I stated hydroxycarbamide 500mgs last July after many months of talking things over with my consultant, I’ve had blood cancer for 12 years now and am on daily aspirin and blood thinners as well but my body now needs this chemo medication and I’m on it for life I was started on 7 days every day one tablets and now after 6 months I’m now down to one tablet 4 days a week also still seeing my consultant every 3 months even after all these years,
I’m doing ok actually I still get the bad mouth ulcers but I can deal with it more now my hair has also thinned out but it’s what it is
I hope you get some more answers
Take care from Carol
Oh @Marylin you really have been going through it but I am impressed that you have got your 3 consultants to discuss your future care and treatment together.
I have also had shortness of breath recently and it is really scary.
Also there is the phycological to hair loss etc.
If I thought of it I would never leave the home, I look like a mixture of Friar Tuck and Worsel Gummidge.
Please do let us know what your consultants decide and take lots of special care of yourself
Hi @Wilma Thanks so much for your update it sounds as if you have had a lot going on recently.
Join the thinning hair club, yes, it is what it is.
Please do keep posting and really look after yourself
I had Polycythaemia vera (PV) for about 25 years and took Hydoxycarbamide for most of that time. It kept my blood levels under control during this time. I had regular consultations with my consultant who adjusted the dose as necessary.
I didn’t have any side effects and was able to live a normal life. Perhaps I was lucky.
In respect of sex the only thing I was told it would affect my fertility.
I don’t recall receiving any advice on anything else.
I am no longer taking Hydoxycarbamide as I have moved on from Polycythaemia vera (PV) to Myelofibrosis and different medications.
Hi Erica
Sorry to hear you have developed shortness of breath. Mine has worsened over the past year, one of the outcomes of never seeing the same GP twice. Each GP prescribed a different lot of anribiotics and nothing improved. I finally ended up being sent to A & E in October as blood oxygen stats were in low 80s. Do get yourself an oxymeter they are not over expensive and monitor your oxygen . Don’t end up like me struggling to walk 20 yards and wheezing all the time. Marylin
Oh @Marylin wow, your oxygen levels were low.
I suddenly realised that I have an oxymeter on my bargain watch.
I am feeling better although you know what it is like when you start having tests they find things I didn’t know I had.
My left lung shows damage apparently from working with various chemicals .for 20 yrs.
Fluid on my lungs and congestion.
Firstly it was thought to be viral, so no antibiotics, but given an inhaler which had no effect.
Since then 2 lots of antibiotics which have helped.
They also found my heart was enlarged and one vessel is struggling.
So loads and loads of tests which are abnormal and I see cardiologist next week.
Advised to keep walking and doing Pilates.
We await. @Marylin I am so sorry to hear that you are struggling to walk 20 yds and wheezing all the time, I really remember last year and it is horrible and really, really scary, I remember how I took breathing and being able to walk for granted.
Be kind to yourself you are such an important part of our forum.
Erica and Marylin Sorry to hear that you both are having breathing difficulties. A little tip that has helped me over the years with my asthma is using a wedge pillow at night to help keep you proped up. Personally I found if I just used pillows I would slip down and that would make breathing worse. Wishing you the best of luck with your cardioligists appointment next week Erica,
Hi @Liz59 thanks for the handy hint, yes, I am a great one for sitting up at night. I also try to make sure I sit and stand up straight as I have a curvature of the spine.
You take care too.
Hi Erica, yes I’ve certainly been through it I’m in my 11th year of having a full liver transplant this blood cancer wasn’t picked up for many years and it was when I fell very sick in March 2010 that they found my liver was completely blocked with blood clots it was a further year until they found out that I had blood cancer and it was this that damaged my liver so yes I’ve had a terrible time but I live to tell the tale and am very lucky to be here
I hope you are keeping well I haven’t commented or posted anything on this site for a very long time it was only the email 2 days ago that I actually logged on to read the things people had posted but I will now take more part from now on I truly believe it’s good to talk to others I’m not one for sharing things and tend to try and deal with things on my own but it’s good to feel part of this x
Oh @Wilma you are definitely one of our forum family.
One great value of our forum is that you do not have to share at all if you do not want to.
You might like to just read posts
I have actually found I can share how it really is for me on here as I cannot with anyone else.
The main thing is that you really look after yourself x
Thanks for this, @Jonpd. I was recently diagnosed with Polycythaemia vera (PV) and it’s reassuring to know you’ve been out there with less information about the disorder for so long whilst living with it. Really sorry to read about it progressing to myelofibrosis. May I ask how you’re doing with it all?
@Duncan It has been a shock. Some of the symptoms have been worrying. It took 4 months for treatment to start. I am on a clinical trial and I seem to be tolerating the medication which is a good thing and the symptoms are slowly easing. I have come to terms with it
Sorry to read about the shock of it all, @Jonpd. Perhaps that’s to be expected with myelofibrosis but anxiety-provoking nonetheless I imagine. Very glad to hear there are treatments available and that they’re tolerable and helping though. Keeping my fingers crossed for you that they keep on working!
Im also on fedratinib plus injection of aranesp every week which i must say is helping and most days i feel good i have been on fedratinib 300mg for 2 years
I have been taking 400mg of Fedratinib. I am just coming to end of my 4th 28 day cycle. I am feeling better, less fatigue, spleen slightly reduced and some weight put back on.