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Bubbles, et al – would love your thoughts on delayed immunotherapy

Forums General Melanoma Community Bubbles, et al – would love your thoughts on delayed immunotherapy

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      Bubbles, et al…

      I posted a topic on 7/19/19 on my Stage 3B situation regarding questions/thoughts on immunotherapy months out from surgery. I received some responses from some wonderful folks so far like MelanomaMike, Mark_DC, and DoubleTT. Thanks so much to each of you! My apologies in advance if protocol is to not re-post on the same topic. I would love to hear from Bubbles/Celeste, Ed, and any others who have been on this Board. I mention Bubbles/Celeste and Ed specifically only because I am most familiar with their story and input for so long, fighting the fight for so long, and so selflessly continuing to give and help others. I, by absolutely no means, want to seem like I trivialize all of the other wonderful people on this forum. I would love to hear from more brave warriors.

      If you wish, you may go back and read the original post on 7/19 for more details and questions. But in a nutshell, I have Crohn’s (DX 3/2016) and I am exactly 5 months out from surgical re-section to remove an in-transit melanoma on lower right back (no lymph nodes involved at time of PET scan in March). But Stage 3B because of being In Transit. First melanoma DX 12/2013 (surgery 1/2014). Tested 3/2019 and BRAF positive. Started Taf/Mek combo in late April, ended up in hospital for one week after about 3-ish weeks on the meds. Had to stop the meds right before hospitalization. While in hospital, was told need Crohn’s surgery. Went home for a week. Back in hospital on June 3 for that surgery and in the hospital for a week. (Crohn’s surgery was already in my future, but not anticipated for about another year). Anyway, they did a temporary stoma. The stoma was put in place to delay recurrence of the Crohn’s around the area of the intestine that was removed and hopefully allow me to do immunotherapy without the meds causing problems with that. My oncologist and Crohn’s doctor and surgeon had consulted on this previously. However, I needed my intestines to heal for at least 4 weeks before I could start any immunotherapy. Fast forward to now about 6 weeks out from Chrohn’s surgery. Met with oncologist on 7/10 and she could not say whether immunotherapy would provide any benefit or not this far out (which is 5 months+) since all the studies/trials were at 12 weeks of surgery. She tried for another PET scan to make sure still no cancer and have baseline for starting immunotherapy if we went that route. PET was scheduled tomorrow but insurance denied. No surprise there. Not sure yet if she will try Peer to Peer or put in for a CT instead. I’ve been through this tupe of thing before and I know a peer to peer would not help. So likely a CT. Anyway, by the time a CT is done and trying to get insurance approval, etc. for immunotherapy, it could potentially be 6 months since surgery before starting any immunotherapy.

      Should I try it at this delayed timeline? Could there be benefit? Could 2.5 weeks of Taf/Mek combo eradicated anything if there were microscopic cells floating around? Am I at a higher risk of severe side effects because I had them on the Taf/Mek combo? What would you do if you were me?

      I want to try because I’m scared to just “watch and wait” but I’m also scared of potential side affects given my history with the Taf/Mek. If the melanoma comes back, it could be at the next Stage (this is my 2nd time with it – albeit 5 years apart) so that is concerning.

      Also to consider is the whole original reason behind the temporary stoma was in anticipation of immunotherapy. If I don’t do immuno, then if I chose, I could have reversal surgery to reconnect intestines and get rid of stoma as early as October. If I do immunotherapy, I would need to wait until a time period after completion of immunotherapy. While I absolutely do not like having this stoma, I would rather have that than the melanoma obviously. So I shouldn’t muddy the waters about the stoma and just focus on immunotherapy or NOT at 6 months out from melanoma surgery.

      This is so overwhelming. I know there are many others currently struggling or have struggled more than I am, and I pray for each and every person who is fighting the fight. Thank you so much for reading my long story. Sorry it wasn’t a “nutshell” !

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          Hi Beverly — I am pretty sure I am right that taking immunotherapy five months after surgery need not be a problem, can be totally fine as adjuvant therapy. (But am no expert!)
          What I dont understand are the implications of Crohn’s Disease, your sensitivity to TAF/MEK and the other surgery that would be desirble for you.

          I am assuming you are NED now, right? All removed? Then the doctor may think why bother with immunotherapy as adjuvant, when watch and wait could work too. Especially when you need surgery and immunotherapy (for some reason which I dont understand) would prevent that surgery. And if you do immunotherapy as adjuvant then it could be for a year or two and you dont know if it made any difference. This may be why the doctor does not recommend.

          But this does not mean that taking immunotherapy 5 months after surgery does not help. I think it can. Just that it may be better to do the surgery and then tackle the melanoma and possible recurrence later. Thats a judgment call.

          Others are more expert (and I hope will correct me) but hope this helps
          good luck Mark

              Hey Mark,
              WLE surgery to remove melanoma, and clear margins. And NED as of PET scan in March. She wanted adjuvant therapy initially because this was my second time with Stage 3 and it being available where it wasn’t before, and my higher risk of it returning because not only of my history, but because this last one was an In-Transit melanoma – so not a skin surface melanoma but it was within the subcutaneous where all the lymph / blood vessels are meaning it is a high chance there may be cells travelling that has not yet clustered together to form anything visible on imaging. This is how it seems this lump of melanoma cells formed….came from the original one 5 years ago.

              Thanks for your thoughts…it really does help!

              Hi Beverly,

              Melanoma is never simple and when you add Crohn’s disease things can get crazy fast as you are more than well aware!!! Fever, subsequent dehydration (though probably also complicated by Crohn’s), and changes in liver function are very typical side effects related to targeted therapy (your TAF/MEK). While miserable and even dangerous, they are often managed by hospitalization (if needed), fluids, drug holiday, and gradually resumption of treatment on a lower dose and/or alternate dosing schedule. I would highly doubt that your Crohn’s flare was related to your targeted therapy. As I am sure you have already experienced in your life, Chron’s disease flares are intermittent and unpredictable. BUT! Can I prove this? ABSOLUTELY NOT. So….restarting TAF/MEK cautiously would be one option.

              In regard to immunotherapy, we know that folks with pre-existing immune diseases can have problems with that therapy. But, we also know that with care and close observation they can tolerate the treatment and attain good response in regard to their melanoma. Here are only a zillion links to articles and reports:

              I don’t see that starting immunotherapy as adjuvant at this moment rather than a few months prior would make that much difference in response. I was diagnosed with Stage IV melanoma in April of 2010 and did not begin my immunotherapy adjuvant phase 1 trial (after having upper lobe of right lung surgically removed and SRS to brain met in April and tonsillar met removed in October) until the very end of December because there was NO treatment option available to me until then. AND….I’m still here – NED for melanoma ever since, last melanoma treatment in June of 2013.

              Still, watch and wait, especially since you have had no lymph node involvement, is also a valid option, utilizing surgical “cherry picking” as treatment if more intransit mets occur.

              Most importantly – treatment choice for melanoma is a very personal decision that only you can and should make. You are doing the right things: Educating yourself about your options. Thinking through those options. However, there is one more super important thing I would do if I were in your shoes. Get a second opinion outside of your current physician group. Not because they are bad or wrong. Just sometimes (as with this board) when different folks look at things, they see them from different perspectives. Your case is more complicated than average. Therefore you need to talk to someone who sees and researches lots of melanoma. If I am guessing properly that you are in Virginia……Slingluff would be an expert in your area:

              Hope that helps. c

                  Thanks so much for your response, Celeste. Great points to consider. I am worried that while there wasn’t any lymph node involvement that showed on PET scan, because this was an In Transit, that there may be microscopic cells traveling around in lymph / blood vessels (or be elsewhere) and cells have just not yet clustered together enough to show on imaging. This In Transit was a skin coloried lump that appeared 5 years later just a few millimeters away from my first melanoma on my lower back with the first melanoma being a mole. I first noticed the lump in August last year with the doc saying adamently it was just a pillar cyst and doing nothing and then finding out in January it was indeed melanoma. So I don’t know what it means going 5 years before it came back this last time and what it might mean in terms of chances of it coming back again as In Transit (or elsewhere) being that the In Transit was hanging around as a visible lump for at least 7 months before the surgery date.

                  I want to know what a doc would recommend being this is my 2nd melanoma 1) as if I did NOT have Crohn’s 2) taking my Crohn’s into consideration before I had Crohn’s surgery in June and 3) taking into consideration the Crohn’s with the surgery removing the diseased portion and not reconnecting but doing the stoma. Again, the oncologist consulting with my Crohn’s specialist, suggested my best chance with immunotherapy would be with the surgery BUT doing the stoma instead of re-connecting. But now local doc saying she’s not sure of benefit starting immuno now. I’m just at a loss as to what to do. By the way, my Crohn’s specialist is Dr. Dario Sorrentino (very highly regarded in Crohn’s) with a very impressive resume on linkedin. Fortunate to have him.

                  Thanks so much for Dr. Slinguff’s name…I think I’ll go see him.

                  And so glad you continue to be NED! Praying that continues.

                ed williams
                  Hi Beverly, just read the two comments above and just wanted to add some information for you, in regards to the advice that Celeste gave you I have a couple of link on IRAE’s first one has Dr. Postow of NY speaking and at the 1 hr 23 min mark (for 6 mins) he gets into difficult cases with immune issues and I hope you take a way a few things but one thing in particular is wait and watch is not a bad idea for some adjuvant patients since new drug approvals are so new with overall survival data still pending. Second link will be from Dr. Mario Sznol of Yale and at the 12:00 min mark he gets into IRAE’s with immunotherapy. Last point I want to make is 2nd opinion especially with how complicated your situation is, and not trying to put down your medical team but the Dr. you list on your profile is a Hematologist not a melanoma expert and in your case I would strongly suggest a melanoma expert should be part of the decision making process.
                      Hey Ed, thanks for the info. I’ll take a look.
                      With regards to my medical team, I understand what you mean about seeing a melanoma expert for sure. Dr. Gillespie Twardy specializes in medical oncologist and hematology, mainly oncology. And while not a majority of her patients are melanoma patients, she does have a significant number of melanoma patients. Having said that, I certainly would prefer a doc who deals only with melanoma but I have to travel a distance to see one regularly. So I did go see a melanoma specialist at Duke University (Dr. Salamas) back in April for a 2nd opinion. With my situation, she would not treat me with the Targeted Therapy or immunotherapy and said she would only do watch and wait approach worried about my Crohn’s and suggested even those without pre-existing auto immune disorders that most patients have serious side affects including of the gastro tract, that she has at least one patient per week admitted to hospital, and deaths (while few) do happen. But local doc suggested the Targeted Therapy for my BRAF in lieu of immuno since I was BRAF and with my Crohn’s…rather than doing nothing. I didn’t want to just watch and wait either. So tried the therapy. I know if I go back to Dr. Salamas at Duke, because of the side affects to the Targeted Thearpy meds, she’ll still recommend watch and wait and not do immuno unless comes back. So I’m considering going to see Doc at UVA that Celeste suggested to get his opinion on things.
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