Can a PV Patient Turn Myelofibrosis So Fast? - MPN Voice

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Can a PV Patient Turn Myelofibrosis So Fast?

Fifty2018 profile image

I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy.

To my surprise, some of my CBC numbers are way too low. RBC was 6.1, which is only slightly higher than normal. Platelet cpunt was 1070, highest it had ever been, and higher than the 955 five months ago. Hematocrit is 37, far lower than the 45 threshold for a phlebotomy.

But the most worrying sign is MCV is only 60. When I was first diagnosed it was 87.5, within the normal range of 80-98. Now it's only 60. I checked my past record, and it sees to be on a trend to go down. This MCV number is a measure of how big the red blood cells are. This implies my body is making red blood cells that's too small and immature.

I am scared. Is this a sign that MY PV has turned in Myelofibrosis, a condition which is much much worse? How could I turn from PV to MF only 7 months after diagnosis? There seems to be an alternative explanation that it could be caused by iron deficit. But there has been only 7 phlebotomies. And my dietary is definitely not lack in iron. I do eat quite a bit of meat in my regular meals.

Any of you see MCV as low as 60, and what could cause that condition?

19 Replies

interesting I was diagnosed also last august with pv, and my mcv was 75 and recently 71 so a similar profile. my heamacrit has stayed put on 43 again after stopping phlebotomies in October last year. you do ask a lot of technical info that properly can only be understood by your heamo I would try not to worry. with platelets that high id be surprised if you not on a fair amount of hydroxy, im on only 5 hydroxy a week but my platlets are 420. sorry to hear you are feeling worried and hope you get some answers from your docter/haem. regards john

Mazcd profile image
MazcdPartner

Hi, when you saw your doctor last week and he/she gave you these results did they not give you any explanation or discuss the changes with you? Maz

Fifty2018 profile image
Fifty2018 in reply to Mazcd

The doctor was not able to discuss everything yet as we are still waiting for the result of the iron test. But the CBC result was already available and the doctor called me on the CBC. Specifically the phrase "bone marrow transplant" was mentioned. That scared me. It's probably because the doctor is not experience in this kind of decease.

Now I recall. I did a deep dental cleaning recently. It must have been quite a bit of blood loss during and after the dental cleaning. Even prior to that, after eight phlebotomy my ferritin level was 38, a bit on the low side.

Timjonze profile image
Timjonze in reply to Fifty2018

My advice would be to ask for a bone marrow biopsy which will make clear if you have any fibrosis. I’d also try and find a doctor who is an expert in MPNs if this is possible where you live - there’s a lot of misunderstanding around them and you need a haematologist who you can really trust. Best of luck and hope all works out ok

My MCV dropped to c. 60 when I was venesections but now back to 75 - 80 after one year of Pegasys. My iron counts were way below low at 60 but now low normal

Hence hopefully nothing more than low iron from all your venesections

Best

Paul

I was diagnosed with PV in Oct 2018. My MCV was originally 82.3 and held steady for the first month or so when I was getting frequent phlebotomies (every few days). Then, my MCV level started to drop steadily week by week even though I was having far fewer phlebotomies. It has finally seemed to have leveled off at around 69. My doctor has not expressed a concern with my low MCV. Low MCV can definitely be caused by low iron levels, and I would expect your iron is pretty low as well after 7 phebotomies. My iron dropped from 78 to 23 as a result of the first series of phlebotomies. As I understand it, that is the desired effect of the phebotomies, a sort of induced iron deficiency. It sucks having low iron, but my doctor wants my iron levels to stay low since that helps keep the Hct and Hgb down where it needs to be. I don't think iron in your diet would do too much to counteract the effect of the phlebotomies. For instance, my doctor didn't give me any dietary restrictions, but just told me not to take any iron supplements. Of course, that's just my personal experience and non-professional opinion, you should certainly discuss it with your doctor. Wishing you all the best! Regards, JP

I had ET for almost 15 years when it went to PV. Had a BMB at that point and it show very little fibrosis. 9 months and 8 phlebotomy's later my WBC started climbing. Andother BMB and I was diagnosed with MF. My MCV was in the normal range all this time.I would suggest getting a BMB to be sure, At 74 I have no options for a cure.

clubdino profile image
clubdino in reply to ccsial

That's interesting. I had always assumed that when ET transformed into MF that it was a gradual progress but your story proves otherwise. I wonder if certain parts of the bone marrow have fibrosis and other parts are "normal" and it all depends on where the sample comes from.

Thanks for all who tried to help by responding. I got my (incomplete) answer today.

I am indeed in iron deficit. Extreme iron deficit! My ferritin level is as low as 4. Neither me nor my doctor expected a number so low. But clearly it is sufficient to explain why my MCV is at only 60. I will not consider a biopsy at this point as there is no suspicion of MF now. What a relief! But I am now onward to solve the mystery of extreme iron deficit, and taking care of it. At least it is easier than getting MF. My ferritin was still at 38 at beginning of January. And all my 8 sessions of phlebotomy were done before the end of October, 2018.

Ebot profile image
Ebot in reply to Fifty2018

Glad things have become clearer. I just wondered whether you had had a bone marrow biopsy at all? It is a very useful tool not only for initially confirming a diagnosis but setting a bench mark for any future changes. I’ve had two. There has been a lot of discussion here about the procedure but it is pretty simple and straightforward (and definitely not to be confused with a bone marrow transplant you mentioned in your original post). What you have described in terms of your counts sounds pretty much familiar territory for someone with PV / ET etc. What’s important is that you are seeing a clinician with MPN experience who can help you consider your options for best management. All the best.

mark382 profile image
mark382 in reply to Fifty2018

I've I've had PV for 12 years and other than knowing my haemacrotit (PCV) I have no idea what the other figures are. I'm not told and I don't ask. The only reason for writing this that I to have a Ferritin level of 4. I only found out at my last venesection when the nurse asked me if I knew my figures. I said no and she told me my Ferritin level. I have another venesection next week (2 venesections in 3 weeks). I assume Ferritin level will be even lower. Anyway glad you are now feeling better about your results.

tracey13 profile image
tracey13 in reply to mark382

I sometimes think it's best not knowing your blood results.

We were obsessed when my husband was first told he had MF and had to see the bone marrow transplant team. Our world felt like it was falling apart.

My husband had all the test for a bone marrow transplant he's got 9 in related donors no siblings were a match.

He's doing well on ruxolitanib we just hope it lasts and that newer and better medication is coming out and he may never need a transplant. The thought of transplant scares the hell out of us both.

He has 3 monthly blood tests .

He was admitted to A&E Sunday last week we had to call 999 he had a gallbladder attack that was absolutely hurrendous.

He's lost two stone since his first attack changed his diet which really helps his moods cutting sugar out. But last weekend he over indulged with it being father's Day and he ended up in hospital!.

He was iron difficient before he started ruxolitanib this is why the fatigue was unmanageable . He was on hydroxy for about 3 years .

He takes 20mg ruxolitanib on a morning and night and two hydroxy a week . I'm sure he can stop the hydroxy but his bloods have been fine so his consultant has left him on this doseage.

I don’t know much about your situation. I have MF and have a good amount of iron in my diet, but my doctor gave me iron infusions because of two possibilities: 1) my digestive tract was not absorbing my dietary iron or 2) I may have undiagnosed bleeding somewhere (did the bleeding after you deep cleaning eventually stop?)

You never mentioned what kind of medications you are on. I got diagnosed with ET in and PV in 2016. The last few months my numbers on my CBC have been very erratic and i worry also that I might have MF. I was diagnosed with anemia last month but my doctor didn’t want me to go on any iron supplements. My latest blood tests showed my MCV to be high (now at 108.5) I’m also debating whether to ask my hematologist for another biopsy. My Hct, rbc, and hct are low.

Fifty2018 profile image
Fifty2018 in reply to Cja1956

So far I am only on aspirin, 2 pills of 82 mg per day. My doctor wanted me to start Hydroxyurea due to my high platelet count (1070) but I decided against it since my my ferritin is extremely low (4) and my hemoglobin is only 11. Suppressing it further with hydroxyurea at this point could result in too low oxygen carried in my blood, I believe.

Cja1956 profile image
Cja1956 in reply to Fifty2018

I thought I responded to this but I don’t see it, so here goes. If I were you, I would take the hydroxyurea because with platelets that high, you are at high risk for strokes, heart attacks, and blood clots. When I first got diagnosed, after several months of treatment, my platelets decreased to the 300,000’s. I went off my meds on my own and ended up in the hospital for 3 days with a blood clot in my spleen. My platelets had increased to 800,000. After 11 years with this disease, they have never been normal again. So please listen to your doctor and try to get those platelets down.

mhos61 profile image
mhos61 in reply to Cja1956

If you are on hydrea it does raise the MCV and MCH. Mine are always slightly above range. I did read somewhere that this is how haematologists know you are taking the drug, so it must be expected.

As well as lowering platelets, hydrea can lower other blood cells too.

Mary

Cja1956 profile image
Cja1956 in reply to mhos61

Thanks, Mary. I wasn’t aware of that.

My husband had PV for about 6 years then it changed to MF . But to be honest it could of changed before this as hes had no bone marrow biopsy only the one two years ago this October. He was absolutely drained on his knees.

Anyhow last year in February he went onto ruxolitanib and he's been so much better it's made a huge difference in his fatigue .

He's still working full time.

He will be 48 in sept .

If anything he's having more problems with gallstones than his MF.

Have you had a bone marrow biopsy done recently to diagnose MF?

Tracey

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