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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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Similar story here! about to check in with Hemo and wondering if she will order BMB, NGS or any others to ascertain the diagnosis. living through anxiety, no medications, pain and wondering what the right nutrition plan would be for someone in my condition.
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2 ReactionsThat makes a lot more sense! Thanks. Yes, magnesium is checked. Since it seems to happen only in sporadic cycles (several days running, perhaps a week) I've learned to live with the cramping though it's very annoying to those around me.
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3 ReactionsHi @rubles, Both thrombocytopenia and thrombocythemia are conditions relating to platelet levels in the blood. One is too few platelets. The other is a condition where there are too many. Both have their own set of issues.
Here are the differences:
~Thrombocytopenia is a condition where you have a low blood platelet count.
https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293
https://www.verywellhealth.com/what-is-pancytopenia-2249143
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~Thrombocythemia is a disease where your marrow makes too many platelets.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/thrombocythemia
I know that you’re dealing with quite a few health issues at one time which can certainly complicate your treatments. Have you considered trying to get an appointment with a larger university or teaching hospital, or Mayo Clinic where doctors tend to work collaboratively in each specialty to find answers to your health problems?
Here’s a link to request an appointment with Mayo. http://mayocl.in/1mtmR63
Another option depending on where you live. Mayo Clinic has Care Network Members where they work with some clinics across the country who meet with the standards set by the Mayo Clinic. Here’s the map showing the facilities. See if there is one near you.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Is the Thrombocytopenia a new diagnosis? How are you doing with the kidney disease and your ostomy? How long ago did you have the ostomy surgery?
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1 ReactionI was diagnosed with thrombocytopenia. Is this different from thrombocythemia? I have weird things going on physically. Diagosed with kidney disease and I have ostomy and much more. I would greatly appreciate it if I can be directed to helpful information. Thank you,Pamela Also the doctors don't explain and call me too complicated because of all the medical issues I have.
Hi @docoltun. I think @lynn22 is talking about a bar of soap. My grandma swore by that trick too. 🤷♀️ Whatever works, right?
This may have been discussed previously, but have you tried any magnesium supplements such as Magnesium Glycinate? Often this can relieve leg cramps.
With your routine bloodwork for ET, does your doctor check your magnesium level?
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3 ReactionsSorry to hear you are suffering. Just a normal bar, we just bought a cheap one, in fact the first one he had was one of the small freebies he took from a hotel room! Hope it helps.
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1 Reaction@sdduan, I moved your message to this existing discussion where you can connect with many members living with essential thrombocythemia
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
As suggested by @eileen11108, you might also be interested in this related discussion:
- New to Pegasys for ET - advice please!
https://connect.mayoclinic.org/discussion/new-to-pegasus-advice-please/
What treatment options is your team suggesting for you at this point?
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2 ReactionsWhat kind of bar? I have gotten crazy, debilitating leg cramps occassionally (not the kind you can rub or walk out...) and just have to stand and stretch. Since they seem to come in a waves, I'll try anything!! 2x4? 2" dowl rod? rebar? Thanks for the info!
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2 ReactionsI never did have side effects...of course I was dealing with late-stage menopause when ET was diagnosed so....didn't notice anything odder than what had been happening for about four years! Good luck.
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1 ReactionHi @tracey78 Welcome to Connect. I’m happy you joined the forum where you’ll find a huge new family of support. Were you recently diagnosis with ET? Are you having symptoms or on any treatments?