@hipsu5@colleenyoung ; @janemc
I have received results from my BMP. And I am happy to report that there were no leukemia tendencies and also no myelofibrosis or scarring. So it's just ET/JAK2. My platelet count came down a little in the last test in the beginning of March, but my hem/onc doctor asked me to take 500mg HU now 7 days a week. I really feel those two days! My head is very achy, congested in the afternoon/ evening. I also have a little bit of stomach uneasiness. Hopefully I get used to it again. All and all I feel lucky.
- Hipsu ..
@hipsu5 I started out on HU 500mg 7 days a week had headache but I have a lot of seasonal issues that give me a headache. After 10 months on HU Doctor changed me to 3 days a week I really don't see the difference yet it has only been a couple of weeks. Now after being on a 2 month testing schedule I am back to 4 weeks to see how I am doing on the 3 days. MY platelets were 700 and after 10 months they are back to 240. Hope the 3 days work I think I feel a little better . Good Luck
HU can upset our GI systems. As nohrt4me advises, drink LOTS of water each day. I like yogurt's soothing effects too. You always take your capsules with food, right?
Your headaches may be from the ET itself. Have you ever sprayed lidocaine on the back of your neck? That can help. For me, HU greatly reduced the severity of my headaches. Hope that will be true for you as well.
ET may also be responsible for your congestion. Our mutated platelets are so weird that they can trigger our histamine response. With permission from my oncology nurse, I take an allergy relief pill every morning. Makes all the difference!
@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/
I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister of your ET. I remember my blood doctor telling me I have a genetic mutation of the Janus Kinase gene. (JAK2) I was epecting to get some kind of super hero powers like spiderman but that never happened. I take a 500 mg Hydroxyurea every day which I call "Chemo in a pill." My platelets are under control and I have very few side effects. I do get fatigue in the late afternoon and go to sleep early. Is that just because I am a 65 year old man? Who knows. My advice is to stay active and enjoy every day. From Kentucky, in the heartland of America.
@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/
The congestion some of us experience is not from HU but from ET itself.
Always remember: You are almost certainly the only person with ET your physician has ever encountered, unless you are lucky enough to be in the presence of an oncologist specializing in MPNs.
Your allergist has no idea that ET's weird platelets can trigger your immune response.
I have been on Hu for about a month now. Have had one update on labs. I noticed my WBC declined. I guess this is why they say you are more susceptible to infection/ colds etc. My question is, does this level out? Do you review with your doctor at each check in?
The congestion some of us experience is not from HU but from ET itself.
Always remember: You are almost certainly the only person with ET your physician has ever encountered, unless you are lucky enough to be in the presence of an oncologist specializing in MPNs.
Your allergist has no idea that ET's weird platelets can trigger your immune response.
@janemc
Hi,
I'm lucky (I guess) to be treated at Moffitt cancer in the Malignant Hematology department . Moffitt is thought to be the meca of cancer centers in Florida. But your right about the allergist, and other physicians, I have to explain it to them.
I have been on Hu for about a month now. Have had one update on labs. I noticed my WBC declined. I guess this is why they say you are more susceptible to infection/ colds etc. My question is, does this level out? Do you review with your doctor at each check in?
@dewz13
they do mine every six months and review labs with me, yes. I reduced my dose to EOD 500 mgs and my hair stopped falling out, and did extra labs and have heard nothing back. I assure no news is good news. I'd like to blame the ET or HU on the 15 extra lbs. I'm carrying but that would be a bridge too far.
@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/
@jodyjazz
I had same throat symptoms and reflux. Decided to try gluten-free diet.
Those symptoms became less in 1 week. It's been almost a year on gluten-free diet and symptoms have never returned.
@dewz13
they do mine every six months and review labs with me, yes. I reduced my dose to EOD 500 mgs and my hair stopped falling out, and did extra labs and have heard nothing back. I assure no news is good news. I'd like to blame the ET or HU on the 15 extra lbs. I'm carrying but that would be a bridge too far.
@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.
@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.
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@hipsu5 I started out on HU 500mg 7 days a week had headache but I have a lot of seasonal issues that give me a headache. After 10 months on HU Doctor changed me to 3 days a week I really don't see the difference yet it has only been a couple of weeks. Now after being on a 2 month testing schedule I am back to 4 weeks to see how I am doing on the 3 days. MY platelets were 700 and after 10 months they are back to 240. Hope the 3 days work I think I feel a little better . Good Luck
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6 Reactions@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/
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2 Reactions@bluegrasspv2018 Here here!!
@jodyjazz
The congestion some of us experience is not from HU but from ET itself.
Always remember: You are almost certainly the only person with ET your physician has ever encountered, unless you are lucky enough to be in the presence of an oncologist specializing in MPNs.
Your allergist has no idea that ET's weird platelets can trigger your immune response.
It's all part of the fun of ET!!!
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Helpful -
Hug
3 ReactionsI have been on Hu for about a month now. Have had one update on labs. I noticed my WBC declined. I guess this is why they say you are more susceptible to infection/ colds etc. My question is, does this level out? Do you review with your doctor at each check in?
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Like -
Helpful -
Hug
1 Reaction@janemc
Hi,
I'm lucky (I guess) to be treated at Moffitt cancer in the Malignant Hematology department . Moffitt is thought to be the meca of cancer centers in Florida. But your right about the allergist, and other physicians, I have to explain it to them.
-
Like -
Helpful -
Hug
1 Reaction@dewz13
they do mine every six months and review labs with me, yes. I reduced my dose to EOD 500 mgs and my hair stopped falling out, and did extra labs and have heard nothing back. I assure no news is good news. I'd like to blame the ET or HU on the 15 extra lbs. I'm carrying but that would be a bridge too far.
-
Like -
Helpful -
Hug
2 Reactions@jodyjazz
I had same throat symptoms and reflux. Decided to try gluten-free diet.
Those symptoms became less in 1 week. It's been almost a year on gluten-free diet and symptoms have never returned.
-
Like -
Helpful -
Hug
2 Reactions@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.
@mw2023
With ET, every single day, we're churning out too many platelets.
That makes us exhausted, gives us headaches, wears out our bone marrow, and puts us at risk for blood clots.
Every single day.
Please don't make changes to your HU dose without consulting your oncologist.
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