Essential thrombocythemia

Actually NOTHING. The Gabapentin never really worked. I was at Stony Brook Neurology (Stony Brook University Hospital) on Tuesday and saw a Neurologist who specializes in Peripheral Neuropathies. While I was there my legs started to spasm which is a good thing because the Neurologist was able to see my major "symptom." She did order several genetics tests which should happen early next week. She ordered one for CMT and HSN. Not sure what the second genetic test is but I assume its for MS and other similar disease that strip away the nerve coverings. These tests are simple swab tests much like the genetic tests people get when they do Hereditary/Ancestry testing. Apparently, genetics testing has come a long way since the earlier blood tests that were very expensive. I did have a genetics test done at the VA Hospital about three (3) years ago for CMT but the VA only looked at 24 genes. The Stony Brook Neurologist said that test was "garbage" because there are over 80 known gene mutations that cause CMT. I feel this Neurologist is determined to find out what is actually causing my neuropathy.

Hello. I was also diagnosed in the UK with ET 10 days ago. I am 54 years old and have tiredness, and headaches. Although I wondered how much is my age vs ET. At the moment the Chelsea Haematology’s doctor said just take aspirin. The iron infusions sound interesting. They said I was low on B12. Is that connected? Any information links greatly received.

I was diagnosed with ET in 2006 at the age of 52. I had a bone marrow and iron infusions. My Dr. couldn't find anything with the bone marrow and the iron infusion didn't help. I was put on hydroxyurea and had a very bad reaction to it. After a few months, my Dr. changed me to anagrelide, which I adjusted to much better. I am now 67 and am still taking it. My platelet count was 1.2 million. I have gotten it down around the 500 thousand range with 3-4 a day. If I only take 3 a day, it is around 750 thousand. When I moved and got a new Dr., he did another bone marrow and found that my Exon9 gene is mutated. (If I remember correctly, this was the correct gene.) I stayed on the same medication, which is effective. I don't have any side effects that I recognize from the medication except for the days when I take four tablets, I feel tired. I also take a baby aspirin once each day. I get my blood checked once a month and an EKG every year. Today on my check, I was told that my red blood cell count was low and that this can be a part of the progression of the disease due to scarring of the bone marrow from making so many platelets. I'm going tomorrow to buy lots of spinach and kale! I am praying for a cure and doing meditations and visualizations! Meanwhile, I'm living life to the fullest! It hasn't slowed me down at all!

I meant to say that I get my blood checked every 6 months, not once a month!

Your diagnosis is worthy of getting another opinion - not to say that his assessment is wrong, but rather the "just take aspirin" comment. You need better care than that. 🙂

I agree…..”just take aspirin” is unacceptable. I was told by an infusion nurse “you have to advocate for yourself.” That means speak up, dont remain passive or quiet, at the end you will be the one dealing with the consequences. When you are dealing with so many unknowns, chronic pain, you feel hopeless, I encourage you to write down everything and present your questions to the doctor for research. You will be able to tell if your doctor is truly invested into your overall well-being. Advocate for yourself.

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.

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?

Wow. I have never heard this about Hydrea and I have been under an Oncologist and Cancer Center Care for over 7 years. HOwever, when I was in the hospital for some testing about 4 years ago, the nurses asked me to bring the Hydrea from home. I had my husband bring it up to the nurses who turned around and brought the capped bottle to me in a zip lock They told me I had to take it out the bag myself and they would "observe me taking it and document such because they were not licensed to administer chemotherapy and some of their nurses were preganant and they could not touch the stuff. I couldn't help but chuckle and said to the nurse: "you mean you can't even touch the stuff but I am putting it in my body twice a day, every day?" So, so far my husband has not suffered any side effects that I know of. He doesn't touch the medicine but is around me all the time and in the bathroom. I will have to look into this thing about the flushing.

Hi @esperanzam, Chemo nurses are RNs who have special certification in administering chemotherapy. Some hospitals require that only these nurses can give patients their chemo medications.
Anytime I had chemo, the nurses were in fluid resistant gowns, masked with a face shield and gloves. I also had one medication that was a chemotherapy drug from a specialty pharmacy. It did have to accompany me to the hospital when I was admitted under an emergency situation. Their pharmacy had to verify the medication and then I had to handle and take the pill myself because it was not a hospital provided drug. There’s a lot of protocol in hospitals to prevent error and laws suits. 🙂

Just use caution around the meds. From my experience with my chemo nurses it’s the long term exposure for them if they’re in childbearing years that was the main concern for all the hazmat suits. It’s OSHA protocol for the health and safety of medical staff.

Some of these meds are very strong but if they buy us quality of life and extended time with our families, it’s worth taking. ☺️ I’ve extended my life 4 years so far!