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TomTom Total Reaction Points: 7
Hello everyone,

My name is Tom Lightfoot aged 61 living in Lincolnshire.
I'm due to have a transplant at St.James Leeds on the 24th of this month (In on the 14th for conditioning)
I have MDS (RAEB) Normal karyotype 10 to 20% of blast on the immuno histological chemistry of trephine biopsy. (Just copied that from the hospital notes)
Have been looking at the site all morning and everyone Is so helpful to each other so my turn now to ask you all to help me through what you've all gone through.
Obviously scared of what's to come but have to positive after reading the survivors stories on the site.
Thank you all in advance

Kind Regards
Tom

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Tom and welcome to the group. I hope you find the posts here of use and I'm sure if you've read some of the past posts you'll have noticed we all have varying experiences of transplants, some good, some bad. That's a product of the fact that we are all unique, so we all react to the process differently.

    The things that are fairly common are that the transplant itself is very straightforward and something of an anticlimax. The conditioning that they give you just beforehand kicks in a couple of days after the transplant and nobody here would deny it makes you feel particularly unwell for a time. Hang in there though because its relatively short lived and feeling better will generally coincide with your blood counts starting to show positively. From then on you can hopefully watch your counts grow to a point where you can be released home to recover maybe 3-4 weeks after the transplant.

    Recovery is a steady process that for some can be frustratingly slow and for others surprisingly quick, which is perhaps dependent on your fitness going into the process and how much you push yourself during your recovery. Personally I think I was quite lazy and spent longer than I should have in bed feeling sorry for myself. If I'd motivated myself to get up and about I feel that my recovery and regaining my fitness could have been quicker.

    After that its a case of trying to get things back to normal which does take time, but you will get there eventually. Despite having a prolonged recovery due to GvHD affecting my skin, I can now look back like it all never happened and that's 3 years since my transplant.

    I hope this helps give you a general idea but I'm sure you'll have lots of questions as the transplant grows near and as you go through the process, so we're here to help and support you along the way.

    Incidentally I know St James's Hospital very well as I spent 5 years of my working life there as a hospital engineer looking after the place!

    All the best,

    Steve
  • peterveepetervee Total Reaction Points: 156
    Hi Tom

    Welcome to the forum, I'm glad that you have had a look around the site and you are finding it helpful. We are all here to listen and to support each other if we can by sharing our experiences. Please if you have any questions get in touch.

    I had my transplant in May 2012 having been diagnosed with hypoplastic MDS in the February of that year. I was 63 at the time, working just 3 days a week and self employed. I had none of the usual symptoms and didn't feel unwell at all. I enjoyed a busy social life and went away frequently with my wife, I was reasonably fit and enjoyed walking, gardening, DIY and keeping up with the grandchildren.

    I did have an excess of iron in my blood which was managed with venesection about very 3 months, after each session a blood sample was tested. In the latter half of 2011 it was noticed that my platelet levels were dropping, further test over a couple of months showed the platelet counts continuing to drop. My local hospital in Stockport carried out a bone marrow biopsy (trephine) and sent samples to out local cancer hospital, The Christie, Manchester. The result was bone marrow failure and I was referred almost immediately to The Christie.

    At my first appointment in March 2012 I was told I had MDS and that a transplant was the only cure. At this point my platelet levels were hovering around 10 and platelet transfusions were started. We were told immediately of what we had to face, transplant, donor, chemotherapy, an awful lot to take in. Everybody was really helpful, we came away from the first appointment with lots to take in and lots of written information. To say we were in shock was an understatement. I found it hard to accept there was such a huge problem particularly as I didn't feel unwell!

    Transplant is actually painless but the recovery is slow and there are likely to be many ups and downs but by being positive and patient I'm sure you will be fine.

    Again if I can help in any way please get in touch.

    Best wishes
    Peter
  • TomTom Total Reaction Points: 7
    Many thanks Steve,
    Really helpful and I read most of your posts to people this morning giving them support and information.
    (Really kind of you)
    I spent from September until last month in and out of Castle Hill in Hull having chemo and waiting daily for the nurses to put up my daily levels, nothing better than seeing my neutrophils get to 0.5 which was my get out of jail card.
    I've two Labradors which I walk for an hour every day so they'll need me to recover quickly when I eventually come home.
    Once again Steve thanks for replying and I'll keep you informed as I go along.

    Kind Regards
    Tom
  • TomTom Total Reaction Points: 7
    Hello Peter,
    Many thanks for your reply like you it was a total shock when I was diagnosed so much so I was telling them they had the wrong notes and all that was wrong with me was I was anemic, I was walking my two dogs for an hour every day, gardening, hedge trimming etc etc.
    Even today I've cut my lawn and still walking the dogs so at present still feel pretty good but know the transplant is my only chance for a cure.
    Once again thank you so much for your kind words and support Peter it is greatly appreciated and I'll keep in touch as I go through it.

    Kind Regards
    Tom
  • TomTom Total Reaction Points: 7
    My first transplant was put back as the donor couldn't commit until the end of May so the Professor went for the second donor (still a 10/10 match)
    Had my transplant on the 29th April and apart from a terrible rash with the campath chemo everything went well just a case of getting the Cyclo Sporin levels right.
    Allowed to go home 17 days after the transplant and at the moment apart from the odd dull headaches and a few aches and pains am feeling ok, still manage to walk my dogs for 40-50 minutes a day but then need to a sleep in the afternoon just hope I can carry on feeling as good as this.
    Now wait for day 100 (August 7th) and pray it’s been all worthwhile.
  • peterveepetervee Total Reaction Points: 156
    Hi Tom

    Good news and pleased to hear that you are making progress. You certainly sound positive, do rest when you feel you need it and try not to overdo things. Don't worry if you have a bad day it's perfectly normal. Try also to be vigilant about hand cleanliness it will help to avoid any risk of catching a bug.

    I think the rash and other issues you have are to be expected at this early stage post transplant. Worth letting your medical team know when you attend for check ups. My wife used to keep a diary where she recorded daily temperatures and noted down any issues from day to day. We found it really useful when we went to clinic especially if we had any questions to ask.

    Hope you continue to make good progress, keep in touch.

    Best wishes

    Peter
  • TomTom Total Reaction Points: 7
    Many thanks Peter,
    I check my temperature daily and so far it's never been over 37.3
    My wife keeps telling me not to push myself too much and to keep washing my hands.
    I'll keep in touch over the coming months.

    Best Wishes

    Tom
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Tom, good to hear that you're doing well. I have a Labrador too and walking him each day was a good way of regain some fitness. Your wife is probably right asking you not to overdo it but it's good to build up your exercise as long as you stay within your limits and don't overtire yourself.

    I have a new outlook on cleanliness and am continually washing my hands. I think the process we've been through makes us so cautious about the risk of infection.

    Take care and please stay in touch.

    Steve
  • TomTom Total Reaction Points: 7
    Hi Steve,
    I too have had a little problem with GVHD causing a skin rash on my arms and legs but after using steroid cream it is fine now.
    My biggest problem at the moment is getting all those tablets down every day.
    The dogs help me keep as fit as i can but need to rest in the afternnon as wether it's to much walking or the tablets causing my ankles to swell and tiredness.
    Thanks for keeping in touch

    Tom
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Tom,

    That's good news that the GvHD has cleared up easily . Without any complications like that you should see the tablet count come down fairly quickly. I remember I was on about 30 tablets a day of various types when I first came home, but that reduced slowly as things got better. I was on tablets a lot longer than most though thanks to the GvHD.

    Be careful in the sun as that can cause your skin to flare up and I believe all of us are more sensitive to sunlight as a result of all our treatment anyway, so your doctors have probably already told you to slap on the factor 50 before going out in the sun.

    I used to walk my dog twice a day once I got going again, for relatively short distances. It helped me build up some fitness, but it took a long time for my legs to regain their muscle after spending so long in bed. I also felt tired and had a nap most afternoons, but in fairness I think that's normal and you will find that most people on here will be the same. It does get better in time and I'm now back to similar levels of fitness I was at before getting ill (though I was never an ironman!).

    Take care and look after yourself.

    Steve
  • TomTom Total Reaction Points: 7
    Hi Steve,

    Only problem I have at the moment is my ankles swell after walking the dogs so like you said its feet up in the afternoon and a nap.
    Yesterday at the hospital (Day 47) the registrar said my blood is now 98% of the donors so am hoping that's a good sign. He also said next week they'll start to reduce the cyclosporin (Whoopee!)

    Thanks for keeping in touch
    Tom

  • TomTom Total Reaction Points: 7
    Last Friday at my latest check up appointment (Two weeks ago I had the bone marrow biopsy)
    was told my bone marrow is as normal as it should be at this stage. No leukaemia and I'm 100% donor - and no sings of the MDS woohoo.
    Thanks to all you guys who helped me along the way now my time to help others who may need reassurance.
  • Chiara_AnthonyNolanChiara_AnthonyNolan Total Reaction Points: 8
    Tom this is fantastic news. Congratulations and thank for the update.
    British Transplant Games next year for Team Anthony Nolan?! ;-)
  • TomTom Total Reaction Points: 7
    Many thanks Chiara,put me down for every event :-)
    hoping i'll be feeling 100% then.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    edited August 2016
    Tom, that's brilliant news. It's a good feeling isn't it.

    Hopefully you can now put all this behind you and get back to your previous fitness. Next Tuesday will be my fourth anniversary since I found out I had Leukaemia and the process began to get rid. It seems to have flown by and my life has never felt better.

    I've thought about volunteering for the transplant games myself, but there isn't an event for sitting around enjoying life, which I excel at!
  • TomTom Total Reaction Points: 7
    Hi Diesel,
    I'll join you on the bench also,
    I have to say i felt so relieved when i went to the hospital after the bone marrow biopsy thinking please be alright and when she said everything is as it should be i jumped up and kissed her with tears in my eyes. Feeling good at the moment no skin problems still have swollen ankles after walking the dogs etc.
    still on 2 cyclosporin 20mg tablets a day (plus Ursodeoxcholic acid, Aciclovir, Co-trimoxazole and not forgetting my favourite Intraconazole YUK!)
    Hoping they'll be reduced as time goes by.
    At least now we can plan things for the future.
    Thanks for all your support and so pleased you are feeling so well maybe see you at the games (in the bar :-)
  • TomTom Total Reaction Points: 7
    Quick update.....Have had a few prolems with dry skin (lots of E45 Diprobase etc etc) a month or so ago which has now turned into a spotty rash can't stop scratching (skin also feels waxy) Sent pictures to the hospital in Leeds over the New Year (due to go back next Friday) They've put me on steroid tablets, steroid cream been 3-4 days now with no improvement.
    Just wondered has anyone else had similar problems.
    Tom
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Tom, the dry skin and itching sounds a bit like a mild GVHD reaction and is how mine started. It could be something else but it does sound similar to what I had.

    I found a good way to get some relief was to have a bath with some E45 bath oil in. It seems to moisturise the skin well and gives you some good relief from the itching. I ended up having a bath like that for a couple of hours every night which helped me sleep.

    Hopefully the steroids will get on top of it but if not there are other treatments that can be used.

    Let us know what your medical team say when you've seen them.

    Hope everything else is progressing well.

    Steve
  • TomTom Total Reaction Points: 7
    Thanks Steve,
    likeyou have tried everything cream wise but not E45 bath oil (used Oilatum, Aveeno with little effect)
    Even the chip fat (Hydromol) which never dries! The nightime is the worsed.
    I've put the steroids up to 30mg yesterday instead of 20mg so hoping by Friday it may ease fingers crossed. Apart from this I feel fine apart from the odd cold and cough which is nothing for what we've all been through.
    I'll let you know what they say at friday's appointment.
    Cheers Tom
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Tom,
    I am the nurse specialist in the patient services team. Just as an extra patients have said to me in the past that Coconut moisturising cream helps. Also have you taken an anti histamine for the itching? you can get them over the counter and non drowsy, if you haven't already tried it. Obviously it wont treat the cause but it will help with symptoms.

    I hope it all goes well on Friday.

    Best wishes
    Hayley
  • TomTom Total Reaction Points: 7
    Hello everyone just a quick update,

    The consultant last Friday upped my Steroid tablets from 30 to 40mg a day plus a strong anti-histamine (Fexofenadine Hyrochloride 120mg) and so far I have to say it seems to be easing.
    I go back Friday week and they’ve said they will take a biopsy if it hasn’t started to get better so I’m hoping the tablets are doing their job.
    I’ll keep you informed of the progress.
    Thank you all for your replies it’s so nice to know everyone is looking after each other.

    Tom

  • TomTom Total Reaction Points: 7
    Hi everyone just a quick update have finally come off the steroids and the skin rash is easing all the time so now just plenty of moisturising cream. Am also now down to just taking four penicillin tablets a day.
    Have also started playing walking football and enjoying every moment even though it takes a week to get over the aches and pains (but good aches and pains)
    Thanks to everyone for their continued support to me and everyone else on the forum.
  • Billie_AnthonyNolanBillie_AnthonyNolan Total Reaction Points: 8
    Hi Tom,

    Thanks for the update. It sounds like you are making great progress! Please keep in touch, and if you need anything feel free to contact the patient services team and if we can help, we will.

    Best Wishes,

    Billie
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Tom, it's good to hear from you and that's good news. I hope the rash is getting more comfortable. The walking football will be good for you to build your fitness and stamina up and keep your fitness going without being too strenuous.

    Am I right in thinking you're just over a year post-transplant? It's good to be off the medications isn't it and you've done well to be off your immuno suppression despite your rash. Due to my GvHD I was on Ciclosporin for almost 2 years post transplant and only came off them after the GvHD had gone.

    I'm also on the 4 penicillin tablets a day (when I remember to take them) and I think it's common for transplant patients to be on them for the rest of their lives. Considering the number of tablets we've all taken during our treatment 4 a day is nothing I guess.

    I hope things continue to go well and that the rash finally disappears soon.

    All the best,

    Steve
  • TomTom Total Reaction Points: 7
    Thanks Billie and Steve,

    My transplant was April 30th last year and I feel very fortunate so far that everything is going well (long may it continue)
    As you say 4 tablets is nothing to the amount we were taking not so long ago.
    I've had a few upsets just recently with feeling guilty that I'm doing ok whilst a few beautiful ladies I've met at clinic have unfortunately not done so well. I know these things happen but it still doesn't stop me feeling Why Me.

    Thanks for continued support.

    Tom
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