Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011, I live just outside London. I do buddying for MPDVoice and have just taken one buddy through transplant and have two more heading that way. Thanks to the internet I have MF-BMT friends around the globe at varying stages, pre and post. Planning to be at Cardiff to chat to anyone who is interested.
Chris MF Apr 2010, BMT(SCT) Feb/Mar 2011
Hi, I was diagnosed with PMF in Jan 2009 and a transplant was discussed. I suspect that since they have me under control (!) it is not on the radar at the moment.
Good to hear from someone who has had the procedure and feels able to assist others.
Tombs - you need to know what your status is so you can be in control of your own destiny with advice from the specialists. I was intermediate risk 2 with a prognosis of 2-8 years, median 5 survival (beating the hell out of eight months my first hem gave!!) and could have waited a few years but chose to go for the transplant while in reasonably good health and strong enough to tackle the transplant. I know others who have lived with MF for many years and continue to do so. It s a very personal decision but understanding the detail will you decide when the time comes. Chris
My partner was diagnosed with MF in May 2011 and had a stem cell transplant on May 24th. He has only just come out of hospital having had a major infection in July which put him into Intensive Care. It is therefore nearly 3 months on. He needs blood every week and platelets twice a week. White cell counts still only just over 1. As the cyclosporin is reduced we wait for GvH to hit. Unfortunately he will not go onto this website, or talk to anyone because I think it would do him good to talk to someone who has come through. Are your counts now relatively normal and stable? Are you still prone to infection?
CAD
I am fine and describe myself as the MF-BMT tart who will talk to anyone! 
my counts are normal, HGB 15ish, Platelets 100ish (lower than normal as I am still on some anti-pneumonia drugs that suppress platelets) WBC and Neutrofils in normal ranges too. I did have parainfluenza in the early days and then some reaction to reductions in cyclosporin that put me on steroids but am fine at the moment. I am hoping to start (I want injections?) my childhood jabs in September. I avoid anyone with a cold and children, and will do until I have had my jabs. Happy to talk with you or partner. Chris
Please be my tart! I would like to talk to you, either via email, telephone, or in person as we both live in London (west London in my case). My partner too managed to find the wonderful Clare Harrison who referred her to Royal Marsden and at last gave him some hope for the future. But three months post-transplant and a spell on life support is making it all rather bit fraught. He absolutely refuses to speak to anyone about this, or to research it on the Internet. I have found myself making decisions for him and following his treatment in minute detail. It is a complicated subject and I am just starting to understand blood counts etc. How do we get in direct contact - if you want to that is. Christine
Best offer I have had today! Of course I will. It is probably best if we make contact via Maz and the MPDVoice buddy system. Chris
Tombs - you need to know what your status is so you can be in control of your own destiny with advice from the specialists. I was intermediate risk 2 with a prognosis of 2-8 years, median 5 survival (beating the hell out of eight months my first hem gave!!) and could have waited a few years but chose to go for the transplant while in reasonably good health and strong enough to tackle the transplant. I know others who have lived with MF for many years and continue to do so. It s a very personal decision but understanding the detail will you decide when the time comes. Chris
MFBMT2011 - Thanks for the comments. I am due to see the Specialist in 2 weeks and intend to enter into a detailed Q & A session with her. This doctor is from Argentina and certainly is more well-versed in the world of MPD's than most of our own.
Tombs - I have been communicating with an MF patient who lives in Argentina for the past two years using a web site called MPDChat and got the distinct impression that they were trailing behind the US and Europe, which would not be suprising for any country, but that doesn't mean individuals would be and you have probably found a good one. Dont be too hard on local Haematologists, the trouble with MPDs is their rarity. My first local consultant hem covered an area with several hundred thousand people and had just 5 MF patients. She knew of drugs and transplant but would recommend neither. Once diagnosed you need to move on to consultants and there are a number spread around the country in specific hospitals available on the NHS. MPD Voice used to have a list so you might like to ask Maz. I was lucky to see Claire Harrison who is one of the leading specialists in the world and also a thoroughly nice person.
Yes, list your questions and tick them off as asked. I always went with a backup, my wife, so we could compare notes afterwards as often there is just too much info' coming back at speed to register everything. Good luck.
MFBMT2011 - I am already registered under the care of an MPD Specialist based at Christie's in Manchester. His last opinion was to monitor reaction to Alpha Interferon, which has been quite successful, and leave consideration of BMT until absolutely necessary. I haven't experienced any Spleen issues yet, just fatigue / headaches, etc.
Ay up MFBMT. . . . Great to hear from someone with a positive outlook and who has undergone a successful BMT. Good for you to be buddying coz im sure your support is invaluable. As ive said in previous posts I have PMF 6 yrs and my biggest issue is just what you identified in that I want to be fit and 'healthly' and strong enough to undergo and give myself the best chance of success. Yeah ok I have a reasonable quality of life at present but it could be better as I am struggling a tad and it would be good to get on an even keel. Waiting for a downturn in the condition to force the BMT issue prevents me from planning so Im leaning towards your preferred option,, , and then on bad days when the dark clouds descend I think sod it I wont bother at all and that'll be the end of it. But thats just me maudling and feelin sorry for meself. Anyway Im hoping to see my hem soon instead of a trainee/registrar and ask some pertinent questions. Cheerz for now
Hi, Jedi.... I know a number of MF people who are positive about their transplants and met plenty in clinic who had had transplants for all sorts of illnesses. I know one Canadian who has just celebrated his 20th anniversary of a BMT for MF; done when the medical profession knew far less than they do now. I will always be completely honest and I do know a couple that didn't make it through the process, but that is the risk we all know about. Doing nothing has a definitive outcome too.
MF can move slowly or quickly, and sometimes take what I call a sharp left turn as happened to one of my buddies recently who was on a Jakafi trial. She is now safely through transplant. I chose not to wait as my spleen was a few fingers below my rib cage, which is how I found I was ill in the first place, and my HGB was between 8 & 9.
I learned about BMT on the Internet as the only potential curative option on my day of diagnosis and that was where I wanted to go. I couldn't find anyone to discuss this with apart from the medical profession and that is why I talk to people now. I was lucky to get in contact with Claire Harrison for my second opinion and she said I should consider transplant and I nearly took her arm off.
Good luck with your hem. Chris
Hi, Jedi.... I know a number of MF people who are positive about their transplants and met plenty in clinic who had had transplants for all sorts of illnesses. I know one Canadian who has just celebrated his 20th anniversary of a BMT for MF; done when the medical profession knew far less than they do now. I will always be completely honest and I do know a couple that didn't make it through the process, but that is the risk we all know about. Doing nothing has a definitive outcome too.
MF can move slowly or quickly, and sometimes take what I call a sharp left turn as happened to one of my buddies recently who was on a Jakafi trial. She is now safely through transplant. I chose not to wait as my spleen was a few fingers below my rib cage, which is how I found I was ill in the first place, and my HGB was between 8 & 9.
I learned about BMT on the Internet as the only potential curative option on my day of diagnosis and that was where I wanted to go. I couldn't find anyone to discuss this with apart from the medical profession and that is why I talk to people now. I was lucky to get in contact with Claire Harrison for my second opinion and she said I should consider transplant and I nearly took her arm off.
Good luck with your hem. Chris
Thanks for your reply and for your honesty. . .Always the best way coz theres no point putting the difficult stuff well to one side. Alot of my current discomfort / pain is due to my enlarged spleen which I heard my GP say to a student who I agreed could cop a feel - they're always guys tho so Ive asked for ladies next time - perv lol that it was 7 fingers below and that was a while back. My hem touched on having it removed if it got too big but Im a tad clueless on what Id decide to do in that event. A good mate unfortunately passed away last year but he also had a BMT 20 odd years ago for Chronic Myeloid Leukemia and he was a source of inspiration. As is a local singer joe longthorne who had a german donor and he's still performing. My donor will be my kid sister as long as we dont fall out beforehand. . Anyway as I say cheers for blogging your views and for sharing some of your experiences. Must pop now and swallow them daily drugs. . .
Hi
We've just been told on Monday my husband would benefit for a BMT .
It's hit us really bad as we know it's not a plain sailing journey.
My husband is 46 and both financially and mentally he's just not ready for this.
He said he would rather go onto ruxlitnib for a couple more years this way he will have finished his contract have money beging him to take a year off work have no work worries and mentally it will be a lot less worry for him.
Was your transplant journey as bad as you thought it was going to be?
Also what was your recovery time?
I would be grateful if any advice
Tracey
In answer to your questions I was retired so didn’t have the challenge of returning to work. I know someone who did and can put you in contact with them, in Malta! Although I suspect it would be at least a few months (3-6), the risk of infection remains as one’s immune system is so low and that can lead to illness and more time recovering.
It is a challenging process and parts really are unpleasant but knowing what is coming makes it manageable. Some sail through it. General good health going in is important too.
It had its risks too as not all get through it successfully although some because they leave it too late.
I have friends who have left it for a few years, I could have left it but chose not too. I also have met some who have been told to go immediately. Be guided by your doctors they know how the disease is progressing.
Rux (jakafi)tackles symptoms not the onset of the disease and doesn't work on everybody. One of my buddies had to come off it quite quickly after a short time and go to SCT, others have been on it for a few years. However, it is widely used now.
Quick response as going out. Happy to chat to you both if it helps to answer questions
Chris
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