my threads about that process. It is fairly brutal, had several months of testing and scans involved, and is currently being investigated in about 14 teaching hospitals in the US. We live in DC and closest center for us was VIrginia Commonwealth University in Richmond, VA with Dr Giao Phan ad the principal investigator. She is only taking one eligible patient at a time.

Look up Iovance as the TIL manufactures then melanoma to learn more. The 3 week hospital stay was very rough so you have to be “healthy enough” to tolerate the chemo plus TIL transplant plus Interlukin2 infusions. The process closely mimics a bone marrow transplant in terms of protocol.

You’d want to with live as close as possible or be able to frequently travel to a TIL research site for about a year. We were fortunate to have family and friends in Richmond where we can stay overnight and I was at a friends house for 3 weeks to sleep, shower and grab a meal during the inpatient time. Wayne was out of work on disability May 1-July1.

Wayne was admitted May 1 this year and so far appears to be a responder to the intervention: his tumors are either stable or shrinking. We have a friend in NYC who had the first TIL procedure done in the city for the same clinical trial; she has been a non-responder. We know one other younger gal who was in the earlier phases of this protocol at NIH and she has been NED for 6 years.

Clinical trials for other approaches are also visible at Cancer.org. Your doc can help you sort through the criteria, but there are brief descriptions for each option you can read

We also looked at radiation and Wayne was already marked to start when we got the VCU consult and went in the TIL direction instead.

Peace in your journey


Good morning Missy. Thanks for the information. He has had nine doses of remecade and entivio. Six remecade and four entivios, to be exact. The only thing that really controls it is being on 80 mg of steroids.

The combo definitely did a doozy, he has been on tpn for almost a month now - two weeks for bowel rest and now allowed soft foods.

Will definitely look into what you suggest. I absolutely follow your threads. You are such a positive and knowledgeable influence.

missyrandAmbassador in reply to carlsbad317

That a lot of powerful anti inflammatory Meds. Have they considered moving to oral Chrones disease meds? Like Humira? His GI tract sounds toasted and chronically overstimulated now and that is very difficult to live with on a day to day basis. Wayne has conclude he can’t really tell what sets off renewed GI symptoms: lack of sleep, coffee, dairy in the am, fiber/ less fiber, beef (which we rarely eat). Or just random things. I’m sorry to hear if this chronic challenge.

I’m hearing more from folks in this HealthUnlocked and our local melanoma support group about long term autoimmune over stimulated responses: skin, GI, tinnitus and lupus like symptoms are coming up more frequently as folks are living longer after immunotherapy interventions. I don’t know if some of these LT issues will be reduced as the duration and dosages to treat melanoma are reducing? Folks like us are still in the cutting edge experience group, so we are becoming the exemplars.

Do keep us us on second opinions. We have 2 folks in my local support group on LT steroids, one on 60 mg and one down to 10 mg, but neither has been able to come off the med so far



Thanks again for the information. Is there a different HealthUnlocked website that I can be a part of as well - the one you mentioned or is that this one?

missyrandAmbassador in reply to carlsbad317

There are other HealthUnlocked sites for other medical concerns, but you’re on the right one for melanoma caregivers 😉


I have a question about the clinical trial your husband was able to get into. My husband has had his cancer everywhere but his brain. Meaning it is in all his organs, and bones, but does not have any visible melanomas in the skin. Would he not be a candidate for this trial?


missyrandAmbassador in reply to SGHSweethearts

Michele, best thing is to contact Dr Phan at Virginia Commonwealth University to discuss. Brain Mets is a definite exclusion. 804.628.3111. She is a hematology oncologist. Also for more on the clinical trial which had several centers in the US enrolled go to




Let me know what you learn



Thank you Missy

carlsbad317, so sorry to hear that your husband has had such a hard time on the Opdivo/Yervoy combo. My husband also has stage IV Advanced Metastatic Melanoma and he had 2 doses of Opdivo/Yervoy and had to stop the Yervoy, as he couldn’t tolerate it. He was however able to continue with the Opdivo alone for 19 months before it started to attack his GI tract. He has been off 5 months now and it seems to have reversed itself, with the help of steroids of course. He just doesn’t seem to be able to come off of the steroids for long. I pray your husband gets some relief very soon. Has he had the TAF/MEK? That helped my husband a lot as well. He was able to stop this after 9 months so we still have it in our arsenal for a later date. He did start having a few squamous cells while on TAF/MEK, but he was checked monthly and then had to have a a few Mohs procedures to remove them. It seems like everything has an adverse reaction in some people.

Can I ask you what did your husband have radiation for? They have not given that as an option for treatment for my husband. I don’t know if it’s because he just had too much cancer all over his body.

Prayers for you both.


Hi Michele,

The steroids seem to be not going away. Currently he has an abscess on his bottom and we are happy the steroids are forming his stool, but the steroids are drastically slowing the healing of the abscess wound.

His mass was not able to be removed with surgery due to it being so connected to tissue and nerves.

Since the majority was left - the dr felt radiation was the best way to attempt to shrink it for possible removal. Likely not- but is has shrunk considerably - now that is only using sight and touch.

He is not able to have the next petscan until his wound heals. The dr said his butt would light up and have false positives.

No on the tek/Mek - is that for braf positive? Need to look into that.

We are hoping to convince him to go back to Huntman in Utah or the Anglesis Clinic In LA for a new opinion.

Melanoma is just relentless!!

I am glad that he has had a response and my prayers are with you guys, too!

What state do you live in and where do you guys go for treatment?



I’m glad the steroids are helping with the diarrhea, but sorry to hear it’s slowing his healing of the wound. It is such a juggling act.

I will pray they are able to shrink the mass enough so they can do surgery. I remember now the doctor telling us that because my husbands cancer was throughout his whole body that he would not be able to surgically remove anything, so I guess this is why radiation wasn’t an option for him.

Yes I know that the Taf/Mek is for BRAF positive, not sure about any other types.

We live in California. And my husband is being seen at John Wayne Cancer Institute at Providence St John’s in Santa Monica. His Dr. Stephen O’Day left Angeles Clinic in LA several years ago to come to John Wayne Cancer Institute to head their Melanoma research & Medical Clinic.

Melanoma is relentless for sure.

So glad we have this group to discuss things with.

Continued prayers for you both


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