Hello All,
I was diagnosed with PV 3 weeks ago my hematocrit was 59. After 3 phlebotomies my number is 54. I was expecting more of a drop? Anyone know if this is good and normal and does it just take some time to reduce to normal? Any help would be appreciated. Nervous on what to expect. Thanks
You shouldn’t worry about this « slow » decrease of your hmc. Mine was 66 at first and still over 60 after 3 phelobotomies. It took 9 of them to reach 47. In my opinion, you should be alright after 6 or 7 sessions. I was also given HU from day one.
Thank you so much for this information. Are you doing well and feeling good?
I’m doing fine thanks. No symptoms except a marginal aquagenic pruritis. They didn’t manage to lower my hmc below 47 at first with phlebotomies and HU as I developed a neutropenia after a few weeks. The haem decided to stop phlebotomies at this stage and my hmc reached 48 one week after. I was prescribed Pegasys and the hmc went straight from 48 to 44, then 42 and 39...
Do you have saline replacement after the venesection?
I've had over 60 and 59 of those I have had saline replacement, I find it helps.
I do not have saline replacement after venesection. Would you explain to me what exactly this helps with. This site has been so up beat I'm beginning to feel more at ease. Thanks
OK. My situation is that I feel bad if I don't have saline, my logic is. They remove a pint of blood, the thickness of that blood or hct remains the same, but the volume is less. Getting saline in restores the volume but reduces the thickness.
I was hospitalised some three years ago and I was on about 4 litres of saline IV, my hct was the lowest its ever been.
Works for me.
I agree with Manouche mine were initially as high as 72.9 (2 years ago) and took some time to reduce (it was 43 just before Xmas) I also take HU (2 tabs) daily no real side effects apart from some fatigue.
Hi my lovely
Please don’t be frightened. I am assuming you have Googled your condition and read articles from people who know naff all about PV.
Take the time this weekend and read the posts and articles on this site from people who actually have PV and you will instantly be put at ease. You may also like to read about it on the Cancer research site as well.
You must not Google!!!
People with PV live a relatively normal life and a relatively normal life span. A small percentage may progress to MF but only a small percent.
You may be placed on Hydroxycarbomide, an oral chemotherapy drug. This has worked miracles with me. There are side effects which, in my case, are minimal.
You will probably have fatigue, the biggest symptom of PV but you adjust your lifestyle to help with this.
Don’t try and keep up with people. Explain your condition and people are more than happy to help.
If you feel you cannot talk to your family about this incase you might worry them then we are always here to help.
Don’t be scared my lovely, just live your life like you did before and just consider this a hiccup along the way.
Take care and welcome to the MPN family.
Jill
xx
Thank you Jill. I find each day gets a bit easier. Your advise has given me a smile thanks so much. You stay well and I'm sure i will touch base with you on my progress. XX
Any time my lovely xx
Hi!
Absolutely do not worry.
I’m 65 and was diagnosed with pv 10 years ago with a haematocrit of 74!
I had a venesection every two weeks and was put on hydroxicarbamide ( can’t remember the dose, it was pretty low, and ten years on I’m on 1000mgs a day)
It took 12 months for my haematocrit to gradually lower, but honestly you WILL get there, and you’ll be absolutely totally fine.
Your haematocrit as I’m sure you know should be between around 38 and 45. I feel at my best when it’s between 38 and 42, but am also fine at 45.
Everyone is different.
There are folk out there who have had PV for 30 years, my advice whilst you wait for your counts to drop would be to drink very little or no alcohol at all, drink 2/3 litres still water every 24 hours - and continue ire to do so for the rest of your life, don’t smoke obviously, and walk briskly for at least an hour a day.....
If you would like a buddy to talk to, Mpnvoice.org.uk operate a great buddy system whereby patients with the same probs as you, will “ buddy” you.
Contact Maz via the website.
All the very best, and DON’T worry.
Love
Louise
ps
Remember for every negative post you will read on this website there will be hundreds of PV patents out there who are perfectly fine.
Ps you may, like me, have very little or no fatigue at all.
Ps again! Please do not not keep your condition to yourself. It’s good to share your worries and not try to bottle it up or battle on.
It’s perfectly normal to be frightened! I cried into the washing up for 6 months! Then I told myself I was a feisty old bat and to pull myself together.
Do, though, tell close friends and family, a problem shared is a problem halved. xxx
Diagnosed with PV 11 years ago with a reading of 57, which is quite low compared to others. Had venesections to lower to 45. I now have venesections as and when, usually about 4 a year to keep me below 45. Also on aspirin. 3 monthly haematology appointments. Biggest problem is fatigue.
Don't Google it as a lot of information is out of date and can be scary. Use MPN Voice and this forum. As I was told, if it's managed I'm more likely to die with it than from it. Life expectancy is normal.
Mark thank you much. I will do what I need to do. I am hoping to be controlled with venesection. My number is now 54 after 3 venesection I have know comparison if thats good or not?
You have already heard that your response to the phlebotomies is pretty normal. The numbers are moving in the right direction and in the absence of significant symptoms you have time the get the numbers down to where they need to be, HCT less than 45%. Some people with PV need chemotherapy to help with this while others do not. Some tolerate the chemo (e.g. hydroxyurea) while others do not. Likewise with the phlebotomies.
I have a JAK2+ PV - mutant allele burden=25% - age 64. The third time I was on HU for a year, I turned out to be HU-intolerant. Consultation with a MPN-expert doc lead to a recommendation for a phlebotomy-only treatment regimen. That has been going really well, except for the fact that phlebotomies every three weeks for about 6 months caused me to become so severely iron deficient that they can't even measure my Ferritin levels. I have actually been in erythropenia for about 6 months now - so no phlebotomies until the red blood cells/iron levels come back up on their own. Don't want to take those darned iron pills due to the side effects - YUCK. I would rather be anemic. Do understand that the goal of the phlebotomies is for you to be somewhat iron deficient/decrease erythrocytosis, just not too iron deficient. It is a balancing act.
FYI - I was diagnosed with ET over 30 years ago. It progressed to PV about 6 years ago. Still alive and kicking and have had a rich good life despite the MPN. I am fortunate to have a relatively indolent version of a MPN. There is a lot to be said for maintaining a positive attitude and not letting fear overwhelm you. Despite the challenges you sometimes face, you can still expect to live a long and rich life - managing the PV with grace and success.
All the best.
Hunter thank you so much for your in put and encouraging words it's such a big help to me. I will let you know how I'm doing as I move forward. Best Wishes
Hunter - Apologies if I’ve asked you this before but have you considered Pegasys?
Josup - The risk with too many venesections is that excessive iron deficiency can be harmful. Dr Silver, arguably the World’s no 1 Interferon expert (certainly no 1 fan) estimates that venesections should be less than c. 6 per annum. Dr Silver believes we should start INF/Pegasys as early as possible post dx. The earlier we start, the lower the dosage we need and the greatest the chance of INF impacting disease progression.
Many U.K. Hems are much more cynical re the disease modifying benefits of Pegasys, claiming insufficient clinical data but for me the kickers are:
1. Dr Silver has been prescribing INFs for over 20 years, hence has more experience
2. Dr Silver prescribes INF as his front line treatment option, many U.K. Hems only offer INFs as second line. Hence disease may be more aggressive/advanced by this time.
I posted a research paper last month comparing INF v HU v Venesection, this indicated that INFs best for delaying progression (to MF) and Venesections worse.
However my quest for 2020 is to try to understand why overall life expectancy was not that different between the three groups, especially since the INF cohort appeared the youngest.
INFs appear to have a significant advantage in deferring onset of MF but then is the resulting MF phase much more aggressive? I’ll report back!
Bottom line is that hopefully irrelevant for most of us, within 5 years I’d expect there to be exciting new treatment options. Lots in the pipeline.
Best Paul
Yes I have considered peg-interferon. The MPN Specialist I see (Dr. Jerry Spivak) also prefers peg-interferon when the patient needs chemotherapy. in my case, he recommended a phlebotomy-only treatment regimen. So far, this seems to be working. Unfortunately, the on-going hematologist I see had me on a every three weeks schedule. this turned out to be too much. I was so iron-deficient that they could not even measure my ferritin levels.
My situation is more complex due to co-occurring issues. At that time I was diagnosed with a hemorrhagic brain tumor. I was preparing for the surgery when the iron deficiency was detected. I went on a few weeks of an iron supplement to get my levels up a bit, but those iron pills have rather unpleasant side effects so I discontinued after the brain surgery (which was successful).
At this point (7 months out) my iron levels are still low. I am also in erythropenia - so no phlebotomies for this whole period of time. The only issue the anemia is causing is that I get fatigued more easily. That is preferable to what the iron supplements were doing (Note I used to be on hydroxyurea which apparently compromised my intestinal endothelium). My iron levels and erythrocytes are gradually creeping back up with nothing more than a healthy iron-rich diet. going forward, I will resume phlebotomies when my HG gets over 14 / HCT nears 45%. We will be a bit more careful with the phlebotomies in the future and keep a closer eye on all of my levels.
Going back to your original question, I would certainly consider peg-interferon as a front-line treatment for PV. I think its risk-benefit profile is superior to hydroxyurea for most people (Note - I am HU-intolerant). Jakafi is also worth consideration. I find the idea of molecular remission to be particularly intriguing and can't help but to think that it would be a good thing - even if it is only temporary.
All the best.
Paul thank you for this information. I am going to discuss with my hemo this week. seems like you have been down the road with this I can't thank you enough!
Thank you Paul for this information. I am seeing my Hemo this week my guess isle will be discussing the options of medication. I will bring your information to him. I will let you know whats my next step. Regards
Thank Paul seeing my hemo this week and will bring this information to you. I will let you know my next step
It does take a good few venesections to get your HCT level down it's normal .
Thank you so much tracey13 all info is welcome. Best to you
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