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Sdmotorcop

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      Sdmotorcop
      Participant
        I had Covid in February of 2000 (before testing was available). All of my CT scans from 2/2020 to around 10/2020 showed ground glass opacities. I went from stage 3C to stage 4 in June 2020 with lung Mets. All of my CT reports said the GG appeared to be viral in nature. It took a while for my lungs to heal up. If you’ve had covid, it might be worth looking into..
        Sdmotorcop
        Participant
          I have been on the Braf/Mek combo since July of last year. I started off with the full dose (6 and 6). Within 2 days my eyes became “wonky” (my term for it). My eyes became dry and blurry. I wear glasses so I kept thinking my glasses were dirty 😁. I also noticed that everything appeared dark like I was wearing sunglasses inside. These side effects lasted about 1 week. Another side effect was nausea. The nausea side effect lasted for about a month before my oncologist dropped the dose to 4 and 4. I had tumors in my lymph nodes and lungs. The tumors in my lymph nodes have all but disappeared. The lung spots haven’t shrunk, but they haven’t really increased either. I’ll take that as a win. The only other side effects is low iron and being very tired (low iron = tiredness)..
          I don’t really look at these meds as a Hail Mary. They are just another tool for the oncologist to use to get the tumors under control. I hope your wife starts to feel better. Aside from some transient nausea, I feel pretty 😊.
          Sdmotorcop
          Participant
            Hi Brian,
            I am a fellow OHSU patient. I’m currently going to the Knight Cancer clinic in Beaverton. I had a really great oncologist (Gary Takahashi) who was a victim of this vaccine mandate mess. I’m currently being seen by Dr Anderson in Portland. Seems like a really good Doc who listens. My dermatologist is Dr Berry and her team (she was a previous Mel researcher).
            I was a 3C until I advanced on Nivo after 10 months. Did 3 doses of Ipi which seemed to be working. After finding new spots, I was put on targeted therapy (since 7/2021). Several nodes have shrunk, however I have a couple that a stubborn in my lungs.

            I live out on the coast so I’m local.. I try not to go to Portland or through Portland 😁. DM me.. my email should be in my bio
            Bruce

            Sdmotorcop
            Participant
              I have been on Mektovi/Braftovi since July 21. I was unable to stomach the full dose (6 and 6) due to some extremely bad nausea. I am currently taking a smaller dose (4 and 4) and am tolerating it ok. The combo has caused my red blood cells and iron levels to crash causing me to be anemic. The low levels caused me to be out of breath and extremely tired. It also caused restless leg syndrome. Out of all of the side effects, the RLS sucks the worst. I go in on Wednesday so they can squeeze a bag of iron into my system.

              On a better note, I had a CT scan which showed several of my previous hot lymph nodes had vanished (groin, mesentery, upper lung). I have a stubborn one in my lower lung.. it stayed the same size after 4 months. I’ll take that as a win any day.

              History.
              9/2004 1.7 mm low back, sentinel node clear

              7/2017 melanoma in situ left shin

              4/2019 4.3 mm behind left knee, sentinel node left groin positive

              5/2019 start Nivo

              5/2020 stop Nivo due to progression

              6/2020 start Ipi (3 of 4 doses due to lever toxicity)

              7/2021 start Mek/Braf combo after progression.

              Interesting Note..
              When they ran the first genetic screen, I came back as BRAF negative. Per my oncologist the lab had used semi outdated equipment (Kaiser). My oncologist re-ran my sample using new equipment and I came back as BRAF positive. I’m eternally grateful to him for giving me another avenue to fight this nasty cancer..

              Sdmotorcop
              Participant
                I’ve been on targeted therapy since June (Braf/Mek) and have lost about 25 pounds. My oncologist told me to eat more ice cream.. I told my wife the Doctor told me I HAD to eat ice cream. She looked at me, rolled her eyes and walked away laughing..  I would much rather follow my doctors orders.. my alternative is green stuff (brussel sprouts)… yuck
                Sdmotorcop
                Participant
                  Thank You to all who replied. I’m still on the full dose and am still fighting the nausea. My oncologist started me on a nausea med called granisitron (or something like that). Still pretty nauseous but it’s a bit better. I eat one meal a day with a couple of snacks. I’m thinking about going with protein shakes that you buy at Costco.

                   

                  Sdmotorcop
                  Participant
                    I’ve been dealing with some pretty severe arthritis for the past year and a half (Nivo for a year with polymyalgia rheumatica like symptoms. Nivo failed and started Ipi). After the Ipi kicked in, every joint in my body hurt. I’ve been on 10 mg of prednisone since starting Nivo. My oncologist had me try sulfasalizine which did nothing. He put me on remicade/infliximab (last infusion was 3 weeks ago). It seems like it’s starting to work (definitely not an over night cure all).  Time will tell 🙂
                    Sdmotorcop
                    Participant
                      I had the same conversation with my oncologist. He said LDH is part of the picture, but not the whole picture. Like you said.. live life to the fullest 😁
                      Sdmotorcop
                      Participant
                        Scars are your History! Be proud of them.. :good:
                        Sdmotorcop
                        Participant
                          Hi Ekaterina,

                          I progressed to stage 4 (4 lung Mets, 2 lymph nodes, 1 stomach and psoas muscle met) after 10 months on Nivo (One dose a month). My oncologist had me start on IPI only in June of 2020 (3 of 4 infusions..liver numbers went up so no #4). So far so good on just the Ipi. 3 of 4 of the lung Mets are gone along with the psoas, lymph and stomach Mets.  My oncologist said some folks progress on Nivo, some don’t. He said that once the immunotherapy is in your system, it’s in there for good.
                          I’m 57 and Braf wild type (negative). My lung Mets had pretty high pet scan uptake levels (around 17 ). It looks like your moms uptake is still pretty low which is good..

                          The Ipi treatment for the first couple months was a bit brutal, but nothing us 50 somethings can’t handle :good:

                           

                           

                          Sdmotorcop
                          Participant
                            Hi Ed,

                            this last one was via CT scan. I guess I had reached my limit of 3 PET scans for the year (due to radiation). All nodules had decreased uptake at my last PET in October.

                            Sdmotorcop
                            Participant
                              Thanks for encouraging news Ed. I went to stage 4 after 10 months of Nivo (lung, stomach and lymph node Mets). I did three doses of Ipi (June 20) before my liver started to go wonky. My last Pet was encouraging with a decrease in size of all Mets. I have a ct next week so I’m keeping my fingers crossed.
                              Sdmotorcop
                              Participant
                                Did I hear Dr Weber correctly when he said if you are BRAF wild and you progress on IPI/Nivo that you are kind of hosed? I would hope they’d be looking into treatments for that also..
                                Sdmotorcop
                                Participant
                                  Trent,
                                  I feel your pain and know what you’re going through. I stopped Nivo in May due to progression (Stage4 from a 3C.. 10 doses). Lung Mets, stomach, psoas muscle and several lymph nodes. My oncologist started me on IPI in late may. I received 3 doses of Ipi before I had to stop due to some really high AST/ALT numbers. I was lucky with the Nivo (polymyalgia Rheumatica, fatigue, generally just feeling blah). My first dose of Ipi was great with no real side effects. My side effects started with the second dose. I had high fevers that lasted a month, extreme fatigue and tiredness, loss of taste for 5 weeks along with what I would describe as bone pain.. The polymyalgia Rheumatica ramped up to the point where I can barely lift my arms and or walk… there were days when I wondered if the cure is worse than the disease..

                                  Fast forward to a few days ago.. doc sent me in for a FU pet scan.. it showed my lung Mets have “resolved” with the other Mets decreasing to minimal levels…
                                  NED… nope.. but getting there… I only had 3 of 4 Ipi and 10 of 12 Nivo.. I know the side effects really suck.. but as you see.. you can get results with partial treatment.. from one Mel warrior to another… hang in there!

                                  Sdmotorcop
                                  Participant
                                    Hi Snoe,
                                    Earlier in the summer I ran a fever for 3 weeks (after second dose of Yervoy). My oncologist recommended alternating Tylenol and Motrin. For me it worked well (my fevers ranged from 99.6 to 103.2). I used a Tylenol dose of 1000mg and a Motrin dose of 800 mg every 5 hours. I understand you’re on targeted therapy.. a fever is a fever no matter what treatment you take. I’d definitely talk to your oncologist about any medication changes..

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