Stem cell match (or not)

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Jayne
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Joined: 16 May 2011 11:33
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Re: Stem cell match (or not)

Postby Jayne » 21 Jun 2011 10:23

Hi Chris

Fab post. I was an avid Enid Blyton fan when I was younger. I have tried to get my kids to read her books and they think they are boring!! It really must be a generation thing! I also think of the Janet and John stories that Terry Wogan used to read, I used to be crying with laughter at some of those!

My white cells are fine, although they are at the bottom of the normal range.

I also agree re the levels of Hg, I seem to be able to carry on as normal with a level of 8.9, yet some need a transfusion, so it really does differ.

If I am honest I am really trying to avoid having a transfusion. The reason for this is that I want to be 'me' when the time comes for a transplant. This is nothing medical it is just how I feel. I am also wanting to avoid having a transplant for as long as possible. I want to go another 3 years at least as this will be the end of my childrens high school education. I know I have no control over anything but I want to avoid the transplant for as long as possible, and I really, really hope that by then there will be something else for me instead. I believe there are around 400 clinical trials taking place at the moment and maybe (fingers crossed), there will an alternative treatment that is less risky.
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.
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Stem cell match (or not)

Postby chris » 21 Jun 2011 14:01

Hi Jayne

Yes, those Wogan Janet and John stories (not the Janet and John on this site hopefully!!!!) were hilarious. Don't know how he got away with it on the Beeb!! Bit like Humphrey Lyttleton's double entendres on I'm Sorry i haven't a Clue - a real purveyor of Blue Chip Filth!!!

If you listen to those AA webinars, in the States they use Azacitidine very widely and with good results and, as you say, there is research going on all the time into the genetic components of MDS. My Prof was very excited at my appointment last week about some recent research into genetic mutations in CMML (sort of what I have!). it's a long way twixt reseach and effective treatment but we will just have to hang on in there won't we?

Am quite sure you are in good hands and unlikely to be treated unnecessarily as they will have the possibility of a stem cell transplant to consider and nothing done should hazard the outcome of that.

Recently heard of a young lad (21) who had Aplastic Anaemia and had a stem cell transplant at Kings with donor cells from a 9/10 matched unrelated donor from Germany and he is doing fine. And the main thing, Jayne, is that you are young yet so a lot of time to safely have a transplant. I was concerned as I was 59 when diagnosed and thought that I had missed the Stem Cell boat (should I want to catch it!) but my consultant reassured me that I was "biologically" young.... I think that might have been a compliment!!! Ooh, you are awful... but I like you!!! (sorry, that's Dick Emery!!)

best wishes
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
janetstanford
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Joined: 01 Nov 2010 17:54
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Re: Stem cell match (or not)

Postby janetstanford » 21 Jun 2011 19:00

Hi Chris / Jayne

I agree at times we can be hung up /focus on 1 symptom of mds the one which effects us the most such as low bloods which lead to transfusions or low white cells which lead to more infections....but some of us are in the infancy of "mds " this may be at the start or some where in the middle of it after either or recovering from 1 illness we all cope with and learn about an illness in different ways and at different times.....
because all types of mds differ i do not believe one way does not suit all

Chris you certainly research and look into mds a lot....
Jayne 400 trails very interesting
and Chris the janet and john comment little embrassing :oops:

Janet
anniec
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Joined: 10 Nov 2010 21:06
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Re: Stem cell match (or not)

Postby anniec » 21 Jun 2011 22:27

hi all, and Jayne, my daughter had a baby(first grandchild 2 years ago) she asked about saving umbillical cord for others use but told that it would cost her about £2000 to have it stored, my other daughter and niece had babies this year and were also told that the hospitals (grimsby and manchester) did not do it. seems rather sad but maybe costs to much to store. It seems such a shame, I think my hubbys case is probably different to most being secondary, as our haemotologist worries that it could turn to AML again and a second time would be very difficult to treat. x
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: Stem cell match (or not)

Postby janetstanford » 22 Jun 2011 08:26

Hi Anni
my daughter is now 16 she was born in the r.v.i hospital Newcastle at the time i donated her cord/stem cells research was going on into stem cell use headed by Dr Proctor .... I can imagine that it is expensive to store but you would think this would or could be a shared cost by all hospitals within a certain area ??? at what cost not doing this as i am sure as research shows more results and uses for cord stem cells some will be kicking themselves that they have not joined in the race (so to speak) to help lead the way

such a shame to waste of what could be a possible cure :(

JANET
Jayne
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Re: Stem cell match (or not)

Postby Jayne » 22 Jun 2011 09:53

(Janet, it was me that first made the J&J comment, I am sorry if it embarrased you, it wasn't meant too!)

From what I understand two hospitals do take umbilical stem cells - Leicester (I think) and another but cant remember.

When I was talking to my professor about finding a match he said they would search the UK banks and Anthony Nolan and also the umbilical stem cells that are donated, if my brother wasn't a match. So there are some that are collected and available to us by some very kind donors through the NHS but only at these two hospitals.

You can store the babys stem cells privately, I understand it is around £1500, these are then stored for your own use for 25 years. If you want to store longer you then pay yearly at a cost of £50. I was talking to my Mum about this and I said it's all well and good, but when you have children you are usually not that well off to be able to afford £1500, my Mum then said she agreed but there was always the Grandparents! Hindsight is a wonderful thing.

If I had been lucky enough to know this I would have stored my childrens for them, just in case they ever have something wrong with them, god forbid.
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.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: Stem cell match (or not)

Postby Jayne » 23 Jun 2011 11:54

This is a message for Chris and I'm not sure if I should have created a new post...

Regarding the young man who is 21 and just had a stem cell transplant at Kings from a 9/10 donor.

How do you know about him? I dont know why but I would like to know how he progresses. Are you able to keep me informed please? 21 is so young. I feel like I want to go to the hospital where he is and will him on and help him fight to get better, lol. He has been on my mind since you wrote about him. I think the reason why is because I had a bit of an email exchange with Shirley Bulloch (google her, her story is a good one), and she said she was in touch with a young lad in the UK, I cant remember if she said he was 17 or 21, but nevertheless it is good to know you have support and people thinking of you, even if you have never met.

Thank you
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.
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Stem cell match (or not)

Postby chris » 23 Jun 2011 12:43

Hi Jayne

Well, I only know about him because my hairdresser is aware of my MDS and requirements re avoiding infections and possibility of me possibly having a stem cell transplant and it just happened that the young man in question worked at the salon at the time of his diagnosis and is also the son of some friends of hers so she knew I would be interested. A different diagnosis (Aplastic Anaemia) but he was very very ill and stem cell was the only hope for him I think. So it is very, very third hand but she told me he was doing OK for the first 100 days which is somewhat of a milestone for this procedure but then got some graft vs host disease so is back on the strong immunosuppressants again. He is out of hospital but still very fatigued and needing to avoid infections etc.

When I hear stories like that and also the young South African girl who posted on this site (I'll send you a link if you really want to read how tough it has been for her) and with whom I corrresponded for a while, it makes me feel very selfish to be moaning about this illness when I at least have had 58 years of excellent healthy life, a wonderful husband, good jobs, nice holidays and raised 3 amazing "children". On the other hand though, I must confess to getting irrationally cross and impatient with older friends in their mid/late 70s who are bewailing their mild heart condition etc and say they want to live to see their grandchildren married and with kids and I feel I want to say "Hold on there. Don't be so greedy. I haven't even got grandchildren yet and you're likely to outlive me by about 15 years!!!".

Maybe that is one of the benefits of this site? I'm sure we have all "got in a state" about MDS and feared the worst but there are so many others with very high risk types of MDS (and other diseases) who are feeling really ill each and every day, so maybe those of us not at that stage, yet -or ever maybe, need to be glad of having had a sort of wake-up call and try to get the most out of every day.

Here endeth my current philosophical approach!!!

Will have a look for Shirley Bulloch. If you wanted to know more about Stem Cell transplant, Sophie has a publication called The Seven Steps (check other posts about Stem Cell transplants as Sophie put the link in somewhere) or you can download it from, I think, Leukemia and Lymphoma Society website. JGI ( Just Google It!)

Bye for now

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
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Stem cell match (or not)

Postby chris » 23 Jun 2011 13:11

Hi Jayne and all

If anybody wants to read the journey of a very brave young lady from South Africa, called Simone, diagnosed at Bart's with MDS about 18 months ago while she was in London for a gap year, here is the link. Her first posts were on this site - look for Simz. We should all be so grateful for our wonderful free healthcare service - even though it struggles to cope with the onslaught of sick people -many of whom are there increasingly because of their own "lifestyle" choices (having been riveted to the A & E programme on King's Hospital for the past few weeks!). Can you imagine having a diagnosis of a serious form of MDS and having to fundraise for each and every procedure including blood tests,tissue typing of potential donors when you have no sibling match and of course finally the stem cell transplant and aftercare!! Not least a 12-hour drive to your nearest centre of excellence. And when you are feeling so ill and having constant infections.

http://simzblog.info/

It's really uplifting. She is now 6 months post transplant and not out of the woods yet.

Best wishes

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

Re: Stem cell match (or not)

Postby Jayne » 27 Jun 2011 17:08

Hi All

I haven't posted for a while because I have been busy reading Simz blog. Wow, what things she has endured and what an inspiration.

I have been constantly drawn to her blog. I think she is a beautiful lady.

On Friday I saw 3 photos of her, she looks gorgeous in all of them. There is one where her hair is wavy and down to her back, and one where it is in a really stylish blonde bob just before treatment and then one where she is by the sea and in a lovely floaty dress, with a scarf on, a lovely statement ring, large sunglasses and no hair whatsoever, I think she looks so beautiful. So I decided to show my daughter, BIG mistake, she was really upset. I suppose I should have thought about this because all along she has been upset about the possibility of me losing my hair. The first thing she asked when we explained my illness and possible treatment in the future is would I lose my hair and I said yes I would. She said, "oh but Mummy you have beautiful hair and you always do it nice". I wanted to show her that Simz looked beautiful in all 3 and therefore there is nothing to worry about. Regardless of her initial response I am still glad I showed her because hopefully she will go through a 'thought process' and realise what I was trying to say and show her.

Anyway, must dash - my car is at the garage and they close at 5, and it is now 10 past. aggghhh, I really should allow myself more time!!
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.

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