Essential Thrombocythemia: Looking for information and support

Thanks so much for your input Eileen. Very much appreciated and I will talk with my hematologist about starting hydroxyurea slowly rather than every day I hope your headaches have subsided and I hope I don’t get them. Another question, have you ever had other side effects? That disappeared overtime?

Hi Jackt00,

Welcome to the site,

Given the fact you are taking another chemo med, I would like to suggest you ask your hematologist if you could slowly taking Hydroxyurea. It seems some only take it three days a week or every other day and adjust up as needed.

Remember to drink minimum of 64 ounces of fluid taking HU. I do not even touch the capsule. I slide it out to a small lid. I wet my lips and swirl water around my mouth and I slide the it into my mouth with glass of water so all are lubricated. This helps prevent mouth sores.

I am 78 JAK2 and have had headache issues taking HU. My hematologist lowered me to 500 mg every other day and it was working nicely, My goal is 450 or lower for platelets. We were in the process of closing up a house in one state and moving. With the stress my headaches greatly increased and hematologist let me go off HU for a month. I see her soon and I will be back on HU.

Best wishes, Eileen

My platelets have been increasing since 2018 and are currently at 610. My bloodwork confirmed the jak2 mutation. My red and white blood cells are in normal range. I am 74. I did not have a bone marrow biopsy but was put on a low dose aspirin regimen. Now my hematologist wants to put me on Hydroxyurea 500 mg. After reading all the side effects, all the precautions and self care procedures, I was terrified! I am already taking, Methotrexate, another cancer drug, for rheumatoid arthritis. Would someone who is taking Hydroxyurea like to share any side effects they have experienced or any advice. Thanks.

I'm sure procedures have come a long way since 1989. I was lying on my stomach. They had given me all of the pain medication before they wheeled me down. They were having to hold me in the wheelchair because I was nodding out. When they took my spleen out 6 months later when I was in Germany. My spleen was stuck to my pancreas and removing the spleen they tore my pancreas. They had a drainage tube in me for I don't know how long but my muscles grew around that drainage tube and it hurt worse than the biopsy did when he was removing the tube. That still today is the worst pain I've ever had in my life is when he was removing that tube. I literally threw up from pain. And passed out. The good old days lol.

That sounded like quite the experience for you! Yikes. Fortunately, bone marrow biopsies have become more common place since 1989 with refined techniques. I’ve not heard of anyone being vertical for the procedure. The baker’s dozen that I’ve had were all with me lying on my side, in a comfy position. The area where the marrow is extracted is just above one of the two dimples over the glutes on the backside.

I was diagnosed with ITP in 1989 and had my one and only bone marrow biopsy. I still remember they had to hold me upright because of the Valium and Demerol. It didn't hurt when he cracked into my hip. But when he started extracting bone marrow it hurt real bad. Even through all the drugs they had me on

Good morning, @faithbeatrice. That’s one of the hardest moments in a parent’s life…when your little one isn’t feeling well and you don’t know what to do for her.

You mentioned that her white blood count is elevated. This can be a sign of an infection or her immune system reacting to inflammation. It may be something as simple as a virus such as RSV. Does she have a fever or other symptoms?
Does her doctor have any diagnosis for your daughter?

Hi Joni, thank you for sharing your positive story about having ET for 34 years without complications. That’s really encouraging for other members who have been diagnosed with this blood condition. Since you’re having some different symptoms it’s wise to have this checked out.

Opinions on what a bone marrow biopsy feels like are as varied as there are people! I have a good friend who breezes through hers like a trouper without any sedation. Me, on the other hand, I feel like I’m a pretty tough old bird and have a high tolerance for discomfort, but there will always be ‘happy sleep’ with IV sedation for me from now on.

IV sedation is the same used for a colonoscopy. You’re under for less than 15 minutes and wake up refreshed with no knowledge of the event. I’ve been fortunate enough to have my last 10 at Mayo Clinic where I wake up to Lorna Doone’s and Apple Juice to get me perked up! 😀

Most clinics offer sedation but if it’s not available, don’t panic. First, you will always have a local anesthetic injected at the site. That really does help to have the area numb. Also, you might ask your doctor for prescription of Lorazepam (Ativan), it’s an anti anxiety med that takes the edge off of the experience. It’s important and helpful to be able to remain as still and calm as possible. I relied on my prior Lamaze training to help with the 3 biopsies without sedation.

Most practitioners are gentle and understanding of the discomfort this can bring. But don’t be shy about asking for IV sedation or at least an anti anxiety med to dull the experience if you’re concerned. It’s personal choice and no shame in requesting to be as comfortable as possible!

Here’s a little informational article on bone marrow biopsies (bmbx) that you might find helpful. (It’s only the first section of the article! The rest of the article keeps going with other blood conditions which aren’t related to your ET).
https://www.healthline.com/health/leukemia/why-cant-you-be-sedated-for-bone-marrow-biopsy
I’m here anytime you have questions. Let me know what you find out, ok?

My daughter is not feeling fine and after the blood test her wbc is 19.3… what can be done please,she is just a year and five months

Hi! I’ve had ET for 34 years. Was diagnosed at age 21. I’ve been on hydrea for so many years without any complications. I’m starting to feel fatigue and shortness of breath even though I’m very active and feel healthy. My doctor is recommending a bone marrow biopsy to make sure I don’t have scarring. I’m a bit concerned since I’ve not had any issues but now that I’m 55 I’m worried things might be getting worse. I’m scared to do the bone marrow biopsy since when I had one 33 years ago it was awful… I’m guessing it’s a lot more improved since then. Any info anyone can give me would be great! Also I want to tell many of you recently diagnosed that you can live a normal lifestyle without complications like me for so many years!!!! I’ve really not had any side effects!! Take care!! Joni