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Sorry if this is a repeat- I commented elsewhere on this website. I am newly diagnosed and just on aspirin so far (count in high 5's). My naturopath diagnosed me with high lead level in my blood, which he thinks triggered the JAK2 mutation. I am on a detox protocol for 2 months, and will be retested then to see if it made a difference. Has anyone else out there had a heavy metal testing?
ReplyDeleteI have not been tested for heavy metals. I grew up in a town that was the base for a major chemical plant, and that is a suspected risk factor for ET. I told my hematologist she could feed my data into any study out there that might help researchers learn more about us. I am a triple-negative patient, so a big mystery.
ReplyDeleteThank you for your site. My husband has ET. I appreciate your straight foward explanations and the links you provide.
ReplyDeleteYou are very welcome, Anonymous! I started this blog so as not to feel so alone with ET, and if I've helped others, I've glad and grateful. How is your husband doing? If he's just been diagnosed, there's a question tree that might be helpful as he's thinking of questions for his doctor: http://ethrombo.blogspot.com/2015/11/need-questions-for-your-doc.html Please check back any time. I try to post a couple times a week. If you "like" the corresponding Facebook page (link at left), you'll know when there's something new here.
DeleteMy name is Clare Alderson; I was diagnosed with ET just over five years ago and the experience has been confusing, scary, frustrating and isolating . . but with time I’ve learned to cope with things better and be more proactive; finding and using web resources like this blog, is all part of taking responsibility for my own health :)
ReplyDeleteI used to get frustrated with my haematologist. Don’t get me wrong, I don’t doubt his expertise, skill or ability to treat this disease. His priority is to monitor my bloods and get my platelet count down . . which he’s doing a fine job of but when it comes to dealing with me as a person, and more than just a disease, a person that wants to understand and be involved in their own health care . . not so much
I’m take a longterm holistic view of things . . I want to learn as much as possible about how to live with ET, if there is no cure then I want to mitigate it’s impact as much as possible
Right now I’m taking Aspirin and Hydroxyurea . . my platelets have dropped from 1034 x10^9/L to 800 x10^9/L . . and I’ll be getting an update this Friday
From everything I’ve read it seems that if you’re going to contract a MPN then ET is one of the better ones ;)
It seems that if your condition is monitored and treated you have a good chance of a "normal" life . . but I want to know what I can do beyond simply popping the right pills and seeing my haematologist regularly :)
Welcome, Clare. Amen to all that! I hope that poking around in this blog will be helpful. Hope the hydroxyurea continues to work for you. If you are under 60, you may want to ask your hemo what he thinks about the new interferon treatments. We also have a FB page (see link at right). Our disease gets more attention than it did when my dad had it, but it is still isolating. Glad you found us here.
DeleteI am a 38 year old female and I was just diagnosed last week. My platelets were elevated during my pregnancy, so my OB sent me to a hematologist. He thought it was due to an iron deficiency, but my iron levels are no longer low after having my baby, so he tested me for the CALR mutation and it was positive. I am still waiting to hear on the MPL mutation. I have heard that it is usually negative if the CALR is positive. I tested negative for JAK2. I feel very alone and scared, but this blog is helping. I would rather avoid any of the medication as long as possible. My platelet levels are at 800, but I think they will probably be higher at my next visit. Does anyone know how much the platelet levels will drop during pregnancy. I am curious about natural remedies to slow the progression of the disease and anything to help lower the platelet levels. I am trying to go as long as possible before starting medication because I am afraid of all the side effects. Does the disease progress even if the platelets are under control?
ReplyDeleteHi, and welcome! I don't know very much about ET and pregnancy, so please post what you learn. Sounds like a topic I should explore!
DeleteFirst, congratulations on the baby!
Second, the fact that you are CALR-positive usually rules out JAK2 and MPL. CALRs usually have lower clot incidence than the other mutations.
Third, you will find that your platelets yoyo. I have mine tested every three months. They go up and down by as much as 50 points, but they have moved from barely elevated (475) to 750 in the last six years.
There are no natural substances that will control your platelets. But eating a well-balanced diet high in veg, getting exercise and fresh air, and making sure to get good sleep are three things that will make you feel better and keep your disease risks as low as possible. It may take awhile for you to find a hematologist you like. That's important!
Everyone wants to go as long as possible before starting meds, and you may not need to go on them until platelets hit a million. That could be years away.
Many people do just fine on hydroxyurea, and tjey don't feel the side effects after an adjustment period. Talk to your doc about the pros and cons of hydroxyurea, anagrelide, and pegylated interferon.
If you look at the links in the right hand bar on this blog, you'll see a link to Cancer Connect where you can ask lots of questions anonymously.
We also have a FB page, also linked at right.
Having ET means you have to take care of yourself, but you can have a good quality of life and a long one. My dad had it and lived to be 82.
Check back any time.
Hi, thanks for this blog. It is nice to find interesting information. My name is Francisco, I am 42, from Panama. I tested positive 6 years ago for ET (CARL exon 9 mutation). My platellet count is normaly 1300 since it was discovered and I take a 100 mg aspirin daily. Because Panama is so small it is difficult to find other people like me, so I wanted to ask whether headaches are frequent and if so, have anyone experienced a reduction of headaches after taking hydrea? My hematologist has suggested me starting a treatment because he wants to prevent any thrombotic or ischemic event that may arise due to such headaches.
ReplyDeleteHi, Francisco, and welcome! Headaches seem to be a common complaint of ET patients. I am also CALR+. I have been on hydroxyurea for about two years. I have felt better on it.
DeleteIf you are under 60, have never had a clot, and are not JAK+, most doctors will keep you on aspirin therapy. However, if your platelets go over 1,000, doctors worry about acquired von Willebrand's syndrome, which can cause bleeding. More info is here: https://ethrombo.blogspot.com/2017/03/von-willebrand-disease-and-et.html
In younger people, some doctors prefer to manage platelets with pegylated interferon.
All things to discuss with your doctor. Let me know how things go.
I also have a FB page--also called Got Essential Thrombosis?--with about 1,000 followers world wide. People can ask questions of other patients there, or they can message me and I will post questions anonymously.
Thanks for your reply, I remember now that a doctor I visited, as a second opinion, in Madrid told me something about VWS. Best regards.
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