Home Forums Melanoma Diagnosis: Stage IV Two steps forward, one step back

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  • #20518
    angieg
    Participant

    After six years of bouncing from this trtmnt and that, I’m sick and tired of being sick and tired :? . Now that the mets have moved to my brain I feel like I’ve started the Melanomma Olympics :( I’ve completed 10 rounds of wbr ( which I guess is standard?) . Then I started Zelboraf at 720 twice a day ( lower dose because I had severe pain and painful nodules last time I was on it). No joint pain this time but the photo sensitivity got me within days even covered in sunscreen and clothes. What started as a small painful sunburn has turned into a festering, burning, flaking, miserable burn. Y doc stopped the drug for a week to see what happens but it didn’t sound good. I can’t stop crying. I have to take anti anxiety meds to sleep and I take tramadol for pain from headaches. Anyone have similar issues or advice? I have a husband and two little girls I’m not ready to give up!! God bless you.

    #55723
    Catherine Poole
    Keymaster

    I am sorry to hear about all that you have endured so far. What a miserable journey this can be. But you still have your sense of humor and spirit. I hope the Zelboraf helps you. Have you tried mindful meditation? There are many cds/books about it. Jon Kabat-Zinn is the founder of it and there are even some free downloads of his meditations. I pray things go smoother for you soon.

    #55724
    dkmc
    Participant

    I have been reading your post every time I log on. How frightened you must be. First thought was wow 6 years…6 years she has already beaten the “odds”. Of course you had to fight like heck to get here but here you are. I don’t know if you relize it or not but that is a total inspiration for us. Next thought is good you are able to get Zelboraf…Don is Braf negative but I think I read something about Zelboraf/MEK combo? Has your tumor been tested for C kit? vaccines if HLA positive(hope I got that right). TIL? I understand that one would be rough. I was going through my “trial book” I have made. Anything that looks interesting I print & figure it’s our back up plans…oncologist will go through them & help us decide what next…when(or if -cross all fingers & toes) he needs it. You’ve already done so much-chemo, Ipi, IL 2…Be on the look out for any anti PD 1 trials of course…but I understand it may be awhile before they expand. Good you are taking what you need to be able to sleep. Keep pain under control as best you can. You actually sound so very strong but I get it. You do get sick and tired of being sick & tired. Shoot…When things are rough for Don I can’t even stand all the doctor visits. Its not the visit itself just the way it dictates your life I guess. And I’m not even the patient! I have a real aversion to doing ANYTHING I have to make an appointment for !!! I know gotta shake my head at myself- that should be one of our least worries but there you are. Stay strong but ya know “tears are the safety valve of your heart” so if you need to cry then let it out. Please let us know how things are going. God bless, Karen

    #55725
    Catherine Poole
    Keymaster

    Well said Karen. I don’t blame all of you for being sick and tired of being on this journey! I pray we get some great breakthroughs soon to end this pattern for melanoma patients.

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