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My Stage 3B – is it too late for immunotherapy now?

Forums Cutaneous Melanoma Community My Stage 3B – is it too late for immunotherapy now?

  • Post
    Beverly
    Participant
      I’m looking for some thoughts (or experience) on my situation…I apologize in advance for the “novel” below. The last paragraph get’s to the real question.

      January 2014 was told Stage 2, had WLE and 2 SLN biopsy with 1 having a couple tiny possible mel cells. No further treatment recommend/available. 3 month skin exams first few years, then every 6 months. No scans.
      Then Dec 2018 had MRI for Crohn’s Disease that picked up tumor lower right flank (same area as original melanoma). This tumor was supposedly a pillar cyst per dermatologist I saw when I first noticed the lump back in August 2018. Biopsy January 2019 showed deposits of melanoma. This was an In-Transit Melanoma, sometimes referred to or similar in prognosis as Satellite melanoma. Had PET scan which was clean and WLE surgery February 22. This time I was at Stage 3B. And I was also told my original Melanoma in January 2014 was actually Stage 3 and not Stage 2 after current docs looked at old path reports and actual old path slides. Tested and I was BRAF positive and eligible for Taflinar & Mekinist combo as adjuvant OR could opt for immunotherapy. However, with my Crohn’s history the local oncologist at Blue Ridge Cancer Care preferred Targeted Therapy for the BRAF in lieu of Keytruda Immunotherapy due to my auto-immune Crohn’s and less chance of Taf/Mek causing problem with Crohn’s. over immunotherapy. I also saw specialist Dr. Salamas at Duke for 2nd opinion and she wouldn’t do either adjuvant treatment and preferred wait and watch approach because of possible side effects of either treatment with my Crohn’s. I went back to local oncologist and ended up starting BRAF inhibitors Taf/Mek combo late April 2019 and within about 10 days or so started having fever and chills that kept rising over course of a few days with OTC not helping and extreme shaking. Ended up in hospital for a week (ICU first 3 days) with all sorts of serious side affects of increasing fever to 105, severe dehydration, liver levels through the roof, very low blood pressure, intestinal inflammation including exacerbation of Crohn’s, etc. Docs ended up scheduling Crohn’s surgery a week after I was released from hospital as a result of the Taf/Mek side affects. (removed about 8 or 9 inches small intestine). That surgery was June 3. Was going to end up needing Crohn’s surgery in a year or so, but medication pushed that plan ahead. Oncologist wanted to try the immunotherapy next, once I recovered from Crohn’s surgery. However, time was ticking due to having to stop the Taf/Mek after 2 1/2 weeks or sick sick at home for a week, then in hospital for a week, then at home recovering for another week before being back in hospital for yet another week for Crohn’s surgery, to then at home recovering for 4 weeks and could be on no adjuvant therapy. Surgeon said I needed at least 4 weeks after surgery before starting immunotherapy to allow enough healing. Fast forward to first week in July (5 weeks out from surgery) I saw my oncologist and now to the question:

      The BIG question is whether adjuvant immunotherapy will have any benefit at all since were are 5 months out since surgery to remove the melanoma? All trials and studies on Stage 3 adjuvant therapy immunotherapy was within 12 weeks of surgical re-section. Doc suggests it likely won’t have any benefit based on that. But wants me to be comfortable in decision. This is where I am at – Do I try immunotherapy and hope no serious side affects and further hope there may be benefit (of which no one can say it has even a chance this far out from surgery). OR do I wait, do periodic scans and pray? Doc is trying to get insurance to approve another PET scan since it has been about 3 to 4 months since last one and – I’m sure they will deny. Worse case then get a CT to make sure things still look NED. And when get those results decide whether to “try” immunotherapy at 5 to 6 months out from my surgery date. I’m worried I’ll waste time and have bad side effects on immunotherapy for no potential benefit. But I’m also worried to not do anything And worried if it comes back a 3rd time, I won’t be so lucky at it will come back at the next Stage. I’m going to have to make a decision in the next week . And is there any possibility that the TAF/MEK combo I was taking for 2.5 to 3 weeks could have done anything?

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    • Replies
        MelanomaMike
        Participant
          Wow Bev! Well youve had a lot on your plate havnt you!!? Im Mike, nice to meet you, im in a similar boat, different color and size but similar! Im not one of the Smart Ones here, i just noticed your post and wanted to reply as a Gate Keeper to give acknowledgment & careness to you! Ah jeez Beverly, just stay strong, God only knows i do, if ya really wanna know your not alone, check out my profile under Melanoma Information, alot on my plate to….
            DoubleTT
            Participant
              Hello DoubleTT here Tracey from Toronto Canada. I had a similar situation as in Ontario there wasnt much approved here for my gene type NRAS as adjuvant I fought for 4 months after radiation surgery to blow up a met on my T12 vertebrae. Top doc at Princess Margaret Toronto said immunotherapy can start working in 3 weeks two months. He was thrilled that I finally got on the drug 3monhs later ( had to wait 4 weeks after sbrt surgery to spine) They have sen rumours come and go on immunotherapy. Keytruda is excellent with similar side effects as Nivo. But if you work really hard with your Crohn’s_oncologist nutritionist you might have a better time with it. I had severe IBS and Diverticulitis still do but I swear my new diet very strict has enabled me to have great gut flora…no supplements no cannabis no probiotics. Just very simple district eating plan…mega distressing…depression doesn help the tummy either…..So if you have the chance to get on the immunotherapy it’s so worth the try……I have 2 months to go for my first year of Nivo…
              Mark_DC
              Participant
                Dear Beverly.

                I am not an expert, but the fact that the studies were conducted soon after treatment does not mean it wont work later. i think they do the studies after treatment because then they know more or less there is nothing there, and then they test whether these drugs can work to prevent a recurrence. this does not mean that they wont work if you start later. other examples include that if you are taken off treatment for side effects and then the side effects go away, then they can restart adjuvant treatment. So i dont think it matters that you are starting late

                I am a little concerned that your doctor would make this argument (maybe s/he said something different), so do make sure you are seeing a melanoma specialist.

                good luck Mark

                Beverly
                Participant
                  Hey Mark_DC, thanks for your thoughts. What you say makes complete sense. Worst case scenario is the drugs don’t work or I have untolerable side affects and have to stop, right? The melanoma specialist I saw at Duke University said that they have a least one person a week end up in the hospital with severe colitis from immunotherapy and deaths have happened as a result. And because of my Crohn’s, she wouldn’t do either the BRAF Targeted Therapy or immunotherapy on me. I don’t know if she would change her mind now or not with the Crohn’s surgery. The thought process from my Crohn’s doctor and the surgeon was with the surgery (and the temporary stoma) my chances of the Crohn’s developing again was very minimal (based on my late age of Crohn’s onset, age I am at now, removal of the diseased part, and not reconnecting the intestine but doing a temporary stoma instead). They did the stoma to hopefully delay any recurrence of the Crohn’s around the surgically removed part while on immunotherapy and even after. But of course immunotherapy could create other intestinal/digestive issues.
                  Another thing I am wondering is if because I had the severe side affects on the BRAF Targeted Therapy (Taf/Mek combo) if that means I will likely have a propensity for bad side affects on immunotherapy. I guess if I don’t try, I won’t know. I’ve always been one who just can’t sit back and do nothing (that is on anything). But I tell you what, I went through heck on that other medication. But I guess dealing with what I had to deal with is better than the alternative, huh?
                  I’m curious about your situation, only if you care to share?
                  Best wishes!
                  Beverly
                  Participant
                    HI Double TT, sounds like you’ve been through it. Gotta keep fighting. Glad you won that fight with the insurance company. I just found out insurance denied the PET scan for me that was scheduled for tomorrow that my doc wanted. I just had that one PET in March, so I wasn’t holding my breath that they would approve again so soon. We actually had to fight for many weeks to get that one in March approved after a denial.
                    So how have you done on the immunotherapy as far as side affects are concerned? Also, I’m curious about your strict diet. What is that like?
                    I’m sure you counting down those 2 remaining months for the Nivo – wishing you the best!
                    Edwin
                    Participant
                      My health insurance has always approved PET scans for me. I have had 16 PET scans; one about every 4 months. I hope your health insurance company will reconsider.

                      Immunotherapy can work, even if begun many months after diagnosis. I was diagnosed stage 4 melanoma in August 2015. The Yervoy + Opdivo immunotherapy that I began receiving in April 2016 helped me.

                      Beverly
                      Participant
                        Edwin, they consider another one medically unnecessary since I just had the one in March (by the way, we had to go through hoops to get that one approve). So they seeking approval for a CT scan scheduled for next week.

                        So you didn’t have any treatment (including immunotherapy) for the Stage 4 diagnosed in 8/2015 until 8 months later in 4/2016?

                        Edwin
                        Participant
                          I received radiation to a rib in September 2015 and Keytruda immunotherapy from November 2015 to March 2016. My March 2016 PET scan showed that melanoma had spread to many bones. Since Keytruda immunotherapy had not helped, I was given Yervoy + Opdivo immunotherapy which did help.
                          Beverly
                          Participant
                            Hi MelanomaMike, looks like you have had a lot on your plate for quite some time. You are definitely strong! And thanks for the encouragement! I really appreciate it! IWhere are things at with you – are you going to see Dr. Hamid?

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