Hi guys! I live in Ukraine and am currently looking for a good haematologist to advise on the best treatment for our case of PV/MPF. Ideally, pegylated interferon- alfa 2b.
Does anyone know a good haematologist in Ukraine who is keen on the most up-to-date treatment options/protocols?
Hi Dovakin, , I thought somebody might have responded but maybe this Forum hasn't any other Ukraine based members ! . Also I recall reading how the fall out from the Chernobyl nuclear accident exposed many folk across many miles to various levels of radiation which subsequently caused cancers including MPNs. So I was thinking that the main clinics if not all would of seen many patients with blood cancers. Maybe there is a specialist in the main hospital (s) in Kiev or one of the larger cities. I guess it depends where you are because I think it's a fairly large country, 2 or 3 times the size of the UK and travelling a distance might not be easy for you.
I wish you luck in finding someone best placed to help, it puts into perspective how fortunate some of us are to be seeing the experts looking after our care without too much inconvenience.
Regards - Chris
Hi Chris! Thanks so much for your reply! We do have clinics in Ukraine specialising in haematology, it's just for the most clinicians we've consulted with, hydroxyurea is the first choice treatment method, and we're reluctant to start with it because of high toxic load and other unsettling potential side effects, so we're aiming at trying out Interferon first and seeing how it goes. I know that interferon has its own challenges, but it still seems to act much easier on the body than hydroxyurea.
Again, thank you so much for your reply and the support!
All the best to you as well!
Best regards,
Dovakin
I do not see any MPN Specialists listed on this list. The closest are in the Czech Republic or Austria. mpnforum.com/list-hem./
I know other from countries that have no MPN Specialists have traveled to seek MPN Specialty care. Sometimes these specialists can consult with the hematologists near you to coordinate care. I am not sure how your healthcare system works in terms of paying for this. I do know that some people pay out-of-pocket for this consultation.
JediReject makes a good suggestion. Start with checking at major hospitals/research centers in Ukraine. You would be most likely to find a MPN-expert doc there.
The other issue is going to be whether ropegylated interferon- alfa 2b (Besremi) is available in Ukraine. It is a new med and not available everywhere. It just became avaiable in the USA in November 2021. PEGylated interferon alpha 2a (Pegasys) is more widely available.
I hope you do find a MPN expert in Ukraine. If you do, please add that doctor to the list on the MPN Forum website.
All the best to you.
Hi! Thank you so much for your recommendations! We've consulted with a couple of haematologists so far - one in Germany in, one in the US and a couple haematologists in Ukraine. So far, the US doctor and the Ukrainian ones suggested treatment with hydroxyurea, but we would like to try interferon first and during our next appointment ask the doctor to explain the rationale behind choosing hydroxyurea over interferon.
Ropeginterferon isn't available in Ukraine yet, but Pegasys is, so we would like to try it first and see whether it's effective enough and how tolerable the side effects are.
Once I'm 100% sure about the two current Ukrainian haematologists we're consulting, I'll add them to the list (didn't know it existed, so thanks!).
Appreciate your help and support!
All the best to you!
Best regards,
Dovakin
The rationale is pretty simple. Hydroxyurea is much cheaper so some healthcare systems prefer it. Some people tolerate HU despite its toxicity. Some do not. The same is true for Pegasys. One of the big differences is that HU treats symptoms, but does not alter the disease. PEGylated Interferons can be disease altering as well as treating symptoms. There is very good evidence that is reduces the risk of progression in people with PV. It is reasonable to think this would apply to other MPNs too. Some doctors recall the older version of interferons, which were hard to tolerate. The PEGylated versions are much easier to tolerate.
Ultimately it is your treatment goals, risk tolerance and preferences that must drive the decision about which med to us. HU and PEG are both first-line treatment options for ET and PV. It is the patient's prerogative to choose which medication to use. Doctors advise. Patients decide. That is how it works.
Just in care you have not seen these references, here are some resources that might help.
legeforeningen.no/contentas...
thelancet.com/journals/lanh...
ncbi.nlm.nih.gov/pmc/articl...
drugs.com/monograph/hydroxy...
Hope you are able to access the medication of your choice ASAP.
Dr Hans Hasselbalch and Dr Gisslinger are two world famous European haematologists who are very enthusiastic about Pegasys etc. The are both very approachable and may do virtual consults, they could write or talk to your local Haem to convince them to try Pegasys first. Many haems like HU as a first line for us but if one can tolerate Pegasys that would be my drug of choice of the drugs that are available currently. Not everyone can tolerate it, it’s important to start low ie 45mcg and build up slowly, it can also take a while to work, some get results straight away but it can take months or for some years to get all counts under control. That’s likely another reason some haems like to give HU , it works quite quickly to control counts. As you have probably read Peg might have disease modifying properties but that hasn’t been conclusively prove yet, worth a try though.
Hi Ainslie! Thank you so much for your input on this! We were planning to go to Germany for a consultation again (or some other EU country), but with the pandemic we had to delay that, unfortunately, and the haem we've asked about vaccination advised against any kind of vaccination at this point because of high platelets. We'll definitely keep the doctors you mentioned in mind though (virtual consultations could be a workaround)!
The haem that we recently started consulting with just yesterday kind okayed interferon in our case, but she wants a couple more things to be tested (like homocysteine and some other blood components) to make the decision.
I've also read amazing things about interferon and although the side effects can be hard, I still think we should give it a try.
Thank you so much for your help! All the best to you!
Best regards,
Dovakin
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