I have been diagnosed with ET November 2011 and been on Hydroxycarbomide ever since, on different dosages and Aspirin on different dosages. I am doing well at the moment. Praise the Lord.
Reading and following comments and questions from other MPD's patients with different experiences and also from patients who had SCT's and feeling better or healed after SCT. My question is how come we all just go and get SCT and get healed or better instead of going on and on with treatments, medicines that can make us even more sick, but not cured???? Why do we have to wait to the last situation that there is no other answers, or treatments that can work or may not, and we get to very bad stage then they decide to go with SCT. Why is that???
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I cant answer that from a medical perspective but only my experience of discussions and presentations at patient forums. The impact of all three Myleoprolific Neoplasms, ET, PV and MF, can be mild or severe and often can be controlled by drugs so that individuals can live out normal lives or with varying degrees of disruption.
MF can run for many years with limited impact but also move quite quickly and SCT is the only potential curative option. SCT is a very demanding process on an individuals general health and still risky with a 60% success rate, with the risk of treatment mortality and relapse both at 20%. It is not suitable for all and offered to those who meet certain criteria, Some are offered but choose not to have SCT because of the risks.
So it is very much what is best and most suitable for the individual rather than a blanket approach.
Thank you all for your kind and very informative answers. However, even though it is rather important to have individual approach I like to believe that there is a hope for all of us if not at this present moment but in very near future. I was hoping for some answers from medical professionals, who can put some prospective on and the light on new developments and cures for al of us.
During my time with the disease/transplant I have been to a few presentations including a whole day in London where Claire Harrison had some of the world's leading specialists presenting to 200+ patients. Things are undoubtedly moving forward as more is learned but there are no potential cures yet, just better drugs to control the symptoms. If you would like better info' then I suggest one of the following:
1 Attend an MPDVoice event. there is one in Cardiff 4th October and one in London in November.
2. Get a second opinion from a specialist where you can ask more detailed questions.
3. Seek out a website called MPNForum where you will find a number of articles by patients with varyiing MPN diseases, but more importantly for you a patients online clinic where you can ask questions that will be put to several leading MPN specialists on your behalf. However, the responses are published monthly when the magazine is issued.
SCT is Stem Cell Transplant - or Bone Marrow transplant. As stated above this is still a very risky procedure with significant mortality and morbidity and is offered to patients in whom the risk of disease is greater that the risk of the procedure - I have read it is recommended only when life expectancy is less than five years according to internationally recognised prognostic tools - and then only when the patient reaches certain criteria. The risks of living with ET/PV are considered to be way below the criteria for STC so it is not used. Many people with ET/PV will live out their lives and die of something totally unrelated to their MPN and would therefore not even contemplate the risks of SCT.
That's what is so good about this MPD Forum; good, sound, solid, friendly, comforting..... the superlatives are endless but thank God we can all learn and take something from what is said/written.
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