Yes, or groin! Have only been able to get 250ml out of me recently instead of me generously supplying 500ml as usual. Opted to continue with the Venuses (call them this cos I love 'em......not!) & daily Clopidogrel (asthmatic so can't do the aspirin bit) instead of going on to Hydroxy. Got scared when he labelled it oral chemo but it seems some of you haven't had any adverse reactions only felt benefits? Would welcome you sharing your experiences so I can make an informed choice. Thanks.
Venesections via alternative entry sites? Veins... - MPN Voice
Venesections via alternative entry sites? Veins in my arms are hardening apparently so going in thru my feet has been bandied about. Aargh!
hi polly, firstly hydrox is oral chemo- used to affect bone marrow especially in the pelvis and supress red blood cell production- and you can have a reaction to it, as to anything- i did and so am relying on venasection. the veins elsewhere are ok, but smaller and fragile but i would say no to the groin as a routine method- that is too dangerous. cheers karteeka
Hi Polly
My veins also got terrible and I stopped venesections years ago and went onto hydrox, no probs with it really, and the venesections simply weren't an option, just getting blood for a test is a nightmare these days! good luck whatever you decide, fee
Hi Polly, Have never had venesections , went straight on to hydroxyurea and having no problems with it. Started with 2 capsule per day and now down to 1 per day (500mg). Been on it approx 4 months. Good luck whatever you decide, cheers
Hi PollyPV
I have been on venesections and Clopidogrel for the last 8 years. Venesections don't really help lower the platelets. I started on hydroxy 6 weeks ago, I must say, with great trepidation as I was so worried about the side effects. I honestly have had no side effects! I take the lowest dose 500 mg per day. After 1 month my platelets have reduced by 200 points and my spleen has reduced in size by 4 cms. My haem says once my platelets are around the 300 mark I can reduce my dose. I feel so much happier and relaxed now I am taking it. I know hydroxy doesn't suit everyone, but if you don't try it you will never know. You can always stop if it doesn't suit you.
Good luck
Judy
If your veins in the crook of the elbow have collapsed over time and you will be having repeated indefinite phlebotomies then going to a port may be in order. For future phlebotomies insist on a 22 ga intracath and a vacuum bottle, our veins can not hold up repeatedly to the typical 15 ga bag blood donation collection system. Most patients on hydroxyurea still require periodic phlebotomies as the HU is not as strongly specific on the RBCs as it is with platelets and WBCs.
Had ET for 19+ years and now progressed to MF. I was on Hu for most of that time in increasing doses but am now fortunate enough to have obtained ruxolitinib. The main problem with HU for me was the lowering of white cells counts into significant neutropenia. My veins have always been a "challenge" and it came to the crunch when I needed emergency transfusion after internal bleeding earlier this year. I had to have a central line for that but I now have a portacath and after initial teething troubles it has been a godsend for me. You'd think that MPNs would be a bit more selective and only chose people with good access to their blood wouldn't, you!!!!!!! Good luck with your choices.
Definitely try hydroxy. I know it's not a nice thought to be on any medication, but you just have to get over that. I went on 1 x 500mg in the Spring. I had a sore on my tongue but it went away. I assume it was connected. I'm just glad the medication is there and I feel fine.
Chris
Hi, my veins are getting worse too so I sympathise. I am sure the nurses at my GP Practice fight to avoid me. The back of the hand was okay the last time for a blood test, arms useless. We will see what happens with the next venesection as the nurse had a look at my legs the last time to see if there were any good veins there!! Kind regards Aime
Thanks everyone who submitted their thoughts re: alternative sites for blood letting & hydroxycarbamide. Lots to reflect upon. Having a good spell at the moment with lots of energy so feeling good! So grateful for coming across this site & the support everyone so freely gives.
Hi there
I have been taking the tables for over a year. When I started I didn't understand anything but the Dr explained that the chemotherapy tablets had been proven to be a very good option as there was less chance of developing clotting problems. I trusted the Dr and I have had only minor problems. It beets blood cloths or constant blood taking.
Talking to other Dr I am of the opinion that Dr's have varying opinions of what's best for patients.
I decided that my Dr (specialist) keeps me informed he has proven to be a good expert in his field. So I go along with his advice!
My advice is take caution with inexperienced Dr as they are on a learning curve and have not had a lot of experience.
If you have a good specialist that you can trust stay with him/here and put up with the wuppseys caused by inexperienced Dr. These Dr are kept a close eye on by there academic pears. But making bad or inappropriate comments is part of their learning curve. However if you are not happy with your specialist or you have no faith in him/here then seek other options.
All the best
Stan