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!

@loribmt hello…good to see your name again (it’s reassuring 🥺)…yes-he gets labs on Mondays & Thursdays and transfusions on Tuesdays and Fridays…1 bag if over 10 and 2 if single digits…

Good morning, @shels93 Aw, you’re very sweet. Yes, I am still here, vertical and ventilated as one of our fellow members says. ☺️

Oh goodness, your husband’s labs/transfusions schedule pretty much excludes much of anything else these days, doesn’t it. I know from personal experience how disruptive that is and it can also be disparaging. But for right now it’s a life saver! So hang in there.

Hopefully the BMBX will shed a light as to what’s going on. This abrupt decrease in platelets seemed rather sudden after being pretty stable over the past three years, albeit with lower than normal platelet levels. A new drop in platelets may not necessarily be related to his transplant. Did your husband have a recent illness or vaccinations?

No recent vaccines but he had what we initially thought were allergies that ended up being a cold…they tested him at oncology appt for everything but all came back negative…I should mention this was about 2 weeks after onset of symptoms…if it was something cold related that caused the drop, I’m very curious as to how long it typically takes for them to start rebuilding? I realize it’s different for everyone, but some kind of estimate would be helpful. Have you ever heard of Ozone therapy? A friend brought it up and I’m considering looking into it, but his oncologist PA said to wait on anything like that (and also papaya leaf extract) until they figure out what’s going on inside.

@shels93 Honestly, everyone is so different in their body’s response and especially those of us who have someone else’s bone marrow. We’re living with a borrowed immune system.
My own experience last summer was interesting. After avoiding it for years, I contracted Covid. All of my blood numbers prior to the infection were great. After, everything was fine except platelets took a big dip. That required a followup a few weeks later and the number went to the other extreme (still within normal range but much higher than previously). Three months later, all was fine again. I’m not implying this is what’s transpiring with your husband but just using an example how an illness can trigger a response in our blood components.
As for trying alternative therapies, really at this time, I think waiting to discuss this with your husband’s oncologist or PA is the best bet. Even seemingly innocuous supplements and therapies may interfere and add unnecessary variables when trying sleuth out the cause of an issue.

Is your husband’s oncologist his transplant team doctor?

@loribmt I don’t think so but I’m honesty not sure.

So yes I’m dumb…that was an absolutely ridiculous response…I misread your question. He’s the point man, the brains behind the operation.