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Need some cheering up

Forums Cutaneous Melanoma Community Need some cheering up

  • Post
    cjm22
    Participant

      Hi all, I haven't posted before but I'm a very avid reader of this forum. My boyfriend is in his mid-30s and was diagnosed with stage IV melanoma in early February with 3-4 brain metastases (they're not sure about the 4th yet – could just be a blood vessel – 1 was very large but the others are <1 cm) and some in his lungs, too. As far as we know there is no cancer anywhere else, although they're doing another full-body PET scan and MRI next week. He had a craniotomy for the largest brain met, then did WBR + SRS, and now he's about to start the Ipi/Nivo immunotherapy combo next week. So they're treating him pretty aggressively.

      Unfortunately the lung mets are progressing rapidly. One tripled in size in just 6 weeks — they did a CT scan in early February and did another one this past week. πŸ™ The largest lung met can't be surgically removed, partly due to its location and because there are other mets in his lungs so the oncologist says it's just not worth doing the surgery (also he's only 7 weeks out of brain surgery, where he had some significant complications afterwards and almost died… thankfully he's doing a lot better brain-wise now although still has significant headaches without painkillers). He started showing lung-related symptoms early last week with coughing, audible wheezing, slight shortness of breath and chest pain, so the doc ordered a CT scan and called later that night with the bad news re: significant growth.

      So far the doctors don't think this will change the treatment plan, since he is still able to do most of his daily activities, can climb stairs etc. and we all know immunotherapy has the best chance of long term success. But I'm scared about how quickly the lung metastases are growing and the fact that they're impacting his ability to breathe. πŸ™ I'm scared that the cancer will outpace the immunotherapy.

      They don't want to put him on BRAF inhibitors because, due to the funding situation here (we're in BC, Canada), that could prevent him from going on immunotherapy afterwards — the immunotherapy combo program he's on right now might not be funded in the province for more than a year. So they want to get him on immunotherapy ASAP.

      Not sure why I'm posting but just looking for reasons to be hopeful πŸ™ We moved in together just 2 months before this all started. He's had melanoma twice before — once in 2010 (mole removed), then a recurrence in lymph nodes (Stage III) in 2014, and now this. 

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        Threefitty
        Participant
          I’m sorry you are sharing this journey with your b/f, glad you are with us. You no doubt bring vigor and value to him that you cannot imagine.

          You clearly have done your homework. So you know those drugs, or even one of them, may be a game changer.

          Take care of yourself too, you have a fight to fight. Not just from the corner, like boxing. It’s tag team, like rasslin.

            Oldwife
            Participant

              Is Cyberknife radiation treatment possible? My DH had Cyberknife for a lung met in January. We haven't had the 3 month CT scan yet to see how it worked. However, the treatment itself was without any side effects at the time, very easy. Expensive though, if insurance didn't cover it. (ours did.)

              cjm22
              Participant

                That's an interesting idea – they haven't mentioned that as an option for dealing with the lung met! I wonder if it's because radiation sometimes requires steroids to reduce swelling? I know that's why the doctors waited 30 days after he finished whole brain radiation and stereotactic radiosurgery before starting the immunotherapy – they needed him off the Dexamethasone (which counteracts immunotherapy). If the lung met symptoms get worse I'll ask about that.

                cjm22
                Participant

                  Thanks Anonymous. It's not easy. I'm a terrible rassler… πŸ™‚

                Bubbles
                Participant

                  So sorry, CJM.  Sounds like your guy (and by extension, you as well!!) have been through a lot!  Glad the brain surgery, and if I am understanding you properly, radiation to the brain have been completed.  VERY glad that the ipi/nivo combo will be started soon!!  There is data demonstrating that immunotherapy works in the brain and body.  There is also good data noting, that when radiation and immunotherapy are combined…the response in the patient is better than that provided by either treatment alone!!  

                  We melanoma peeps also KNOW that while melanoma is never easy….the path is much more navigable with we have great support from those who love us.  In that alone, you are giving your boy friend a great gift.  

                  Hang in there.  You both can do this.  I was first diagnosed in 2003.  Stage IV with brain and lung mets in 2010.  Surg to lung, SRS to brain met, and nivo as a single agent.  Last dose in 2013.  Still here.  Still NED.  I wish you both my best.  celeste

                  There are many, many articles re radiation and immunotherapy (not to mention care givers) on my blog if you are interested.  c

                    cjm22
                    Participant

                      Yes, he had brain surgery, then whole brain radiation for 10 days, and then stereotactic radiosurgery for the 2-3 remaining little brain mets. So a lot of brain stuff! That all finished up about a month ago. We haven't had a follow-up MRI yet to see how that all worked (that scan is coming upin a couple days). He still gets headaches but they're controlled by a lot of pain medication and a by-now very low dose of Dexamethasone, which he's stopping on Tuesday so he can start immunotherapy later next week. The personality changes etc. after the brain surgery (and probably also due to all his medication) have been hard, but I think he's slowly becoming himself again. It's not an easy time for him though.

                      I've read your blog a lot πŸ™‚ It's very helpful and encouraging although a lot of the science words go over my head!

                    So sorry to hear about your boyfriend's diagnosis.  I've had great sucess with crainiotomy plus radiation and yervoy/opdivo and then opdivo.  There is hope.  Try to stay positive.  Good wishes to you both.  This is a tough journey to be on.

                    Jennifer

                      cjm22
                      Participant

                        Thanks so much for sharing. I hope we see similar success. Stories like yours give me hope!!!

                      JohnyThomas
                      Participant

                        Hello Everyone! I am a professional blogger and also provide HP Printer Support to the HP user who has any issue regarding HP device like HP Desktop and Personal Computers, HP Printers and Scanners, HP Tablets and Touch PCs, HP Laptops and Netbooks.

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