18th August 2007
Hi Romeo,
I took Hydroxyurea for a couple years, and started losing my hair after the second year... my count was its highest ever when I went off of the HU (over 1 mil). I did research & found that interferon, although tough to take, can sometimes have a prolonged platelet lowering effect (HU and agrylin don't have this). Some studies say HU can cause leukemia in a small percentage of cases - I also didn't want to take that risk if there was another option. (I started on agrylin when I got this 3 yrs ago, and switched to HU because my heart was racing, and there was a study that HU is better long term). I do think HU has a cumulative effect - over time I also had terrible body odor with it, and after going off it, this is gone.
I've been on 3 mio interferon 3 X per week for a couple months now, and my platelet count has gone from over 1mil, to 800k in 1st month, and 600k in second month. The side effects were very hard (flu like symptoms) the first couple months, but now they seem to be hardly noticeable. I think the reaction to interferon varies from person to person.
Re: depression, I have been using SAMe for years, and it is a life saver!! I used it with HU, with no problem, and now with interferon. I would highly recommend it!!! (takes about 5 days with me to kick in - I take 400 mg/day at least 1/2 hr before eating. some herbal internet sites offer good prices). I have not noticed side effects.
Re: hair loss, it improved within a week when I got off HU. It has started again on interferon, so I am using propecia and regaine now, but am not sure that is all necessary. I'm reading up on hair loss remedies, and am hoping to find something better... Would be happy to hear any recommendations!
This is not easy to cope with, but in the larger scheme of life, there are much worse things people are coping with, so I am trying to focus on making the most of what I do have. It does help me to appreciate here & now, and pay attention to life more.
Hang in there!! It will get easier to deal with!
[QUOTE=Romeo1;3108367]Hi everyone,
I haven't been on the board since I posted my message a while back. Developments around ET have kept me busy. I am still having a really hard time emotionally trying to accept this condition. It still feels like a life sentence has been handed down.
When I last wrote my platelets count was at 1,800. I was put on 500mgs hydroxyrea a day for two weeks with weekly blood tests. At the begining the platelets were dropping at 200 a week. Then they increased me to 2 pills a day and the platelets only dropped by 100 a week. Now my blood specialist wants me to increase to 3 pills every second day. I don't understand why they keep increasing the hydrea when a higher dose seems to actually slow down the reduction. I was told that they will keep increasing the dose until the platelets fall to around 400 at which point they will keep me on the same dose. I am wondering if the side effects are cumulative or does one eventuall get over them? Has anyone lost their hair on the hydrea? Does anyone ever get better, meaning do the platelts ever just go back to normal and stay there without the meds?
Are we all women on this board? Does anyone know if this condition is more common to women?
Also, My family doctor is recommending that I should go on anti-depressants to help me cope. Anyone else on antidepressants? I am just wondering whether it is a good idea to add those to the chemotheraphy mix?
I took Hydroxyurea for a couple years, and started losing my hair after the second year... my count was its highest ever when I went off of the HU (over 1 mil). I did research & found that interferon, although tough to take, can sometimes have a prolonged platelet lowering effect (HU and agrylin don't have this). Some studies say HU can cause leukemia in a small percentage of cases - I also didn't want to take that risk if there was another option. (I started on agrylin when I got this 3 yrs ago, and switched to HU because my heart was racing, and there was a study that HU is better long term). I do think HU has a cumulative effect - over time I also had terrible body odor with it, and after going off it, this is gone.
I've been on 3 mio interferon 3 X per week for a couple months now, and my platelet count has gone from over 1mil, to 800k in 1st month, and 600k in second month. The side effects were very hard (flu like symptoms) the first couple months, but now they seem to be hardly noticeable. I think the reaction to interferon varies from person to person.
Re: depression, I have been using SAMe for years, and it is a life saver!! I used it with HU, with no problem, and now with interferon. I would highly recommend it!!! (takes about 5 days with me to kick in - I take 400 mg/day at least 1/2 hr before eating. some herbal internet sites offer good prices). I have not noticed side effects.
Re: hair loss, it improved within a week when I got off HU. It has started again on interferon, so I am using propecia and regaine now, but am not sure that is all necessary. I'm reading up on hair loss remedies, and am hoping to find something better... Would be happy to hear any recommendations!
This is not easy to cope with, but in the larger scheme of life, there are much worse things people are coping with, so I am trying to focus on making the most of what I do have. It does help me to appreciate here & now, and pay attention to life more.
Hang in there!! It will get easier to deal with!
[QUOTE=Romeo1;3108367]Hi everyone,
I haven't been on the board since I posted my message a while back. Developments around ET have kept me busy. I am still having a really hard time emotionally trying to accept this condition. It still feels like a life sentence has been handed down.
When I last wrote my platelets count was at 1,800. I was put on 500mgs hydroxyrea a day for two weeks with weekly blood tests. At the begining the platelets were dropping at 200 a week. Then they increased me to 2 pills a day and the platelets only dropped by 100 a week. Now my blood specialist wants me to increase to 3 pills every second day. I don't understand why they keep increasing the hydrea when a higher dose seems to actually slow down the reduction. I was told that they will keep increasing the dose until the platelets fall to around 400 at which point they will keep me on the same dose. I am wondering if the side effects are cumulative or does one eventuall get over them? Has anyone lost their hair on the hydrea? Does anyone ever get better, meaning do the platelts ever just go back to normal and stay there without the meds?
Are we all women on this board? Does anyone know if this condition is more common to women?
Also, My family doctor is recommending that I should go on anti-depressants to help me cope. Anyone else on antidepressants? I am just wondering whether it is a good idea to add those to the chemotheraphy mix?