Hydroxyurea and ankle ulcer

Welcome to Connect, @wlm7615. It seems your suspicions were pretty well founded with the rapid healing taking place after stopping the HU. This is evidence you should take to your hematologist. Though, if you’ve felt dismissed in your previous discussion with your theory, that can surely impact your feeling of being able to have a productive chat with your provider.

But it might be worth talking with your hematologist so that you don’t have to go through the process of changing doctors. Ask for a consultation, present the facts and talk about other alternative medications for ET which may help to keep your platelets at a safe level. Just because the potential of leg ulcers, though rare, can develop in people on high doses of 2 gm or so daily, doesn’t mean the medication couldn’t build up in your system to a higher level to cause similar issues. As we age, our bodies process medications slower which can lead to changes in retained levels. I’ve experienced that with another drug unrelated to your issues. But with a bit of sleuthing, my doctor changed dosages to bring the toxic level down to normal. But it takes a doctor willing to work with you. If you’re not finding that with this current hematologists then definitely seek a second opinion.

Are you in an area with options for a 2nd opinion? Do you feel you can talk about this with your current hematologist?

Thank you for the prompt response and useful information. You have sensitively noted my frustrations with my hematologist; I have not gotten a satisfactory response from him in several weeks, despite several requests. He's so busy, I haven't seen him in approximately 4 years, just his nurses. I am actively seeking a second opinion in this area. Hopefully this won't take too long. If that doesn't work, I may come to Mayo in Jacksonville.

Oh my gosh, if you haven’t seen your doctor in 4 years and feel like there’s a lot of backpedaling, I can see your desire to get a second opinion elsewhere. We have to trust and have a good rapport with people on our health care teams.

If you’re interested in Mayo-Jacksonville, here is a link to get the ball rolling. http://mayocl.in/1mtmR63
From that page you can follow the prompts to request an appointment.
I’m glad your leg is healing quickly. But don’t delay in getting another appointment. It’s important to keep those platelets at a healthy level and that require treatment. But if you haven’t been seen in 4 years, it might be time to start fresh with another hematologist. Let me know how you’re doing with a progress report, ok?

Will do

My dad had a similar problem with ulcerated foot. Wound care would not heal it. He was told yes, HU can cause this. I believe he was switched to a smaller dose of HU and anagrelide combo.

A second opinion is a good idea. I am on the same HU dose as you x 6 yrs (70 yo, CALR+) and watch my legs and feet.

Fwiw, my oncology and GP clinic have been fobbing me off on the nurse for the last year, and I feel stonewalled at times by the appointment schedulers when I say I would prefer to see the doctor. The standard of care is often not very proactive in many health care systems, and your Medicare or insurance plan sometimes leaves you with few alternatives.

I feel your frustration!

Is your doctor an MPN specialist. Not all hematologists are MPN specialists, but I believe all MPN specialists are hematologists. A second opinion might be worthwhile.

I spent 6 months being told I had lymphoma and cancer with no treatment plan or follow up with my first hemotologist. My family doctor, who is a NP, said this doesn't make any sense and recommended a second opinion. I have to drive 30 minutes longer, but it was like emerging from the dark ages to modern medicine. Go with your gut and get that second opinion. It completely changed my quality of life.

I just started HU and the literature I received stated lower limb ulcers and even gangrene were rare but possible side effects. Good for you for taking it on yourself!

Welcome to Connect, @deanbears. Kudos to your NP for nudging you to seek a second opinion. And to you for following your ‘gut feeling’ that something wasn’t right with the lack of plan or followup after being told you have lymphoma!
I’d love to hear more of your story. How has switch in doctors completely changed your quality of life? Has this happened since you started HU? Were there other changes that your new hematologist suggested that has helped your symptoms too?

Thank you @loribmt my new hemotologist/ oncologist practices at a holistic center. I was learly, because I was imagining a focus on alternative medicine, but it isn't at all. It simply means they provide me an entire care team to treat my whole person. I have a Dr, NP, RN, Care Coordinator, Mind/Body Counselor on-site pharmacy and medicinary that carries vitamins and an attached hospital. My Counselor helped me nearly as much as the HU! Being listened to, treated as a person, and having a treatment plan turned me around and helped accept the remaining symptoms/limitations.