Polycythemia Vera enlarged spleen treatment

Hi Lou,

I missed your original posting but would add your experience with Hydroxycarbamide mirrors my own use of this drug.  I am a long-time sufferer and was prescribed HC for a very long period and like you, was obliged to cease taking this medication which was replaced with Ruxolitinib (Jakavi) which I have now been using for almost 3 years.  I found that with HC, it was quite positive for several years usage but like all drugs the effects wore thin and I needed larger doses to maintain effect.  These larger doses eventually caused havoc with me resulting in the transfer onto Jakavi which took some time to settle but now after 3 years usage it has really become effective.  My blood tests have for the past year been at normal levels and I have recently learned that during the past two years or so, since stopping HC, the anaemia with which I had become infected was now reduced to a borderline situation and expected to improve to normal levels again.  I have not experienced any problems so far with the spleen which is stated to be in good shape and positively treated by Jakavi.  My dosage of Jakavi has been reduced to a very low level now for at least six months and the Haematologists see no reason for this to change.  I don't know how long you have taken Jakavi but it has taken a considerable time for it to counteract the issues I had with HC, and bring about a great improvement in my well being.  My Haematologists are very pleased with the outcome.  For your information, I queried the use of Ropeginterferon which is prescribed in UK but restricted to those with PV only.  Jakavi is the preferred drug for ET and MF.  These drugs are expensive to supply and normally only prescribed when existing treatments with HC can no longer be used.  I suggest you might need a longer time with Jakavi before you can feel its improved effects.

Best wishes.

Peter.

I appreciate your response. It does appear that Jakavi is the best choice for me at this point. It’s actually what’s prescribed for an enlarged spleen. 

I have had a bone marrow biopsy, and have recently received the results. My PV has progressed to MF. Am currently awaiting an appointment with the transplant doctor to determine my candidacy for a bone marrow transplant.  I’ve been informed that my life expectancy is 3-10 years depending on treatment, transplant success and general health.

So glad to hear that you’re well controlled.

Thank you for your response.  I expect you will have investigated the transplant issue if you are considering this avenue.  I have no personal experience of this but have discussed the matter at some length with my consultant Haematologist.  I understand that this procedure is not for the faint-hearted or the elderly (60 or over) and is seriously considered even for the young.  The younger the better.  I too have trodden the path from PV to MF and encountered the life expectancy outlook as has been outlined to you.  I have been knowingly affected by PV etc. for some 20 years now and have come to realise that i was affected for at least a similar time prior to the diagnosis.  I take things as they come these days but with Jakavi I feel I may have a new horizon considering the benefits it has provided.   There is no doubt that HC had spent itself out for me.  I did in fact participate in the drug trials for Jakavi but received the placebo (HC) which was the best available treatment at that time but of course, it just compounded the issue as far as I was concerned - more of the same.  The rest is history.  I am aware that there are one or two others contributing to this forum who could say more about the transplant issue but it would be interesting to hear your comments at the appropriate time.  I wish you success in the days ahead and hope everything goes well whatever you may decide.

Peter.

I have been down the MF, AML and transplant road and am now nearly two years post transplant at the age of 65.

I am happy to answer any questions as honestly and as fully as I can, within my experience, but I am not going to tell you how you feel or what you want, nor will I quote text books at you. If you want my thoughts and experience then please ask, but as stated in peter98873’s post it is not the path for everyone and if you do go down it then you will require help and support.

I somehow think that what is currently a longish thread may grow to be enormous, (just like a spleen) so might I suggest that you start a new thread?

ItchyChris

Your reply to Felicity was very suitable and informative.  I agree with your comments but would add that following many years of HydroxyCarbamide treatment I was obliged to forgo this treatment due to some very severe side-effects which have left their mark.  On being prescribed with Jakavi my consultant Haematologist advised me that although no cure was represented by the new drug it did however have much better retardant values in dealing with the spleen and other PV/MF symptoms and I feel this has been borne out by the subsequent tests I have undergone.   Jakavi is no panacea for a cure but I have found it more comfortable to live with.  It is still a newish drug and time will tell just how effective it will prove but after 3 years of usage it has not shown any kick-backs.  My spleen is checked monthly and so far no troubles have been revealed.  I note your personal comments about its possible developments, thank you.  Trust all is well with you.   Kind regards.

Peter.