Hydroxyurea and ankle ulcer
Has anyone had a painful ulcer (that won't heal) suddenly show up on your ankle, after taking Hydroxyurea? I was diagnosed with ET and had been taking HU (500/1000 mg on alternate days) for about 5 years. HU controlled my platelets well, but suddenly an ulcer showed up, that would not heal after 5.5 months (the last 6 weeks I received specialized wound care, without any benefit). I was not aware of any injury or insect bite; and diabetes, venal/arterial insufficiency, cancer, and infection were ruled out as possible causes. My online research revealed that such an ulcer is a documented side effect of HU (and that complete cessation of the HU was required to enable healing of the ulcer). However, my hematologist said my ulcer was almost certainly not a side effect of HU, because "such ulcers occur only very rarely and only at high dosages". Finally, in desperation, I quit the HU and within 1 week there were signs of healing, which has continued. Now I have to get a second opinion re: diagnosis and alternative treatments.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Sounds like you found a great place! The psychological side of illness so often gets ignored. In 10 years since diagnosis, I have had exactly one health care provider, a nurse, ask how I was coping. Poor woman! She got to hear about my parents final illnesses and death, dealing with clearing out and selling my mom's hoarder house, my retirement, husband's heart attack, son's wacky girlfriend, death of my closest friend, never mind the cat with seizures. I keep myself on a pretty tight leash, but it was nice to hear somebody make a few sympathetic noises and offer a couple suggestions for self care.
You hit a goldmine with your new healthcare center! This should be the standard of care for everyone. I’m thrilled for you after your last mis-adventure!
How are you coping today? I mean it. I had a therapist at my family NP office to help me cope with the first hemotologist. Does your insurance offer free telehealth visits? I have used those visits in the past with a mental health professional. If not, feel free to dump all over me. I took my grandkids to Storytime today so I can take it.
Well, aren't you nice, and on the heels of storytime, too! Did you do a craft after? I see the library is having stories about artists this summer and doing Jackson Pollock-type paintings today with the kids.
I never got much from therapy, honestly, tho I know it helps lots of other people. I get more out of reading a book or repetive/meditative activities like knitting if the anxiety levels get to me.
I have been on HU for almost 19 years. I did develop slow healing wounds at different locations on my leg (mostly ankle area) while on this therapy. It just takes time for them to heal. I was advised I could switch treatments but being on this for this long, it made no sense to switch. My platelets are well controlled on this and I feel like aside from that side effect my body and mind have adapted to this medication.
I think you should write a book! You sound like the next Erma Bombeck!
My dog takes the brunt of my complaints and listens like the trooper he is, and no psych degree. And, the best part of this “therapy” is that he doesn’t comment or tell me Im wrong or whining. And, he never repeats what he hears. I think the professionals call this “self talk” if you don’t have a dog.
But, I decided years ago to limit my complaints to no more than 15 minutes a day because it’s exhausting and can get boring (for both me and the dog).
I honestly don’t know if this technique works with cats😉
Aww, pets are so great! Here's my therapist.
So, cats also do the hard listening!
I am Gen X and we believe in therapy, but it isn't for everyone. I never could meditate, myself, but everyone is different in stress.
We made a seahorse after Storytime, thank you for asking. I don't watch TV or movies, so I read when I am not with family. As long as I am busy, I don't generally dwell on the negative. Actually I am in a positive place since diagnosis and treatment, but I love the sounding board therapy provides.
Whatever works for you is the best for you!
O older woman on Hydroxyurea for sometime. Had sore development back of lower calf area. Family Dr did a biopsy and that made things worse. Had infection after, then Antibiotics. Turned out to be ulcer and had it all summer and about 5 months total. Stopped Hydroxyurea for awhile, applied Aloe Vera gel carefully with a Qtip. Kept it covered. Finally healed and the Aloe Vera gel was used again right away when another ulcer seemed to be developing on ankle and it cleared up.