Hello all … this is my very first post on this so so helpful site .
My partner was diagnosed with MPN in March … ( elevated platelets but also elevated red cells ) our haematologist says he has MPD , diagnosed after mild MI from which he is fully recovered thankfully .
Was started on Hydroxia .. and had several venesections since April. 5 to date !
Increased hydroxy 6 weeks ago at which point platelets 690 , HCT 476.
6 weeks after increasing the drug, today platelets are down to 619, but HCT is up to 49.8 which is the highest it’s been since we started on this journey .. Instructions today are to increase the hydroxia again and order 2 further venesections .
We don’t understand why HCT is up and platelets down whilst on the drug , he now is to take , 2 four times a week and 1 three times a week ( we started in one daily , then increased to 2 at weekend) how many venesections can he have ? … he’ll have had 7 by the end of Nov ?
Sorry if this is a but if s ramble … as I say we are at the very start of this journey and am very grateful for any guidance or thoughts anyone with more experience may have … very best wishes to all .
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Curlynik
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To be clear, was your partner diagnosed with Polycythemia Vera? That is the MPN where there is erythrocytosis (and sometimes thrombocytosis and/or leukocytosis). MPD sounds like to outdated acronym for Myeloproliferative Disorder. Given that the treatment is hydroxycarbamide (HU) + venesections, it sounds like it is PV.
We all respond differently to the meds used to treat PV. HU will usually affect all blood cell lines since it is a cytotoxin that affects the hematopoietic stem cells that make all types of blood cells. It may not affect all blood cell lines equally however, It is not uncommon to need to use both HU and venesection to achieve the treatment targets.
About the venesections, note that the intent is to make the person with PV iron deficient without making the person anemic. The body cannot make red blood cells without iron. While some people tolerate venesections, there can be adverse effects from the venesection-induced iron deficiency (e.g. fatigue, cognitive effects, reactive thrombocytosis).
There is a reasonable question to be asked about whether the current treatment plan is the right treatment option for your partner. That would be a question to review with a MPN Specialist. There are other options to treat PV, like Pegasys and the recently approved in the UK - Jakavi. Bear in mind that many hematologists have little experience treating MPNs, so it can be very helpful to get a MPN expert consultation. Here is a list of MPN expert docs if you are interested. mpnforum.com/list-hem./
Thank you so much for reply .. at the time of diagnosis in March … I asked our consultant what my partners diagnosis was … the reply he gave was … that my partner was making too many platelets and too many red cells … that’s why he was calling it … myeloproliferative disease … and said that he did not have myelofibrosis . We have been taking the HU for 16 weeks now .
Would hate to cause offence. , the consultant we are seeing seems like a delightful gentleman but finding a specialist sounds like it might be the future in what feels like a very long long never ending journey .
Many thanks …. Seems like there are many wonderful people on here prepared to take the time to help each other out .
Good doctors never mind a patient seeking a second opinion. The best doctors encourage patients to seek expert opinions and welcome input from a colleague with sub-specialist expertise. MPNs are rare disorders. Very few doctors have much experience with them.
The CALR mutation is almost always associated with essential thrombocythemia or myelofibrosis. Noting that myelofibrosis is not present, then that leaves several other options. It sounds like the doctor may have diagnosed, MPN-Unclassified. This is a diagnosis used when a MPN does not fit into the usual ET-PV-MF criteria. There is also the possibility of a CALR positive PV. Note that this is extremely rare, but it is known to occur. There is not a lot known about this. It really is the province of a MPN Specialist.
Given the current hematologist apparently being a delightful gentleman, I cannot imagine him having a problem with a patient seeking additional consultation. I expect he would welcome the input from a MPN expert colleague.
Thank you … as yet we’ve not had a BMB … as consultant had decided my partner is on too many blood thinners post MI … we are expecting to be reduced to one thinner in March … that will be one year after diagnosis and MI . Perhaps we’ll have a clearer picture following that ?
As Hunter alluded to , if he is a delightful man he should be delighted to listen to all your concerns and if you want to get a second opinion from a MPN expert that’s what should be done. It is a long journey so if at all possible it’s important to feel you have the right doc and if not find one. What some of us do is in addition to having a local Haem is to see a MPN expert to set direction and who you can consult from time to time to check progress, eg yearly or so, the expert can keep your local Haem on track by writing or phone, good local haems without ego issues should welcome that. The priority is you husband getting the optimal treatment, that he needs and deserves. I hope that helps 😀
hello Curlynik, welcome to our forum. It can be very daunting at the start of a MPN journey, there is such a lot to try and understand. We have a lot of very useful information on our website mpnvoice.org.uk about MPNs, the medications used to treat them and lots of lifestyle information, so do have a look.
As you have concerns about the dose of Hydroxyurea and the number of venesections your partner is having, it might be worth both of you speaking to the haematologist again to express your concerns and to discuss the treatment plan in more detail.
One thing to be careful with is to test at same time of day each time you get tested, also make sure hydration is consistent. For example Hct measured at 9am can be higher than at noon or 3pm, we dehydrate overnight. If a test is 9am, it’s wise to wake at 7 and drink 1/2 litre of water as well as normal breakfast. Platelets can easily jump around by at least a 100 for no reason so unless it’s a trend not really significant. As for Hct increase , if it’s a trend and not just one test it may be that he hasn’t found the right dose yet. Also it may be that he might do better on one of the other drugs eg Peg/Bes or Rux but that’s another discussion and he could change anytime. It’s common to have quite a few venisections when diagnosed and while finding the right dose. What I have written assumes he has PV.
It will be interesting to hear how he gets on and what his Haem has to say.
I have PV. Read AS MUCH as you can on no voice.org.uk. Be one familiar with all the terms and medication ( read read read)
I wouldn’t panic. My haematocrit was 74 when I was diagnosed 15 years ago.
I m on a fairly even keel now. However if I have a slight infection ( even a broken nose) my platelets shoot up and have been as high as 900. Now hovering around 360. My haematocrit dips up and down. I take 1000mgs of hydroxicarbamide daily ( have done for 12 years so hope that carries on) and have a venesection around 3 times a year.
You know, we can all be blinded by science but at the end of the day we have to remember:
1) we all react to this blood cancer differently
2) we all react to medication differently
3) all haematologists here and in the USA approach MPNs differently and it’s really important that you find a haematologist who is knowledgable about MPNS, who will listen to you, and who you trust - and it sounds as though you have.
4) do not stress and over think results. Stress you don’t need. It is what it is. Find a good medic and trust him.
5) try and ignore any negative posts. There are hundreds of Mpn patients out there living perfectly fine lives taking hydroxicarbamide, having venesections, on Ruxalitinib, on Interferon. We re all different. Chin up! All will be well. It sounds to me as though you have your finger on the button. Just be patient.
Thank you to all the good people on here . ( even if only to support myself )…we are somewhat overwhelmed by all of this … myself I’m a nurse and have more understanding of what’s going on … not sure yet whether that’s good or bad … my partner is the most non medical man in the world so it’s so difficult for him to get his head round it all … I’m the one with all the questions … he’s more inclined to do exactly as he’s told even when he doesn’t feel happy about it as the doctors surely know always what’s best … as I say we’re just at the start and surely will get into a stride eventually … many thanks to all.
You are in the right place with this site. These folks are the nicest and well informed. Numbers can jump around. Especially when we are all looking for specific number on whether we need phlebotomy or not. I do think preparing for labs is important like annilse said. Make sure they are hydrated and eaten a good meal if they are only checking CBC. Can make a big difference. And dose adjustments is part of it. I am on Besremi and labs are getting there but wouldn’t be surprised if I have another dose adjustment. I also see a local oncologist who is so sweet and I consider a friend as we are work colleagues and share many patients, but I also go to MD Anderson and my doctor encourages this and is so happy I go there too. My local doctor has done lots of research on his own just for me, but we don’t do anything drastic or big changes without consulting MDA. A good doctor welcomes help. And that is how it should be. I am going on 3 years of this journey and I feel like I can see the future again. And I have changed my way of living in that I live in the moment. I don’t know how long I will live, but the time I am here I want it to be good. This journey has opened my eyes to the important things. I wish ya’ll the best of luck on your journey and know it does get easier. ❤️
I had platelets over 11000. Slowly going down, now in very high 600s. Been on, and take;of Hydrea because it didn’t do anything. Been having blood tests every week. Specialist h now wants to wait 2 weeks to see what’s happening. Very frustrating times!
All of the above are entirely correct, and this is a lovely place to get and give support, as well as a place to share concerns and milestones- where everyone is supportive, even if they don't have exactly the same experiences, likes, dislikes or even cultures.
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