My local hem/onc says she wants my platelets below 400 and she isn’t all that worried about my HCT. It was 44.5 2 weeks ago and I had a phlebotomy. I know one phlebotomy won’t bring it down to under 42. I told her today that I felt much better when my HCT was below 42. MUCH better. She would not acknowledge me. I asked for another and she said I have to wait for todays lab results. She has a big ego and must be right. I was in tears when I left her office. My MPN specialist said that i have an MPN and that he leans towards PV because of my blood levels, very low EPO and the BMB and NGS panel done at Vanderbilt.
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I’m sorry to hear that you were reduced to tears at your consultation. You must be so frustrated!
The bit I’m having real trouble comprehending is why would a ‘General Haematologist’ argue the diagnostic thoughts of an ‘MPN Specialist’? I would be asking, why has your GH concluded that you have ET, has she shared evidence how she has reached that decision with you ?
Hopefully, others with PV will be able to throw some light on your counts. To me, the red cell count doesn’t tally with ET, but I have no medical background.
Definitely keep pushing for the venesection if you feel the benefit under 42.
I don’t know why she is contradicting my specialist. I have been seeing this local Dr for 8 or 9 months and was referred by my specialist! Not once has she said I don’t have PV and it’s actually ET. I know it’s not ET. Then she said that ET and PV have different treatments. She said I didn’t need anymore phlebotomies. Then she looked at my last HCT value and said “oh, well maybe”. It’s like having Dr Jekyll and Mr Hyde for a Dr!
Your local haematologist should be guided by the experts valued opinion, who is leaning towards PV.
As you already know haematocrit should be kept below 42 for women if PV is suspected. If I remember correctly you also have additional CV issues, which is a red flag warning. Phlebotomy is such an easy preventative measure to ensure your risk of thrombotic risk is lowered. It beggars belief!
Is it possible to contact your MPN Specialist by email to discuss the issues you are experiencing? I think you have reasonable ground to do so.
I emailed my MPN specialist and heard from him early this morning. A nice long email laying out why an oncologist may think ET and why an MPN specialist would lean towards PV and why phlebotomy is key. He told me to print it out and give it to my local hem/onc dr. I emailed it to her this morning.
My understanding is if you have either MPN, HCT needs to be controlled. But forget that, if you feel decent only on the lower HCT your body is screaming the solution, Dr is not listening. It's rare we get an obvious way to feel better.
Are you stuck with this Dr? There's another thread today with a Dr not listening to the patient (member YBSx).
I've posted recently that low EPO often goes with ET, not just PV. But Vanderbilt should be the final word on your BMB. Do you have access to that report?
One very PV indicator is "BM biopsy showing...trilineage growth" The "tri" means three different things are wrong including the one for ET.
In classic ET it's only one of them:
"BM biopsy showing proliferation mainly of the megakaryocyte lineage" These Megas are what make too many PLTs.
High WBC like you have is often PV related. How have all the numbers trended since you started PEG?
I just had my 6th Peg this evening. My white cells hang around 13k to 17k and have since 2016. My HCT has been as high as 50.4 and that was 9 months ago. Most of the time, without any meds or phlebotomies it hangs around 45 to 48. Red cell counts are always high as are platelets. My MPN specialist, per his nurse, will be contacting me this weekend.
One possible reason for ambiguity could be your HCT/Hb is too low to meet the requirement. See WHO criteria here. But I see in your posts you've been as high at least 48.1. That history does met the req't. I see in the same old post that Dr also said you had ET. Was that before you had the BMB results?
My first hematologist did dx me with ET before my BMB. In fact, I had to ask her to order the BMB. My HCT was the highest at 50.4 nine months ago. HU never did much in reducing below 45. I was on 1500mg a day and it was killing me. Started phlebotomies in December and had 5 or 6 more up until April. Got to 38. I felt good.
At 50.4 you're even deeper in PV territory, but the just in range EPO does confound that express route there; anyway you meet all the non-express req'ts best I can tell.
<<Criterion number 2 (BM biopsy) may not be required in cases with sustained absolute erythrocytosis: hemoglobin levels. ...16.5 g/dL in women (hematocrit, 49.5%) if major criterion 3 (Jak2) and the minor criterion (low EPO) are present. >>
My provider uses 4.3 min, so that would put you under range with them. But I know it is different for various institutions as I see as low as 2.6 in one reference.
So, my local hem/onc Dr said with ET it is important to control your platelets to prevent thrombosis and it’s not so important with PV. That increased Platelets in PV are not as much of a risk. I can’t make this make sense.
I agree that is confusing. I think it's a disconnect: PV usually does not have way hi PLT, so PV usually does not require fixing PLT. But if the MPN shows high PLT my take is who cares what it's called, its risk (or not) should not care what label the MPN has.
If there is data on the relative PLT risk for a same PLT value (PV vs ET) it would be nice to see. For example is plt of 900 riskier in "PV" than it is in "ET". I suspect not, but your Dr may have some good info.
I agree after all the lessons we've learned from your info, you're in the same mix I am. With that I also agree that risk reductions should be by our condition and not by our MPN label.
Yes, indeed! I made an appointment with a new local hem/onc Dr. I see him September 6. I hate to look like I am Dr hopping but I need someone who can collaborate with my specialist and listen to me and not let their ego get in the way.
Doctors work for the patient, not the other way around. Firing this doc is not doctor hopping, It is good judgement. Hope the next doc has a better attitude and ability to collaborate with your MPN Specialist.
Suggest it is time for a new local hematologist. One who will work more collaboratively and accept feedback form the MPN Specialist. Also, one who prioritizes your health over her ego. Big ego = bad medicine. One should never leave an appointment feeling so unheard. You know your body best. You need and deserve providers who listen to you.
MPNs can be tricky to figure out sometimes. Some cases do seem to fall into a not-so-clear category. Some cases of PV are mistalken for ET. That is why the input from the MPN Specialist is so important. Suggest contacting the MPN Specialist for input about your treatment plan. The local doc's job is to help implement the plan that you and the MPN Specialist put into place. Ig this doc is not willing to do that, replace the doc.
Do know that everyone here has your back n this. All the best my friend.
It may be hard, but well worth it. You deserve the very best from all providers.
I am very fortunate to have found a wonderful local hematologist. He values the input from the MPN Specialist. He is respectful, listens to me and values my input as well. He never puts his ego ahead of my care. He always respects my right to make decisions about my own care.
This is the kind of care we all deserve. Sometimes it is up to us to make it so.
To follow up on Hunter's note about ET-PV uncertainty, I am right there, BMB points to ET per the lab report but there's some indicators of PV. My current specialist just called it MPN when I asked while official Dx is PV. You may be in this same vague area, but you say your prior expert had no uncertainty. None of that reduces your reason for seeking HCT control.
I'm not a doc, but your blood counts look like clear cut PV to me. And fairly aggressive PV that could benefit from a 100-135 mcg weekly dose of Pegasys if you can tolerate it, to see if the WBC and Platelets will start to come down.
Thanks, Monarch! I just increased to 90 mcg, yesterday. I have been extremely fatigued since not long after starting Peg. But I do wonder it it may be my iron is low, hence my platelets going up and not the Peg. 🤷🏻♀️
I am in truth, a physician assistant who happens to have PV, but I am not by any means a PV/MPN specialist.
Notwithstanding that, nor whatever the heme/onc wonks want to call whatever flavor of MPN you have [and you clearly have an MPN], the absolute most important thing is to get your Hct to 42 [or actually to below 42]!
Sorry, but I don't even think how you feel [needs to] come into the equation- BECAUSE:
With your elevated WBC, Platelets, and RBC, you are a clot [thrombosis] waiting to happen- which just happens to be the #1 cause of death [or disability] for us MPN [want-to-be] survivors.
I searched this page and didn't find aspirin mentioned anywhere yet- but if you aren't on any, you most likely REALLY NEED to start it.
The usually recommended dosage is 81 mg [used to be called baby aspirin before Reyes Syndrome was known about] twice daily. although I take mine both at bedtime because there is some evidence that doing so helps lower blood pressure- and mine has been a bit high since my PV became overt.
When I spoke with my [non-MPN specialist] Heme/Onc MD, she agreed that 2 once daily had ought to be as effective as 1 taken 2x's daily, but allowed that theoretically, because we have such a proliferation of cells being created and released constantly, maybe some MPN super-specialists would disagree.
Anyway, if you need any evidence to take back to YOUR Heme/Onc that your Hct needs to be lower, it's available all over this site- especially look for posts by EPguy [who if I read a recent post correctly- isn't actually a guy- go figure], and/or Hunter [w/ some number I can't remember as a suffix], but even Healthline and WebMD will likely have articles that support that recommendation.
The standard disclaimer applies: "This is not intended as medical advice, as I'm just some internet doofus responding on an anonymous internet medical site for lay persons, to information that you may or may not have entered correctly, and that I may or may not have read correctly, yadda yadda, sis boom bah!😇
Seriously, get that MPN specialist to kick the other MD's sorry behind, if you want to, but first get your clot risk treated ASAP!!!!
To confirm, I'm a bona fide guy. A convenient fact since we're allowed HCT to 45 (vs US practice for women being at 42-43) So I'm putting all that masculinity to good use with my HCT of 43-44 .
On aspirin, my 1st non-MPN Hem Rx 2/day, he said it's current practice. My current MPN guy went with one. He said it's the real latest research but specific to each person's condition.
I was quite apparently in error- caused by thinking [probably the 1st red flag on the play] that I remembered [2nd red flag] a post from your screen name alluding to the converse [red flag #3- assuming I knew what was meant].
I apologize for my mistake, I certainly did not intend to be offensive, and if I was, please consider me appropriately embarrassed and chagrined at my insensitivity.
Quite reasonable assumption in the full context. Me and Hubby are 27 years together, watching each other get old. But I has a big jump in that oldness with the MPN Dx and a kickstart of original Covid.
It's a good opportunity to remind of the HCT gender guidelines.
I had a phlebotomy, yesterday. They got about 600ml. Completely put me out of function for the rest of the day. and that is unusual for me. They gave me fluids and I drank water. I wonder if it hit me harder because I went to 90 mcg of Peg Friday night? 🤷🏻♀️
I have found more fatigue, and esp weakness, since starting Bes, and esp as dose went up. My bloods have stayed ok with some improvements over HU. I feel this weakness may be my dose limiting issue. I can still do my intense strength exercises, but it's getting harder to keep the same routine.
Sorry to hear of the way you’re being treated (or not, as seems to be the case). I can’t add anything useful to what our two resident experts, Hunter and EPGuy, have already written, except to say that ‘how you feel’ must surely be a strong guide to your preferred course of treatment. This might not necessarily be the case with other conditions, but with MPNs the lines are often blurry as regards our precise diagnosis, and they often share the same features, symptoms and outcomes. I’d personally be looking for a more open-minded, respectful consultant, rather than a dogmatic one. Wishing you all the best.
This website (link below) has a lot of good info PV and all mpns.
Can you get tested for the jak2 mutation? Most pv patients have this mutation. I have pv and tried peg but it did not work for me. I'm on jakafi and no longer require phlebotomies. Jakafi keeps my numbers controlled exceptionally well and has reduced the pv load. I went from 37% mutation burden to 9%
Hi Dudette,I am JAK2 positive with allele burden of 17 point something. I just upped my Peg to 90 mcg. My local Dr ordered it for every other week which is ok but then I need phlebotomy along with that until the Peg kicks in. Hoping it does.
I didn't see your AB before. At 17% AB that is low for PV. This does not at all preclude the PV Dx since AB can be low with PV, but ET tends to be more often in this range and your Dr may have been distracted by this detail. Note AB is not in the WHO criteria, only whether you have any AB of Jak2.
Is 17% what you had at Dx? (before PEG) Lower AB is usually associated with lower risk disease by some measures.
Since I had 2 cardiac blockages last October, my specialist felt I was a high risk vascular case.I had a heart cath in 2016. My LAD had minor narrowing, like 20%. I had it done because nothing else explained why I was so short of breath. Then last year, I started having chest pain in April. Went to the same cardiologist who said he didn’t think it was heart issues since I had a pretty clean cath in 2016. He wrote me a script for GERD.
Turns out my LAD was 95% blocked. And another smaller artery was 100% blocked. My number was about to be up. I have never had high cholesterol.
That's a scary event. I assume a different cardio found it. Is it now unblocked?
For GERD my brother had a bad one. He changed his bed to be angled head up and now said he uses way less meds to control it. He says there is evidence supporting the idea. I also lifted the top part of mine years ago, with a wood wedge. It helps my sinus blockage.
It wasn’t GERD and yes a different cardiologist. I told him I was afraid to move around because I felt like something bad was going to happen and my life would be over at any moment. He stented the LAD and ballooned the smaller artery. I was very very lucky.
That's an excellent MR (molecular response) for AB declining from 37 to 9. Rux is known to have this ability while INF is more often associated with such reductions.
You’ve had a lot of useful views already, I think one to focus on is keeping your Hct well under 45, theUS docs say 42/43, if your local Haem won’t help with that, as others have said you need another Haem or strong direction from a MPN specialist that your local Haem will listen to. It feels like a disruption changing haems but as Hunter said it’s worth it. I’ve faced the same dilemma a few times , I think it’s worth it. You need a good team now but also worth considering is if at some point (hopefully not) you have other issues with your MPN then if your current Haem can’t see that Hct control is number one priority then one may wonder what help you will get with issues that are not so basic.Your MCV is low , another pointer towards PV.
It sounds terribly frustrating to have such differing opinions and to have the local hematologist not even acknowledge what you’re going through. I’m sorry you were reduced to tears. That shouldn’t happen. Our doctors are there to support us and consult with each other.
I really hope you get it all sorted out soon. We are all here for you.
Oh for goodness sake! I just heard from my local hem/onc and you all, she is certifiable! The EGO in that woman is enormous. She read the email from my Specialist at Vanderbilt. She just told me that she would call him and educate him on MPN's because she is also a specialist in MPN's. She will educate him! Furthermore, she said "I don't know where you got the idea that I would not phlebotomize you. I do that for all of my MPN patients." I told her I was sitting right there when you said it. She said that my BMB from Vanderbilt did not show low iron therefore my specialist must be wrong about PV and I must have ET that is causing my high platelets. I told her that all during the first 4 or 5 months of this year I was getting phlebotomies, so my iron is low. She just kept saying she was going to call and educate my specialist. She did say that from now on I could call the shots on my care. I told her that I had no faith in her, so why would I want to continue my care with her! Seething...
When I posted above, I hadn't yet read down far enough to see the LAD blockage and stenting result, but since I have now, I have to assume that you are taking at least aspirin, if not Plavix or some other anti-platelet aggregation agent.
Regardless, your Hct [and WBC and RBC] still need to be decreased significantly- and that MD is apparently a blithering idiot, in addition to being a narcissistic wanna-be MPN specialist.
Thank God you weren't complacent about the chest symptoms, or you'd have mourners, not a gaggle of MPN'ers who have your back.
Keep following the path of self-advocacy, and get a better MD- I lucked out into a local general Heme/Onc who [says she] will listen to and take direction from a not-so-local MPN super-specialist- I hope she's speaking the truth because I'm going to see the MPN MD in the next coupla weeks to see if she agree that I'd be better served by Besremi than HU.
Again- stay well and keep pushing for what you know is right for you!
While she's at it why not post posthumously enlighten Einstein on physics.
Seriously, there's another off statement in your Dr's comment "I do that (Phleb) for all of my MPN patients" If so she's operating malpractice or has a unique set of MPN pts. Plenty of us don't need it, either with classic ET or via HU, INF etc. No way do 100% need pleb. I've never had one so far. Further as we've seen in many posts, long term phleb can have its own risks.
As above your BMB is full of PV indicators which she filtered out. She should leave MPNs to the experts, which in comparison to her includes us collectively right here.
I understand you're finally switching your care, that alone will lower your stress and improve your condition.
She says that i only have one cell indicated in my BMB, megakarocytes. I read the full report There are "mildly hypercellular bone marrow (50-60%) with trilineage hematapoiesis and increased abnormal megakaryocytes with hyperlobated nuclei."
Looking deeper, with your easy to read result here, it's complicated (of course) There's always something new to learn.
Your result has"trilineage hematapoiesis" This is quite different from the "trilineage growth" required in the WHO list. Trilineage hematapoiesis is a normal condition from what I can find, the three cell lines are doing what they are supposed to, that being hematapoiesis (making blood parts) This may be the same as what I had "maturation of all (the three) cell lines" Thus we both are making blood parts properly, the -tri- in this context is not a disease condition.
hyperlobated nuclei of your report is an ET feature. But ET requires "increased numbers of enlarged, mature megakaryocytes" (I had this) while you have "abnormal" ones. Abnormal allows for the WHO PV feature of "pleomorphic, ... megakaryocytes (differences in size)"
The "mildly" part is missing from mine, I think this is the main reason for my Dx uncertainty. I will be asking for the % I had (yours is 50-60) Adults are 30-70, with less as we age. So you are in the adult range but still mildly too much for an older adult.
In summary your Dr has a point that there is uncertainty, as is with mine. As above your blood counts lean to PV. But with all that, I'd rely on the Vanderbilt MPN experts to make this judgement.
My Dr considers the distinctions arbitrary, esp when we're in that gray area. When I asked early on he said I have "MPN".
Anyway, my specialist said I the distinction didn’t matter so much between ET and PV. He is adamant on my HCT staying below 42. HU did work to reduce my platelets but not much for white cells or red cells. With phlebotomy, I have no night sweats, less overall sweating, my skin is less red my face doesn’t glow red like the sun! And my blood pressure is better.
My local Dr wants me to go to 45mcg every week with Peg.
In the office, she said we should up my dose. Then today, she said to do 45 every week. I expected her to say 90 every other week. I guess it works out the same.
As Hunter says, it should reduce the variations. As we take INF for a longer time this can get better. I've read that the earlier INFs tended to do this (allow less frequent dosing over time) and Besremi is designed to go to 1/month after the 1st year, so it follows that early info. Members here on PEG also tend to go less frequent after a while from posts I've seen.
But with your recent start 1/week is typical. Likewise most or all of us on Bes are still at 2/month since it came out only this year.
I'm hoping for better symptoms on the 1/month plan next year.
It works out the same for total monthly dose but I would expect 45mcg weekly to be easier to tolerate than 90mcg every other week. It would also more likely result in stable numbers over time due to the half-life of Pegasys.
...and to reiterate and amplify the comments above, remember that the overall benefits of interferon-based therapy may really take a year [or more] to become fully evident, and after that increase over time.
Also, per at least one, and possibly more reports, using lower doses causes more consistent, albeit possibly slower, response on disease effects [symptoms, blood counts, and AB]; whereas higher doses may actually cause an initial increase in the AB, but with the eventual response of lowering AB [but also potentially significantly higher adverse effect burden [side-effects including both symptoms [fatigue, myalgia, arthralgia], and overshooting targeted reduction of blood counts [anemia, thrombocytopenia, and leukopenia].
Hi Everyone!I want to give you all big cyber hugs for your input and support! This past week was tough and my local Dr is to blame!
I have an appointment with a new hem/onc Dr on September 6. He has excellent patient reviews and I am hoping that he is open to collaborate with my MPN specialist. He messaged me, this morning, again, and definitively said PV. He does not agree with my current local Dr who has gone rogue on me! It’s very disappointing!
The new local Dr is about 15 minutes further away but worth the extra drive - 50 minutes one way if he is as good as his reviewers say!
It's starting to sound like you have found a new MD without the recto-cranial inversion that your previous one was laboring under.
I am hopeful on your behalf.
To provide further contrast with your previous [alleged] MD:
When we met last Wednesday, my local Heme/Onc agreed to send a referral letter to the out of system MPN specialist from Roswell Park I had located through MPN Voice [IIRC] once the results from my BMB were [mostly] finalized.
[The mostly is because the report of the full [non-driver] genetics panel isn't final even now, a full month later.]
I had expected that my SWMBO would have to call for an appointment Monday [after they would have presumably received the referral letter].
However, even though I didn't send the MPN specialist's contact information to my MD until the day out appointment, first thing Monday AM, my local MD's scheduling office called us to set up the consultation appointment in Buffalo.
Now, that's an engaged provider, who isn't narcissistic or an egomaniac, and who puts her patients' needs ahead of her own- and I'm so glad that I lucked into her care.
Given that I had been experiencing pruritus, night sweats, facial flushing/redness, and most of the other PV symptoms for well over a decade before my primary MD decided that I needed referral to Heme/Onc, I had some initial regrets about not having been referred sooner- when I would've still been young enough to be considered low-risk, but upon reflection, given the path my case has taken and the slow evolution of MPN treatment, I probably wouldn't have gotten treatment with interferon even a bit sooner, so I'm well over that phase now.
Hi PhysAssistIt certainly sounds like you have found a caring and perceptive provider! Congrats!
I missed on on 4 years of potential treatment. In 2016, a provider tested me for JAK2. She did not tell me that she was doing this, at all. So, when my labs were run, I was able to see the results on the patient portal but the JAK2 was a send out, so it was hard copy and scanned in. Scanned documents are not available on the patient portal. It was positive and they never contacted me about the results. There are definitely some serious holes in the healthcare system.
I wish you all the best and thank you for your kindness and input!
Thanks, I'm hopeful to get off HU and on Besremi ASAP.
Regarding your delayed diagnosis: Ouch, that stings.
But, as of now, I think we have to look at these events as water under the bridge, and looking forward [to long and healthy lives] is our next best option/step.
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I have pv, could I have me/cfs too?
9 month Besremi update 
increasing HCT despite Besremi 
