Hi all,
Has anyone had fluctuations in white blood counts?
My husband has PV, diagnosed 4 yrs ago and his WBC are usually in the range of 8. His last CBC showed his WBC to be 6.7. His hematologist didn't say anything about it, but I was wondering if anyone has an opinion on WBC dropping?
Thanks!
WBC fluctuates depending on whether body fighting viruses or infections. Hence one off readings are probably not relevant. Need to establish a trend before investigating further.
Is he on any meds?
Best Paul
Thanks for taking the time to reply!
He's currently just having phlebotomies monthly. His bloods have not been consistent lately so I guess I'm on alert for anything that seems off. Usually when he gets a phlebotomy his platelets rise but for the last 6 months or so his platelets have been slowly dropping. It just seems a bit strange to me.
Monthly venesections sounds a lot if ongoing - can cause excessive iron deficiency eg anemia and fatigue.
Has he been tested for iron levels?
When did he last have an BMB?
I assume spleen has been checked and stable
And is he seeing an MPN specialist?
Wondering why he is not on drugs?
Best Paul
He has a lot of fatigue. His last physician was not on top of things so he didn't have monthly venesections and hct was at about 53. Now his new hematologist has him coming monthly until under 45.
He has not been tested for iron levels.
He had a bmb about a year after diagnosis so 3 yrs ago.
His spleen is very enlarged. Has been enlarged at diagnosis and still is.
We have an appointment to see an mpn specialist this coming week.
So far the phlebotomies have gotten his hct down steadily so his doc has not recommend medicine.
Also, his blood pressure is high and isn't well controlled with medication even with phlebotomies.
Is he on HU, Interferons or Ruxo? With an enlarged spleen and tricky to control blood counts, he sounds like a suitable candidate.
Are you U.K.?
If having 12 venesections pa, he could be very anaemic. Might be worth asking to have his ferritin and iron checked.
Hopefully the MPN specialist can sort him out. Aside from iron levels, I’d ask the specialist to check LDH levels and perhaps another BMB to be on the safe side. And possibly an ultra sound on the spleen to check how enlarged.
Best Paul
What are LDH levels?
He had an ultrasound recently and his spleen is 18 cm.
And we are in the USA, in Maryland
Also, he is not on medication. His hct is now 48
LDH is Lactate dehydrogenase, it measures cell damage and is used by some Hems as a possible indicator of MF progression.
Many of us on this Forum use Pegasys with great success. It’s a bit of a slow burner but holds out more hope of slowing progression. Ruxo/Jakafi is a great drug for reducing symptom burden but more anti inflammatory than disease altering.
HU quick acting and easy to take. Ostensibly less side effects than interferons but I’m not convinced that this applies re latest interferons. If prescribed Pegasys, start low dosage and slowly build up. I’ve had no side effects.
Some Hems believe Pegasys as close to a ‘cure’ as currently available but need to start as early as possible. I’d suggest you check this out researching this site and googling hems such as Dr Silver and ‘Ash 2019 interferons’
Ok, thanks for all of this info. I will be a more informed consumer at our mpn specialist appointment this week.
Glad to hear you are going to see a MPN Specialist. It is very important to see a doc who has the KSAs to provide individualized care for PV. There are a number of different protocols regarding PV treatment. One size does not fit all regarding treatment. Hopefully the MPN Specialist will be able to address the issues you raised.
Specifically - WBC counts vary normally and are not an issue when they stay in the normal range. Splenomegaly is a significant symptom of PV. Depending on how large it is, may indicate a need for more aggressive treatment than phlebotomy-only. HCT control is the single most important number to watch regarding PV tx (>45% being the goal). It may be that the spleen size will come down once the erythrocytes are better controlled, but best to not assume that is the case. Hypertension can result from the increased viscosity of the blood due to the PV, but should come down when the blood becomes less viscous. If not, there may be other issues contributing to the hypertension. It is something to get under control as hypertension + PV = increased risk.
I also have PV. JAK2 positive with a mutant allele burden of 25%. (if you do not know the allele burden, do have it checked). I am fortunate to have a relatively indolent version of PV. I am on a phlebotomy-only tx regimen, despite being age 64. I was on hydroxyurea for a year after a post-surgical spike in thrombocytosis, but the MPN Specialist took me off it as it was not worth the risks for me (I am HU-intolerant). The doc also took me off aspirin as I have a long hx of excessive bleeding/bruising and my risk of hemorrhage is greater than my risk of thrombosis. The phlebotomies have been very successful in controlling HCT and reduced my BP from 135/95 to 115/75. Unfortunately, the every three week regimen was a bit too much and I ended up so iron-deficient that they could not even measure my ferritin levels. The iron pills the doc recommended were even worse than the anemia for me, so I have elected to just let my body recover on its own. In essence - the goal of phlebotomy is for you to be somewhat iron-deficient in order to control the erythrocytosis, but is a balancing act. You do not want to get too anemic as that can become its own problem.
Going forward, I am going to pursue the phlebotomy-only regimen, until there is a reason to do something different. I do work with my docs and monitor as indicated. Should I need to resume chemotherapy, I would consider peg-interferon and/or ruxolitinib. You will likely also hear hydroxyurea mentioned as it is a standard first line tx many, but not all, docs use. All of these meds have their own risk-benefit profile. We each respond differently to all of them. Unfortunately, trail and error is sometimes needed with these meds as there is no current way to tell in advance how we will respond to any of these meds.
Hope that helps. All the best to you.
Thank you for all of this info! I read in your other posts that u have seen dr spivak? That's who we are scheduled to meet with this week
Dr. Spivak is an outstanding doctor. Definitely a good doc to consult with for MPNs. He does not do ongoing treatment from what I understand, but will serve as a consultant to the patient and the ongoing hematologist. He has published a copy of his treatment protocol in the Blood Journal July 2019. He can get you a copy if you are interested. His protocol is not always what other docs find typical, but it is well thought out and definitely worth paying heed to.
Yes, he only sees patients for second opinions.
Do you know if he will be able to determine my husband progression prognosis? You said you have an indolent form of pv and I was wondering how u know that?
Brief MPN hx. Mutant allele burden = 25%. Diagnosed with ET over 30 years ago. Progressed to PV about 7 years ago. Never any incidents of thrombosis. Very mild splenomegaly. Had stage 1 hypertension that returned to normal after phlebotomies lowered blood viscosity. Thrombocytosis typically ranges from low 500s to mid 700s. Has gone higher when injury/illness = reactive thrombocytosis. Erythrocytosis present, but not severe. Highest HCT=58, but typically was 52 - 54. Basically I have had no significant ET/PV manifestations and the systemic inflammation I experience is more bothersome (osteoarthritis, eczema. GERD, insomnia, plantars fasciitis, etc).
One individual factoid - my von Willebrand Factors tend to drop below normal when platelets get into high 700s. Have a long hx of excessive bleeding/bruising while on aspirin, that seemed to be getting worse. Dr. Spivak recommended I d/c aspirin, which is not a typical recc for age 64. He stated "You do not want to get a brain bleed." Two weeks after I saw him, I was diagnosed with a hemorrhagic brain tumor that was surrounded by edema. I had bled in my brain. Aspirin maybe not such a good thing for me. Can't say what would be best for your husband - his case may be different.
While your husband won't be facing that issue, he has his own cooccurring issue to deal with. Dr. Spivak's consultation will, I am sure, be very valuable. He really does take a look at each patient's needs. His approach really is very well thought out and based on his extensive experience and solid research. FYI - he does not seem to be a fan of hydroxyurea; but neither am I since I am HU-intolerant.
All the best to both of you.
Thank you so much for sharing. Good luck with all of it!
Well I am on to new adventures myself. After Green Laser PVP/TURP in Jan 2018 (horrible surgery), I had a catheter ablation for atrial tachycardia in June 2018, then a craniotomy resection of brain tumor in June 2019. I also found out about the progression from ET to PV in the middle of all that (my old hematologist had missed it). About a month ago the docs found a bone tumor on my jaw. I have a cooccurring genetic condition (Neurofibromatosis type 1) that predisposes me to certain types of tumors. Along with the JAK2 mutation, that also predisposes me to neoplasms, my life has become very interesting of late. I could actually do with a bit less interesting at this point. Just to make this all even more interesting, The JAK2 mutation creates a kinase based disorder, dysregulating the JAK-STAT pathway. NF1 is also a kinase based disorder, dysregulating the RAS-MAPK pathway. These two systems impact each other, but it is so complex no one really seems to fully understand how. LOTS more to learn. I may have to go back to graduate school and get another degree!
Oh well - sometimes you just have to "Embrace the Suck" or alternatively "Suck It Up Buttercup". I actually have both of those patches for my jacket. At least my semi-retirement isn't getting boring. Brain cells very active these days trying to learn enough to make good decisions for myself. Maybe I really should get another degree!
Do let us know how the appointment with Dr. Spivak goes.
The reduction in WBC might be a result of the monthly venesections. The change you've noted is quite small and a result of 6.7 is well within the normal range. That said you need to keep an eye on any trends over time. Having some detail on numbers of the different types of white blood cells can also be helpful.
Its good to hear that your husband is going to see an MPN specialist. It sounds like some medication is needed to help with the HCT, spleen size and fatigue but the strategy of seeing what can be done with venesections alone is standard practice.
Let us know how you get on. Take a list of questions with you.
Thank you so much for taking the time to reply! I am going to prepare questions to ask.
Hi, they can fluctuate, and quite dramatically, even in a short amount of time, depending on what our bodies are fighting. I'd definitely have it as a question to ask the specialist as they will look at whether it's a trend. It could be due to the frequency of his venesections but as you are concerned then you should ask. Good luck with the appointment.
You answered my question. I wondered if wbc can fluctuate in normal circumstances. Thank you!
My haematologist told me that blood counts are fluctuating all the time. The only thing to watch is the general range.
Ok, thank you. That's what I was wondering about.
Hi, are any of your other blood counts dropping such as Hct, Hgb, or RBC's?
A little bit
I doubt that one test only means much. I would keep a record of all test results over several years and should you see a trend where the counts are going up or down over a period of say 6 to 12 months then you should bring that up with your hematologist - MPN specialist.
Best of luck to you.
That makes sense. I will continue to keep track of the numbers. Its very nerve wracking knowing that pv can progress to mf.
Thank you to all of you who took the time to respond and share your knowledge with me. I so appreciate it!
My husband is post PV MF his WBC keeps rising two months ago they were 17, then last month they dropped to 15 .
He having his monthly bloods done this Friday he's doing dry January and a calorie counting diet so we curious to see what his bloods are like after a full month of life changing habits .
I know WBC can rise with stress and bad diet this is why we trying to calorie count. So far so good he's about 8lb lighter and will weigh again this weekend
Tracey
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