Stem cell match (or not)

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

Postby Jayne » 16 Jun 2011 13:36

I have just found out that my only brother is not a match for me. I am so disappointed, in face I am quite surprised by how sad I feel. I am at work but feel like a good cry which is just not like me. I know/hope that there is someone out there who will be a match and I guess the search will start in July after I have seen my professor. :cry:
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
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Re: Stem cell match (or not)

Postby janetstanford » 16 Jun 2011 19:42

sorry
i do hope they find a match and this in turn will give you hope and make you feel secure knowing that should you have a problem that there is help out there
this may sound strange but none of my siblings have been tested but a year or so ago i was told to give info i did and nothing has come of it not one has been contacted i have raised the issue a couple of times shall again on Tuesday
i know how not knowing makes feel and worry

and crying can help
take care janet
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Stem cell match (or not)

Postby Jayne » 17 Jun 2011 13:54

Thank you Janet. My Dad has taken it the worst, he is devastated by what is happening to me and sees this as another blow, I really feel sad/bad for him. He takes everything to heart and I am still 'his little girl'. I just hope I outlive him as I dont know how he would cope if I went first.
I think you should see what is happening re testing your siblings and what are their thoughts on how you will be treated in the future.
Jayne x
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 » 20 Jun 2011 13:20

Hi Jayne

So sorry to hear your brother was not a match. Though having a matched related donor is the best possible outcome and least risky, we in the UK are very lucky that there is access to larger registers of donors so you may be able to get a "good enough" match.

One thing I would say though is that a stem cell transplant is not a "walk in the park" and will usually only be done at the point when the disease itself is very serious and there are no other treatment options as the transplant itself it potentially very dangerous. It seems to be part of the medical process when diagnosed with MDS to check out early on the options for possible stem cell transplant so that they know what options are available should they be needed some time down the line. I had my brother and sister checked and was very scared when I was told this needed to be done as I felt that it meant that "they" thought a transplant was necessary and imminent. That turns out not to be the case so it could be worth having a chat at your next check up to see how likely it is in your case that this would be needed in the near future. From what you have said you seem to be quite fit and well at the moment and lots of cases of MDS are stable for a number of years so try not to get to disappointed and worried because of not having a sibling donor.

Janet - yes, you could check up on what is being done but there is a possibility that if you have low-risk MDS or other medical problems , it may not be an option for you at the moment? Best to ask?

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
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: Stem cell match (or not)

Postby janetstanford » 20 Jun 2011 15:18

Hi Chris

good to see you back on the site as i have wondered if you were well or on holiday as not seen a post from you in a coupe of weeks and i hope you are pleased with all the new posts from Jayne June john Ceejay and now Anni as we have in the past pondered on the lack of

Anyway back to the subject ...i have asked several times over the last 3 years and the doctor himself first brought up the subject of a transplant over 2 years ago but thankfully..because plates whites ect grew back but not the blood ...he said there was no need to but it would/could be an option in the future ...

the point is a year ago at my cilnic visit he was shocked to learn that at the start he had not requested blood tests from my siblings and said they had to be tested and this job was passed onto the nurse who has not completed the task :?:
as i only go to clinic every qrt it is difficult...although i have chased up the nurse to no avail i believe it is time now to discuss it with him ....then maybe just maybe my mind will be put at rest ...one less thing to loose sleep about ....

low risk yes he considers me to be although he is not prepared to do another bi-op to find this out (loose sleep again )...did this when i first joined the site with the help of sophie .....

good to hear from you take care
janet :)
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Stem cell match (or not)

Postby Jayne » 20 Jun 2011 16:09

Hi Chris - Thank you for your post. I had seen you had posted quite a lot before I arrived, I hope it isn't me keeping you away! I do hope that it is many, many years before I might need a transplant and maybe then medical science will have found an alternative, less risky option!
Janet - you really must pursue this - when are you next back at the clinic?
One thing I am pondering and will check in July is that my brothers wife is pregnant and I am wondering about cord stem cells.....
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: Stem cell match (or not)

Postby janetstanford » 20 Jun 2011 16:33

JAYNE

I AM AT CLINIC TOMORROW :o AND I SHOULD BE TYPING OUT MY LIST OF QUESTIONS INSTEAD OF BEING ON THE SITE :lol: NEED TO GET SORTED...AND CORD STEM CELLS YES A LOT BEEN IN THE PRESS LATELY COUPLE OF WEEKS AGO ARTICLE IN DAILY MAIL AGAIN
GOOGLE ..PITY GOOGLE COULD NOT CURE MDS :roll: :lol:
BACK SOON
John Watson
Posts: 11
Joined: 12 Jan 2009 10:12
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Re: Stem cell match (or not)

Postby John Watson » 20 Jun 2011 16:39

Hi Jayne
Really sorry to hear your brother is not a match for you, he is probably very upset not to be able to help (I know this was the case with my older brother).
My daughter enquired about cord stem cell donation but it seems only one or two Hospitals are able to collect/store them.
Fingers crossed and keep strong
John
56yrs, diagnosed 2008 MDS - RCMD, neutropenia, anaemia and platelet clotting problem (aggregation). Currently taking Aranesp EPO weekly.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: Stem cell match (or not)

Postby janetstanford » 20 Jun 2011 17:47

JAYNE /JOHN
do they not collect and freeze mainly used for leukemia sufferers as can be transfused
easy to find out i am sure

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

Postby chris » 20 Jun 2011 21:59

Hi to Jayne, John Janet and others who have posted- (the 3 Js sounds like something from Enid Blyton - Jayne probably too young for that reference!!!). Have been away and busy on the allotment recently hence the lack of posting and anyway, I was very glad to see all the responses as for a while I really thought it was only Janet, Bronte and me out here!!! Yes, lots of views but not many responses but so glad to see a lot of people coming on and giving their experiences and reassurances.

21 months on from my diagnosis and here are a few thoughts gleaned from hours looking at research papers, MDS websites, webinars and generally putting my brain into overdrive!

1. MDS is a hugely variable disease.
2. Trying to compare notes with people who have different types of MDS is like comparing whooping cough to acne. Even if they have the same clasification, there are huge variations depending on chromosome results, different stages, personal levels of health, age and other illness.
3. Don't get hung up on the numbers from blood counts. Some people can be exhausted with much higher levels of haemoglobin than others (and men and women have different thresholds). Some people can succumb to infections with higher levels of neutrophils than others. Dittto low platelets and haemaorrhages/ bruises.
4. Being on "watch and wait" isn't necessarily a bad thing - even though not being treated may feel "hopeless and passive" to some people. Sometimes doing nothing can be better than doing something which gives worse side -effects than what is being treated! Being on watch and wait usually means you are not experiencing enough "bothersome" symptoms (as Dr Chris Dalley from Sheffield so clearly puts it) to warrant interference.
5. Try to find out your classification of MDS and your chromosome results as at least that will enable you to ask about/ find out your risk score and you can then make contact with the people in the same MDS boat.
6.Do everything you can to keep fit and healthy because, even if it doesn't stop your bone marrow from doing silly things to your blood cells, it will help your body deal with it better.

Hope all goes well tomorrow Janet and that you get your questions answered about the tissue typing.

Jayne - Are your white cells/neutrophils OK? You seem to have given Hb and platelet results in the Hello section so I presume white cells are fine?

My brother is a match but frankly I am hoping I don't ever have to cash in his donation!!! I have told him not to take up dangerous sports!

best wishes to all

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

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