WAITING FOR A BMT

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DAVE SETCHELL
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Joined: 19 Jan 2015 04:16
Location: BECKLEY, EAST SUSSEX
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WAITING FOR A BMT

Postby DAVE SETCHELL » 27 Jan 2015 01:41

Hi everyone,

I am new to this, both in understanding how I must now treat my MDS (RAEB -1), and getting used to this forum.
I have had a six month course of of Azacytidine, which made me independent of transfusion after 2-3 months, but then it stopped working.
My blast cells on the last reading were only 3% , but apparently I have abnormal Cytogenetics which need a full BMT to cure me and stop things getting worse. I have agreed to go ahead, as at the moment I need a blood top up of a unit per week to keep me between 70 and 90 RBC, and that just keeps me going , so its not a full life at all.
Presently am really worried about the BMT process. The Chemo and effects are worrying, and the T cells rejection period (100 days), let alone the months after that before ones immune system is working reasonably well seems a bit daunting.
I am waiting for a suitable donor before it all starts and I go into Kings, so have too much time to think as I am in limbo right now.

I would appreciate hearing from those who are in my position, or have gone through a BMT and can relate their experiences so I know what to expect. I think perhaps the unknown is more worrying than reality, so any help I am sure will ease my mind at this stage.

The Best of Health to all of you.

David
Scubadude
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Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent
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Re: WAITING FOR A BMT

Postby Scubadude » 27 Jan 2015 13:12

Hi David and welcome to the forum.

I'm in a similar position as recently diagnosed and likewise under Kings and awaiting a transplant. slightly different for me in that my version is RCMD, but the treatment is similar with 2 units of best red every 2 weeks and fingers crossed for the transplant.
My counts are all low, red, white and platelets, and like you the aim is to keep the red in the 80's. My blasts are about 2% i think.

It is daunting but there is a lot of support out there. Kings have a patient meeting on 9th March that may be worth going up to if only to chat to others in the same boat. Also if you use Facebook there is a very good MDS Group on there which is quite active and you may well get quicker and more replies on there than here.

Have you had info packs through from both MDS UK and Anthony Nolans? If not both are worth getting. Lots of info in them, not all of it makes for good reading but the "Next Seven Steps" book from AN is especially good as regards the post transplant period.

Hope some of that is of use to you.

Regards
Ian.
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
lucy
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Joined: 17 Feb 2009 19:52
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Re: WAITING FOR A BMT

Postby lucy » 28 Jan 2015 12:04

Hi Dave,
I've been there and got the T-shirt! Going for a transplant is rather like a leap of faith but Kings is probably one of the best places to have one. Everyone is different when it comes to how they react to the chemo ,transplant and recovery. It can be one step forward and two steps back but you will have a highly experienced team on hand to get you through it. With the recovery you need to take it one day at a time and listen to your body and take the advice you will be given. No going to crowded places for some time and making sure you are eating "clean" foods.
I had my transplant over 5 years ago and now, according to the consultant, don't have MDS anymore :D

Good luck.
Lucy
DAVE SETCHELL
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Joined: 19 Jan 2015 04:16
Location: BECKLEY, EAST SUSSEX
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Re: WAITING FOR A BMT

Postby DAVE SETCHELL » 28 Jan 2015 22:36

Thanks Ian and Lucy for your replies,

I am still trying my way with this site, and could not see how to answer to you individually, so please excuse me.

Ian, thanks for your reply. I have ordered the MDS UK patient support info pack, and will certainly order the Anthony Nolan" The next 7 steps, which looks likely in helping me prepare at this time. Hope you find a donor ASAP.

Lucy,
Great to hear from someone who has successfully gone through a BMT, and I certainly will try to take it all one day at a time. Could you direct me on the advise for clean foods, as I need to learn more here.
Your advice is greatly appreciated.

And thanks to both of you for your support, and looking forward to keeping in touch.

Dave Setchell
Russell
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Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
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Re: WAITING FOR A BMT

Postby Russell » 29 Jan 2015 20:35

Hi Dave

I fully understand what you are going through. If you'd like to chat about it then me know, I'm only too happy to do a phone call. Kings is probably the best place and they are a great team too.

Regards
Russell
[color=#0000BF]Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
Glynjo
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Joined: 20 Oct 2014 17:49
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Re: WAITING FOR A BMT

Postby Glynjo » 29 Jan 2015 22:41

Hi Dave

Understand the worry ..... I have just this week been told that I have a donor at Southampton Hospital likely to be in May / June. Donor is American. As always sensible advice on the forum from members. Worth looking at MDS Facebook page, which is a closed group and a couple of contributors are going through SCT right now!

However I do view this with equal amounts of excitement and trepidation. 7 steps is very helpful indeed.

Good Luck and stay in touch ............
DAVE SETCHELL
Posts: 3
Joined: 19 Jan 2015 04:16
Location: BECKLEY, EAST SUSSEX
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Re: WAITING FOR A BMT

Postby DAVE SETCHELL » 30 Jan 2015 00:19

Glynjo wrote:Hi Dave

Understand the worry ..... I have just this week been told that I have a donor at Southampton Hospital likely to be in May / June. Donor is American. As always sensible advice on the forum from members. Worth looking at MDS Facebook page, which is a closed group and a couple of contributors are going through SCT right now!

However I do view this with equal amounts of excitement and trepidation. 7 steps is very helpful indeed.

Good Luck and stay in touch ............


So glad you have a donor, and I really understand where you are . The best advise I have been given, if only we could do that is , ----- just take it just one day at a time ----don't look forward--- and don't look back. But so difficult when you are in Limbo.

When we are surrounded with giving caring people who put themselves out to help others, and I find it amazing.

I spent today having 3 bags of the best red at Judy Beard Ward in Hastings , and they are what I know as friends now They are a great team, and I feel so lucky.

It is quite an experience, and really quite humbling in truth, to understand that without those out there who give their blood to keep us keep going and also those who go through at least one day to give T cells to help others to live, I find amazing too.

I am not into Facebook , but perhaps I should try that, we'll see.

Either way, please stay in touch.

David
lucy
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Joined: 17 Feb 2009 19:52
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Re: WAITING FOR A BMT

Postby lucy » 30 Jan 2015 20:07

Hi Dave,
The diet you have to follow is a neutropenic diet. For instance you can't have fruit that you can't peel, no salads, no blue cheese etc etc. By day 100 I was desperate for a salad and it tasted horrible when I had one. The chemo can change your taste! It did get back to normal, although I now have a passion for cake!

Glynjo, I had my transplant at Southampton, I couldn't fault them. A wonderful team on C6. If you need any info for Southampton, do get in touch.

Lucy
chris
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Re: WAITING FOR A BMT

Postby chris » 31 Jan 2015 13:18

Hi David and Glyn,Ian and Lucy

Thanks Lucy and Ian for info and best of all the encouragement from Lucy of your 5-year survival!! That's what we want to hear! Goodness, I am a cake addict already so if I ever have a transplant I could OD!!!

In addition, see this nutrition fact sheet from this site. When you are in the most risky category, you need to follow the severe group guidelines. No sushi, raw meats/fish/eggs that aren't boiled to within an inch of their lives! I think I would go mad without fresh foods and salads but I guess the risk makes you focus!!

http://www.mdspatientsupport.org.uk/wp-content/uploads/2010/07/FACTSHEET-Nutrition1.pdf

If you want to post individuals privately, just select the PM button. It then goes via the website to the recipient's nominated e-mail account so that their and your e-mail address is still hidden.

Remember to contact Sophie for information and support too. If you van get along to the patient meetings at King's there could well be people there who are in a similar position or who have already undergone a transplant.

Hope this helps.

Chris
Chris. (F) Age 67 (2017). 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

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