I am a 76-year-old male, diagnosed in 2022 with ET JAK 2. The oncologist put me on 500mg hydroxyurea and 2 baby aspirin a day. All was fine symptoms-wise until 3-4 months on hydroxyurea, and terrible itching started. I got into the itch/scratch/itch cycle, then the tiny little red spots on my upper back, shoulders, and arms grew and eventually turned into a slightly raised, pale red rash. I tried Caladryl clear gel, and it worked pretty well. Almost 50% of patients with ET have pruritus, and the same holds for those who take hydroxyurea, so some of you must have found some helpful solutions, or else you itch and have skin rashes as I do!
I also take an antihistamine for year-round allergies, and it works so-so on this, but it helps me get to sleep. I did not know that Caladryl (pramoxine, the main ingredient) is not to be used on large areas. So the drowsiness, daytime sleepiness, evening sleepiness, and insomnia I was getting were caused by toxic levels of promoxine. Stopped it and saw a derm. She prescribed triamsinoloe 2% cream. 2 x a day. It gave me steroid side effects the same as the Caladryl, because I used it over such a large area of skin!
Has anyone with bad pruritus found something they can take or apply that works for them without dangerous side effects??
@jodyjazz Good morning Jody. I take 500 mg. of Hydroxyuria (Hydrea) 5 days a week. I do not take it on Tuesday and Saturday. I chose those days in case I ever wanted a glass of wine, I could enjoy it on a Saturday, ha, ha! Everyone’s dosage is different depending upon their bloodwork results. I think that when I first started taking Hydrea, my doctor was checking my blood weekly to see how my platelets were responding, then every two weeks, then monthly. Once my dosage was established, my bloodwork was checked every 6 months. I see my Oncologist twice each year. My platelets stay in the low 400,000. I’ve been very grateful that I’ve responded so well to the medication and have had no side effects other than being a bit tired. Although I am 69 years old now so maybe that’s part of it too, ha, ha! Gail 😀
@athl Gail,
Woops, I have a glass or two of wine once or twice per week. No one told me I couldn't . So Im now taking HU 300mg every other day.......versus everyday when my hair started falling out. Once I cut back hair loss slowed and stopped. But, platelets went from 415 to 441, not alarming and will get checked again in May. My highest count was 576 before HU and dropped to 448.
I am tired more than ever in my life but as you say.........I am 79 :-).
I am a 76-year-old male, diagnosed in 2022 with ET JAK 2. The oncologist put me on 500mg hydroxyurea and 2 baby aspirin a day. All was fine symptoms-wise until 3-4 months on hydroxyurea, and terrible itching started. I got into the itch/scratch/itch cycle, then the tiny little red spots on my upper back, shoulders, and arms grew and eventually turned into a slightly raised, pale red rash. I tried Caladryl clear gel, and it worked pretty well. Almost 50% of patients with ET have pruritus, and the same holds for those who take hydroxyurea, so some of you must have found some helpful solutions, or else you itch and have skin rashes as I do!
I also take an antihistamine for year-round allergies, and it works so-so on this, but it helps me get to sleep. I did not know that Caladryl (pramoxine, the main ingredient) is not to be used on large areas. So the drowsiness, daytime sleepiness, evening sleepiness, and insomnia I was getting were caused by toxic levels of promoxine. Stopped it and saw a derm. She prescribed triamsinoloe 2% cream. 2 x a day. It gave me steroid side effects the same as the Caladryl, because I used it over such a large area of skin!
Has anyone with bad pruritus found something they can take or apply that works for them without dangerous side effects??
Hello,
I was just diagnosed with ET JAK2 2 weeks ago today. My platelets last labs were at 825. I started Hydroxyurea last Thursday ( 5 days ago) 500mg twice a day and so far no side effects. I am 63, work full time at a desk job and was quite shocked at this diagnosis. It was discovered thru routine blood panel after I hadn't had any labs done since 12/2023.
I was referred to hematologist and fully expected to just have some more tests ordered, probably no big deal. When he came in and said I had ET JAK2, something I never heard of, and that it was a type of chronic cancer and I'd need to take a chemo drug, I couldn't believe it. Especially since I was feeling mostly fine with just some dizziness and vision distortions the urgent care doc attributed to Vertigo. Wrapping my brain around it was overwhelming and difficult. What is this? How am I going to feel? How big or small a deal is this? What does it mean? What does my future look like? Can I still work? So many emotions and questions but under it all I knew I was lucky to have something manageable and not a terminal prognosis. I have friends and family I've watched battle for their very lives and endure chemo and radiation and shortened lives, so I feel very fortunate.
My best friend found this connection and am so glad to find a community where I can find answers to so many questions and read other's experiences with this same, I don't even know what to call it, a condition? a disease? the C word? A place to find and give support and share experiences and knowledge.
So far my occasional dizziness persists but I am at the beginning of this. Am really hoping the medication does it's thing and I can continue living and working without too much interference, that I am sure we are all hoping for.
I have 2 grown children and 5 grandchildren from age 1 to 18. I am divorced and live on my own so definitely need to keep working, retirement is not happening in the near future. I also have a wonderful group of loving supportive friends that are family (my framily).
So that's my story so far, looking forward to connecting here and seeking answers and wanting to know other's experiences.
Hi @sarahgault, Welcome to Connect. I’m glad your best friend found this forum for you! They’re your ‘best friend’ for a reason! ☺️
As with so many blood conditions or blood cancers, they tend to develop slowly and are often found through routine blood work with physicals. Essential Thrombocythemia (ET) is just one condition, in a group of blood disorders called myeloproliferative neoplasms or MPNs for short.
Please feel free to reach out to any of the members if you have questions!
It’s been only a couple of weeks since your diagnosis but you certainly had some quick intervention from your doctors. That’s excellent. You’ll most likely be having blood work done every few weeks initially to check the progress of the medication in lowering your platelet level.
Thank your BFF for me for referring you to Connect. Are they a member here too? And did you treat for lunch? 😀
@athl Gail,
Woops, I have a glass or two of wine once or twice per week. No one told me I couldn't . So Im now taking HU 300mg every other day.......versus everyday when my hair started falling out. Once I cut back hair loss slowed and stopped. But, platelets went from 415 to 441, not alarming and will get checked again in May. My highest count was 576 before HU and dropped to 448.
I am tired more than ever in my life but as you say.........I am 79 :-).
@jodyjazz Hi Jody, sounds like you’re doing really well! As you read everyone’s posts, I’m sure you’ve noticed that we all have different experiences relating to our blood cancers and meds taken. I was first diagnosed at age 45. At that time, the Jack 2 enzyme had not been discovered yet so the doctors ran every test imaginable and if those came back normal except for your platelets still being high, you were diagnosed with essential thrombocythemia. Due to my age, the doctor wanted to hold off as long as possible before I started hydroxyuria. Since I didn’t have symptoms, except for occasional eye migraines, I was able to hold off starting treatment for 5 years. Once my platelets reached 1 million, I started having eye flashes and was getting more eye migraines. So, at age 50, I started taking Hydroxyuria. I also take 81 mg. of aspirin daily. I think many of us have symptoms of being extra tired. I am eternally grateful that there are medications that can treat our disorders! Although these meds can carry side effects, without them, I wouldn’t be here. It’s interesting though, Hydrea was originally used to treat women with ovarian cancer. It’s not used for that anymore, however, the side effect of the medication is that it lowers blood platelets. Another cool thing about Hydrea is that it’s also used for sickle cell anemia! It’s pretty amazing what medications can do!
Aloha! I am 73. diagnosed with ET JAK2 about 3 years ago. elevated plates to 707. put on 500mg/day w/81mg baby aspirin. numbers were dropping (495 low) but heading up again since Dec 2024. we added 2 more pills per week. we will do the numbers in about a month to see if that helped. I'm around 600 now; we'd like to be at 500 or below--but 500 is a happy compromise. I have phantom feelings sometimes in my legs. Like sunburn or the feeling that I have a thread hanging and floating near my calf (crazy feeling--and only occasionally. I do itch, but I've always itched. I have tons of energy--so the HU does not seem to affect me in that way. I freaked out when I was first diagnosed...not at the condition but having to take a drug the rest of my life?!!! R U Kidding me? Anyway, I have calmed down some since 🙂 and have resigned myself to taking the pills (thank goodness these are all I take) and I try to life in the moment. I wish you tons of luck and lots of happiness! With aloha, jd
@kat260 I have just gotten the date (8 th of April) of the appointment with this renowned Professor and can’t wait to share his opinion with you and the community, because he always emphasizes that interferon might an preferable option even for older 😅60 years old people because his studies has shown an remarkably change in the high of the mutation. He pronounced that 80 percent at least of the patients has a lower rate of mutation vaf and up to 4o percent a complete remission. And they have shown less incidents in terms of heart attacks or strokes.
@kat260 sorry that my message hasn’t been visible for you. As i have expected he highly recommended interferon because his studies have shown significant reductions of vaf. and more importantly less incidents in terms of stroke and heart attacks. However his assumption is that 50 to 60 percent are responders. Now I am gonna try to convince my normal oncologist to find a way to go this path together, although it will be difficult because it isn’t approved yet.
@kat260 sorry that my message hasn’t been visible for you. As i have expected he highly recommended interferon because his studies have shown significant reductions of vaf. and more importantly less incidents in terms of stroke and heart attacks. However his assumption is that 50 to 60 percent are responders. Now I am gonna try to convince my normal oncologist to find a way to go this path together, although it will be difficult because it isn’t approved yet.
@kat260 With responders i tried to convey that only for 50 to 60 percent of the patients interferon works regarding positive effects according this studies. Other than that, Besremi isn’t approved for patients with ET yet.
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I am a 76-year-old male, diagnosed in 2022 with ET JAK 2. The oncologist put me on 500mg hydroxyurea and 2 baby aspirin a day. All was fine symptoms-wise until 3-4 months on hydroxyurea, and terrible itching started. I got into the itch/scratch/itch cycle, then the tiny little red spots on my upper back, shoulders, and arms grew and eventually turned into a slightly raised, pale red rash. I tried Caladryl clear gel, and it worked pretty well. Almost 50% of patients with ET have pruritus, and the same holds for those who take hydroxyurea, so some of you must have found some helpful solutions, or else you itch and have skin rashes as I do!
I also take an antihistamine for year-round allergies, and it works so-so on this, but it helps me get to sleep. I did not know that Caladryl (pramoxine, the main ingredient) is not to be used on large areas. So the drowsiness, daytime sleepiness, evening sleepiness, and insomnia I was getting were caused by toxic levels of promoxine. Stopped it and saw a derm. She prescribed triamsinoloe 2% cream. 2 x a day. It gave me steroid side effects the same as the Caladryl, because I used it over such a large area of skin!
Has anyone with bad pruritus found something they can take or apply that works for them without dangerous side effects??
Thank you in advance!!!
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1 Reaction@athl Gail,
Woops, I have a glass or two of wine once or twice per week. No one told me I couldn't . So Im now taking HU 300mg every other day.......versus everyday when my hair started falling out. Once I cut back hair loss slowed and stopped. But, platelets went from 415 to 441, not alarming and will get checked again in May. My highest count was 576 before HU and dropped to 448.
I am tired more than ever in my life but as you say.........I am 79 :-).
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Helpful -
Hug
1 Reaction@circawdm
I'm so sorry for what you're going through.
Hi @sarahgault, Welcome to Connect. I’m glad your best friend found this forum for you! They’re your ‘best friend’ for a reason! ☺️
As with so many blood conditions or blood cancers, they tend to develop slowly and are often found through routine blood work with physicals. Essential Thrombocythemia (ET) is just one condition, in a group of blood disorders called myeloproliferative neoplasms or MPNs for short.
Here are a couple of articles for a quick tutorial:
- From the American Cancer Society https://www.cancer.org/cancer/types/myelodysplastic-syndrome/about/myeloproliferative-disorders.html
-From Very Well Health.com https://www.verywellhealth.com/essential-thrombocythemia-2860907
-Another article from Very well health.com regarding the JAK2 mutation:
https://www.verywellhealth.com/jak2-mutation-5217909
You might also find more information with reading through this list of discussions from other members with ET. As you can see, you’re not alone in this diagnosis. https://connect.mayoclinic.org/search/
Please feel free to reach out to any of the members if you have questions!
It’s been only a couple of weeks since your diagnosis but you certainly had some quick intervention from your doctors. That’s excellent. You’ll most likely be having blood work done every few weeks initially to check the progress of the medication in lowering your platelet level.
Thank your BFF for me for referring you to Connect. Are they a member here too? And did you treat for lunch? 😀
-
Like -
Helpful -
Hug
4 Reactions@jodyjazz Hi Jody, sounds like you’re doing really well! As you read everyone’s posts, I’m sure you’ve noticed that we all have different experiences relating to our blood cancers and meds taken. I was first diagnosed at age 45. At that time, the Jack 2 enzyme had not been discovered yet so the doctors ran every test imaginable and if those came back normal except for your platelets still being high, you were diagnosed with essential thrombocythemia. Due to my age, the doctor wanted to hold off as long as possible before I started hydroxyuria. Since I didn’t have symptoms, except for occasional eye migraines, I was able to hold off starting treatment for 5 years. Once my platelets reached 1 million, I started having eye flashes and was getting more eye migraines. So, at age 50, I started taking Hydroxyuria. I also take 81 mg. of aspirin daily. I think many of us have symptoms of being extra tired. I am eternally grateful that there are medications that can treat our disorders! Although these meds can carry side effects, without them, I wouldn’t be here. It’s interesting though, Hydrea was originally used to treat women with ovarian cancer. It’s not used for that anymore, however, the side effect of the medication is that it lowers blood platelets. Another cool thing about Hydrea is that it’s also used for sickle cell anemia! It’s pretty amazing what medications can do!
-
Like -
Helpful -
Hug
4 ReactionsAloha! I am 73. diagnosed with ET JAK2 about 3 years ago. elevated plates to 707. put on 500mg/day w/81mg baby aspirin. numbers were dropping (495 low) but heading up again since Dec 2024. we added 2 more pills per week. we will do the numbers in about a month to see if that helped. I'm around 600 now; we'd like to be at 500 or below--but 500 is a happy compromise. I have phantom feelings sometimes in my legs. Like sunburn or the feeling that I have a thread hanging and floating near my calf (crazy feeling--and only occasionally. I do itch, but I've always itched. I have tons of energy--so the HU does not seem to affect me in that way. I freaked out when I was first diagnosed...not at the condition but having to take a drug the rest of my life?!!! R U Kidding me? Anyway, I have calmed down some since 🙂 and have resigned myself to taking the pills (thank goodness these are all I take) and I try to life in the moment. I wish you tons of luck and lots of happiness! With aloha, jd
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Like -
Helpful -
Hug
4 Reactions@birgitr Hi. How did your appointment with the Professor go? Did he suggest interferon as a good option for those aged 60+ ?
@kat260 sorry that my message hasn’t been visible for you. As i have expected he highly recommended interferon because his studies have shown significant reductions of vaf. and more importantly less incidents in terms of stroke and heart attacks. However his assumption is that 50 to 60 percent are responders. Now I am gonna try to convince my normal oncologist to find a way to go this path together, although it will be difficult because it isn’t approved yet.
@birgitr No worries. Sounds good. Sorry, not sure what you mean by responders? Are the use of interferons not approved in Germany?
@kat260 With responders i tried to convey that only for 50 to 60 percent of the patients interferon works regarding positive effects according this studies. Other than that, Besremi isn’t approved for patients with ET yet.