New here but been on treatment for Essential thrombocythemia ('ET') last 16 years
Got side effects during heat conditions affecting my skin while taking hydroxycarbamide
Most of the time I keep positive and see a productive day while on treatment and dealing with condition side effects as a win but today feels too much and frustrated to accept I will be on this chemotherapy for live anyone else similar to this?
Sometimes just talking frustrations out aloud seems to help
Hello there @NM20Jota, welcome to the forum. I’m glad you joined and may I just say how great it is that you’ve been living with Essential thrombocythemia ('ET') for so long, although of course I’m sorry about those side effects. I’ll just put the Blood Cancer UK information about Essential thrombocythemia ('ET') here should you fancy a read: Essential thrombocythaemia | Blood Cancer UK
In 2023 I was diagnosed with Polycythaemia vera ('PV'), which you likely know is closely related to Essential thrombocythemia ('ET') as they are both Myeloproliferative Neoplasms. Hydroxyurea seems to be a pretty common treatment for Myeloproliferative neoplasms ('MPN') as many of us around the forum take it. You’re not alone in it affecting your skin, I wonder if yours dries out like mine? I’ve had to figure out a whole moisturising routine.
Glad to read you keep positive, but you’re not alone in having frustrating days. It would be amazing if we didn’t feel frustrated sometimes living with these Myeloproliferative neoplasms ('MPN'), right?!
Do keep sharing how you’re feeling, this is exactly the right place to do so and you’re well understood here. If there’s any information you might like, do just ask and you can always search the site using the search box at the top.
Glad you found the forum @NM20Jota, do keep us posted about how you get on.
@NM20Jota Hello and welcome to the forum. I’m a relative newcomer to Essential thrombocythemia ('ET'), just got the diagnosis a year ago. I too am taking hydroxycarbamide. I am 71 and already had dry skin, I have not noticed this making it worse. I have some lotion that I keep on my desk and in the bathroom, mine doesn’t itch but it can look bad. I also have purpura spots on my arms, some of them are pretty good sized. Nobody seems to notice those, if they do they haven’t said anything.
I have had some other chronic conditions including coronary artery disease and kidney disease. The major physical problems I experience are swelling in my feet and legs (diuretics help with that), and I take a statin and aspirin for the CAD. I’m also on several other medications. One of the complications I am facing is that my heat tolerance has diminished, probably from a number of the meds I am on. It means I have to break my time outside when mowing my lawn–but I can still do it.
My take on it is that I have already lived as long as my father (who was in poor health for several years before his death), and much longer than both grandfathers. I have a good quality of life and can do almost anything I want to do. I do experience fatigue and have worked to figure out ways to prioritize so that I can get the essential things done. I still work full time and enjoy the job.
When I compare myself to the male ancestors I mentioned, I feel fortunate that I can take medications that are keeping me alive and able to live a great life long beyond what the men in my family have done before. I think a lot about the things that taking these medications and being monitored may allow me to do. I am teaching my 15 year old granddaughter to drive and smile to think about growing old enough to see her graduate college, have a career, and maybe even have kids.
Great that you can come here and share your frustrations–we all have them. In fact I am up in the middle of the night having woken up due to sinus problems. I find the forum and the great people here are a great opportunity to be understood and to share with others.
Wishing you the best,
Bill