Hello, I am Jak 2 PV recently on Peg 45mcg fortnightly. Feeling okay just itching at times but noticed some of my blood results are below the range: WWC 3.5 , HCT 0.39 , RCC 4.45 and Neutrophils 1.8Heamatologist doesn't seem concern, but wonder if in your opinion I should rich out to other specialist for advise ?
My next appointment with Hem and blood tests are scheduled in May.
It is quite common for the leukocytes to drop along with the other blood cell types when treating with PEG. Providing these numbers do not drop too low, then this is typically tolerable. I also experience mild leukopenia on the interferons, mild lymphopenia and borderline neutropenia. The tolerable range we have defined is LYMPH > 0.50 and NEUT > 1.00. Providing the numbers stay above the cutoff, the immune system can still respond adequately even thought the numbers are a bit low.
HCT = 39% would be considered mild anemia for a male, but that need to be interpreted with a bit of nuance. You also need to consider the HGB and other erythrocyte numbers. Providing you are not experiencing any anemia symptoms, your hematologist may not be parturlay concerned about the current numbers in this range. Suggest you discuss with your MPN care team how low is too low regarding the erythrocytes.
Regarding the itchiness, did it begin before or after the PEG? I never experienced itchiness with the PV until after I started PEG. I do experience broad areas of itching, usually on the back, while on the interferons. I also experience occasional rashes. The itching is well controlled by a daily dose of cetirizine.
Wishing you all the best.
Thank you for the comment. It sincerely made me less worried now. My HGB seems to be in range - 135. And yes same here itching started along with Pegs journey. Didn't notice a difference while I was on weekly or fortnightly dose. However noise in right year occurred for some time before the diagnosis.
So far diet helps me a lot with itching, minimising foods high in histamine seems to be working 🙏
Wishing you well and health.
your counts look ok, perhaps a twinge low, most haems don’t get too excited unless neuts drop below one. You could consider reducing the dose slightly or space out the dosing period a bit. Getting a second opinion from a MPN expert is usually a good idea at some point if you can access a good one, the only downside to doing that is sometimes upsetting your current Haem if ego issues exist
Hi Kamiilos,
I agree with Ainslie, in that if your hematologist is not specifically an MPN specialist, it might be helpful to at least get a consult from one.
When I was diagnosed w/ PV in 5/22, I went to a local hematology MD, who readily admitted her lack of recent experience with anything MPN-related, and specifically to the use of interferons to treat them.
It was mainly the case because compared with the leukemias, which she was well versed in, we MPN-survivors are so much more rare [rarer?] that she hadn't had need to stay current with their treatment.
This is not uncommon to find is the case with many general hematology/oncology MD's everywhere- if they have the self-confidence and good ethics to admit it.
Having that knowledge, I went looking for someone to treat me with more up-to-date knowledge.
This is where I found her:
pvreporter.com/mpn-speciali...
Best always,
PA
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