Re peppermint oil: I have a mentholated gel I use on legs for restless leg. Vicks Vaporub has similar effect, but I prefer the gel. Between that and the body brush, no problem. I find the smell very soothing.
If you have allergies, try herbal tea in small doses. ET jacks up your histamine load, and herbal tea makes me itch like crazy.
Christina, thanks so much for the positive post. I wonder everyday if the rest of my days will be worried about this blood disorder. I just retired and want to just enjoy life without worry, I feel good most of the days since my numbers are stable but, I have the worry every month when I go for a draw if it will go up. The doctor's approach is to take the medicine and keep living because it will not kill you. Knowing people who have been taking the Hydrae for years and still doing great is good to know. I am 65 would like to be around to see 77 or even reach my 80s. I now plan to teach for a while to keep busy and not just sitting around worrying. Your post definitely came at the right time for me. Mother's Day was bittersweet lost my mom 2 years ago, she was 95 but lived a wonderful life up to the end and my daughters and I had a wonderful day at mass, went to the cemetery and then dinner.
Thanks, again and please keep in touch. Jennifer
I do have a question. I was just diagnosed with JAK2 ET. Platelets at 790 and will be starting HU and Baby Aspirin after my bone marrow test. I am considered high risk due to my age and symptoms. I am also going to need BCG or some type of localized chemo for non-muscular invasive bladder cancer soon. Has anyone had any experience with this? Along with my stage 3 kidney failure I am starting to feel just tad overwhelmed :/ Thanks for the tips already provided and I know this is a "left field" ask 🙂
Based on my bone marrow biopsy and other labs my hematologist says I have a blood disorder. However, she put me on 500 mg of Hydrea every other day. Isn’t that a cancer drug
Based on my bone marrow biopsy and other labs my hematologist says I have a blood disorder. However, she put me on 500 mg of Hydrea every other day. Isn’t that a cancer drug
@bobala, Many people have asked a similar question when diagnosied with one of the several types of myleoproliferative neoplasms (MPNs) such as Essential Thrombocythemia, Polycythemia Vera, or MF.
You’ll get answers to your question in this disucssion posted below, along with conversations with other members who have beed diagnosied with ET.
@bobala, Many people have asked a similar question when diagnosied with one of the several types of myleoproliferative neoplasms (MPNs) such as Essential Thrombocythemia, Polycythemia Vera, or MF.
You’ll get answers to your question in this disucssion posted below, along with conversations with other members who have beed diagnosied with ET.
I have only taken 3 pills of 500 mg each. I take them every other day. My hematologist said she would not call it blood cancer that she would call it a blood disorder. My platelet count is 632,000. All other lab work was normal
Yes, HU is classified as a chemo drug. It is widely used for sickle cell anemia, some chronic leukemias, and MPNs like ours. I have had ET x 17 years, on HU x 6 years. I am doing OK. Take care!
May I ask how old you were when you were diagnosed? Did you have a +JAX2 mutation. Any side affects with HU? I'm new to all of this and am gathering info. Thank you in advance.
May I ask how old you were when you were diagnosed? Did you have a +JAX2 mutation. Any side affects with HU? I'm new to all of this and am gathering info. Thank you in advance.
I am 75 and I just started taking Hydrea every other day. I’m new too. I’ve only had 3 capsules so far. I take them at night with lots of water with some food. No side effects so far. Hope you do well!
I am 75 and I just started taking Hydrea every other day. I’m new too. I’ve only had 3 capsules so far. I take them at night with lots of water with some food. No side effects so far. Hope you do well!
I'm 75, too. My count was 553 when my doc started me on baby aspirin on 4/30/25. So glad to hear no side effects! My next lab is the end of July...I hope it's good news. Unfortunatley, it's a waiting game with ET. Take care.
May I ask how old you were when you were diagnosed? Did you have a +JAX2 mutation. Any side affects with HU? I'm new to all of this and am gathering info. Thank you in advance.
I was 60 when diagnosed, but hemo looked at past CBCs and said elevated platelets were there starting about age 54.
I am CALR, not JAK2, and never had a clot, so only aspirin until platelets showed rising trend into 800s at age 64. Started 500 mg every day. After a year platelets stalled at 600s, and an extra 500 mg added Mon Wed Fri.
No side effects with HU outside of constipation and barely perceptible hair thinning, which could be age, ok now with more fiber and probiotic, as suggested by hemo. My energy levels were MUCH improved after starting HU. Blood levels stable in 400s for years.
I am 70 now and moving into 17th year with ET. I do feel I am aging faster than friends in their 70s. I am still mentally with it, but less energy and easily discouraged. Part of this is that I really hate retirement, and we have very limited means. ET adds to my stress. Exercise and trying to stay interested in things helps with all this.
Asthma, allergies, skin sensitivities are worsening with age. Right now these are manageable with over-the-counter products. I also have mobility issues due to severe scoliosis.
Overall, I'd say that HU has helped m at least in the short term. Not everybody responds the same, especially if docs start them out on big doses all at once. Ask your doc if you can ease into it.
My dad had ET 20 years ago. Care is SO much better if you get a doc who's up to date. Even so, Dad lived to be 82 and died of something unrelated.
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Re peppermint oil: I have a mentholated gel I use on legs for restless leg. Vicks Vaporub has similar effect, but I prefer the gel. Between that and the body brush, no problem. I find the smell very soothing.
If you have allergies, try herbal tea in small doses. ET jacks up your histamine load, and herbal tea makes me itch like crazy.
Seven years on HU for me, 17 years with ET.
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5 ReactionsChristina, thanks so much for the positive post. I wonder everyday if the rest of my days will be worried about this blood disorder. I just retired and want to just enjoy life without worry, I feel good most of the days since my numbers are stable but, I have the worry every month when I go for a draw if it will go up. The doctor's approach is to take the medicine and keep living because it will not kill you. Knowing people who have been taking the Hydrae for years and still doing great is good to know. I am 65 would like to be around to see 77 or even reach my 80s. I now plan to teach for a while to keep busy and not just sitting around worrying. Your post definitely came at the right time for me. Mother's Day was bittersweet lost my mom 2 years ago, she was 95 but lived a wonderful life up to the end and my daughters and I had a wonderful day at mass, went to the cemetery and then dinner.
Thanks, again and please keep in touch. Jennifer
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9 Reactions@ghen, you may also wish to follow the discussions in the Bladder Cancer support group here: https://connect.mayoclinic.org/group/bladder-cancer/
There are several helpful discussions about BCG, like this one:
- First BCG treatment: What to expect?https://connect.mayoclinic.org/discussion/first-bcg-treatment-what-to-expect/
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1 ReactionBased on my bone marrow biopsy and other labs my hematologist says I have a blood disorder. However, she put me on 500 mg of Hydrea every other day. Isn’t that a cancer drug
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Like -
Helpful -
Hug
2 Reactions@bobala, Many people have asked a similar question when diagnosied with one of the several types of myleoproliferative neoplasms (MPNs) such as Essential Thrombocythemia, Polycythemia Vera, or MF.
You’ll get answers to your question in this disucssion posted below, along with conversations with other members who have beed diagnosied with ET.
Is Essential Thrombocythemia a blood disease or cancer?
https://connect.mayoclinic.org/discussion/is-essential-thrombocythemia-a-blood-disease-or-cancer/
How have you been doing with the Hydroxurea? Are you experiencing any side effects?
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5 ReactionsI have only taken 3 pills of 500 mg each. I take them every other day. My hematologist said she would not call it blood cancer that she would call it a blood disorder. My platelet count is 632,000. All other lab work was normal
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Like -
Helpful -
Hug
2 ReactionsMay I ask how old you were when you were diagnosed? Did you have a +JAX2 mutation. Any side affects with HU? I'm new to all of this and am gathering info. Thank you in advance.
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Like -
Helpful -
Hug
1 ReactionI am 75 and I just started taking Hydrea every other day. I’m new too. I’ve only had 3 capsules so far. I take them at night with lots of water with some food. No side effects so far. Hope you do well!
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Like -
Helpful -
Hug
6 ReactionsI'm 75, too. My count was 553 when my doc started me on baby aspirin on 4/30/25. So glad to hear no side effects! My next lab is the end of July...I hope it's good news. Unfortunatley, it's a waiting game with ET. Take care.
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Like -
Helpful -
Hug
4 ReactionsI was 60 when diagnosed, but hemo looked at past CBCs and said elevated platelets were there starting about age 54.
I am CALR, not JAK2, and never had a clot, so only aspirin until platelets showed rising trend into 800s at age 64. Started 500 mg every day. After a year platelets stalled at 600s, and an extra 500 mg added Mon Wed Fri.
No side effects with HU outside of constipation and barely perceptible hair thinning, which could be age, ok now with more fiber and probiotic, as suggested by hemo. My energy levels were MUCH improved after starting HU. Blood levels stable in 400s for years.
I am 70 now and moving into 17th year with ET. I do feel I am aging faster than friends in their 70s. I am still mentally with it, but less energy and easily discouraged. Part of this is that I really hate retirement, and we have very limited means. ET adds to my stress. Exercise and trying to stay interested in things helps with all this.
Asthma, allergies, skin sensitivities are worsening with age. Right now these are manageable with over-the-counter products. I also have mobility issues due to severe scoliosis.
Overall, I'd say that HU has helped m at least in the short term. Not everybody responds the same, especially if docs start them out on big doses all at once. Ask your doc if you can ease into it.
My dad had ET 20 years ago. Care is SO much better if you get a doc who's up to date. Even so, Dad lived to be 82 and died of something unrelated.
Hope this helps!
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Hug
10 Reactions