Dosage change

[kamiilos]

Hi, my most recent CBC showed Neutrophils slightly below at 1.8 and also WCC 3.8. Due to Peg shortage my haem recommended to change intervals from fortnight to every 3 weeks same dosage 45mcg.

I also notice my Hematocrit is slightly creeping up. Since I've started my Peg journey hct was at 0.39 18 months ago. Then next CBC 0.41 , 0.42 , 0.45 and after well hydration right before blood test 0.44

Might be insignificant but steady change makes me wonder.

I am having appointment next week with an MPN specialist in my area for second opinion.

Haem doesn't seem concern and I can see her main focus is platelet count.

Wishing you all a Wonderful Easter.

[hunter5582]

The main focus of PV treatment is HCT since erythrocytosis is the primary risk factor where there is a linear increase in thrombosis risk. The goal for a male is HCT < 45%. My MPN care team set the target HCT between 40%-45%. HCT < 40% is anemia for a male. Note that being just slightly under is likely tolerable.

While thrombocytosis can be a concern with PV, there is not the same linear relationship between platelet levels and thrombosis risk that we experience with erythrocytosis. Depending on your MPN profile and history of thrombosis, an individualized goal for PLT is the best approach.

Pegasys will depress all blood cell production, including the leukocytes. It is important to keep the key WBCs in an acceptable range. The targets my MPN care team set are LYMPH > 0.50 and NEUT > 1.00. While these numbers are below the reference range, they are still high enough that my body can respond to an infection.

Suggest that you discuss target ranges for all blood cell numbers with the MPN Specialist. Managing PV is a balancing act. It is very important to be clear about what the acceptable ranges for each parameter are and why that target is appropriate in your specific case. The MPN Specialist can also clarify the rationale for HCT and PLT targets and what is indicated in your specific case.

Please let us know what you learn and how your get on.

[kamiilos in reply to hunter5582]

Thank you Hunter for your much thorough comment on this. Yes I am planning to set a number of questions prior appointment regarding my management. Wishing you well.

[EPguy]

Is your Haem focused on PLT because yours have been high?

I see in a prior post you got VAF from BMB, and the next from blood. While some literature finds these to be comparable it may not be. Mine was 5 points apart (19 vs 14 via blood) As I understand it marrow can be sensitive to where it was extracted as it's not homogeneous. One report I recall referred to"hot spots" in marrow, I think this related to fibrosity also.

Has your Dr suggested another VAF reading? Not likely anything actionable but it might track your changing HCT response.

[kamiilos in reply to EPguy]

I'm not sure why Haem is focusing on platelets. At least that's what she talks about during appointments.My platelets were high at 600 along with other counts like HCT 0.54 , HB 18.5 before PV and Cerebral Venous Sinus Thrombosis diagnosis. I refused treatment for a while due to personal believes but then I was firstly prescribed HU that I stopped after 1st 500mg tablet due to severe side effects that put me for 3 days in bed. Have had much better luck on Peg as after 1st injection all my counts are in good range.

The Haematologist didn't recommend anything, doesn't seem concern. She is a lovely lady that I feel is in my corner but perhaps some general haematologists may lack MPN knowledge. I luckily have an MPN specialist in Sydney that I arrange a visit for next week as I can see a moving trend in my CBC. Another VAF reading could be a great approach. I was thinking of phlebotomy or dose increase. My next appointment with Haem is in 10 weeks that I will enquire about this.

Thank you for the suggestion. I find it very helpfull.

Wishing you strength and success in your journey.

[EPguy in reply to kamiilos]

My guess is your Dr's limited MPN exposure is more ET, where PLT is the key focus, than PV where it's HCT and related counts.

On VAF, in many cases the response to treatment tracks blood count response and vice versa. Put another way, pts with CHR (full blood response) are more likely to see reductions in VAF. So you could track this to add to the overall info. In studies and member reports here many pts see VAF continue down or stabilize on IFN, while some have an increase after a certain time period.

[ainslie]

it’s strange your Haem is focusing on platelets, yours at 600 are not that much out of range, most expert haems say no need to treat platelets unless over a million UNLESS there are platelet related other health risks or symptoms.

It’s not uncommon for interferons to be a bit inclined to overshoot on lowering whites while being sometimes a bit slow in controlling the red.

As Hunter explained with PV the focus should be on keeping the Hct under 45 for males, if needed you should definitely venisect to achieve and maintain that while tweaking the meds. Usually experts will say sort reds and symptoms first, then whites, then platelets if necessary. If I understand your situation correctly then it’s unusual/ a bit concerning your Haem is focusing on platelets.

[kamiilos in reply to ainslie]

Yes I learnt the primary focus is HCT. And makes me wonder why I had no venesection done while HCT was above 0.50 before Peg treatment. Seems like some Haems have just different approach. Thanks Ainslie, much appreciate all the extra knowledge I gain within here. It will definitely contribute to my upcoming appointments.

[EPguy in reply to kamiilos]

There should be no different approaches on the HCT <45 for male. It's based on a large study discussed here that has been standard of care:

ashpublications.org/thehema...

where the cardio vascular or death risk was ~3-4 times higher in the high HCT goup (avg 47.5) vs low HCT (acg 44.4).

But there is a companion finding I hadn't noticed before, "leukocyte count was significantly higher in the high-hematocrit group". High Leukocyte is a known PV risk, it's not clear from this whether a low leukocyte/high HCT pt would have that same elevated risk, and the text agrees with that uncertainty (as of 2012). Your WCC is low so white count risk should be less a factor.

[kamiilos in reply to EPguy]

Interesting to learn average range for HCT is 0.40 - 0.50 but for us (MPN's) no more than 0.45

I take nothing nothing for granted and will monitor closely my HCT. I also usually drink lots of water before test but next time I just come as normal to have true results.

Thanks EPguy.