Re: raised White cell count

[Family-man]

Hi guys. I’m 45 years old and I’ve been diagnosed with ET for more than a year now. JAK 2 positive V617F. No marrow done since my Haematologist is very certain about the diagnosis. PBF has always been consistent with stable ET. Most recent platelet count was 625. Hemoglobin 15.6. I’m currently taking a baby aspirin everyday. For the past one year, my WCC has been mildly elevated and fluctuating, the most recent reading was 14. I suffer from intermittent dizziness and tingling of hands and feet. What are your thoughts about starting cytoreductive therapy?

[mother2britton]

Family-man, I'm 49 with ET CALR. My hemoglobin is 16.3 and WCC 9.3 my platelets are close to 900 and climbing. I was told by my specialist that with ET it can be normal to see slight increases in WCC . I have minor symptoms of tinnitus and tingling in the tips of my fingers. lots of hydration, baby aspirin and exercise seem to keep them at bay for the time being. I think cytoreduction therapy is a decision you should make between you and your hematologist. For me and my hematologist I have decided to try and control symptoms for as long as possible with diet, exercise, aspirin, ( sometimes 2x daily) and lots of water. We both agree the medications used for cytoreduction are not benign and have the potential for short or long term side effects. For me the juice was not worth the squeeze yet , my plan is if the symptoms change my quality of life I will then seek cytoreduction. Hope this helps.

[hunter5582]

It sounds like you are having some microvascular symptoms which are well known issues with MPNs. The KISS explanation is that the blood cells are interacting with the vascular endothelium differently, being "extra-sticky." With ET, it is more about altering how the blood cells behave than the absolute number when this is an issue. Some people find significant relief simply by taking two low dose aspirin/day. There are other antiplatelet medications available too. It would be a good idea to review the issues you are having with a MPN Specialist. They are more familiar with the different ways MPNs manifest and how to treat them. mpnforum.com/list-hem./

Regarding cytoreduction, the answer is - it depends. Do the benefits of cytoreduction outweigh the intrinsic risks? This depends on your treatment goals, risk tolerance, and treatment preferences. If the answer is yes to cytoreduction based on your MPN profile, then the question is - which agent to use. Hydroxycarbamide and PEGylated Interferon are the two first-line treatment options for ET. Anagrelide and Jakavi (ruxolitinib) are second-line treatment options.

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

legeforeningen.no/contentas...

Here is a bit of info on the two first-line options.

drugs.com/monograph/hydroxy...

drugs.com/pro/pegasys.html

Hope you are able to sort things out and find relief soon.

[Pte82]

Family-man, Hunter has brought out excellent points about cytoreduction therapy as this link underscores for patients without high risk features. For your dizziness and tingling you may need vitamin B1 (thiamine) The fat soluble forms like TTFD or Sulbutiamine cross the blood brain barrier at higher levels than water soluble forms. Magnesium is needed to activate thiamine and also prevents platelets from sticking together. Activated thiamine is needed to activate vitamin B6. If you take too much B6 is can cause tingling in hands and feet. Look further into the B vitamins to see how they work better together. Always consult your health care professional before using any supplement.

practiceupdate.com/content/...

[Meatloaf9]

Hello, First I would recommend finding a MPN specialist and if you trust them then follow their advice. Second I would consider having a BMB or at least a EPO blood test if you have not had one. My blood counts were similar to yours 4 years ago and I was told I had ET, even after a BMB which was read by 2 different pathologists. 3 years later my Hct suddenly jumped to 55 (this is when I started getting tingling in hands and numb feet) and long story short I was told I really had PV, probably from the beginning. I had a very low EPO level initially which my docs did not see because the result came back several days after my appointment. They both later admitted this to me. It may not have changed my treatment, I was on aspirin only for 3+ years and felt very well. My AB (VAF) jumped from 27 to 50 in those 3 years. I now take HU. My WBC's were not elevated, I think a elevated WBC is more common with PV than ET but can occur with either. I was 68 when first diagnosed now 72. I think knowing what I do now about PV I would have probably have started cytoreduction initially, it was mentioned but not pushed. Knowing what I do now I would have liked to try interferon. The interferon Docs say that starting earlier is better than waiting, that is what I have read. If I were 45 and wanted cytoreduction therapy I would want to try interferon. This is simply my experience, not advice.

Bottom line from me would be to find a good MPN specialist, confirm the diagnosis, and follow their advice. Best to you.

[nightshadow]

Hi Family man,

I was diagnosed last year with ET JAK2 age 62. I decided to go on HU because my blood work was showing a sudden large consistent increase in my platelet count. I found out that much of my dizziness, fatigue and brain for of the prior several years was a symptom of ET and that the HU gradually cleared those issues for me. I would say that if you are okay with the current symptoms stick with what you are doing. However if they are starting to interfere with your life, give the HU a try and see if it makes enough of a difference to warrant trading the problems of today for the potential problems down the road.