Low Platelets with Myelodysplastic Syndrome (MDS)

Hi Lori,
I'm back with questions...I just got home a little bit ago; my husband was told to go to the ER today because he woke up with a headache and had a fever of 100.8 (they told him to call if it went above 100.4). We were in the ER for 7 hours. His temp registered at 103.4 (forehead scan) then 102.7 (under the tongue) at 2:25PM (we got there around 1:00PM), then he registered 102 (forehead scan) and 102.9 (under the tongue) at 6:28PM. He had two transfusions this week, both blood and platelets. They had him go to the ER on Tuesday night after getting his non-treatment week bloodwork done. His WBC's were 3.42, RBC's were 1.84, Platelets were 13, Hemoglobin was 6.4. Last treatment was Nov. 22 (Vidaza); the above test was done on Nov. 29. He ended up get one transfusion then, and another one on Dec. 1.; WBC=3.17, RBC=2.13, Platelets=14, Hemoglobin=7.5. Today in ER the only lab I can currently know is Neutrophils at 1.38 (others haven't been posted yet). They don't know what is going on and admitted him. They did a chest x-ray and also cat scan of his head; I have not received that info yet either. Tested negative for Covid and RSV. Does any of this sound normal given his MDS and Vidaza treatment? He had taken Tylenol at 8AM but that didn't help the headache, and they gave him more Tylenol at the hospital (he's on meds for chronic AFIB and high blood pressure. Thanks in advance for any info you can provide.

Hi @shels93, I know the anxiety of an unexplained fever when on chemotherapy. It isn’t uncommon for that to happen several days after the last chemo treatment.

For your husband this is occurring during his off-treatment week and his blood numbers, before the transfusions, were quite low. That is when there is a possibility of a neutropenic fever. There often is no discernible cause but all precautions such as getting him back to the hospital for observation and possibly antibiotics is important. So he’s in the right place.

It looks like the transfusions helped elevate his red blood count and his platelets. But the WBC will have to regenerate on its own. Fairly frequently after Chemo, patients are given a medication to help promote WBC generation such as Neulasta. It can help prevent the possibly of infections due to the low WBC. Do you know if he was given Neulasta?

I’m expecting with some of the blood work his doctors ordered today that they also did a blood culture to check for bacterial infections. Those results can take a few days to return. He may also receive some prophylactic antibiotics if his fever persists.

Wish I had better news for you but this is not uncommon to have an unexplained fever and needing transfusions of RBC and platelets.He should start feeling better as his WBC count starts increasing again. How has he been doing otherwise? Are his doctors encouraged with his treatments?

Lori-thank you so much for the fast reply. He has not been given anything (specifically Neulasta per your question), or anything else for that matter. I actually tonight wrote down to ask his oncologist about why this is...I had read that others have been taking Promata /Prednisone/Rituxan for low platelets but he has been prescribed none of that. They did not give him any antibiotics today (or before). They did take two vials of blood (that tbh looked like airplane bottles of alcohol-a moment of levity) and were sending those out for testing. They also had him sign off on getting a transfusion tonight if levels continue to be low. Kicker is we're supposed to see his specialist on Tuesday (he is the MDS Specialist and would handle the BMT) but now we're wondering if that will have to be rescheduled (after waiting 2 months from our initial appointment with him). We were hoping to get perspective on how the doctor thinks he's responding at that appointment. He's been really tired, that is the biggest symptom. He also gets really winded going up stairs. His WBC's were 2.59 on 9-16, 3.57 on 10-25, 4.24 on 10-27, 3.42 on 11-1, 2.46 on 11-8, 2.49 on 11-11, 3.64 on 11-16, 4.45 on 11-18, 5.06 on 11-21, 3.42 on 11-29, 3.33 again on 11-29, and 3.17 on 12-1.

Thank you again so much for this.

Good morning, @shels93 Oh gosh, I hope your husband’s appointment with the specialist doesn’t have to be rescheduled. Especially after waiting for so long! Fingers crossed that his fever breaks and he can be released from the hospital in time for his appointment!

As far as meds, comparing what he’s being given with what other MDS patients are taking is a slippery slope that can lead to doubt. Each person has their own unique set of circumstances and what’s advisable to one, may not be the best fit for another. I saw that myself when I was being treated for AML. There was someone in the next room, (we became chemo buddies and friends) but he was on something completely different than I was and we had the same diagnosis…but, different bodies/different circumstances.
Underlying health conditions or comorbidities (having other health conditions) can direct the treatment plans.
But you are doing the right thing with talking to his doctor and asking questions.

My heart goes out to your husband. I can so empathize with that feeling of exhaustion and being winded. With his blood numbers down, those are, unfortunately, expected side effects. Lower RBC will have him feeling winded and fatigued because there’s not as much oxygen being circulated through his body.

Looking at his WBC for the past couple of months, usually, RBC’s are up as well. Was he feeling more energetic between 11-16 and 11-20?

@loribmt thank you. He did have more energy and was feeling good during the period you mention. I just spoke with him briefly; he's still very tired and said that they are keeping him for another 2-3 days; they just don't know what's going on and why he has this fever. I am now wondering if we should reach out to his specialist and get him moved there (Penn Medicine) instead of the hospital where he is now. Thoughts on that?

That’s encouraging to hear your husband had more energy during that period where his blood numbers were up! That’s what is expected and so welcomed after a crumby period.
Do you know how long he is going to be given chemo? Or is this what you’re hoping to find out from his specialist?

If you’re having concerns about the level of care he’s getting it wouldn’t hurt to get another opinion regarding his current condition, especially from his specialist. I’m sorry he’s going to be missing that appointment. But if you can a message to his specialist, hopefully he’ll call you or have his NP call you with a suggestion as to where might be the best place for care at this point and what he feels should be done!

From my experience, the 2 times I developed a neutropenic fever during my months of treatment, each required a trip to the hospital and I was given IVs of a broad spectrum antibiotic. Each time, the fever went away quickly after the treatment. It’s better to be safe than sorry!

When the immune system is severally compromised by chemo, infections, though not evident, can develop rapidly. So I would discuss the fact that he hasn’t been given a broad spectrum antibiotic at this point. It is fairly standard practice to do so. Most friends that I know who have gone through neutropenic fevers have had similar treatments to be on the safe side.

Here are a couple of articles that supports the use of antibiotics. https://www.uptodate.com/contents/diagnostic-approach-to-the-adult-cancer-patient-with-neutropenic-fever?search=treatment-of-neutropenic-fever&source=search_result&selectedTitle=4~150&usage_type=default&display_rank=4
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https://www.osmosis.org/answers/neutropenic-fever
You might want to ask his oncologist about this and also his new specialist!

I too have MDS. Mainly my red blood cells are affected but he does watch my platelets and for that matter all my counts. When I ask questions he doesn't hesitate to answer but unfortunately I don't know what to ask! When I read online I know the things to ask. His staff is also very helpful. Reach out to your Dr please? If you don't feel comfortable talking to them find a new Dr.

Hi @marcyjo, Welcome to Mayo Clinic Connect. I’m happy you found us. There are several discussions in the forum with members who also have Myelodysplastic syndrome, (MDS). I’ve posted several links below where you can connect with members such as @davidkreuser who was diagnosed in Jan 22, and @kjjjrader whose husband has MDS.
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MDS
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
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I have been diagnosed and under treatment for MDS:
https://connect.mayoclinic.org/discussion/i-have-been-diagnosed-and-under-treatment-for-mds-whag-are-the/
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MDS: How to increase red blood cells.
https://connect.mayoclinic.org/discussion/mds/
It’s wonderful to see that you have such a good comfort level with your doctor and his staff. Having that positive rapport and trust really go a long way to keep the stress level down when you’re dealing with a medical condition.
How long ago were you diagnosed? Are you currently on any treatment for your MDS?

I was diagnosed in Jan 22 but had been having issues related to this diagnosis since 2018. I am currently on Vidaza injections, reticrit injections and so many blood transfusions I've lost count. Thank you for the discussion links!