Katie

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  • #89253

    Katie
    Participant

    Hi Sharon,

    My allo was my second transplant so I have started Revlimid as a third line treatment.

    They found my plasmocytoma through the increase in light chain count but it was pretty moderate. I believe it went up in 2's and 3's. Have you counts risen at all?

    I had a CT/Pet scan which identified the lump on my rib but as it was the only one, they wanted to do some radiotherapy quickly to eradicate it. Unfortunately i have suffered from GvHD in my lungs and they were considered too vulnerable for the rt so i was put on low dose thalidomide instead. Like you, my chimerism was 100% donor and the GvHD was there but sadly it just didnt last long enough. About six months later, i found a lump on my head and the light chains jumped up.

    There are some other treatment options such as LDI (Lymphocyte Donor Infusion)I think, a top up of stem cells. Might be worth asking about..

    However, i have read a couple of blogs from America where patients have a couple of plasmocytomas but havent fully relapsed so please dont give up hope. Pray for an isolated lump that can be zapped if anything. What are the other options if it "something" else? Better or worse?

    Let Christmas take your mind off it for now and be cheered up by your children.

    lots of love

    #89247

    Katie
    Participant

    Hi Sharon,

    Sorry to hear your news. Eighteen months after my allo, I developed a lump as well. I believe it's not uncommon.

    Hopefully a shot of radiotherapy will sort it out and click your immune system back into gear.

    Unfortunately I fully relapsed about six months later but many people don't.

    Good luck

    #96587

    Katie
    Participant

    Hi Debs,

    Your trial sounds interesting. Sounds like you have all three novel treatments up front.

    Will that not compromise you at first relapse, having experienced the drugs before?
    Xx

Viewing 3 posts - 1 through 3 (of 3 total)