ET – A MIND OF IT’S OWN!
October 15th, 2011 . by kanettacHi Everyone, well, I went back to the doctor after being off Hydrea for 4 weeks and my platelets have shot up 125 points to 801. What a disappointment! I was so hoping they would be lower. My doctor ask me how I feel and if I had noticed anything different and I told him that I have been feeling great. The only thing really different is not having any lightheaded feelings that I have when I am on the Hydrea. Anyway, he told me to not take the Hydrea for another month and see what my platelets are then. If they are “through the roof” I’m sure to go back on it. We will see. If I start having any of my symptoms I had beforeI was diagnosed with ET then I will be on the phone calling my doctor. The symptoms included, extreme pain in my legs to the point I couldn’t walk, pin-point pain in my fingertips and red blotches on my hand palms, and a feeling of carrying around a heavy load. I really don’t mind taking the Hydrea. I was used to it and I was willing to take it the rest of my life and I still am if it comes to that. I really hope that by writing this blog that others that have ET will know they are not alone in this disease. It’s okay, we can do it! Take care until the next time. I reach my hand out to all of you. We don’t have a cure but we CAN live a good life! Kanetta
Kanetta,
Sorry to hear that you had such a drastic increase in your platlet count. I have come to realsize that ET is truly strange disease. I saw my oncologist last week and my count had dropped a little, but only a little. My counts are still running all over the place; however, we decided not to increase my hydrea at this time … currently I’m on 1000 mg/daily. I don’t know if other bloggers are encountering problems having their hydrea prescriptions filled, but I am. My pharmacist said that for some unknown reason the distributor has been unable to supply him with enough to keep me going for more than a couple of weeks. I spoke with my oncologist about the shortage and he indicated a shortage in several chemo drugs. It’s alarming to say the least.
Keep your readers up-to-date on your condition.
Susan
I was disappointed that the visit with my oncologist didn’t go as I had hoped yesterday. My count had jumped another 200,000 points even thought I’m on 1000 mg of hydrea each day. So, now I’m altering my doses … 1000 mg one day and 1500 the next … etc., etc., etc.
Even through disappointment, I feel very fortunate to have such a wonderful, caring oncologist.
Susan