Waiting for Stem Cell Transplant

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

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chris
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Re: Waiting for Stem Cell Transplant

Post by chris » 31 Dec 2012 12:26

Dear Janet

Oh, it's so great to hear this good news about Ken. His counts sound amazing already and I hope that the side-effects of the infections can be kept at bay.

Look after yourself too as you need to get rid of the tonsillitis before you see Ken again and before Ken returns home as he will still be very vulnerable to infections - even with that whopping neutrophil count!!! It will be a while before he is out of the woods but let's hope this 100 days passes without event and that he can look forward to an MDS-free life afterwards.

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
Sarah Reakes
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Re: Waiting for Stem Cell Transplant

Post by Sarah Reakes » 31 Dec 2012 13:26

Dear Janet (Green),

What fantastic news to learn that Ken has had his Stem Cell Transplant and all seems to be going well. It really is amazing to think that he has progressed so far since you posted in August - this must be the best Christmas Present you could both wish for. As Chris says, his blood counts sound amazing, but I do understand it is early days, but those 100 days will soon pass, if Jayne Snell's Journey is anything to go by.

Hope you get over your tonsillitis soon and as Chris says, try and take care of yourself. If you don't already, suggest you take extra strong doses of Vitamin C to boost your immune system. This wet dank weather really doesn't help when there are so many winter bugs around.

Kind Regards

Sarah Reakes
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.
janetgreen
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 23 Mar 2013 19:37

Hi everyone,

Sorry for not posting on here for a while.

As I am sure you can appreciate, we have been quite busy with hospital visits over the past couple of months or so.

Ken is doing well, it is Day +99 today so the big one tomorrow!!!

He went through a bit of going back into hospital after first coming out on New Years Eve. This ended up being because of a bug in his Hickman Line so that was taken out on the 10th January and, since then, he has been a lot better.

We are still waiting for his latest chimerism test as the one that was done around Day 34 showed he was 96% donor. He also had a bone marrow biopsy done last Wednesday for his 100 days and hopefully we will get the results when we go back to the clinic on the 2nd April.

It is 10 weeks since he had to have a blood transfusion. However, his Hb has dropped to 7.9 and he is feeling a bit tired so he is going on Tuesday for a couple of units. Other than that his counts are quite good.

I hope everyone is having a good 2013.

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
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Re: Waiting for Stem Cell Transplant

Post by chris » 25 Mar 2013 12:41

Hi Janet

Thanks for reporting in! I have been following Ken's transplant on his Caringbridge blog so I was glad that you are bringng everybody up to date on this Forum. He must be so relieved not to be having the frequent blood transfusions and I hope the bone marrow biopsy was not too bad and that the results are good when you go in on 2nd April.

Did you break out the champagne for his 100th day birthday yesterday! You've both been through a lot and we all wish you well.

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
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Re: Waiting for Stem Cell Transplant

Post by janetstanford » 25 Mar 2013 15:19

Hello
Congrats on his 100th birthday i being tra\nfusion dependent really is so happy that he is off that regime i can relate to what must be his sense of freedom :D not being in the cycle of up down and here we go again .....that by the way is how best and the short way of describing how i feel about transfusion dependency
Thanks for the compliment of Chris and i are a support to others thank you as you may y have read i was told at the start of this i had MDS then he disagreed and said aplastic anemia (2 years ago ) and now finally after a bi-op i have officaly got red cell Displaysia ( hope that does not change :o ).....So guess i am the same but different mind what a lot i have learnt :)
I have just started treatment and so far so good my bloods have gone from 105 -112-116 and if all goes to plan this will be my first 4 weekly cycle of NO TRANSFUSION i really am in a world and panic of my own ...Yes Chris the focus is on those numbers again
well again congrats and best wishes :D celebrate in style
Janet x
janetgreen
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 19 Apr 2013 21:44

Today has been a bad day. Ken has not felt right over the last few days and yesterday was trying to do a few things and couldn't get his breath.

He has been quite pale and has had a bad headache but had also started where his fingers were going white and numb. Last night his heart was pounding and his chest felt tight. He actually admitted that during the night he was scared to go to sleep in case he didn't wake up.

I phoned the hospital this morning and they asked us to come in. They did an ECG which was normal so that was a relief. They also did some blood tests but the doctor knew he needed some blood.

The doctor came back a little while later to say that he was being emergency admitted as his Hb was very low.

So he is now back on P3 at the Hallamshire hospital waiting to have at least 3 units of blood. However, Dr Stute has been round and they are quite concerned as all his counts have dropped and they need to find out why.

His counts are:

Hb 5.0, wcc 0.6, platelets 32, neuts 0.16

They are having to do another bone marrow biopsy on Monday to try and find out what is happening. It may be donor or it could be GVHD.

To say we are very worried is an understatement.

At the moment, we are not sure if Ken will be in all over the weekend or of they will let him come home after the transfusions and then back on Monday for the bone marrow biopsy.

We will let you know as and when we know any more.
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
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Re: Waiting for Stem Cell Transplant

Post by chris » 20 Apr 2013 13:08

Dear Janet

So sorry to read this. No wonder Ken was feeling so unwell and fearful of his heart with such a low Hb. With such low counts all round it must be a worry that the graft is not working as it should. Hopefully, the bone marrow biopsy will show what is happening but that is a lot of waiting for you both. Also hope that he did not have to stay in over the weekend but he must be feeling quite anxious after his experience.

Thinking of you both

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 » 20 Apr 2013 21:31

Thanks Chris, yes it is a very anxious time.

However, Ken has come home today after having 4 units of blood. We have to ring first thing on Monday morning to find out a time for going through for his bone marrow biopsy.

His counts this morning, which was before his last 2 units of blood were:

Hb 7.2, wcc 0.5, platelets 24, neuts 0.17
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 » 22 Apr 2013 20:47

Hi Janet

Ken must be feeling so much better with his Hb increased. Hope that the Bone marrow biopsy went as planned today and not too uncomfortable for him.

Take care both of you.

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
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
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Re: Waiting for Stem Cell Transplant

Post by Sarah Reakes » 24 Apr 2013 20:13

Dear Janet,

Have been reading your postings and am so sorry that Ken has had this set back. I hope that you have had a date set for the BMP to get to the bottom of the problem. Hope Ken feels better after his 4 units of blood and that he has had some relief.

Will be thinking of you both and hope it is a temporary blip.

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.
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