Thrombocythemia

Hello everyone,

went to the new hemotologist today. My platelets are down from 975 to 610 - he believes due to the hydrea. My blood pressure is way down, too - from 170/90 something (I blocked it out) to 108/61. My wbc came down, but is still elevated, too.
Unfortunately, I am still tired. Completely wiped out.

He wants me to continue on the hydrea and go back to see him in 3 weeks to monitor and adjust as necessary. Also, to take 81 mg aspirin instead of the 325, but finish out the 325 I bought if I want.

He explained that usually in women under 60 we can tolerate high platelets without any complications but that my internist probably prescribed the hydrea because of the excruciating headache I had the day I saw her and since it was bringing my count down and I haven't had any side effects I've noticed, let's keep trying it.

He told me to watch out for fevers, infections, bleeding, and dizziness. Fun!

Oh, Maura, one thing my internist told me not to take was any kind of migraine medicine...but since I don't I don't remember why not.

Hi All,


Today was the first day in a long time that I've a little bit of pep. If only it would last!!

Sometimes I feel like pinching myself to make sure this isn't all just a bad dream, but I know I'd just end up with a huge bruise!!!

I showed my oncologist my list of medications the last time I saw him (on 4/4/06). Imitrex, which is one of the most popular migraine meds, is on my list, but just as needed. He didn't say I shouldn't take it, but I'll ask him again tomorrow when I see him for my blood count. I haven't had to take anything for headaches for a while now, because the one thing that has cleared up for me are the migraines! I'm definitely grateful for that!

I'll also talk to him about any other medication interactions with Hydrea, as well as meds to avoid with ET. I'll talk to my Pharmacist, too, and let you know. My nursing Drug Reference Book doesn't say much, except to use Cytotoxic drugs (other chemo meds) and Radiation Therapy with caution while on Hydrea. Also, the same as Genessa's doctor said: Watch for fevers, infection, bleeding, dizziness.

Genessa, I'm so happy for you that your platelet count is coming down so nicely, as well as your blood pressure. Hope it continues! I can totally understand your feeling tired. I feel wiped out most of the time, too. How do people go to their jobs when they feel like this?


Maura, I'm so happy that you made it to Texas and I pray we get some answers. It's so hard not to worry about clots, fatigue, etc. ET is never far from my mind these days.


Barbara, My thoughts and prayers are with you. Hope you're doing alright.


Aya, Thanks for writing and for the information. Your kind and encouraging words mean so much.

Ta Ta For Now......

How little I appreciated it when I had it :(

I'm still getting through my day, going to work - don't have a lot of choice, but both the sonogram tech and hemotologist asked about my activity level at work (which on "good" days is walking and stairs and sitting - although Monday involved sitting on the stairs :( ).
I've been trying to keep active and have been trying to walk with dh every day - don't know if I'm doing more harm than good though. The park track is .8 of a mile and we used to go 3 to 4 times around. Since December, I think I've gone around 3 times once, usually go around 2 times. Today, I should have stopped after 1 time. I don't want to give in to this fatigue...it is so frustrating.
But, tomorrow and Thursday I think I will skip - was skipping Thursday, anyway - have to go to a meeting - and experiment that way.

Sasha, I wish I could remember what it was about the migraine medicine, but just can't...it might have been that it doesn't mix with the atenolol I take, not the hydrea.

Hello again! I have to make a correction to what I said before: My mother's treatment was not iodine, it was radio active phosphorus capsule. But there is a danger that it might cause cancer if you use it often. My mother has got it three times. She got iodine before, because her thyroid gland was over-producting. I'm sorry for the wrong information. My mother's counts were above 600 when she was diagnosed. At the moment they're 380, but somehow she is still doing well. She can't speak english well enough to write herself, but she sends God's blessing to all of you. Aya

Hello to Everyone,

Well, I saw my oncologist yesterday and my count is back down to 563. He took one look at me and decided that it would be worth the risk to stop the Hydrea for 6 weeks and see what my counts do. My RBCs are also coming down - almost normal. I'll be taking 2 baby aspirin per day and checking my blood pressure daily, which is just fine with me. My doc said it's worth not using chemo if my energy level and eating improve, because those are really important in preventing clots and complications, too. If my count is significantly higher in 6 weeks, he'll do another bone marrow biopsy and we'll go from there. Aya, maybe he would be willing to try what your mom had! But in the meantime, I'm looking forward to the vacation from chemo and I'm praying I'll feel better, even though I still have to deal with the same ET symptoms I had to begin with! I really can't even remember what it's like to do everyday things without feeling drained.

I asked my doc about any drug interactions with Hydrea and he said only Coumadin (Warfarin), Heparin or any other type of "blood thinners" except the recommended aspirin dose. Otherwise, nothing other than what we already knew.

I read somewhere that 2-3 people per 100,000 get ET and most of those are over 60 years old. I looked up the current USA population, which is 298,444,215 people, so I calculated that there are probably about 6,000-9,000 people in the US with ET, but I don't know how many would be under 60. Math is not one of my strongest suits, so I didn't even try to tackle the worldwide population! Just a little fun fact to make your day more interesting :)

Keep in touch. God bless us, one and all.

that's good news, Sasha!

I hope you're able to stay off it!

I tried getting extra sleep last night and don't know if the hydrea is working or the extra sleep helped, but had more energy today. So, I decided to walk around the park once (about .8 of a mile) and sit while dh went around again.

Agnes

Good for you Sasha..I hope you can stay off of the Hydrea but even 6 weeks is a break. Everyone keeps mentioning blood pressure and migranes. Is that a side effect? So far I have neither. I still have not had a reply from MD Anderson so I will call and see why not. I go to my regular DR. Monday for a CBC test..I am afraid what my new count will be.
Genessa I hope you get your energy back. I had a good day today as i made myself stay in bed a few hours longer and tonight I cannot sleep so tomorrow will be a bad day for me. I wonder if anyone is on sleeping pills?My legs burn when in bed.
Aya thank you for updating us on your Mother's treatment. That was the same treatment that the flight Attendant told me her grandmother got in England and it worked for her but not for everyone in the group and I will see if I can get it.
BARBARA LET US HEAR FROM YOU.
God Bless,
Maura

Thanks for being happy for me and for your support. I'm a little nervous about being off the Hydrea because my ET symptoms aren't much fun, either, and I hope they don't get worse now. But at least I'm not so nauseated and food will start to taste like it's supposed to again. I'm not so dizzy and am getting more things done around the house, therefore I don't feel so guilty about not working (I "retired" exactly 2 years ago today).

My husband works so hard and I just hate needing him to assist me when he gets home. I'm STILL waiting for my judicial hearing for SSDI. My attorneys say it should be scheduled by July. The US government and getting Social Security Disability can be a very long and arduous process!

Maura, as far as I know, the migraines and high blood pressure are ET symptoms, not side effects of Hydrea. Everyone gets different side effects, but those two in particular are not listed. I'm so glad you haven't had to experience them. I'm hoping and praying that your counts aren't too high. I'll be anxious to hear about your appointment.

I have suffered from major clinical depression and insomnia since I was 12 years old, so it's been 33 years. I've been seeing the same psychiatrist for the past 12 years and we've tried at least 40 different combinations of medications during that time, in addition to various therapies and counseling. I even resorted to trying shock treatments about 10 years ago! Nothing works for any length of time. My current regimen has been about the best. Plus, I've had anxiety and PTSD for about 26 years, so I'm no stranger to taking medications. I currently take Ambien, Klonopin and Xanax to sleep (yes, all 3 every night). I'm on Cymbalta and Wellbutrin XL right now for the depression.

I'm surprised at how well I'm doing with my depression since I was diagnosed with ET. I was afraid it would send me into a tailspin, but it didn't. I think that I feel more in control of the situation by getting all the information I can and that really helps.

This message board has had a positive impact, too, and I always feel better if I can help someone else. Being a nurse was great for that, but though the spirit is willing, the body is just not able any longer. Now that I'm off the Hydrea for a while, I'm hoping my mind will clear, the dizziness will completely subside and I'll be able to get back to writing my novel for more than just short spurts of time!

My best wishes go out to all.

I truly admire your attitude. I hope your ET symptoms don't return!

I'm feeling moderately better the last few days. I don't know if it is the hydrea, but I can't imagine what else it could be.

Hi all, Well MD Anderson contacted me and said they do not take my insurance. It is a Humana PPO. I just turned 65 and I went with that as it offered more. I do not have much time to change as now what ever insurance we are on May 15 we have to stay until the end of the year. They will except medicare but there is no guarantee they will see me. They want all my tests etc. faxed to them..fine but what if they wont accept me I am stuck and have to wait until the end of the year to change and then Humana might not take me back because of this ET. They do pay for Hydrea. I am really interested in Radioactive Phosperous to try out. I will be very busy next week trying to see what I need to do. Since you are all younger than I you wouldnt know. If only I knew this I would have bypassed NY and seen to this sooner.
I am happy Sasha and Genessa are doing better. No message from Barbara. I hope she is still doing as well as ever.
God Bless

Maura