Symptoms of Relapse?

[Alicia Johnston]

Just a little more than one year ago (Sept.27 would be the 1 year anniversary), I had my SCT for treatment-related MDS. The donor was my halpoidentically (10/10) matched sister. I currently have very well-controlled, mild GVHD of the liver, skin, and gastrointestinal tract. 10 years ago, in 2009, I had a transplant for relapsed lymphoma, and the treatments leading up to that caused the MDS for which I was/am currently being treated for.

Until the last month or so, all had been going relatively well and I had been feeling better than ever. Then, I started to have some very bad bruising, shortness of breath, etc. I raised this with my care team, however, all CBCs and other tests were completely normal and I have been on steroids for GVHD which they felt was the cause of the bruising (thinning the skin). Of course, at the end of last week I got a call that my platelets had dropped near dangerously low, along with my hemoglobin and wbc and could I please go repeat my CBC to confirm. I did, and they had all dropped even lower. I will be having a bone marrow biopsy next week to investigate but my mind immediately goes to ‘relapse’.

Have you relapsed and what were the signs and symptoms?

[Amy Clark]

Alicia,
I am so sorry to hear that your levels have turned low again. I have been praying for you. I called my friend whose husband relapsed after his HSCT and she said his symptoms were extreme pain in the hips and shortness of breath. His MDS returned as AML, 56 days after the HSCT.
I will pray that there are some answers and options when you get the results of the BM.
Amy

• This reply was modified 4 years, 6 months ago by Amy Clark.

[Alicia Johnston]

Amy,
Thanks for responding and for asking your friend for me. My MDS has relapsed as AML…I found out just a couple of days ago but before that I needed 2 transfusions (blood and platelets), so any questions I had, besides the official diagnosis, were pretty much answered by that.

Seems that for me, given my previous medical history, and the fact that my initial MDS was therapy related, there aren’t very many options. One positive though is that the relapse happened more than 6 months post-transplant which tends to be a good indicator for a better prognosis (even if the prognosis is still not great). Just numbers anyway, right? 🙂

At this point, I’m not sure what I am going to do, but it will probably be to start on Azacitidine to see what kind of response I can get and to make my health an even bigger priority than it already is.

Thanks again,
Alicia

[Amy Clark]

Alicia,
Oh boy. I am so sorry to hear that. My heart is sad for you. I am going to up my prayers for you and your family. I am glad you have a care team it sounds like you trust. Now consider me part of your prayer team. Please feel free to message me with a specific prayer request/s. 832-540-4214 May God hold you in His hands as you look for the next steps to take. Amy

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