Essential Thrombocythemia

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Essential Thrombocythemia

by barefoot on Mon Dec 15, 2008 12:00 AM

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Hello everyone,
I just happened onto this message board and am thrilled!! It is impossible to talk to anyone about this disease. I have been very symptamatic! Itching, bleeding, pain in feet/hands, aches, tired, depressed, vision problems... I hate to start the chemo again. Are there any alternatives out there from anyone? I have been living with this (diagnosed in 2004),but know I have had this for a couple years before. My highest count was 965,000 back in June.It is staying steady about 765,000 for last couple months.
Someone please talk to me. Thanks for listening!
Debbie

RE: Essential Thrombocythemia

by missygirl11 on Mon Dec 15, 2008 12:00 AM

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Debbie,

Hello,

Contact a naturalpath physician in your home town. They can sometines be very helpful. I do a variety of natural things, however, I cannot recommend any to you, I am not a DR. I understand your frustration..I have been there many times. I try most of the time letely to NOT think about my disease so much!! It is hard..but I have to sometimes just put it all in the back of my mind. I have been off the Hydrea since May of this year and I have not had my platelets tested in 2 months....I get so tired of it all.....

 Pray!!

God Bless!

Missygirl

RE: Essential Thrombocythemia

by mmllddll on Tue Dec 16, 2008 12:00 AM

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On 12/15/2008 barefoot wrote:

Hello everyone,
I just happened onto this message board and am thrilled!! It is impossible to talk to anyone about this disease. I have been very symptamatic! Itching, bleeding, pain in feet/hands, aches, tired, depressed, vision problems... I hate to start the chemo again. Are there any alternatives out there from anyone? I have been living with this (diagnosed in 2004),but know I have had this for a couple years before. My highest count was 965,000 back in June.It is staying steady about 765,000 for last couple months.
Someone please talk to me. Thanks for listening!
Debbie

Hi Debbie, I am so sorry to hear you are having a difficult time. I was diagnosed in 2006 with a platelet count around 1.5M. I have been using anagrelide .05mg three times daily. My count is now below 450K and I am asymptomatic. I don't know if you've used this drug before but I find it works well for me with no side effects (I acclimated to it over a period of a few weeks). Also, if your thrombocythemia is due to the JAK 1/2 gene there are some promising experimental inhibitors that are now entering trials. Unfortunately, other than hydroxurea and interferon, which I declined because of side effects, I don't know of any other drug therapies. All the best, ML

RE: Essential Thrombocythemia

by Rebeccalub on Wed Dec 17, 2008 12:00 AM

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Debbie, I also have ET and would be happy to discuss it with you. What types of questions do you have? Are you a list member of either of the list-serves that are online as both lists are communities where questions are posed and answered daily. I go to the Mayo Clinic regularly and am under the care of one of the expert doctors there. I also had all the symptoms you listed prior to diagnosis and have taken a couple of different meds. Let me know your specific questions. Rebecca

RE: Essential Thrombocythemia

by Sweetsoul on Mon Dec 29, 2008 12:00 AM

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On 12/17/2008 Rebeccalub wrote:

Debbie,
I also have ET and would be happy to discuss it with you. What types of questions do you have? Are you a list member of either of the list-serves that are online as both lists are communities where questions are posed and answered daily. I go to the Mayo Clinic regularly and am under the care of one of the expert doctors there. I also had all the symptoms you listed prior to diagnosis and have taken a couple of different meds. Let me know your specific questions. Rebecca
Rebecca, I was just but on agrylin due to my blood count now at 820, but I have found that this drug causes  your heart to race. Have you experience any of these. Thanks 

 

RE: Essential Thrombocythemia

by barefoot on Sat Jan 24, 2009 12:00 AM

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Hello Rebecca, What kind of treatment are you doing? What about anagrelide/ I just got started on this as of thursday and I aache so much! I just pray this goes away quickly! A heating pad helps. What other things do you do to help yourself? Would like to chat further with you. I live in Arkansas and I don't know of any support groups around here. I am a member on here now. Thanks for listening! Debbie

RE: Essential Thrombocythemia

by barefoot on Sat Jan 24, 2009 12:00 AM

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Hello Missygirl! I know how you feel as well. How long have you lived with ET? Also how young are you? I am 48 and live in Arkansas and there are no support groups in this area that I can find. grrrrrrr I would like to chat further with you at your connivence. not sure that was spelled correctly. Thanks for replying to me, Debbie

RE: Essential Thrombocythemia

by lov2laf on Sun Jan 25, 2009 12:00 AM

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We have a monthly posted list in our daily digest of many local myeloproliferative support groups that meet in person. Robert at www.mpdsupport.org

RE: Essential Thrombocythemia

by Meander82 on Mon Mar 09, 2009 12:00 AM

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I was also thrilled to see this message board, I felt SO alone with all of this!  I was diagnosed a year ago, and I tested positive for the JAK2 mutation.  I have been on Hydroxyurea since June, and it has lowered my platelets significantly, but they still go up and down a little.  I did suffer from a lot of nausea from the treatment at first, but for the most part I am asymptommatic now.  I also have a long history of migraines, but since the Hydrea I have not had one at all!

My main issue now is emotional.  I have no idea what is going to happen, and I feel like no one understands.  I want to get married and have a family, but how do I approach a man with this? It's confusing. 

RE: Essential Thrombocythemia

by Brian__S on Sat Apr 04, 2009 12:00 AM

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Just thought I would add my journey in a hope that it will help others that have recently been diagnoised with ET. I am a healthy and fit male and was diagnoised in 1998 (32yrs then) with ET after a getting a blood test for a fainting episode. My platelets were 1.5m. My GP referred me to a specialist. I had a bone marrow biopsi at that time. Not a great experience. I was given coated asprin and put on monthly blood tests. The coated asprin was to prevent stomach ulcers. I continued with life as normal until early 2005 when I went to my GP with what I thought was a stomach ulcer. It turned out I had a blood clot in my portal vein. I had another marrow hip biopsi and tests showed I have JAK2. My spleen swelled with the blockage but after 3 weeks in hospital with blood thinning meds the clot cleared. Incredibly scans have shown no remaining effects of the clot. The spleen is larger than normal but I can't tell. Now I am on warfarin 12ml per day, Asprin 1 per day and Hydroxyurea 1000mg per day. I have no side effects apart from when I go for a run shortly after taking the warfarin if I get really hot I get very itchy upper legs and hands. I had 1 boy prior to being diagnoised then in 1999 we had identical twin boys. All are well and my specialist said this is not passed on. I fly overseas once a year on business and have been told that I am the least likely person on the plane to get a clot due to the fact that I am on blood thinning agents already. I still wear pressure socks to be sure. I believe you should always live your life like there is no tomorrow even if you are perfectly healthy. Having monthly blood tests is great because I self monitor and adjust my Warfarin to suit my life style not the other way round. The blood test also give me the advantage over everyone else in that I will know if I develop any other ailments. I hope this gives an insight to new ET sufferers. Brian
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