Waiting for Stem Cell Transplant

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: Waiting for Stem Cell Transplant

Post by Jayne » 26 Apr 2013 19:57

Dear Janet

Oh my goodness, this is definitely a worry and I feel for you both. I hope you get the answers that you must so desperately want to hear quickly. The waiting must be dreadful.

Take care, lots of love to you both
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetstanford » 26 Apr 2013 20:14

HELLO Janet
sorry to hear the news and as Jayne says what a worry hope you are both coping and that he doctors are giving you the support you both need at this time my best wishes to you both and good luck keep us informed
And Jayne hello how are you hope things are good with you :) best wishes Janet
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 27 Apr 2013 13:27

Thank you Chris, Sarah, Jayne and Janet for your thoughts.

We went back on Monday for the Bone Marrow biopsy. The doctor seemed to find it hard to get any samples out and I am really not sure if this is bad or not. He also had a platelets transfusion while we were there.

They then started him on a 10 day course of GCSF injections to try and boost his counts. They didn't want to start these until after he had the Bone Marrow biopsy so that it wouldn't give any false results.

We went back for bloods and review yesterday but no results from the biopsy yet. His counts are pretty stable and slightly improved. His Hb is 9.5, wcc 1.2, platelets 34 and neuts 0.43.

He has to go back on Monday for another review so for the moment it looks like we might be back to going at least once a week if not twice. At least he looks and feels a lot better than he did last week.

We are just trying to keep going but I have got back into panic mode and need him to be more careful, especially with him being neutropenic.

Janet.
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 29 Apr 2013 21:58

Shell shocked is a word that comes to mind and not much else is making sense at the moment.

Ken and I have been back for a check up today and told that the results from the bone marrow biopsy show that it is virtually non-existent. This means that Ken has either had a viral infection which has wiped it out or the graft has failed. If it is a viral infection, then hopefully the injections will boost it and kick start it again.

His Hb had fallen to 8.7 today so he is going back for 2 units of blood tomorrow and they will do another full blood count again and then decide whether to keep him on the injections for the time being.

His wcc had improved a bit so fingers crossed that it does kick start into action again.
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Waiting for Stem Cell Transplant

Post by chris » 29 Apr 2013 22:18

Dear Janet

So sorry to hear this news. You must both be struggling with this after such a long time and going through all challenges of the stem cell transplant process. If it has failed, do they plan to try again? I hope you have some answers soon as it is clearly very difficult for Ken to have to go back to transfusions and other means of increasing the counts.

I am away soon for a couple of weeks but just to quickly respond and let you know you are in my thoughts.

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
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetstanford » 30 Apr 2013 15:32

Hello Janet
i am sorry to hear your news i really do not know what to say Ken must be stressed unbelieveable that an infection can wipe out the marrow ...i do hope tha\t the marrow grows back or that they will consider and be able to tansplant again
my last transfusion was in march and i should be on my way to the second 1 since that date but the ciclosporin is working so well and the RELIEF :) of being transfusion free is overwhelming so just the thought of having to do it all again is unthinkable :( so i do feel for Ken and to some extent can relate to his feeling on this matter
Please give him my best wishes and good luck to you both for a happy conclusion :)
Janet
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: Waiting for Stem Cell Transplant

Post by Jayne » 07 May 2013 14:59

Hi Janet

Just to echo everyone else's thoughts and comments. What a shock this must be for you both, pretty horrendous really.

I do hope that the GCSF has kick started his bone marrow.

My thoughts and prayers are with you.

Love, Jayne xxx
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 15 May 2013 21:59

We have been back to the hospital today and the counts are still holding and, in fact, the platelets are improving and are back up to 64.

The results of the chimerism test done last week is not back yet so we still don't know if it is the graft which is recovering or if it is Ken's stem cells which are growing again.

We have to go back to the clinic and see the consultant next Tuesday (what a lovely way to spend my birthday - hope we get a lovely birthday present!!) so hopefully they will have the results then.

The good thing is that Ken feels a lot better than he did a couple of weeks ago so fingers crossed.
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 31 May 2013 20:11

Ken has been back to the hospital for some lymphocytes today. With the results of his latest chimerism test 3 weeks ago showing that he is back up to 91% donor, they have decided not to give him as big a dose as they were originally going to do.

We now have to watch out for any signs of rashes or feeling queasy or diarrhea as Ken is at a greater risk of developing GVHD. If there are any of these signs we have to contact the hospital. Otherwise, we don't have to go back for 2 weeks.

His counts were really good again at:

Hb 9.5, wcc 3.6, platelets 70, neuts 2.47
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Waiting for Stem Cell Transplant

Post by chris » 01 Jun 2013 11:41

Hi Janet and Ken

That's such good news. Fingers crossed that the lymphocytes don't cause too much GvHD and improve his counts and chimerism percentage!

It must be so nice for you not to have to keep havig the transfusions.

Have a good weekend.

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
Post Reply

Who is online

Users browsing this forum: No registered users and 4 guests