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Essential thrombocythemia

Blood Cancers & Disorders | Last Active: Oct 16 9:36am | Replies (142)

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@blkalydy973

I am 73 and was diagnosed with ET following an emergency gallbladder operation back in May 22. I had to have a bone marrow biopsy to confirm the diagnoses. My count was in the high millions. I was put on hydroxyurea…500 mg 2x a day. I am told I will be on it for lifetime due yo my age. My platelets are back in the normal range but not thrilled to be on this drug. Side effects have been few but told to flush the toilet immediately after urinating and close the lid. Anyone else told this.. How does that affect sexual contact with your spouse? I am seeing the oncologist on Monday so may ask him this too…it hasn’t been easy to address these issues with the dr.

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Replies to "I am 73 and was diagnosed with ET following an emergency gallbladder operation back in May..."

Hello @blkalydy973. Welcome to Mayo Clinic Connect. You’re wondering why you’ve been told to flush the toilet after urinating and to close the lid. I can help you with that. When I was being treated for my acute myeloid leukemia a few years ago, I would have week-long chemo treatments in the hospital. I also was on a medication I had to take at home in a capsule form. Both were highly toxic and for the pills I needed to wear gloves when taking them out of the packets to swallow.

When we use the bathroom, we expel the toxins from our bodies and the fluids end up in the toilet. Flushing, sends an aerosol into the air and these chemicals can then expose family and pets to the toxins.
In the 2 hospitals were I was being treated over the months, I was given plastic lined paper sheets to lay over the toilet before flushing. I had to wear gloves to wipe myself. Nasty stuff!
At home, where there is a lid on the toilet, closing it will help reduce the spray. I was instructed to then wipe the lid and seat after flushing with damp soapy cloth in case spray touched those surfaces.

I found a great informational sheet for Hydroxyurea and safety protocol. https://www.oralchemoedsheets.com/sheets/Hydroxyurea_Patient_Education.pdf

Hopefully this is helpful for you. Sometimes we have no choice but to take medication to keep us healthy. In our house, we call it “Better Living Through Chemistry” reminiscent of the old film-strips I had in elementary school! 😅

Don’t hesitate to speak with your oncologist or their nurse practitioner about concerns you have. They are your best source for information concerning your health. But you came to the right place by signing on with Connect. So many members are on the same blood disorder journey right along with you. It really helps to connect with people who can relate to what you’re going through. What are your side effects from the hydroxyurea?