About.com Article: http://rarediseases.about.com/b/a/183306.htm
Maura
I have tried in vain to get that link to work for me and no luck. I am returning next Tuesday to USA. A week or so In Ny with my sister and then Texas. My daughter is trying to set up an appointment with one of the Specialists but we can't come up with a name. If you have any luck finding a name I would appreciate it. I dont know what I am doing wrong with the link you sent. I copied and pasted it on Google and put MD Anderson.org in front but nothing happened. I feel I wont get an appointment right away so I wanted my daughter to set it up first. Other than my legs burning in bed and pains in the legs in bed I feel fine the minute I get up and move about. Maybe the bed is too small or something for the pains but should have nothing to do with the burning sensation. How are you doing? Also how are you doing Sasha?
Keep us posted..I will. dreading my new CBC count after i get back..i know it will be higher.
Maura
Hi Maura - do you know how we can be notified when someone has posted on this message board? For some reason, I thought we'd get an e-mail every time someone posts. Anyway, I just checked and there are several that I didn't know about. OK, at MD Anderson you need to find the Leukemia Dept. I have them bookmarked. I went down the list of specialists and got these for you:
Francis Giles (pioneered the use of interferon in ET), Allessandra Ferrajoli, Stefan Faderl, Jorges Cortes and Farhad Ravandi-Kashani all specialize in chronic leukemia. Srdan Verstovsek specializes in myeloproliferative disorders. Any of them would probably be more knowledgeable than 90% of the hematologists elsewhere. Do you need the 800 # to call for appts? There is also a online referral form you need to fill out.
I live in South Carolina now - we moved here from Tyler TX just 1 1/2 yrs ago. I wish we were closer to MDA now because I am sure the care would be tops. When my kids are in college (4 yrs), we will probably move back to San Marcos as we have some property there.
I am finding that many of my long term friends reaction to ET is fear. They stop calling me probably because they feel I'm going to die. So I haven't told any more. My sister is convinced that she's losing me too. Also most people know about leukemia so to make it short I describe it as chronic leukemia (which indeed it is!)
Anyway Maura - I hope that's the info for MDA you need. Let me know if you need anything else and please keep me posted about how you're doing. I will just check these boards every day instead of thinking they will e-mail me everytime there's a new post. Oh - for leg cramps - you need more potassium. Eat bananas!
Barbara
Hi Barbara..Thank you so much for the names.As far as I know the only way to read postings is to go in the site and look as they don't email me when you post a message. I sent the name to my daughter to call tomorrow. However if it has to be done on line they call within 24 hours to check on ins. etc and I wont be back until the 27th.
I will immediately go to my MD for a CBC test..dreading the new number.
How are you doing?i just tell everyone I have a chronic blood disorder. Everyone thinks I am a very strong person so nothing will happen to me. I do not dwell on it but as soon as I start some treatment i suppose things will change with everyone. I read that MD Anderson has something going with one of the Universities here so I hope that i can be monitered when I am here otherwise I wont be able to stay here.
I was hoping to spend the Summers here and the Winters in Texas. I have my doubts now with me having ET.
Are you loosing any hair?There is a very expensive shampoo plus other products called THYMUSKIN. IT WAS CREATED FOR CHEMO PATIENTS IN GERMANY.I was loosing a lot of hair and went for it. My hair immediately stopped falling out and my own hair is 3 times as thick. Whether it will help it grow back I have to wait and see. I bought the 6 oz shampoo and the gel treatment which is the strongest product and it came to $325,00 or so. I only do it 4it times a week and i have 1/2 bottle of the gel and a few more of the shampoo left for 3 1/2 months. I went to see an old friend and the first thing she said was..Oh you have so much hair.
looks like we are the only two on this at the moment.
God Bless
Maura
Hi Barbara and Maura,
Well, I've had to cut back on my Hydrea from 1000 mg. to 500 mg. per day because I was getting weaker and sicker by the day. This past week was horrible! Nausea, dizziness, weakness, palpitations, tremors, etc. I have to call my oncologist tomorrow. I couldn't even have Easter with my extended family today because I am still so weak & fatigued, although I'm feeling a little better each day. Having my stepson drive 4 hours home from college to spend the weekend with us really boosted my morale! I couldn't take the Hydrea at all on Friday (or eat much of anything). Yesterday, my husband finally insisted that I just take one 500 mg. capsule a day until I am able to reach Dr. Jaslowski (my oncologist). I live in the small community of Pulaski, about 1/2 hour outside of Green Bay, Wisconsin. My parents and my four siblings, with their families, all live in Green Bay. The driving time ranges from 25 to 50 minutes to see them. Dr. Jaslowski is about 20-25 minutes from me.
My family doctor had me collect a 24-hour urine specimen last week, to check for carcinoid syndrome or adrenal gland tumor(s). I'm still waiting to hear from him. He also told me that I should make sure to get plenty of magnesium to help my ET symptoms. I've been too sick to look up good sources of magnesium, but I'll do that now. I've always had thick hair and I haven't noticed any excessive hair loss yet. I try to keep a positive outlook and do as much for myself as I can. I've only cried for a few moments, just a couple of times, since this all started happening, but I'm not one to cry a lot anyway. I don't want to whine or be a baby about it, but it really is scary and frustrating and upsetting sometimes.
Hope you're both doing well today. All we can do is keep going, right?
Take Care, my ET friends!
I am soo sorry to hear how sick you have been. 1000 mg was a very strong dose dont you think? I hope 500 will work for you and you wont be so sick. I must look up what you were tested for Tomorrow I am flying back to NY..staying there and then to Houston.Then i must do something about my ET. I have a pair of Hospital surgigal stockings to wear on the plane and I am worried about clots even without ET but now my chances are much higher as it is 7 1/2 hours to Ny from here and 10 from Houston to London.Long hours.
I read something on the plane coming over about valium not mixing with thick blood. I would like to take one but afraid to. cant remember what i read only telling myself I had better not. I had some 5 years ago as a muscle relaxer for the cramps I got in my leg muscles when i would fall asleep. Now I wonder if there was a connection to ET.
Thanks for keeping us posted even though you are so sick.
Bye for now must finish packing will let you and barbara know how i did.
Maura
I am feeling much better today, so my prayers were answered. I hope that 500 mg. will work for me. My oncologist said I could try the lower dose until my next appointment. The problem is that my counts aren't extremely high because the extra platelets are mostly staying in my bone marrow: large, ugly, clumping, sticky and abnormally shaped. So, my count isn't a good reflection of what's being made in the marrow and that puts me at higher risk for leukemia developing. I still haven't gotten the results back from my 24-hour urine, but I looked up the tests online (5-HIAA & VMA). Interesting, especially the VMA, which checks for benign or malignant tumors in the adrenal glands. My symptoms more closely resemble that than ET, so I sure hope I don't have both!!!
I don't envy you being on a plane for that long. Ugh! Keep moving your extremities around as much as you can - wiggle your fingers/toes, tighten and release your arm/leg muscles, change positions (even slightly can make a big difference). I've been a nurse for 22 years and I worked most of them with the elderly in the nursing home, so I know first-hand what can happen when a person is immobile or stuck in a wheelchair, unable to move independently (without having the extra burden of ET). It's so important to keep the blood moving in any way possible. As far as Valium is concerned, I read something similar about that, too. Xanax (Alprazolam) is an even better medication for your needs, if you can get a prescription. Wishing you a speedy, safe trip and praying that your counts are better than you expect!
Michele - I almost cried today when I read your post about how the Hydroxyurea side effects are causing you to be so sick. I agree with Maura - seems like 1000 mg is a pretty high dose. My dr told me that its when you take a high dose of it that you get the side effects. I am not sure why your dr prescribed so much???? I don't understand why your platelets would stay in the marrow? Is there anything online I can read about that? I really am just learning (fast!) about this disease so I don't know exactly what is happening to you. I feel like this bulletin board is really helpful as far as information - I've learned so much more than what my dr has told me and also learned what I need to ask! One thing that I am learning is that I just have to slow down and face one day at a time. Some mornings I wake up feeling so fatigued even before I get out of bed! I used to be "up and at 'em" and now I have a hard time waking up. It is a real adjustment. But then I read your post about all the awful side effects you are dealing with and I feel like the fatigue is something I shouldn't complain about. Anyway, I hope that your dr will be able to correctly diagnose you soon so that you don't worry too much. take care and keep us posted!
Barbara
Hi Barbara,
You are such a compassionate person! Your concern for my health is so touching, especially knowing that you are battling this mystifying disorder, too. My oncologist said that my bone marrow is having a hard time sending the blood cells out into circulation because they are so tightly packed in there, plus they are very sticky & clumped together. The red cells are fighting a mighty battle & my circulating red count is even a little high. That's why I'm so thankful my white count continues to be stable. If it gets too crowded in my bone marrow and the platelets are the most aggressive cells, the rest will give up and die off, leaving me with leukemia. Hence, the reason for the "big guns" treatment of 1000 mg. Hydrea right away. I was just so disappointed that I got so sick from it. I'm doing pretty well at 500 mg. so far. Not 100% by far, but not bad overall. I'll think of you when I wake up feeling so fatigued and I'll know I'm not alone! That really helps. I hope things are going well for Maura.
God Bless.
Michele
Maura,
hi! I'm new to this board, just found it tonight. Everything was very interesting, but
I was taken aback when I read about your burning legs. I've had that for the last, hmm, year or so. I had thought it might be menopause related, (I'm 46), so I asked all my friends and relatives and my internist, but no one had ever heard of it. I tried looking it up on the internet, too. I had kind of just resigned myself to thinking, one more crazy thing, never thinking it might be connected to ET.
The burning I feel is usually confined to my lower legs, between ankles and knees, although every so often it creeps up to just above my knees. It is only on the "fronts" of my legs, not encompassing the whole leg and feels like a painless burning. I've looked at my legs and they don't look red at all when it happens, nor do they feel any warmer to the touch than any other part of my body - I've even had dh check.
I'm curious if your burning is similar. I will definitely mention it to the hemotologist when I go to see him next week.
Agnes