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Low Platelets: Diagnosis to be confirmed
Blood Cancers & Disorders | Last Active: Aug 11, 2023 | Replies (76)Comment receiving replies
Thank you for responding back to me. I started out with a Hematologist that said I had ITP. He also said I showed no "Markers" for Cancer. He prescribed no medications to me and told me I would be fine and that my platelets would not drop below 20. At that time I was at about 49. Told me to come back in 4 weeks he wanted to run a Liver metabolic blood test. I had 6 years documented liver function tests plus a new Complete Ultra Sound of my Liver , Kidneys, Pancreas, etc. all found to be unremarkable. Also two MRI over 5 years showing unremarkable.
Thats when I changed Dr's. The new Dr sent me for the Bone Marrow Aspiration and Bone Biopsy,
It took three weeks to get the entire Diagnosis findings back. During that time prior to receiving the Bone Marrow Diagnosis the new Dr diagnosed me with ITP, or Pre-Leukemia, and put me on Prednisone 40mg morning, 40mg night. It appeared to be stabilizing the platelet loss for three weeks at 35-36,
Then he diagnosed me with MDS and continued the Prednisone. The next week my platelet level fell to 28.
By this time he had gotten the test results all back from the Bone Marrow Aspiration and Bone Biopsy He then diagnosed me with Aplastic Anemia and put me on Promacta 50mg Sept 15th. Platelets continued to fall weekly
and Promacta doesn't appear to be working for me as I am now at or below 17 as Oct 11th.
On Oct 11th he diagnosed me with Megakaryocytic Hypoplasia. Note that the Bone Marrow Biopsy identified 2 possible diagnosis, 1st) Macrocytic Hyperchromic Anemia and severe thrombocytopenia and may be related to an evolving MDS syndrome. 2nd) Megakaryocytic Hypoplasia and may be related to an evolving Megakaryocytic thrombocytopenia/Aplastic Anemia or evolving MDS syndrome.
That is when I contacted Mayo for Help.
I am currently taking the RITUXAN 4 week treatment. One 6 hr IV every Tuesday morning. I started Oct 11th, next treatment Tuesday the 18th.
I was told not to use heavy machinery, thump my head, don't get cut, shave with electric shaver don't get sick or hurt.
He told me last Tuesday before he sent me for my first RITUXAN treatment that at 10, I may go into a coma and for my wife to get me to the Hospital immediately. That was quite shocking to hear, but I guess he felt she needed to know what could happen.
According to the Dr my immune system is killing my platelets.
He is not much on conversation, so I only get bits and pieces.
But now it appears it's time for real professional help from Mayo and hope I'm not too late.
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Hi @rockitman You’re not too late…I’m so relieved to hear you have an appointment next week at Mayo. It’s truly a place of hope.
From what I’m reading, with your latest diagnosis your doctor feels your immune system is killing your platelets. That would be the B-cells in your immune system. So that’s where the Rituxan comes into play. It suppresses the B-cells when they launch an attack against our cells with an autoimmune response. They’re supposed to be protecting us but they can also turn against us. I was also on Rituximab for another issue with my bone marrow and it worked in halting the damage.
Rituxan’s initial side effect usually happens with the first dose while you’re having it done at an infusion center. The nurses are right there with benadryl or other meds needed to quickly counteract. When it’s given at a slower drip rate, the reaction to the infusion is diminished. I’ve had that happen and it wasn’t a big deal. My doctor and nurses all explained that this might happen and that they deal with it at the time.
Anyway, you’re scheduled now for a visit to the hematologist at Mayo. I’m a survivor because of my amazing care from the hematologists and bone marrow transplant teams at Mayo Rochester.
Which campus will you be visiting? Do you have any questions on lodging, testing, navigating? How about your Patient Portal, do you have that set up yet?