Hi all, I saw the oncologist yesterday, and after testing where my mouth sores were coming from, over the past two months, they took me off Hydroxycarbomide and as the mouth sores have virtually disappeared, have decided that was the cause. So now, no more Hydroxycarbomide but in two weeks time I will have venesection, if the blood comes easy and the blood test later shows platelets good, I will stay doing that hopefully maybe just once a month. If this doesn’t work I will have to have the interferon injection.
Now, if I could get my pain sorted out for Sciatica i’ll Be happy 😁
🤗🤗 to everyone,
Yvette X
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Yvette49
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Sounds like an improvement. My physical therapist showed me sciatica exercises I could do at home that were on YouTube. First, at their clinic they did adjustments and taught me how to do the exercises. Maybe your orthopedic doc can see if you need physical therapy
Hydrea can do that. I was on it for 13 years before I started having mouth sores. When I started Jakafi my Hydrea dose was cut in half and my mouth healed.
HU is often the culprit in mouth sores. Can also cause oral carcinomas apparently. I turned out to be HU-intolerant, with mouth ulcers as one sign of toxicity, even at very low doses. I am now on phlebotomy-only for JAK2+PV and doing fine. Hope you find the new approach works for you. Assuming you are PV since the doc put venesection in place. It can actually make your platelets go up as the body reads it as a bleeding incident. It does great with controlling hematocrit and the other red blood cell numbers - which is why it is so important. Hope it works out for you.
Thanks so much for sharing that information because there are many of us here who speculate, (correctly or otherwise), that HU has a track record for causing a myriad of ulcers and other non-melanoma Skin Cancers etc.
My current understanding is that the ulcers will usually only disappear after the cessation of HU etc.
Hi Steve, it’s a shame really that I had to come off Hydroxycarbomide as it was working very well for me....with no real side effects, just eventually the mouth sores :-((
Yes, but if it is toxic, and is adversely affecting you then best to move on to something that is less so, in my view...
Hopefully, you will be like a great many others here & respond really well to your venesections, and maybe the Interferon will resolve most of your issues too in time...
I'm on interferon after the HU stopped working for me... I flippin love it... its lowered my platelet to 400 ish... I've et jak2 +..... changing to org in September because theres a shortage of the 0ne I'm on due to peg being more utilized...
So...yesterday I went for my venesection, first the nurse was going to put me on a drip, for something that all the other 6 patients were sitting there having....until I said to her...how much blood will you take. She looked at me and said...oh, I said I am having Venesection,....she said oh you need to lay down. So 10 mins later after, going into my only vein that looked good, after a recent blood test and still bruised, my blood was coming out really slow, she said it’s really thick that’s why it’s slow, she wanted to get 500ml but only got 300ml when the blood stopped flowing. Hope my next blood test shows good!!!!
I have just come back from the Drs with a plea, I cannot wait 5 to17 weeks to be referred to a physio person to assess if I am in enough pain to be referred to see a specialist. Life is on hold at the moment, I cannot walk for longer that 3 mins....we’ll I can but I am in severe sciatica pain. The thing is, I am very concerned now, as I have it ( not as bad) in my other leg.
Sorry to have a moan 😢 but thank you for listening
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