venesections over the long term

[Paul1214]

I was diagnosed with PV in January 21 when I was being treated for a malignant melanoma and the surgeon wanted to do a lymph node biopsy.

my red blood cell count at that time was around 0.8.

The cancer was removed and I have had a large number of venesections since then. Originally two per week now much less frequent.

my red blood cell count is now down to 0.44

I have in the past tried hydroxycarbamide but had to stop when my platelet level dropped significantly

has anyone else been in such a situation and what have the doctors recommended for the long term?

[gvibes]

Hi Paul, I have PV, diagnosed about 2 years ago during routine blood test. I had a series of venesections at diagnoses and a few since. I am currently being treated with pegasys and after about a year, I am in CHR as they say and haven't had a venesection in more than 10 months. By the way like you, a year ago I had a melanoma and subsequent surgery. I am 69.

So I know there are people who can manage PV with venesections alone, but I believe it is difficult. First, you get iron deficient which may cause additional symptoms for some - maybe worse than PV symptoms. Some of the studies show that long term managment with venesections is the least desirable option with lower long term survival than hydroyurea or interferons. Personnally the most painful occurence since diagnosis during treatment for me was one of the venesections that apparently hit a nerve. It really hurt for more than a week.

I recommend you talk to your doctors about trying one of the interferons, pegasys or besremi. For most people, side effects are tolerable and diminish over time. There is evidence from Silvers group and others that interferon is disease modifying - reducing allele burden. Alot of the bad press about side effects is from people using higher doses than PV treatment requires.

I have one of the Exon 12 mutations and have very high red cells and hematocrit but normal low whites and platelets. It is something that is watched, but the pegasys have brought reds to hematocrit<40% while keeping whites and platelets in range or close to range.

Anyway, good luck with all this

Steve

[sbs_patient]

I was diagnosed with PV back in 2015. Initial treatment was just venesection as needed, then with hydroxycarbamide. Still, venesection every one or two months was the pattern. I saw a MPN specialist back in the summer, who told me that I was having too many venesections and recommended that I go on Jakafi. It's taken a few months to find the proper dose for me, but all seems to be going well now.

[Paul1214 in reply to sbs_patient]

thank you. I am talking to a MPN specialist doctor next week

[hunter5582]

While venesection is the most common initial response to treating PV, in the long-term it can cause its own problems. The purpose of venesections is to remove iron from the body. Your body cannot make red blood cells without the iron. Inducing chronic iron deficiency without anemia (they are not the same thing) is the purpose of venesections. Unfortunately, chronic iron deficiency can have side effects that can be just as bad or worse than the PV symptoms.

In my case, I experienced increased fatigue, loss of concentration, reactive thrombocytosis (PLT + 200K), and alopecia. I am hydroxy-intolerant and refractory to it. Fortunately, I have responded very well to the interferons, Pegasys/Besremi. The IFNs have done a much better job controlling the erythrocytosis and thrombocytosis with far fewer side effects for me.

Many of the leading MPN Specialists are coming to favor the earlier use of the IFNs to treat PV. There is evidence that progression-free survival is enhanced by the IFNs. It is possible for many to achieve a complete hematologic response with the IFNs, without needing to rely on venesections.

We are all different in how we respond to these medications. Not everyone can tolerate or benefit from the IFNs. Fortunately, there are other options like Jakavi and more in development. Suggest you speak to your care team about your long-term goals and care plan.

All the best.

[Paul1214 in reply to hunter5582]

thank you for the detailed response it is very much appreciated

[Boobles]

Hi there Paul the only thing I can say about hydroxy I was on it for 5yrs at 4 tabs aday unfortunately it damaged my body my wbc and rbc and crp level s worked for 3 months then stopped working and also gave me gout which has been hell !!!!! but there again everybody is different for me personally I wouldn't ever take it again at the moment I've gone from ET too now having ET and Pv juggling different meds perhaps your consultant may be the best person as we are all different I hope you find your answers good luck jadeanna

[Paul1214 in reply to Boobles]

thank you for your reply

[PhysAssist]

Hi Paul,

I agree wholeheartedly with pretty much everyone has said,..

But honestly, especially what Hunter said:

The various IFN's are the only treatments which have been shown to "change the natural history" of the disease.

That means not only to prevent thrombosis, but also to prevent transformation to Post-PV MF [which is otherwise quite common,] and also prevent transformation to AML [leukemia]- which although it is much less common, does/can occur otherwise.

Best,

PA