Low Platelets with Myelodysplastic Syndrome (MDS)

Welcome, @sgt. I can imagine you're concerned. Have you had a chance to review the bloodwork report with your doctor yet?

I have and the platelets just keep dropping. I also have diabetes and liver problems, together with bone marrow issues. I have constant nausea and don’t sleep much. I just worry about the drop in platelets.

What has your provider said about the dropping platelets? Have you seen a hematologist?
Sue

Hi sue, Thankyou for your reply. I have had MDS for about 18 months, my specialist hasn’t said a great deal more. It is a blood cancer and I have only just come to the realisation that I’m very sick. I haven’t told my children yet, they will not cope very well with this news. I have been too sick to see them lately and don’t know when to tell them.

I'm sorry to hear that you haven't shared this diagnosis with your children. I think perhaps you could use their support, and maybe their help. While MDS isn't "curable", it can be managed to give you a better quality of life.
Have you read what Mayo Clinic has to say about diagnosis & treatment?
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
Let's call out to my friend @loribmt, who has dealt with blood cancer, to see if she has any thing to add.
Sue

Hi @sgt, I’m grateful @sueinmn brought me into this conversation. Oh gosh, believe me, I know what it’s like to get a diagnosis of a blood cancer. It fills us with terror! While I didn’t have the same ‘flavor’ of disease as your Myeloid dysplastic syndrome, I did have a very aggressive form of Acute Myeloid Leukemia. That was over 3 years ago and I’m alive and kicking! So let’s work some magic in your day and give you some hope!

Your specialist, whom I’m guessing is a hematologist/oncologist hasn’t told you anything about your disease? I’m sorry you’re not getting the feedback you need to hear to help you get a better understanding of what’s going on.
I don’t want you to live in fear. As Sue mentioned, it is not curable…as such. That sounds frightening, I know. But it’s usually a slowly developing disease and is often manageable with treating the symptoms. There are several types of MDS depending which cells are involved. Red cells, white blood cells or platelets. So if you’re finding that your platelets are down and you’re experiencing a slower clotting time than normal, there may be a platelet infusion from time to time.
Anemia is another aspect if your red cells are low and you’re feeling fatigued. There might be a blood transfusion offered to bring that level back up.

There are also medications which can help slow the progression of the disease. Ultimately, there is the outside possibility of a bone marrow transplant. My very good friend had a stem cell transplant 3 years ago for her MDS (that she had for many years) and her transplant doctor feels she is in a lasting remission from the disease. So there is hope and this is all doable.
It sounds like you’re pretty early in the discovery. Has your doctor not spoken to you about any of these options?

Telling your children is most important. You can not and do not need to go through this alone without some emotional support. My husband didn’t want to tell our, at the time, 35 year old daughter. But called her right away and we’re so glad we did! Our daughter was amazing through all of my journey. I don’t know the age of your children but if they’re grown adults they will surprise you at how well they rise to the occasion. Face this head on with them. You’ll feel a whole lot better getting this out in the open! And of course, now that you’ve joined us in Connect, you just acquired another family. ☺️
How often do you have bloodwork done?

It’s 7am in melbourne australia and I had a bad night. I have a bad abscess and uti at the moment compounded with acute nausea. I thank u all so much for your kind words of support. My symptoms seem to be getting worse quite quickly. Shortness of breath and chronic insomnia are prevalent at the moment which is very debilitating. I need to ring my haematologist, he is very hard to track down. Regards Sharyn

Hi Sharyn, with your MDS, your immune system is weakened. So, having an abscess and a UTI is compounding your misery in part because of your immune system being compromised.
I’m concerned when you mention that you have a abscess and also a UTI because both can become very serious quite quickly if not taken care of with antibiotics. I’m not sure where your abscess is located but even in the mouth these can go systemic and need to be treated. You may have a lower white blood count which means your infection fighting cells are low…that leads to these infections.

Yes, please call either your primary care physician or hematologist and explain what’s happening. You should have some bloodwork run and treatment started for your two infections. You also deserve find out if your MDS is progressing. If your hematologist is hard to track down, do you have an option of getting a second opinion?

I normally run platelets around 100, because I have NASH. Six months after I took the Pfizer vaccine I was hospitalized when my platelets dropped to 5,000. Now after several treatments including Rituxan my platelets are finally up to 84.

Thankyou for your kind words, I started antibiotics yesterday but still feel very sick. I saw my blood dr last week and that’s when he told me my platelets had dropped again to 64000, he has given me a slip to get bloods every month for 6 months. But I have no idea what sort of MDS I HAVE but my platelets are dropping. So is he going to wait until they are 10,000 which is dangerously low, I have no idea. Do u know what category of MDS MOVES VERY QUICKLY.