Essential Thrombocythemia and Hydrea

Hello. I am 37 yr old female diagnosed in 2001 with ET. I was on Agrylin for almost 5 yrs. Side effects included migraines and hear palpitations. Now I moved a year ago to Colorado and the new doctor took me off Agrylin. New studies suggested no meds until platelets reached 1.5 million. In the past month it has gone from 1.2, to 1.5 and in the past week has reached 1.7 mi. I was told by my doctor I need to start Hydrea today. I am very reluctant to start. I have heard so many bad things about the meds. Hair loss, leg and mouth ulcers,etc. I have been dieting the past month to get ready for a wedding that I am in on Sat. I have gone back to red meat for the protein and have lost 10 lbs. I work out every day.. weights and walking,etc. My cholesterol is the best it has ever been and my heart it in good shape... so why am I getting worse?? Very frustrated. I think if I go back to my old diet it will fix itself.. but my doc says diet has nothing to do with it. If I choose to hold off on the Hydrea am I taking a risk?? I also think stress is a big part of the elevated plts. and once this wedding is over and I get back to my normal diet it will go back to where it was.... but do I take the chance of stroke? Can you tell I really do not want to take the Hydrea??

does anyone have any suggestions of what I could take along with the Hydrea like supplements to ease the side effects,etc?

 Thanks for listening.. just very scared at this point!

Nikki

Hello Nikki,

I was diagnosed about 3 years ago; I am now 39.  For the first year I was not treated.  When my Platlets hit 2.3 million I was started on Hydrea.  I took hydrea for one year 1500 mgs q day with some success.  I was able to keep my count between 600,000 and 750,000.  As I increased the dose to drop the counts lower my WBC and RBC would drop too much.  About 15 months ago I started once a week interferon injections as part of a clinical trial out of MD Anderson Hospital (Houston).  My platlets are normal and my bone marrow shows signs of normalizing.  I have had to stop periodically due to low WBC, & RBC.  It is not without side effects but it does hold some promise of normalizing my bone marrow and possible total remission. 

As for the Hydrea.  I wouldn't hesitate to start.  For me the side effects were minimal (some fatigue) but no hair loss or mouth sores.  At the doses it is used for ET it is rare to have severe side effects.  I would start something with counts of 1.3 million, the danger is probably minimal but the consequences of something are too significant to ignore.

Hope this helps.  If you want more information about the clinical trial I am on you can contact me at :  

Michael,

Thanks for your response. I stared the Hydrea today with reluctance. It is just hard for me to accept putting toxins IN my body! But I have no other choice (that I know of). I would love to hear of some alternative meds. My plts went from 1.2 mil to 1.5 to now over 1.7 million in about three weeks. Not good! It is only 500 mg a day for now. We will have to monitor my other counts weekly to see how I do on it. I am very scared of this turning into Leukemia, but I am trusting my doctor.

I would love to hear about the study you are involved in, but the board removed your private information.

Thanks again!

Nikki

On 7/28/2007 NikkiM wrote:

Michael,

Thanks for your response. I stared the Hydrea today with reluctance. It is just hard for me to accept putting toxins IN my body! But I have no other choice (that I know of). I would love to hear of some alternative meds. My plts went from 1.2 mil to 1.5 to now over 1.7 million in about three weeks. Not good! It is only 500 mg a day for now. We will have to monitor my other counts weekly to see how I do on it. I am very scared of this turning into Leukemia, but I am trusting my doctor.

I would love to hear about the study you are involved in, but the board removed your private information.

Thanks again!

Nikki

Nikki- I too have ET-diagnosed when I was 21-so lets just say it was over 25 years ago!!

I was put on Hydrea when my platelets were 1.5 million and the fatigue was unbearable-about 12 years ago. I did not do well on it-my WBC went way down, my platelets were bouncing all over the place, and I had the dreaded mouth sores. As soon as anagrelide came on the market, I switched. That was after 1 1/2 years of Hydrea.

I have done well with aspirin, and anagrelide, but now all the top MPD docs are screeching to get off it. I just came from a conference in NYC , and had a chance to personally speak to some of the best, and was told to get off the anagrelide-yesterday!

So now I am in a tizzy, and have made an appointment with my current MD as to if I should try Hydrea again(which is what the top docs said to do)

There is a lot of info-so search it out and become an expert on yourself! I hope you have found the other MPD websites that are out there also.

You do need treatment-if you are in  the so called high risk groups.I was  treated with aspirin only for the first 14 years after diagnosis. I had 2 healthy children also-which I was told not to try either.

There is a risk of leukemia, fibrosis...even without treatment-it is a quality of life issue.

I wish you luck and hope you not only feel better, but get all the info you can find, and find a doctor that you trust and that will discuss everything in detail.

Good Luck, Nikki!

On 7/26/2007 NikkiM wrote:

Hello. I am 37 yr old female diagnosed in 2001 with ET. I was on Agrylin for almost 5 yrs. Side effects included migraines and hear palpitations. Now I moved a year ago to Colorado and the new doctor took me off Agrylin. New studies suggested no meds until platelets reached 1.5 million. In the past month it has gone from 1.2, to 1.5 and in the past week has reached 1.7 mi. I was told by my doctor I need to start Hydrea today. I am very reluctant to start. I have heard so many bad things about the meds. Hair loss, leg and mouth ulcers,etc. I have been dieting the past month to get ready for a wedding that I am in on Sat. I have gone back to red meat for the protein and have lost 10 lbs. I work out every day.. weights and walking,etc. My cholesterol is the best it has ever been and my heart it in good shape... so why am I getting worse?? Very frustrated. I think if I go back to my old diet it will fix itself.. but my doc says diet has nothing to do with it. If I choose to hold off on the Hydrea am I taking a risk?? I also think stress is a big part of the elevated plts. and once this wedding is over and I get back to my normal diet it will go back to where it was.... but do I take the chance of stroke? Can you tell I really do not want to take the Hydrea??

does anyone have any suggestions of what I could take along with the Hydrea like supplements to ease the side effects,etc?

 Thanks for listening.. just very scared at this point!

Nikki

Hi Nikki:  I realize you wrote your message quite a few months ago.  I too have Essential Thrombocythemia.  After reeling with the news of the diagnosis in 2002, I thing I went into shock and once I finally got over the shock, I wanted to fix the problem, but as you know, there is no cure. 

But since that day, I have figured out that when I am stressed, my platelet count goes higher.  I was getting my platelet count checked about every 2 - 4 weeks and even though my doctor said diet and stress had nothing to do with it, I finally asked him tactfully, how does the medical experts know...since they don't know much about ET in the first place...meaning I respected his advise but I think I know my own body better.

I had to have surgery for an unrelated issue shortly after the ET diagnosis, and since my platelet count skyrocketed (probably from stressing out about the surgery) I was put on Hydrea for a month until it came down to a range that they could do surgery...that took about one and half months.  I felt wonderful with my platelet count lower, but realized it was not a good thing to keep on the Hydrea due to the long term side effects of Hydrea, so I did not continue it and my doctor agreed. 

I did try Agrylin for about 2 months, but couldn't handle the side affects.   Since then, I have tried to listen to my body instead. Besides taking one 81mg. aspirin each day (doctor prescribed this) I try each day to do something relaxing that I enjoy (dry sauna, lay on my back and watch the clouds, watch a funny movie, get a massage, etc.)  Also when I don't eat healthy, I feel lousy...and my platelet count goes up.  There is no doubt in my mind that when I am under bad stress, my platelet count goes up as a result. 

I hope your wedding was wonderful and your platelet count has lowered.  Sometimes it does good to just talk with someone who is going through the same thing.  Stay positive and find relaxing things YOU like to do..think of it as your daily spoonful of medicine. 

Hi,

I was diagnosed with primary thrombocythemia in 2000, at the age of 41.  I was very sick and my count was never even up to a million.  I start to feel very bad any time they even go over 600m.  I have been on hydroxyurea twice.  Both times it was effective in bringing down my counts, but the side effects were horrible.  It IS chemotherapy. I didn't lose all my hair, but it became very thin and dull.  I had bad ulcers in my mouth and nose that were painful.  I was SO tired all the time.  Both times after about 4 months I told the docs I had to get off it. For the past 4 years I've been on anegrelide only.  I've had good results with it and feel much more "normal" physically.  I have had to keep increasing dosages though because it seems like after a while, the body adjusts to it and needs more to work properly.  I think you are right about stress affecting your counts.  It definitely affects mine.  I am frustrated that there are no other good therapies out there for us!

I understand the hesitation to take the drug. I resisted the bone marrow biopsy, until I passed out in the elevator at work from a probable mini-stroke.

I was diagnosed with essential thrombocythemia  three years ago. I was 60 when I was diagnosed. In retrospect, I probably had the condition for several years before diagnosis.

I have been on hydrea 500 mg. Two pills on even days and one on odd days. It has kept my platelets within normal range.

Yes, there is some hair thinning on my head. Loss of hair on my arms and legs, dry skin, and some loss of energy from time to time. I lost weight with this drug. But the alternative is a heart attack or a stroke.

Try hydrea...it took me about 4-6 weeks to adjust to it. You may be tired at first, but you will get over it.

It is not a great drug cosmetically,  but the alternative serious complications of a high platelet count is much worse.

If you work our and eat right and take the drug you reduce your chances of heart attack and stroke...Do you really want to take that chance by not taking the drug?

Listen to you doctor.

Good Luck!

Very well said. Ive been on Hydrea for five weeks now. four one day and three the next. It is taking a bit to get used to it but I will get uesed to it. You must listen to your doc.

Take care and live life!!

John v

Yeah, Hydrea can be a bit scary when you find out that it's a chemo drug, but it has lowered my platelets and I have had none of my very scary (dizziness) episodes.

When I was first diagnosed, the Oncologist talked alot about how she thought Interferon could be a very good alternative and even a possoble cure in my lifetime. Let's hope that comes about.