Drop in platelets 3 years post BMT

Hello

I am very new to this forum. I am interested in the pre-stem cell transplant experience.

I was recently diagnosed with CCUS with thrombocytopenia. My platelet count was 44 one year ago and was hovering around 30-35 over the past year. Last week it was 23. I am 60 years old and in very good health overall.

I have no outright symptoms associated with low platelets at this point and the approach since the diagnosis has been "wait and see what happens ".

Can you tell me what conditions/symptoms occurred to initiate the decision to complete a BMT? What were any other treatment approaches prior to the BMT?

Thank you

Hi @shels93 Welcome back to the forum. ☺️ I'm sorry to hear that there's a little anxiety surrounding your husband's changing platelet levels this far out from his bone marrow transplant. Usually by three years there's a level of predictability. But I've known patients, along with myself, who experienced some crazy swings in blood numbers. Sometimes there's an assignable cause, such as an underlying inflammation or poor graft function.

As your husband's doctor said, numbers can take longer to recover in some patients. Even if red and white cells are fine, sometimes platelets can lag. It doesn't generally mean a failure of the transplant.
The results of the bmb will be helpful for your husband's oncologist to evaluate and plan for the next step in helping to correct the low platelets. Has your husband been receiving platelet infusions?

Hi @pkarnick66 Welcome to Connect. Clonal cytopenia of unknown significance (CCUS) is a blood condition characterized by a low blood count without an apparent cause. In your case it is a decrease in platelets. Quite often, if there aren't any symptoms doctors suggest just keeping an eye on things with followup blood work in an active surveillance or 'watch and see what happens' period.

You're wondering at what point a bone marrow transplant would be considered. Most blood conditions such as CCUS or MGUS are treated with medications. I'm not a medical expert but have personal experience with having a BMT and being a mentor in this blood cancer support group. I've picked up a great deal of useful information. So my gut feeling is that a BMT, because of its intensity and potential side effects, probably wouldn't be considered unless other treatments have failed.

I found a number of discussions for you with other members who have been diagnosed with CCUS. You'll be able to connect with members who have the same questions and concerns. Here is a list of the results of the search. Please feel free to drop into any of the conversations and tag a member by adding their @name or replying to them by clinic in the blue reply box. That way they'll be notified of your comment.
https://connect.mayoclinic.org/search/
What has your doctor discussed with you about potential future treatments? How often do you have lab follow-ups?

Hi Lori

Thank you for the reply. I will certainly review the forums you have sent.

My current physician has not discussed any potential treatments, which is extremely frustrating. I am currently on an every three-month follow up schedule for bloodwork and visit but I have been doing intermediate bloodwork at six-week intervals to self monitor my CBCs.

My most recent PLT count was at 23, down from 28 six weeks prior.

I am otherwise very healthy and exercise regularly. Bicycle 3-5 times per week for 15-20 miles, no alcohol or ibuprofen for the past year and very healthy diet.

Thx!