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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist called me on Friday night and I started Hydrea 500 mg on Saturday. I took it that Saturday through the following Sunday (9 doses). My platelet count was in the normal range. I asked if I could stop taking it because I was having so many side effects, they told me no. However, they did let me take it on MWF and that helped the side effects a lot. My next blood draw they were elevated (and I hate taking medicine). A week and 1/2 before my next blood draw I got some CBD gummies 25 mg Full Spectrum and at my next blood draw they were in the normal range. My question is will CBD help lower the platelets so I could stop taking the hydrea? I have some days I get so tired I can hardly go. This past Sunday was one of those days. I got home from church, put my pjs on and went to bed at 3pm and slept sound until 8:30am. I have never done that before. I don't know if it is the hydrea or the ET causing this.
This is all new to me, I have been in medical all my life but not hematology and oncology, Any advice will be greatly appreciated.
Replies to "I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist..."
I understand that fatigue and sympathize. Only thing that helps is coffee and my exercise bike + 20-30 minutes of yoga every day. Also may help to cut back on starches and sugar. It's kind of a constant low-level battle, especially since I have mobility problems from lifelong scoliosis (I am 70).
CBD did not lower my platelets or help my insomnia or restless leg. People in my support group wanted to know about it. I researched, ordered CBD oil from a reputable manufacturer, dosed as suggested for a month, and got nothing but acid reflux. When I reported that it did nothing, I was told by the sellers, oh, you must be taking it wrong, not dosing right, not giving it enough time to work ... in other words, my fault not the drug, and I needed to shuck out more money. At 50 bucks an ounce, it's a scam, imo.
I talked to my GP. She said she saw no problem with microdosing with low-dose THC products (legal where I live) at night for the insomnia and restless leg, but to clear with cardiologist and hematologist. She emphasized that cannabis is not an alternative treatment for the underlying cancer.
I have been on Hydrea 500 every other day since May, the last month MWF. Within the last several months my hair is falling out and it is a handful when I wash it. My Hematologist recently suggested I use a shampoo and cream rinse with Rosemary in it. I have been doing this and haven't seen a sigificant decrease in losing hair.
I also have been getting leg cramps at night.
Any suggestions would be welcomed.
Thank you.
My hematologist told me yesterday that CBD would not lower my platelets. So I will not be getting anymore. My BMB came back with mild fibrosis. I’m guessing from what he said that’s a good thing. Told me to continue with HU MWF. Go back in four weeks for a blood draw. As bad as it is it could always be worse.
Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched me to Hydrea it caused SO MANY side effects and never did stablize the platelet count. Grateful when I was able to find a physican who said if it worked (for 10 years) why switch?
I'm 72, diagnosed over twenty years ago.
Restless Leg Syndrome...Ok, I am going to put this crazy solution out there, this is an old wife's tale! don't ask me why, but sleeping with a bar of soap near your legs does actually work! Don't knock it until you have tried it!!
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I have never read about CBD gummies and blood disorders, Please update us on what your hematologist says and your progress. Thanks, Eileen