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Richter's Syndrome: Is anyone else dealing with this disease?
Blood Cancers & Disorders | Last Active: Jul 13, 2023 | Replies (9)Comment receiving replies
No results yet, tomorrow will be 14 days post biopsy so hopefully we will have results by then. We are hanging in. We thought after day 100 we could go back to more of a normal life again but it seems like that is not quite the case yet. We went in to Dana Farber last week and they said more than likely they will go back to the donor for more leukocytes and see if that helps. Other than fatigue and daily morning stomach issues though my husband is feeling pretty good overall so that's a plus!! I suppose we will, yet again, just wait and see where this road takes us next 🙂
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Good morning, You and your husband have been on quite the medical journey for the past few years. I’m happy that @colleenyoung has brought me into the conversation. I’m more than willing to offer encouragement and help out in any way I can. My bmt was 3.7 years ago (feeling fabulous) but I remember every step of that trek through transplant land.
That 100 day mark felt so far away in the beginning. It was a magical number where we hoped everything would return to a predicable level. In the transplant world it does signal a point where, should there be any graft vs host issues that they would not be acute, developing out of control rapidly. After the 100 days, issues tend to creep up slower. But it’s still a huge milestone because generally the worst in our symptoms is over!
Right after my transplant for AML, my doctor told me there were extra cells from my donor set aside in a freezer should there be a need for them. Sometimes our new immune system needs a little nudge to give it more, umph. The goal of our new cells is to be able to recognize and respond to cancer cells where our old cells failed. It becomes tricky though because of the anti-rejection meds we’re on in the beginning. Our new cells are hyper aggressive so they need to be held in check for a while to avoid any Graft Vs Host Disease (GVHD), attacking our body…the ultimate rejection! Unfortunately that also impedes the new cells from having a Graft Vs Cancer effect on any reemerging cancer cells. So that’s where the infusion of extra cells from the donor will come into play. It gives the new immune system a power surge to help seal the deal.
Your husband’s doctors are hoping that this will do the trick for your husband and get him into a durable remission.
The fatigue can be a friend for a while and the tummy issue should eventually go away. Seeing a smiley face after your comment let’s me know you two are taking this journey in stride. My husband and I frequently reflect that anyone going through this needs to keep a positive attitude, a sense of humor and a helluva sense of adventure because we never quite know where this road is taking us. ☺️
I’d like to keep tagging along so let me know how the biopsy turns out, ok? Wish you husband well for me!