Waiting for Stem Cell Transplant

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

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janetgreen
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 26 Sep 2012 22:08

Hi,

Thanks for your best wishes. We had a brilliant day, the weather was gorgeous and the day went really well. We have just got back from a belated mini-honeymoon in London.

We have still not heard anything more about if a donor has been found and I may contact the transplant team to see if they have heard anything else.

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.
chris
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Re: Waiting for Stem Cell Transplant

Post by chris » 30 Sep 2012 22:17

Hi Janet

Glad you had a lovely wedding and honeymoon,

It must be so difficult waiting to hear about a donor for Ken. At least when one is found you can start to think more positively about when it might need to be done and begin to plan. Not an easy decision I am sure.

We had a very useful session at the London Forum about benefits when being treated for MDS so do speak to Sophie or a Macmillan benefits advisor to see what you might be entitled to if Ken needs lengthy time off work.

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
janetgreen
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Joined: 01 Aug 2011 19:11
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 30 Sep 2012 22:33

Hi Chris,

Thanks for that. We were sorry we couldn't come to the forum. I did look at us getting a train back down on the Friday for the day as I had seen that there was a session on benefits which would have been useful.

We have got a social worker contact through the Sheffield Hallamshire Hospital if we need any assistance.

I think it is just the waiting game that we are finding frustrating and not knowing how long in advance to plan anything.

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
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 11 Oct 2012 22:04

Hi all,

Just a quick update from us.

I had tried to ring the nurses from the transplant team at Sheffield Hallamshire hospital a couple of weeks ago and they rang back to say that they have a 9/10 match but they would be discussing whether to wait to see if there was a chance of getting a 10/10 match. I am not quite sure how good a 9/10 match is and if there are more risks if it isn't a 10/10 match

We haven't heard anything further but hopefully things are moving and we will hear something soon. Will keep you updated on any further developments.
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
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Joined: 01 Aug 2011 19:11
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 24 Oct 2012 21:33

We went to meet Dr Snowden yesterday at the Sheffield Hallamshire. We had only met Dr Dalley previously but he has now left to move back down south.

They have decided that it would be best to go forward with the mismatched donor (9/10) and have pencilled in the date of 14th December for his actual transplant with him going in just over a week before for the conditioning treatment.

I have just been reading through Brian's experiences and, of course, following Jayne's story.

I must admit it is scaring the hell out of both of us.

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.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Waiting for Stem Cell Transplant

Post by chris » 25 Oct 2012 12:56

Dear Janet

Yes, I can understand your concerns but I am sure they would not go ahead with the transplant - even with a 9/10 donor - unless the risks of the transplant were lower than those of the MDS progressing. Will Ken be having a reduced-intensity transplant? Only a week of conditioning sounds more bearable somehow?

It's going to be hard waiting but you have the chance of a cure and freedom from transfusions so, although the journey will undoubtedly be tough, the outcome will be worth it. Would the hospital be able to put Ken in touch with a local post-transplant support group of patients? If not, maybe he could get in touch with others on the MDS Forum and take away some tips for coping from them?

Also, stay in touch with Sophie who has lots of information - have you already had the Seven Steps ( can't scroll back to the first page so apols if you have already said this!)

We will all be thinking of you both so keep us posted.

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
janetgreen
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Joined: 01 Aug 2011 19:11
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 16 Nov 2012 21:28

We have had a call today and they are looking at Ken going in to start conditioning sometime in the week commencing the 3rd December ready for the transplant, hopefully the 14th December.

He has to go for another Bone Marrow biopsy next Monday (19th November) so that they can determine what conditioning is needed before the transplant.

I have also set up a CaringBridge site - http://www.caringbridge.org/visit/kengrainger
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 » 20 Nov 2012 11:41

Hi Janet

Glad that all the waiting is over and you now have Ken's treatment planned. I have been on Caring bridge and left him a message. It's a great way of keeping everybody up-to-date in a time- efficient way!! I will now have 3 people to "keep an eye on " on that site.

Wishing Ken all the best with his treatment

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
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 27 Dec 2012 22:02

Hi all,

Well the conditioning was completed on Thursday 13th December and the stem cell transplant took place on the afternoon of the 14th December. The donor comes from Canada and we can't thank him enough.

We are now on Day +13 and, touch wood, everything seems to be going quite well. Ken has had a few problems, mainly with tummy upsets.


However, he has had some good news today when Dr Snowdon came round. He has been told that he should be engrafted by the end of the weekend and that his counts have started to go up. :D

This is certainly the case as on Christmas Eve his counts were :

Hb 9.3, platelets 13, wcc 0.2, neuts 0.18

and today they are:

Hb 9.7, platelets 43, wcc 4.3, neuts 3.73

If everything keeps going as it should, it means that he could be home sometime next week.

I have not been able to go for the last couple of days and have now found out that I have got tonsillitis so I won't be able to visit Ken for a few days but at least I will be fit and well for when Ken gets home.
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.
janetstanford
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Re: Waiting for Stem Cell Transplant

Post by janetstanford » 28 Dec 2012 10:58

Janet
I am so pleased that things are going so well and in the right direction those wcc counts have more than improved please give him my best wishes :) Janet
hope you had a good Christmas (at the hospital no doubt )
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