Essential Thrombocythemia: Looking for information and support

Hello - I had hip replacement surgery in mid August 2023. The surgeon communicated with my Hematologist prior to surgery and I received instructions on when to stop aspirin etc. My surgery was late in the day, so I stayed in hospital overnight. The nurse had me up for bathroom very soon after surgery. I had instruction on exercises to begin at home and was released to home the next day. Got around with a walker at first, including outdoor walks. I made certain to do the exercises, walked as instructed and had more exercises added with therapist after about 9 days. The relief from hip pain was immediate, incision healed as expected. X-rays with surgeons after care and I was soon able to walk with a cane. (I had sport walking sticks so I used those instead of a cane). The best advice I can give is to follow Doctor’s instructions, do the prescribed exercises for successful recovery. All will be well, I’m sure.

Yes, it is a chemo drug.

I never touch the capsule. I slide out a capsule onto another lid. You need to take with a full glass of water. I squish some of the water around my mouth first and then slide capsule into my mouth and drink the rest of the water.

To avoid the toxic effect you should drink minimum of 64 ounces of fluid daily.

Eileen

Thank you for your reply. That's helpful information. I have been taking a full glass of water with the capsule while wearing plastic gloves. But I will start drinking the full 64 oz. today.

Do coffee, tea, juice, milk, cocoa count in the 64 ounces of liquid or does it have to be all water?

Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.

Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.