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Have ET: What if spleen is enlarged?
Blood Cancers & Disorders | Last Active: Aug 21, 2022 | Replies (19)Comment receiving replies
@nohrt4me Thank you for that info. Spleen was not enlarged, fortunately.
As noted above, one Dr. prescribed the HU, the other just an additional low-dose aspirin. I’ve chosen the latter because, frankly, the thought of going on a chemo med forever scares me half to death. However, now I feel like I’m looking over my shoulder, waiting for a stroke or a heart attack to happen. It’s helpful to hear from people who have been on the HU for a time. I’ve only just been diagnosed 2 mos. ago, still questioning every aspect of this disease… Thanks for your response.
Replies to "@nohrt4me Thank you for that info. Spleen was not enlarged, fortunately. As noted above, one Dr...."
was on HU and no problems and yes my spleen has been enlarged for quite a while, since i developed iron defiency anemia was taken off of hu and put on iron pills
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Glad there is no enlargement.
The first year or two with ET is nerve-racking because they don't tell you anything.
HU actually helped me with fatigue and headaches/visual distortions. I wasn't expecting that because we don't associate "chemo" with anything good. I mentioned it to my hemo, and she said, "Yes, some patients say they feel better." Would have been nice to know before she prescribed it.
HU is supposed to be ok to take for 20 years. I started when I was 63, so I'm not too worried about it creating problems.
I do use sunscreen because, like lots of other meds, HU makes your skin more sensitive to sunlight and thus skin cancer.
If you are worried about stroke or heart attacks, talk to your GP. Mine told me to lose 20 pounds (10 more to go!), get more walking in, and to go on my husband's heart healthy diet. She said those would help reduce overall vascular risk aside from ET. So there is stuff you can do to help yourself and maybe give your health a boost. Those changes have also helped with fatigue and headaches. Lots of fresh air seems helpful, too.
Hang in there!