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MDS Worry

Hello every one
This is the first time Ive written any thing on the forum
I will give you a brief history of my battle with Cancer.In 2015 I was diagnosed with T lymphoblastic lymphoma
This has now been eradicated with no signs of the original disease.But the treatment has left me with MDS
which I am told will need to a stem cell transplant.I am a 61 year old male who feels fit and well Just very low blood counts
I have had meetings with my consultant to disscuss the transplant For me and my wife it was all a blur as the statistics that were quoted were very pessimistic 30%mortality risk when having a transplant 50%chance of a relapse and 20% likelihood of medium to long term disease free survival
I am so worried about all this is there any one out there who has been in the same situation
Thank you for taking the time out to read this
Best Regards to all out there
John

Comments

  • Hello John. I am sorry to hear your news. I’m sure you’re still trying to get your head round what’s happening to you. I can really empathise though as my MDS, (which I had had for 8 years) transformed to AML in Spring 2015, when I was just short of my 62nd birthday. I was otherwise in good health. My transplant clinician wanted to discuss survival rates etc, but I said I didn’t want to know. After all I felt the outcome for me and my family was pretty much either 0% or 100% and of course that may be the same for you. The induction and conditioning treatment before my unrelated donor transplant in October 2015 were undoubtedly sometimes ‘challenging’ though the care and support I received was fantastic. However now, 2.5 years on, I am pretty well and my quality of life is good. I am not as strong or fit as I was pre-transplant (though getting older all the time) but the decision to go ahead with the SCT was definitely the right one for me.
    With best wishes for whichever treatment route you decide on.
  • Whoops. Just done my maths!! Just short of my 61st birthday. Haha. Old brain!!
  • Hello Meerkat
    Thank you so much fro your comments. As its good to get some positive feed back
    As you say it might be better not to look at statistics. jump in with both feet an have a positive attitude.
    You also seem to have become a year younger ha ha (which can't be bad)
    Once again thank you for taking time out to comment
    John
  • Hello John

    I completely understand and you are not alone, most patients are given very similar odds and frankly it's frightening and sobering. I had AML and was originally given a 20% chance, then having a transplant 50% but my consultant emphasised to me not to focus on the stats. Number one, the first stat includes all those who sadly aren't diagnosed in time so by being alive and in the consultants office I was already giving that 20% the 'two fingers' (so to speak)

    What I am hearing is that you are feeling fit and well, which is fantastic as you are in an excellent starting position. The stats are important to understand the gravity of the situation but after that it's about focusing on the plus points. Good luck

    Rachel x
  • Hello Rachel
    Thanks for the comments.
    Just wondering if you went ahead and had a stem cell transplant ,if so how did it work out for you
    Regards
    John
  • Hello John

    I did go ahead and have the stem cell transplant. I'm two years post transplant and have pretty good health and quality of life post transplant. I did /do have some GvHD however it's been managed well and is now minimal.

    Best Wishes

    Rachel
    Gabby
  • Hi John,

    I needed a bone marrow transplant five years ago after several relapses for non Hodgkin's lymphoma. The statistics given to me were 30%, 30%, 30% but the alternative given to me was approx 2 years survival with palliative care so I felt there was no choice. I was 58 but, like you, in good health apart from the obvious problem - a big plus as Rachel says. No donor could be found so I needed a double cord blood transplant. The recovery was very slow but I am almost back to normal, with a bit of gvhd but no relapses. I feel the risk was well worth it.

    Wishing you all the very best,
    Sue
  • Hi John,

    I have a similar story to yours. I developed MDS in 2014 after successful treatment for AML. It was a real bolt from the blue as I felt really fit and well at the time. I had a stem cell transplant in 2015 with my brother as donor. Unfortunately in December 2016 I found out I had relapsed. DLIs were tried as a salvage therapy but these didn't work and I developed AML again in May 2017. After more chemotherapy I was lucky to achieve remission and was eligible for a 2nd transplant which took place in August 2017 with an unrelated donor this time.

    The statistics are frightening but try not to focus on those, they are only statistics and not specific to you as an individual. As the old saying goes 'there are lies, damned lies and statistics'. Someone has to be in the long term survivor camp so why shouldn't that be you? Stay positive - easy to say I know - but I believe this attitude has got me this far.

    It sounds like you are fit and well and the moment and that should bode well for the transplant experience if you decide to go down that route. I found the transplant experience first time around relatively straight forward. I worked hard whilst in hospital - did exercises, went out for a walk daily (initially in the hospital corridors in the evening and then outside) etc and was soon back to my normal self. My therapy when I was discharged was my bike and three months after transplant I was riding 150 miles a week. Second time around it was a lot tougher; mainly because I lost 20kg during the chemo (which I didn't have to lose). I couldn't even stand up long enough to have a shower initially. I'm now 9 months post transplant and although I am still weaker than I remember and haven't recovered all of my weight (I'm about 6kg lighter).

    You will find this site a very valuable resource and I'm sure most of your worries will have been addressed on here somewhere. The 7 steps is also a very good read.

    Did your consultant give you any timeframe in terms of life expectancy without transplant and which category your MDS was? You could always adopt a watch and wait approach but of course there are risks with this as your MDS may progress to AML or there could be another complication which might mean you aren't eligible for transplant. I was given about 18 months prior to my first transplant so for me there was no choice. It was a risk I had to take.

    Good luck with the decision making and the transplant if you decide to go down that route.

    Rob.
  • Hello everybody
    A big thank you for your support.It has taken some of the worry away.Its good to know there are friends out there.

    Dear RobA
    The Counsultant told me if I was to have no further treatment a life expectancy of three years.
    Reading the Consultants letter its queted intermediate-2 on the IPPS (what ever that means).
    My son has been tested and today the results said he is half match.
    I am now waiting for the next step forward Which I am not sure what that is
    Its frustrating for me at the moment as I feel so fit and well.
    The wife and I are trying our best to carry on as normal.
    But theres always that elephant in the room.

    Well good people I thank you for taking time out to answer my questions.
    The comments and insight in whats a head are greatly appreciated


  • Hi John,

    I'm just catching up on this after a few days offline due to an office move at work. I'm one of the online community champions and here to help however I can.

    I don't think there's much I can add to the discussion, and Rob's post is perhaps very useful to you as someone who has been in the same situation.

    What I can add is to reinforce your observations as to the value of this forum. We are all either patients or relatives of patients who have or are going through transplants. We are all different but we have much in common as no matter what blood cancer or disorder we have (I had ALL) the procedure for a stem cell transplant is much the same. It is generally our bodys reaction and our recovery that can differ from person to person.

    There are so many members on here now that there will be somebody out there who has experienced the things that might happen to you post transplant and will be able to support you through any issues you might have, but we all have a good understanding of what a transplant involves and we are all here to support you through the process.

    Please keep in touch through the forum as things progress and we will help and share our experiences to support you throughout.

    All the best,

    Steve
  • Hi Steve
    Thanks for the comments
    Yesterday I was told my son was a halfe match after he had a blood test taken.
    What will the next step be in regards moving forward towards a stem cell transplant .
    As i have been told that the hospital will be in touch.
    But obviously I am anxious both for my son and myself
    Once again thank you for joinig the disscusion
    Regards John
  • Dear John

    My name is Hayley and I am the lead nurse in patient services, I am sorry that you are in this difficult situation, the response that you have received i am sure will help you feel supported.

    In response to your last post regarding your son's half match. This means that he can be a haploidentical donor. However usually the transplant consultant will look at other donor options such as sibling and unrelated before deciding on who would be the most suitable. I would suggest that when you next see the consultant you ask if this is the case and if so what donors are available. This will then give you and your son an idea of what the next steps will be. There is more information on our website on the different types of donor/transplant https://www.anthonynolan.org/patients-and-families/order-or-download-publications

    Unlike acute leukemia's you do have time to really think everything through and feel prepared. Although it seems strange to need such an intense treatment when you feel so well, being fitter is an advantage going in to a transplant.

    Please keep us updated.

    BW
    Hayley
  • Hi Hayley
    Thank you for your comments.
    I will be taking your advice and will speak to my Consultant on Monday.
    We have looked at my brother and sister who are also half matches There ages being sixty five and sixty seven
    So I think they favour my 23 year old son.
    I have a rare tissue type there is no unrelated donor out there at the moment.
    My only symptoms at the moment are low platelets
    On Friday I am going in for a blood test and will let you know what there are.

    It is so much appreciated that you have taken the time out to join the discussion.
    Especially with your back ground Its good to know that the questions worrying me can be answered

    Hope every one has a good week end
    Thank you my friends John
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