Polycythemia: Are you asymptomatic?

Posted by slk2421 @slk2421, Oct 9, 2022

Any idea of % of polycythemia patients that are asymptomatic?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Thanks Christina , I have been to the wound clinic and had some professional care. I think yesterday was an an anomaly I had used a commercial bandage and the wound looked wet. Went to just gauze last night and by golly looks a bit better today. Thanks for your response. No diabetes and no history of this happening before .

REPLY
Profile picture for pelicanpoint @pelicanpoint

PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom

Jump to this post

So, I’m wondering if you’ve ever had any prior problems with a wound healing? I’m sure if you are a diabetic you would have mentioned that. And, you didn’t specifically blame contact with your footwear causing the original wound.
You need You need a wound care specialist. I used to handle claims made against nursing homes where both decubitus and stasis ulcers occur with unfortunate frequency, most decubs usually from a bad combo of diabetes and lack of movement. Very often a wound care specialist nurse would be called in and accomplished what no one else could.
If it were me I would ask my MD for help finding one or for referral to a dermatologist to find a wound care specialist. Hospitals also usually have dedicated wound care departments. Maybe Lori an add resources for such a specialist?
Please do not delay in finding help to heal that wound.

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

@pelicanpoint Hi Tom, with as much walking as you do, having a sore on your heel for 10 months is pretty concerning on multiple levels. From a little research this morning, there have been some rare, documented cases of ulcers in lower legs and feet associated with longterm, higher dosages of HU. Again, rare. Apparently there can be changes in the cellular structure for normal cell repair which may interfere with usual wound care treatment.

Your doctor took you off the hydroxy for now but it’s important to have the wound tended by a professional. Make sure they’re aware of the Hydroxyurea involvement. Have you consulted with a podiatrist or dermatologist?

Jump to this post

Thanks Lori, yes I am having it cared for by the professionals. I have switched to just gauze yesterday I t looks much better today as it's not wet from a traditional bandage .... Knock on wood.

Tom

REPLY
Profile picture for pelicanpoint @pelicanpoint

PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom

Jump to this post

@pelicanpoint Hi Tom, with as much walking as you do, having a sore on your heel for 10 months is pretty concerning on multiple levels. From a little research this morning, there have been some rare, documented cases of ulcers in lower legs and feet associated with longterm, higher dosages of HU. Again, rare. Apparently there can be changes in the cellular structure for normal cell repair which may interfere with usual wound care treatment.

Your doctor took you off the hydroxy for now but it’s important to have the wound tended by a professional. Make sure they’re aware of the Hydroxyurea involvement. Have you consulted with a podiatrist or dermatologist?

REPLY

PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom

REPLY
Profile picture for christina3444 @christina3444

Good morning! Having never heard of Ozone Therapy and having PV/JAK2 and taking 1000 mg of HU for @5 years and undergoing phlebotomies several times a year, I thought I’d read that Cleveland Clinic article you attached.
At the risk of “injecting” (pun intended) some humor into a very serious discussion. I’ll stick with a phlebotomy any day!

Jump to this post

Hi Christina! LOL. Loved the pun! I’m in full agreement with you, I’d take a phlebotomy any day over some of the ‘entry’ points and risks with the ozone therapy. 😂

I had heard of Ozone therapy before, but not associated with any blood cancer treatments. An acquaintance had tried OT for Lyme disease through a functional therapy practitioner. Didn’t seem successful but what ultimately helped was the hyperbaric chamber sessions.

When there’s an underlying mutation involved in our blood conditions, unless that could be reversed I don’t see how ozone therapy would cure the condition.
Thanks for injecting the humor!! 😁

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Connect, @nobody1 Interesting concept, using ozone treatments to treat blood disorders. But to date, ozone therapy hasn’t been tested in large-scale clinical trials conducted on humans, so there is limited information regarding treating blood conditions such as Polycythemia Vera.
Posting a couple of articles below with information about ozone therapy that you might be interested in reading.
From Cleveland Clinic:
https://health.clevelandclinic.org/ozone-therapy
Medskill.com: https://www.mediskill.com/ozone-therapy/comparing-iv-ozone-therapy#toc-what-is-iv-ozone-therapy-used-for-

Were you recently diagnosed with PV? Does your hematologist currently have you on any treatments?

Jump to this post

Good morning! Having never heard of Ozone Therapy and having PV/JAK2 and taking 1000 mg of HU for @5 years and undergoing phlebotomies several times a year, I thought I’d read that Cleveland Clinic article you attached.
At the risk of “injecting” (pun intended) some humor into a very serious discussion. I’ll stick with a phlebotomy any day!

REPLY
Profile picture for nobody1 @nobody1

Has anyone heard of using ozone to treat PV?

Jump to this post

Welcome to Connect, @nobody1 Interesting concept, using ozone treatments to treat blood disorders. But to date, ozone therapy hasn’t been tested in large-scale clinical trials conducted on humans, so there is limited information regarding treating blood conditions such as Polycythemia Vera.
Posting a couple of articles below with information about ozone therapy that you might be interested in reading.
From Cleveland Clinic:
https://health.clevelandclinic.org/ozone-therapy
Medskill.com: https://www.mediskill.com/ozone-therapy/comparing-iv-ozone-therapy#toc-what-is-iv-ozone-therapy-used-for-

Were you recently diagnosed with PV? Does your hematologist currently have you on any treatments?

REPLY

Has anyone heard of using ozone to treat PV?

REPLY
Profile picture for rekstrom @rekstrom

Our Oncologist / Hematologist told us that that wasn’t an option for my wife. We see the Oncologist every six months. No other treatments.

Jump to this post

Did your wife not receive any treatment for her PV at all?

REPLY
Please sign in or register to post a reply.