bone marrow transplant

Post here for ANY bone marrow transplant related issues

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Neil & Julie
Posts: 2
Joined: 20 Nov 2009 22:10

Re: bone marrow transplant

Post by Neil & Julie » 22 Nov 2009 17:04

Hi Terry & Jules
Just a quick note as I'm halfway through doing Sunday dinner. Really good to meat you on Friday, we both wish you and Julie well and are interested in following Jules story as my Julie will be following the same route hopefully in the New Year once here condition is a bit more under control.

Hi to everyone else from Friday, we both found the day very useful and an ideal forum to get more info and meet othes in similar situations, one which we all wish we wern't in but have to get on and fight the fight.

Best wishes to all, must go now or dinner will be burnt.

Neil Harrap
Rebecca

Re: bone marrow transplant

Post by Rebecca » 27 Nov 2009 23:43

Terry/Jules
I havent logged on for a while so just seen you are in hospital. I hope you aren't feeling too bad and make a speedy recovery. Can't imagine how you are both feeling. Thinking of you.

My dad is going in for mini BMT 25th Jan at Kings. His blasts have dropped from 10% to 4% so thats good.

I hope you don't experience too many problems from the transplant and I wish you back home soon.

Take care both of you and let me know how you its going

Rebecca
Rebecca

Re: bone marrow transplant

Post by Rebecca » 27 Nov 2009 23:43

Terry/Jules
I havent logged on for a while so just seen you are in hospital. I hope you aren't feeling too bad and make a speedy recovery. Can't imagine how you are both feeling. Thinking of you.

My dad is going in for mini BMT 25th Jan at Kings. His blasts have dropped from 10% to 4% so thats good.

I hope you don't experience too many problems from the transplant and I wish you back home soon.

Take care both of you and let me know how you its going

Rebecca
jules
Posts: 30
Joined: 13 Jan 2009 18:02
Contact:

Re: bone marrow transplant

Post by jules » 02 Dec 2009 17:12

Hi all, just to let you know that I left hospital last friday which was day +16 which was very good. I have had a couple of bad days and one going back for a blood test which is why its taken me so long to get onlne. but so far so good I hope anyone else has this kind of luck. I was given some good advice Sleep and heal. the best advice ever
keep smiling, (sorry if this very short i am not too great at concentrating yet, very tired) jules x
chris
Posts: 612
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: bone marrow transplant

Post by chris » 02 Dec 2009 18:12

Hi Jules
Steve and I met Terry at the Cambridge Forum a couple of weeks agoa and I have just joined the Forum. Having followed your experiences on the Discussion Forum, I am so pleased that you have now left hospital and doing well. It is very encouraging to those of us who have stem cell transplant as a possible treatment solution in the future. I have been diagnosed with CMML -I and am currently waiting for tissue typing results of my brother and sister and keeping my fingers well crossed.

Does anybody know if members of the public can access stem cell transplant success rates by hospital as I think that info would be very useful to me in choosing where to be referred. I know that Kings has just done its 1000th one so thjere is clearly a lot of experience there but its the success rate I would be interested in - not necessarily the raw numbers !!

Continue to sleep and heal and , when you've done that, have a little rest !! Also treat yourself to some lovely food and take it easy.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Helena
Posts: 1
Joined: 06 Dec 2009 18:14

Re: bone marrow transplant

Post by Helena » 06 Dec 2009 18:29

Hello Nigel (and other posters!)
My husband was diagnosed with CMML in July, had a BMT at Kings on 10th November after sequential chemo (a truly dire experience) and came home on 17th November. I know that serious fatigue is part of the deal but I've also heard from King's team members from time to time that it's important to do some exercise. My question is how much should I be encouraging him to do right now? At the moment he doesn't get out of bed for anything other than visiting the bathroom or going to Kings for blood tests etc.

I have no idea whether I should just let him rest as much of the time as possible or whether I should be encouraging a few minutes exercise each day or what exactly?

Any advice would be very welcome.

Helena
Neil & Julie
Posts: 2
Joined: 20 Nov 2009 22:10

Re: bone marrow transplant

Post by Neil & Julie » 15 Dec 2009 20:20

Hi Helena
Was he really out in 7 days? My wife(Julie) is also CMML, currently undergoing interim treatment to reduce blasts, prior to BMT. We were told to expect 6-8 weeks in hospital. I/we would be interested to know more about your experience, Julie is hoping for BMT March/April 2010 after being cancelled in November. She has a match with her sister. We wish you well and a spedy recovery for your husband.

Neil & Julie Harrap
nigem
Posts: 13
Joined: 04 Jun 2009 15:11
Contact:

Re: bone marrow transplant

Post by nigem » 17 Dec 2009 23:04

Hello Everyone,Its good to hear about your experiences. My husband has CMML and has just had a provisional date of 2nd Feb for his BMT at Kngs, following 4 rounds of Azacetadine. Any advice about practical issues would be appreciated as I am now trying to get my mind around it. We don't live near London either, so I am wondering about accomodation near Kings. How long is an average stay and am I correct in thinking that he will need to have outpatient appts frequently after his 'release'?
Rebecca

Re: bone marrow transplant

Post by Rebecca » 05 Jan 2010 22:16

Hello
Jules - I hope you are still recovering well after the BMT.

Nigem - my dad is also going to kings for reduced intensity bone marrow transplant with a provisional date of 25th Jan 2010. I
I'm not sure of places to stay around that area, don't think there are many hotels closeby but I might be wrong. Sorry mot much help. Maybe I'll see you at Kings?? I can give Sophie the patient liasion my mobile number if you want to call me at anytime whilst you're there at the hospital. If you feel like it. I'm 31 yrs just to let you know.

Starting to feel worried about the transplant, my dad is 65 but in pretty good health apart from MDS. I just want to be positive for him so he isn't so scared. What can I do to help him anyone??!!!

Rebecca
jules
Posts: 30
Joined: 13 Jan 2009 18:02
Contact:

Re: bone marrow transplant

Post by jules » 06 Jan 2010 12:12

Hi everyone,
It is pretty scary stuff all I did was try to focus on the end result which is the future. At the point of intense chemo I didn't own my head it had been taken over, you may find that your dad becomes almost zombie-like as he may only surface to eat or use the bathroom. He is still in there but so suffocated by the drugs he may not seem like him. He can't help this and he will return. The best piece of advice that I was given is SLEEP. As much as you can which will allow your body to cope.

There are a lot of out-patient appointments but they are necessary. I was taken in by ambulance on christmas eve for a 24 hour stay as I couldn't stop vomiting (not how we had planned xmas). It is a day at a time thing from when you are admitted initially until I don't know when.

They are however pleased with my progress and I don't think I'm unusual so fingers crossed for you guys

keep smilin, Jules x
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