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Another bad day…

Forums General Melanoma Community Another bad day…

  • Post
    MarkR
    Participant
      Went for CT / MRI scan results today and not great news again. At 3 month scan was told stable but a little growth in some nodules that could be prior to a response. Today told that Liver nodules (didn’t know I had any!!) had grown and concerned about disease progression. Evidently some small spots appeared on my last scan but too small to be considered of significance. Overall my tumour burden is still very low and bloods are all normal.

      We had a chat about things and I mentioned the suspected vitiligo on my face, which he was interested in and confirmed it was. As it only appeared 6 weeks ago he feels I may still respond and said that he has not known someone to have vitiligo and not have a response…. (please if you know different on this then I really would sooner not know!!) He was involved in all the major trials and was lead author on the first report on the Ipi Nivo trials so hanging a fair bit on his words.

      Going to continue Nivo for another 3 months but if progression again then it will need to be clinical trials. He isn’t keen on adding Ipi again as I will likely have another severe reaction and thought could jeopardise trials that might be more promising. He spoke about trials where the immune system is extracted, upgraded and re-administered as his preferred option (can’t remember the term he used!!)

      Pretty worried about all this but I know response has been seen as late as 10 months in some trials so am trying to remain hopeful!!

    Viewing 8 reply threads
    • Replies
        Hukill
        Participant
          If it was me with those results I would probably feel good rather then bad. In 3 months with no treatment melanoma can go crazy in that time. The vitiligo is a really good sign. I have vitiligo which even after being off treatment for a year is still spreading. There was a link on here to some research on vitiligo and ipi/nivo that said about 3% get vitiligo and those that do melanoma was either 2 or 3 times less likely to return. I had 7 tumors in my lungs and they were all gone in 1 year. The vitiligo appeared about the 4th month. Do you have any other side effects?
            MarkR
            Participant
              Thanks your story us certainly kept me going recently. I have had a bit of fatigue and the vitiligo otherwise no side effects from the treatment. I am 6 months into treatment now and the vitiligo first showed at around 4.5 months. I did speak to the nurse and she confirmed the growth is small so relatively slow growing which I do take comfort from. Just hope it kicks in over the next 3 months
            Gene_S
            Participant
              RE: We had a chat about things and I mentioned the suspected vitiligo on my face, which he was interested in and confirmed it was. As it only appeared 6 weeks ago he feels I may still respond and said that he has not known someone to have vitiligo and not have a response

              I am still alive 5 years after treatment and have very nice bushy white eyebrows to contrast my brown hair 😉

              Did he mention your LDH numbers?

              Search “LDH and melanoma” for more info.

              Good luck to you.

                MarkR
                Participant
                  I don’t have the exact number just know it’s ‘normal’ – apart from increased Liver numbers last year on Ipi my bloods have always been spot on. It gives me a little more comfort!!
                  Cheers
                  Mark
                Bubbles
                Participant
                  Everything in melanoma has to be crazy, doesn’t it Mark?!!! And that’s not fun. However, Hukill makes some good points. Vitiligo is very much associated with a GOOD prognosis. Here are about a zillion reports if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=vitiligo

                  Hang in there. Your doc was probably talking about TIL as another treatment option should you need it…and there are others. But, here’s hoping a more definitive positive response will be noted at your next evaluation.

                  Wishing you a whiter shade of pale! celeste

                    MarkR
                    Participant
                      Thanks Celeste
                      I confess to having already read your great article on this and hopeful I can join one of those stats. I’ll have a read into to TIL treatments thanks as suspect that will be the next step in due course if the immune system doesn’t fully kick in.

                      Hope your keeping well
                      Cheers
                      Mark

                    jbronicki
                    Participant
                      Hi Mark,

                      I’m so sorry it feels like a setback, but the words that popped into my head when I read your update were “sometimes it’s darkest before the light”. As Celeste and Hukill noted, the vitiligo is seen as a positive sign of treatment starting to work. But god dang, Melanoma sure likes to make you sweat, doesn’t it. These treatments and processes are seriously mentally tougher than anything., and you are so tough with the biking and the very important work you do (still touched by the river work). I’m keeping every finger crossed that the treatment is kicking in. Stay tough and in the zone 🙂

                      Best,
                      Jackie

                        MarkR
                        Participant
                          Thanks Jackie – I certainly remain hopeful and in many ways have to count myself lucky that I still have good health and can do what I want to do. Glad to hear you have found something that is working for you and fingers crossed for your next scans
                          MarkR
                          Participant
                            Sorry Jackie – wrong post and you can’t edit afterwards!!

                            Thanks its certainly been tough the last few months and I have just taken the view to step back a little bit from work and look at reducing my hours a bit. I work 50 hours a week with another 10 on travelling and want to spend a bit more time with my family. Hoping this treatment eventually comes off, but getting longer odds now!
                            Cheers
                            Mark

                          lkb
                          Participant
                            Here’s another cheer for vitiligo. I started Nivo last September, had progression (tiny brain met) plus white eyelashes. Started Pembro (plus intralesional IL-12) seven months ago, and have had both shrinkage and vitiligo, starting about 3 months in. Scans next month. I know the report is mixed, but still, congrats on low tumor burden and normal labs.
                              MarkR
                              Participant
                                Thanks and sounds like a good trial you are on and hopefully there will be something similar for me if this doesn’t come off. Hoping your next scans go really well and you keep responding
                                CHeers
                                Mark
                              MelanomaMike
                              Participant
                                Mark! Well sheez, not sure about the Vitiligo, ill have to look that up, never heard of it, thought you where trying to spell Vertigo haha..Can your liver spots be enzyme build up? Is that possible? Or what iv learned as Psuedo Progression? Bitter/sweet that they didnt tell you about the spots in the first place…hope its no big deal, maybe thats just Yervoy poo that Yervoy left for you & yer Onco to see…..
                                  MarkR
                                  Participant
                                    Haha Vitiligo is the whitening of the skin that some people get naturally or can occur with immunotherapy. Normally a good sign, but I seem to be bucking the trend at the moment!! I was hoping something similar on the scans and confess to going on a bit of a drinking session a little while ago to release some tension. Spoke to nurse about it and radiologist is fairly convinced its mets. Only good news is I can still drink beer with the liver mets, but need to moderate myself to a couple a few times a week. I was a bit shocked with the new mets and mentioned it to them. In the UK they tend not to tell you all the gory details and only what you need to know and to be fair I would have only worried about it for 3 months so did I need to know? I’m kind of glad they didn’t tell me as I sit here today.

                                    Hoping for the best for you on the 12th and hopefully Hamid can get you on something that works fast and for a long time
                                    Best wishes
                                    Mark

                                    sing123
                                    Participant
                                      Hi Mark, sorry to hear about your news but also hopeful about the vitiglio! I was scrutinizing every inch of self for that all through treatment, sometimes daily! Never did find. And don’t beat yourself up for the drinking. It is good to keep feeling human. Because we are. Will keep you in my thoughts and continue hoping for a great outcome.
                                    Ellie_82
                                    Participant
                                      Hi Mark, google “pseudo-progression with immune checkpoint inhibitors”, you will see that it is very common. Tumors may look bigger on imaging but that’s because of the inflammation caused by the meds. At 3 months you are still in the pseudo progression window. Vitiligo is a very good sign too. All the best!
                                        MarkR
                                        Participant
                                          Thanks Ellie – appreciate the support. Unfortunately I am 6 months in to treatment so pseudo-progression seems unlikely at this stage. I’m hopeful for a delayed response so fingers will be crossed for the next few months
                                          Thanks
                                          Mark
                                          Ellie_82
                                          Participant
                                            Hey Mark, it is still unknown to some extent how and when people respond to immune checkpoint inhibitors. I think that unless your overall tumor burden has increased by at least 25%, you are benefitting from treatment. A minor growth in tumors isnt considered a failed treatment. They can grow a little then regress a little, it is called stable disease. If you are asymptomatic, stable disease is a good deal really. It can last a long time too. So as others have said, hang in there! Best wishes to you!
                                            MarkR
                                            Participant
                                              I don’t know the detail of my scans as in the uk they tend to tell you what you need to know rather than all details but they certainly confirmed slow growth and low tumour burden which gives me some hope. Hoping it picks up a bit more and my response improves again
                                            marta010
                                            Participant
                                              Hi Mark – my husband was diagnosed in 2012 at stage IV and developed vitiligo shortly after starting Zelboraf. He’s been through just about every available treatment (Zelboraf, Ipi, Braf, Keytruda) and is still here and battling – recently had his 4th craniotomy. Keytruda has finally cleared his body but the brain continues to give him trouble but is clear for the moment. I hope the vitiligo is a precursor to a complete response for you. Hang in there!
                                              Ann
                                                MarkR
                                                Participant
                                                  Thanks Ann trying to stay positive and hoping that next scan shows stable or better. I do feel it is doing something as overall growth is slow but just not quite enough to hold it steady. The vitiligo has increased again since I saw the doc on Wednesday so something is active but just need to sit tight a bit longer. Glad your husband is doing well for now – long may it continue
                                                MelMel
                                                Participant
                                                  I am in a similar situation as my tumors have stopped shrinking since I stopped combo treatment in Nov. 2018. In May, I resumed Opdivo only and my Aug. CT scan shows that all tumors remain stable except one which continued shrinking. I was worried about my progress or a lack of but having extensive vitiligo from early July my melanoma oncologist sees it as a very good sign. Apparently, one of her patients had seen tumor growth at 4 months and total elimination of tumors at 11 months since starting Opdivo. Let’s hope for the best.
                                                  Melanie
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