FALLING BLOOD COUNTS

[Trinigirl]

Hi. I am wondering if anyone is experiencing falling blood counts as I am. I do blood work every 2 months and I am experiencing low counts on my WBC and RBC. My hematologist said it is the HU but he will wait to see if it falls below 3 before he makes an adjustment to the medication. Is anyone experiencing this? if so, what did your hematologist do? I asked to adjust the meds now to see if there will be any improvement but he insisted I wait on his instructions. Any suggestions?

[neela2020]

Yes in my last post ( MPN PV @ Hydra) I asked exactly same thing. Your doctor may suggest to stop medication for a while or reduce the dose. If the counts are not rising after stopping or reducing the dose , then it may need further investigation. Hope it helps !

[Trinigirl in reply to neela2020]

Thanks neela2020 for the response. All the best.

[hunter5582]

HU reduces all hematopoiesis. It is not selective and interferes with DNA activity in both mutated and normal hemopoietic stem cells (HSC). It is expected that all of your numbers may decline since all HSC activity is impeded by the cytotoxic nature of HU.

Some people are able to tolerate HU and benefit from it. Others, myself included, are not. The good news is that there are other options in dose titration does not provide the the treatment outcome you are seeking, Note that MPN treatment is often a balancing act between reaching therapeutic targets and managing the risks and adverse effects of treatment. The right balance if different for each of us.

Hopefully you have already found a MPN Specialist with whom to consult rather than a regular hematologist. If not, here is a list.

mpnforum.com/list-hem./ worldwide

pvreporter.com/mpn-speciali... USA only

While sorting things out, it can be helpful to learn more about treatment goals and options. Here are a few resources you may find helpful.

silvermpncenter.weill.corne...

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

All the best.

[Trinigirl in reply to hunter5582]

Hi hunter5582. Thanks for that informative response. I just made an appointment to see Dr Fu in Jan 2022. I am in Trinidad but will fly to the US. I really appreciate this help. I ferl confident she can resolve most of my issues.

[lakeview65]

I started Hydroxyurea a month ago. My platelets are dropping nicely. 697 now 451, but my WBCs are also dropping. Before starting 7.85, now 3.85. My MPN Specialist said that if my WBC goes below 3.5 then we will change how many Hydroxyurea I take each week. I assume this will happen. We all need a good WBC count during these times.

[Trinigirl in reply to lakeview65]

Hi lakeview65. Thanks for the response. How do you take the HU? To me your WBC is dropping fast. You might want to address this now. I havr been on HU for four years now. I take two capsules daily. Let me know what your doctor did. Take care.

[lakeview65]

I take 2 - 500 mg pills a day, I split the dose, basically 12 hours apart. I drink lots of water each day. I was just at Moffit Cancer Center last week, I have another appointment in 3 weeks. If I develop symptoms I will call them. I would think if they were overly concerned they would have made my appointment sooner or changed my dosage. I have to have trust in my Dr. and the belief he has my best interest at heart. I am an informed patient and do question everything.I will let you know what happens. Crazy ride this MPN diagnosis.

[Trinigirl in reply to lakeview65]

Hi Lakeview65. Sorry for tge delayed response. This MPN is really confusing and complicated. I guess we have to follow the medical advice which is best forr us. Good luck and hope you continue to improve with you.

[lakeview65 in reply to Trinigirl]

Best of luck to you, it has been a learning experience. My platelets are 391 as of yesterday and my WBC went up a smidge to 4. Fighting dizziness when I play tennis in the humidity. Trying to live my normal life isn’t the easiest right now.

[Trinigirl in reply to lakeview65]

Take care and all the best. Be safe.

[Hydrox]

Hi Trinigirl, I too am experiencing a low wcc for the past 12 months or so, I have had my hydroxy lowered to 1 a day and my count is now 3.8, it was in the lower 3s but risen slightly. My platelets have also risen, but not significantly. My specialist nurse is taking bloods every 3 months to keep a check on it. My worry has been Covid as I feel more vulnerable with the low wcc and therefore keep myself isolated still as much as possible. I tried to get my Covid jabs earlier but was refused and was told I had had to wait my turn by my gp who cannot see any more risk for me than anyone else. I am ET jak2+, 73 years and on hydroxy for 9 years. Worrying times. Hope you get sorted quicker than me.

[Trinigirl in reply to Hydrox]

Hi Hydrax. Thanks for the response. Sorry for the delay. I am hoping to get some help when I see the specialist in a couple months. I am so concern about my red and white falling counts snd eith any adjustments, my fear of the returning symptoms. Praying for a favourable outcome. All the best to you. I am in the USA at this time finalising my doctor's visit.

[Wyebird]

Yes, Hu reduces the production of all blood products. Your meds will be adjusted/ the best they can, even changed. It’s good to keep an eye on your counts. I keep a copy of all my tests.

[Trinigirl in reply to Wyebird]

Hi Wyebird. Thank you for your response. I am feverishly working on this problem to avoid further complications.

[Meatloaf9]

I think the trend over time may be the most important. If you have been trending down over time you probably need to know if it is due to the medication or some other cause. Your mpn Dr should be able to help with this. I have only been taking HU for 3.5 months and my counts are continuing to fall so I am reducing my HU every 2-3 weeks based on the cbc results. If you have been taking the same dose for 4 years with falling counts I would want it looked into. Good luck to you, let us know what happens.

[Trinigirl in reply to Meatloaf9]

Thanks Meatloaf9. I have asked my Dr. to look into this a long time now. So I am a bit upset. The problem in my country is that we do not have many hematologists so I am stuck with him. I am due to see a MPN specialist in the US in January 2022.

[Meatloaf9 in reply to Trinigirl]

Welcome to the US and please see a top mpn specialist since you are making the journey.Best to you.

[kiwitraveller]

Hi Whenever the Haem increases my Hydroxy even by one tablet a week my Red and White blood counts fall. Mine have been hovering above 3 for the past 6 months but my platelets had shot up to 860 so we increased the Hu dose by one tablet a week. Platelets are slowly going down and my WBC has been between 3.0 and 3.4 for the last 6 months. However I feel fine so will hang out for a few more weeks to get the platelets down then reduce the Hu again. It is a constant juggling match to try and keep them under control.

[Trinigirl in reply to kiwitraveller]

Hi kiwitraveller. I take 2 HU every day. I am just scared that my symptoms might return when the meds are adjusted. I am between a rock and a hard place. Thanks for your response. Be safe.

[Meatloaf9 in reply to Trinigirl]

Hi again,I started out on 2 per day about 3.5 months ago. Have been reducing the dose as my rbc[s and Hct and Hgb have been falling for the last 6 weeks. Last Hct was 41.7. I am now reducing my HU to 1 per day for 6 days and then 2 on the 7 th day, so 8 per week.

Will recheck cbc after 3 weeks on this dose and see what happens.

Please take the advice of your hematologist on any dose adjustments.

Best of luck to you.

[Trinigirl in reply to Meatloaf9]

Thanks for the update. Hoping for some help soon.