Hi All!
Happy New Year! I hope things are going well for you. I am having my second phlebotomy tomorrow. The doctor, not an MPN specialist but a regular heme/onc doc, has order 1000ml withdrawal. My first one was 500ml. I am curious if there is a set protocol?
Thank you!
Kim
Hi,That seems a large amount in one phlebotomy.
500ml is the usual amount.
However maybe there is a reason for his decision,depending on your haematocrit levels etc.
Try to drink plenty of water,beforehand,
Perhaps you could obtain a second opinion from an MPN specialist in your area,going forward..
All the best,
Bobbie
I have had 30+ venisections. We normally negotiate how much they are going to take before commencing. The most I have had taken is 650ml - no ill effects, the maximum on the old equipment, they have now been reduced to take just over 500ml.If you feel uncomfortable I am sure they will do a lesser amount - it is your blood!
500ml reduces my hematocrit by 2.0 points after a day or so.
Hope it goes well for you.
B.
Hi Wewo01, I m in the UK. I’ve had 2 venesections and have a third in 9 days. With the first 2 they were taken 2 weeks apart with the aim of 500ml. Didn’t make that, 450ml and 475ml. I am now having 2 more 8 weeks apart with a max of 500ml each time. I was told they don’t take more than 500ml per 2 week period.
Thank you, Vtr1000! I appreciate your reply.
They usually take about 500ml and if necessary take another 500ml about a week to 2 weeks later. 1,000ml in one seems rather a lot. I always drink a pint of water/Ribena before venesection and then a can of "full fat" coke and either a toasted teacake in hospital cafe or Mars bar. Never had a problem in 13 years.
The phlebotomy was unsuccessful. They could not get in a vein well enough and the flow was so slow it clotted. My local hem/onc doc upped the HU to 1500 a day and wants to do labs in 2 weeks to see if my HCT goes down. If not, then they will do a picc line which can stay in place fir a few months. She also said we may switch to rux.Since I just had SCC removed both HU and Rux make me nervous. I have had more actinic keratosis growths come up while on HU.
Hi Wewo01. As others have said it is usual to take a smaller amount more often. When I was first diagnosed I did 450ml a week venesections for 4 weeks. That dropped the Hct from 59 to 44 - usually about 3 points for every venesection. I agree with you the gap between the first and second draw was too long. (Maybe Xmas break influenced that). Your numbers are high and your description of a slow draw with clotting is evidence of that. Hence they may now be concerned and looking for other solutions.
I think you need the advice of an MPN specialist ASAP. I trust that the regular haem knows about your SCC and other skin issues when diagnosing the high HU dose? My understanding is that the increased HU will be a slower process than doing venesections. When I was diagnosed with Hct 59 I was sent immediately to Emergency department for venesection. The risk of blood clots increases exponentially above Hct 45. If I were you I'd be following up ASAP. Drink lots and lots of water every day in the meantime till they get it sorted. Keep us updated as you'll get good advice about experiences here. All the best.
Thank you so much for the reply, information and your concern. I do have a specialist about 8 hours away. I am on my 3rd local Heme/onc dr. It had been an odyssey!
Hi Wewo01. 8hours away for the specialist is challenging! I noticed above that you had messaged the specialist '2 days ago', so at least you have that option. I do hope they respond/have responded. Good that you are being proactive re your local support doc. As we often see on this forum, we've all needed to make a hard call at some stage and look after ourselves. All the best.
500ml is the standard. Not sure why you would get a double. I am assuming that they will be giving you IV fluid to replace the plasma loss if you draw that much. I believe the norm for a more rapid response in HCT is to do the phlebotomies more often not to take more. I would suggest contacting a MPN Specialist for guidance before proceeding.
Hi Hunter! I am beginning to think that HU is flubbing up my veins. I have always been a challenge to stick but since I have been on HU, a year and 2 months, I am nearly impossible to stick! This really worries me! What if I have a medical emergency? Another noticeable issue is I have diverticulosis and my HU was upped to 1000mg (again) Dec 10. Within days I noticed some diverticular discomfort. I ignored it but now on 1500mg, day 4, it’s much worse and I am afraid it will push me over the edge into a full blown diverticulitis attack. I am not sure I can go 2 weeks like this for my HCT to be reevaluated. Additionally, my blood is just too thick! When the phlebotomy needle was in a vein, but not far, the blood flow clotted off immediately. I feel like I should pursue the PICC line, now, and back down the HU.
I am going to relate that to my docs.
Take care!
GI adverse effects are well known with HU. "Hydroxyurea has correlations with gastric distress, gastritis, mucositis, and oral mucosa ulcer." ncbi.nlm.nih.gov/books/NBK5...
Diverticulitis may be specifically associated with HU. "Diverticulitis is found among people who take Hydroxyurea, especially for people who are female, 60+ old, have been taking the drug for 1 - 6 months."
ehealthme.com/ds/hydroxyure...
HU can affect your veins, causing vasculitic ulcers. This is one of the more serious AEs with HU, but does not sound like what you are describing. online.epocrates.com/drugs/...
Hyperviscosity can certainly interfere with phlebotomy. The thicker the blood is the more difficult it is to draw. There can also be issues with scarring due to repeated phlebotomy that can cause issues with getting a good line in.
I would absolutely follow up with a MPN Specialist ASAP. It may be that you simply cannot tolerate HU at a therapeutic level. While some can tolerate HU, not all can. You already know that I am one of those who cannot tolerate HU. I am doing way better on PEG-IFN. I cannot venture what is the best choice for you, but it may be time to consider other options.
All the best my friend.
I've had over 60 venese never a 1000ml, but always 500ml, but they have always replaced the blood with saline.I'm sorry your veins were a problem, I'm lucky mins are really good, but, showing a lot of scary tissue .
Let's hope they get you sorted. I've not had a venesection in over 14 months, plus I have been off hydroxycarbamide for over 3 months
Feeling better after 4 weeks phlebotomy.
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