I'm Having Venesections For PV,Instead Of Chemo Tablets! Am I Doing The Right Thing?

[Malaga88]

[Aime]

Hi Malaga88, I have PV and on venesection only at the moment. I was told if my platelets keep messing about I would have to go on to chemo tablets. I think everyone of us are individuals and our treatment must be individual too. It depends on the advice you have been given by the medics. If you contact Maz via the MPD website or ask her on this forum for advice from Prof Harrison, perhaps that would help you. Sorry I am not much help but hope you find out the best answer for you. Best wishes, regards Aime

[Malaga88 in reply to Aime]

Thank You Aime.

[Malaga88]

Many Thanks Aimee

[jane13]

it's a tricky balance i think - i have chemo and venesections - be interested to hear if you get any expert guidance on this.

As I understand it the chemo slows your bone marrow down and reduces risk of scarring and myelofibrosis so if your bone marrow really revs up and you start needing more and more venesections it may be worth taking the chemo. And, I think, venesection may not control white blood cells and a high count here can carry a thrombosis risk. I also have night sweats if my bone marrow is not supressed with the chemo and that makes me feel crap. but of course chemo is bad for you in amost every other way! Personally, if I was not having venesections too often and that kept all my counts OK I woud stick with it for now and be thankful!

[Malaga88 in reply to jane13]

Thanks I'm Going To Keep Having Venesections!

[skodaguy]

I was diagnosed with PV in 1994 and only had venesection combined with aspirin and allopurinol till got other things from 2008 onwards. Plats never got above 600 but WCC around 40. I found i could time venesection to fit in with my exercise plans and if planning more than usual would let Hb rise, bit like blood boosting for athletes! Chemo has so many potential side effects that would make me avoid it if I could. At the end of the day you have to live with your own decisions though.

[Malaga88 in reply to skodaguy]

Thanks For Your Reply,Im Going To Carry On With Venesection!

[linds]

Malaga 88 Hello!

I am a real greenhorn when it comes to understanding the bloods but this is what I was told very recently. As a PRV member my treatment is venesection, aspirin and allopurinol (for gout prevention). Since January 2012 I have had regular venesections - settling down to every 8 wks except last month was told red cells had dropped of own accord so did not need it. Yipee! My haem said I was not suitable candidate for hydrox as my problem is solely too many red cells and the hydrox does not work that way. I guess if I had problems with all the relevant blood bits it will be different. Personally, if I am coping with venesectioning then more than pleased to delay needing any chemo.

As has been said, we are all different.

[Hidden in reply to linds]

I have only red blood cell escalation but am on hydroxycarbamide.

[Malaga88 in reply to linds]

Hi Linds,Yes I Take Aspirin Daily,Going To Start Taking It At Night Before Bedtime As According To Statistics Most Heart Attacks Occur At Approx.4 a.m. As Well As PV I Have Diabetes 2,So Take Other Pills Too.Went For a Venesection Yesterday and The Same As You The Blood Test I Had 1st Showed a Low Count So No Venesection! Delighted! Got a New Consultant I Have To See For The 1st Time Feb.6th!Fingers xxd.

[linds in reply to Malaga88]

Hello Malaga 88. I am so thrilled for you, it is really exciting when things seem to be going in a good direction. I was so shocked to be told that I did not need the venesection - I wondered if they had made a mistake. I am always around 46/7 haematocrit after 8 weeks and here I was at 41. (Originally when diagnosed this was 59 ) The nurse also mentioned that my haemoglobin (excuse spelling if that's rubbish) was low and she made it sound like a bit of a problem. With there being no person I could talk to at the hospital I rushed round to my surgery and my dr was able to see me. He looked at me over his glasses and said 'This is exactly what we have all been working towards. Everything is going well' I felt such an idiot for not knowing more about blood I can tell you. Good luck with your new consultant.

[Malaga1]

I Turned Down Chemo Tablets Because Of So Many Side Effects! I Have Been Having Venesections For 2 Years Now ! Get Real Tired Beforehand,Afterwards Feel Pretty Good And Not So Tired! Long May This Continue!