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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Waiting for Stem Cell Transplant

Post by janetgreen » 01 Aug 2012 20:18

Hi,

Although I have been a member on the site for around 18 months, I haven't written about exactly what my partner, Ken, was diagnosed with just over 18 months ago.

Ken originally had a really bad pain in his side in March 2010. As a result of this he was referred to the hospital, which is when they first realised that he had a low hemoglobin count, although we weren't aware of this at the time. He was put through further tests and nothing could explain this low count. Eventually he was referred to Haematology at Doncaster Royal Infirmary. They arranged a Bone Marrow Biopsy which is when we found out that Ken had MDS with 5q- and deletion of chromosome 12. He started having regular blood tests in January 2011 and would generally need a blood transfusion every 4-6 weeks. Around September 2011, he started to require blood transfusions around every 2 weeks. We went to see Prof Bowen at Leeds in May 2011 and he really explained MDS so that Ken could understand. However, we decided that we wanted to see Prof Bowen again in February 2012 as we were concerned about how Ken was feeling and how often he required blood transfusions. Again Prof Bowen went through all the options and this is when a stem cell transplant was first discussed.

We went to see Dr Dalley at Sheffield Hallamshire hospital to talk about the stem cell transplant. As a result Ken had another bone marrow biopsy done which showed further genetic changes with the emergence of deletion chromosome 13 and other additional changes. As a result of this we were recommended to go for a stem cell transplant and they are now in the process of searching for an unrelated donor match with a view to proceeding to transplant in the autumn of this year.

Sorry that this has been a bit of a ramble but as you can imagine a lot has happened in just over 18 months. I read around the subject quite a lot but Ken has found it very hard to come to terms with this as he has never been ill in his life.

That's all I will say for now.

Janet

_________________

Partner of Ken who is aged 56. He was diagnosed with MDS (refractory cytopenia with multi-lineage dysplasia associated with 5q- and deletion of chromosome 12) in January 2011, blood transfusions every 2 weeks. After recent bone marrow biopsy in July 2012, also has deletion chromosome 13. Waiting for stem cell transplant before the end of 2012. Live in Barnsley, South Yorkshire.
janetstanford
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Re: Waiting for Stem Cell Transplant

Post by janetstanford » 02 Aug 2012 14:07

Janet

dont be sorry we all go at our own pace and deal with issues in a different way your husband sounds similar to me low bloods and transfusion dependent so i am aware of how he feels and what he has to deal with
i am glad that you have finally been able to post about your husbands condition and that in its self is a mile stone which i am sure will help
good to hear from you Janet :)
chris
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Re: Waiting for Stem Cell Transplant

Post by chris » 04 Aug 2012 11:26

Dear Janet (Green!)

Janet's right. It does sometimes help to get it out "on paper" as it were. Hopefully, you wil have read Jayne's posts on this site and maybe also have read her blog on Caring Bridge (Jayne Snell)? She has gone through a similar journey to your husband,Ken, and also has the same consultant. (Prof Bowen). Jayne has just had her stem cell transplant and,again, it was all a bit of a whirlwind from diagnosis of what seemed like a low-risk MDS into stem cell transplant, following an increase in blast count earlier ths year. She is very inspirational, as is John Watson who is at a similar stage. Both their blogs are on Caring Bridge so I would urge Ken to read them.

Have you been in touch with Sophie, the MDS Patient Liaison person? She will be able to send you information about stem cell transplant and answer any questions you may have about MDS.

I presume Ken is now seeing Dr Chris Dalley? He came to speak to the London MDS Forum a couple of years ago. He gave a very informative talk about MDS and I think we were all so impressed with his thoughtfulness in answering the subsequent questions. Ken is in really good hands so I hope that is a comfort to you both.

MDS diagnosis is such a shock and all the more so when you have always enjoyed good health. For some reason, that seems to make the diagnosis worse with a huge sense of unfairness and anger - a lot of us know how that feels so we can really sympathise with you and Ken at this time.

Let's hope that a donor can soon be found and that the process of a cure can begin.

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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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 04 Aug 2012 21:55

Hi Chris and Janet,

Thanks for your messages, it means a lot.

Chris - I haven't talked to Sophie but Dr Dalley explained everything in great detail and I have read things on here and the internet.

Janet.

_________________

Partner of Ken who is aged 56. He was diagnosed with MDS (refractory cytopenia with multi-lineage dysplasia associated with 5q- and deletion of chromosome 12) in January 2011, blood transfusions every 2 weeks. After recent bone marrow biopsy in July 2012, also has deletion chromosome 13. Waiting for stem cell transplant before the end of 2012. Live in Barnsley, South Yorkshire.


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janetstanford
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Re: Waiting for Stem Cell Transplant

Post by janetstanford » 05 Aug 2012 18:30

Hi Janet
you mention in your post your husband had a pain in his side odd question i know but which side and did this conected to his diagnosies of is it a symptom did he get an explantion off the doctor for it

Janet
janetgreen
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 05 Aug 2012 21:40

Hi Janet,

The pain was in his right side and although we have not had this explained, since his diagnosis and subsequent blood transfusions, he has had no repeat of this pain. I have read on other sites that other people have had similar pains so I am not sure if it is related or not.

Janet.

_________________

Partner of Ken who is aged 56. He was diagnosed with MDS (refractory cytopenia with multi-lineage dysplasia associated with 5q- and deletion of chromosome 12) in January 2011, blood transfusions every 2 weeks. After recent bone marrow biopsy in July 2012, also has deletion chromosome 13. Waiting for stem cell transplant before the end of 2012. Live in Barnsley, South Yorkshire.
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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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 05 Sep 2012 17:51

Well we went back to clinic on Tuesday 28th August and the process of finding a suitable donor is progressing. The tissue matching team have some requests out for further blood tests. They estimate that we will be looking at mid-October at the earliest for a possible stem cell transplant.

That's really all that is happening at the moment apart from Ken having his blood checked every 2 weeks and usually (although not this week for a change!!) requiring 2 units of blood.

Oh yes - we are getting married this Saturday!!
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.
Sarah Reakes
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Re: Waiting for Stem Cell Transplant

Post by Sarah Reakes » 05 Sep 2012 21:07

Hello Janet,

I've just been reading your postings and the replies from Janet and Chris who are always on hand offering helpful advice as usual; they are the Forum's guardian angels for all those who post the first time and are in need of some practical and emotional support, and offering support thereafter when needed.

It's so reassuring that things are progressing for Ken's Stem Cell Transplant in finding a donor and as mentioned by Chris, Jayne Snell's Caring Journal will I'm sure give you both hope for a good outcome.

I also just want to add my Very Best Wishes to you both for a very special and happy wedding day next Saturday and I hope the sun shines on you as you both deserve it!

Take Care.

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
janetstanford
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Re: Waiting for Stem Cell Transplant

Post by janetstanford » 06 Sep 2012 08:53

OH I was surprised how lovely your getting married on saturday i believe the sun will shine and temps will be up to 28c depending on where in the country you are i do hope you have a fantastic day and the transplant is moving forward which is good news but here is to saturday congratulations :P
Janet
chris
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Re: Waiting for Stem Cell Transplant

Post by chris » 06 Sep 2012 21:02

Hi Janet

Hope that Saturday is a great day for you and Ken. Enjoy!!!

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
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