Awaiting BMT

Post here for ANY bone marrow transplant related issues

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Rak

Re: Awaiting BMT

Postby Rak » 28 Jun 2014 16:37

Hi Molly,

Thanks for your post.
The chemo wasn't too bad. Now it's the waiting game for the counts to recover for a couple of weeks then the more aggressive conditioning regime before the cell infusion.

Thanks for your wishes. Off to watch the Brazil vs chile game.

Regards,
Rak
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: Awaiting BMT

Postby Russell » 31 Jul 2014 21:49

Hi Rak

How are you, how are things going?

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!
Rak

Re: Awaiting BMT

Postby Rak » 22 Aug 2014 20:33

Hi guys,

I'm back in Addenbrookes after recovering from DA chemotherapy. Came back few days earlier than was due for the transplant
Due to the dreaded high temperatures.
Thankfully the temperatures are under control and I've started my conditioning regime. I've had 4 days of fludarabine,cytarabine and amsacrine and now on my last rest day. Effects of the chemo not too bad, just feeling drained and washed out. Tomorrow I start on Busulfan then ATG( rabbit ) for the last 2 days before cell infusion. Has anyone had any experience with ATG and possible side effects??
Looking forward to the cell infusion towards the end of next week then hopefully onwards and upwards.

Regards,

Rak
Rak

Re: Awaiting BMT

Postby Rak » 30 Oct 2014 14:53

Hallo,

So I had my transplant end of August. The cell infusion was bit of an anticlimax. The new cell counts were slow to come by because of a nasty fungal infection. Eventually they discharged me early October with neutrophils above 1. The counts were steady for the first few weeks then started dropping on a daily basis. Currently the neutrophils and WBC are flat and needing regular blood and platelet transfusions.

My consultant broke the news last week that my graft had failed and I need top-up donor cells. As a family we were heartbroken and devastated by the news. Apparently it was mainly due to my significantly large spleen. They are now suggesting low dose radiation and mild chemo before top-up infusion.

I am nervous about the prognosis of this second attempt. Has anyone been through the experience of low dose radiation and top-up cell infusion?

Still trying to stay positive but it's getting harder and harder.

Rak
MollyP
Posts: 71
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Awaiting BMT

Postby MollyP » 02 Nov 2014 17:02

Hi Rak
Sorry to hear things haven't turned out well. I don't have any real advice I can give, sorry, but I wanted you to know I am thinking of you.
My husband was on the chemo tablet Hydroxycarbamide earlier this year and I can report that they were effective and he didn't feel too bad on them but I don't know what sort of chemo they might give you for where you are now at.
Keep you chin up and we are all always here if you need us.
Love
Molly
Xxxxxx
*** *** *** ***
66 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Aug 14 w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Awaiting BMT

Postby chris » 12 Nov 2014 11:12

HI Rak

So sorry to hear about your setbacks. From other posts on this forum and various blogs, I think that donor lymphocyte top-ups are often needed so I hope that will be successful and that anybody else who has had this experience will get in touch with you. It must be hard to keep on an even keel mentally while this is happening but do ask for any support you need at the hospital and maybe talk to other patients who are going through the same procedure.

As Molly says, do continue to post as people "out there" are thinking about you and wishing you well.

Kind regards

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal 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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