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JudiAU

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      JudiAU
      Participant
      I’m sorry to have you here but hope we can help. Immunotherapy works well for a lot of people. Best of luck and ask if you treatment questions.

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      JudiAU
      Participant
      I was encouraged to be vaccinated and was so eager that it was very close to infusions. I had one uncomfortable night. We are still careful in public because I don’t know my exact level of protection and I have kids who are too young to be vaccinated. But getting the shots let me have a little bit of life again.

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      JudiAU
      Participant
      My doctor is a proponent of throwing everything at Melanoma and seems to allow things that others don’t. For instance, he starts combo first, than allowed a very short break for surgical brain met removal, short course of radiation while in combo, and quite a long time of steroids while also doing immunotherapy . Many doctors won’t allow the drugs with steroids but it really worked for me. By my first scans the cancer sports where gone, my brain has been stable since surgery, will likely end immunotherapy in September. He says that none! Of “his” patients with a similar case history have had a reoccurrence.

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      JudiAU
      Participant
      My son and his peers have a strange side effect we call “dishes arm.” He and all of his friends seem unable to unload the dishwasher after vaccination. They seem to do all other activities just fine…

      lol. Just kidding. No real side effects.

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      JudiAU
      Participant
      The drugs make me tired. Steroids make me fat and annoyed. I spiked a very high fever after two rounds of combo was hospitalized for a week and then had a brain met surgically removed, started steroids, within a week cut them in half, radiation, restarted immunotherapy. Diarrhea  is common but for a lot of people it is mild, treatable with Imodium. Plenty of people go in to develop colitis.

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      JudiAU
      Participant
      As for healthy living, my oncologist says to do what feels good and makes you feel cared for. That might mean Uber health diet vs a diet of health and pleasure and sharing a bottle of wine on the weekend.

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      JudiAU
      Participant
      Welcome. Lots of good information here. I’m really hits people differently and speculation doesn’t help. Make sure you understand the possible reactions and their grades. You can have a mild reaction and continue the drugs. Have a strong reaction, get treated with a pause, and restart immunotherapy. You can have a severe reaction and get kicked off. There is disagreement among even the best oncologists about how to treat/stop/resume/ reactions how and when steroids/radiation are involved etc. my oncologist will allow steroids during immunotherapy (worked well for me) lots of doubled up treatments. There is not waiting around to taper steroids etc before resuming therapy etc. I think of this as full throttle.

      I had a low tumor burden but a large brain met. I have doing well for awhile now.

      oh, and don’t read go fund me profiles. Everyone seems to die there.

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      JudiAU
      Participant
      There is a larger thread below but no changes to bloodwork here.

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      JudiAU
      Participant
      Well, yes. I had one change. Regular mole for as long as I remember that changed when I turned 40. Grew, changed shape, flaked and this rude woman from preschooler hassled me to get it checked. 2B melanoma. 4 year later I was stage 4.

      so yes, it happens but mostly it does not. Rely on the pathology report. .

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      JudiAU
      Participant
      I had my first Pfizer shot one week before immunotherapy which I mostly had discussed. At the time I saw an appointment and jumped. My second was a week before  immunotherapy. No issues after. About three weeks later I add pretty complex outpatient surgery in the ear that was damaged by last brain surgery. The nerve damage in my face was pretty wild the first week but is back to its old self. Otherwise no real issues other than the fact that it took longer for me bounce back from surgery than I expected.

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      JudiAU
      Participant
      I have been on immunotherapy for almost two years. I’m 47 now but I have had no changes to my cycle and according to periodic CT scans that catch them in the process, ovulating robustly. I can’t comment on the quality of my eggs because I’m old and don’t want more children. I have seen a few threads here and there (go fund me? Where people had children after immunotherapy.). I know this isn’t very helpful but you haven’t had a lot of responses.

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      JudiAU
      Participant
      I’d be interested in what you have. I had disability based Medicare but I use my husbands employer’s plan which is really excellent. I’d be curious if I should be making another choice.

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      JudiAU
      Participant
      The silicone scar gel like Mederma + time have worked well for. My gigantic nine inch neck WLE is almost unnoticeable five years later. My oncologist at the time was a fine surgeon and nothing he removed is particularly noticeable. I have fair skin and generally don’t scar terribly. They will get better. My gnarly stapled head wounds are hidden by my hair. They are terrible but I don’t care.

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      JudiAU
      Participant
      I am glad to hear it is over. My original melanoma was on my neck. Neck and head melanomas are more likely to meta size to the brain, which is what mine did. What is your follow up plan?

      Neck and head wounds hurt like hell but I hate stronger stuff and just endure it with Hugh does Tylenol. All of the movement makes it worse.

      keep going to that barber. My dentist has diagnosed mouth cancer twice.

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      JudiAU
      Participant
      Whole brain radiation remains an option. I would consider a second opinion. It can produce good results and not cause the kind of damage we all fear. I recall my radiologist says that as well. (I’ve had brain radiation in two spots. Tired. And some gray hair only. )

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