SCT update: I went into hospital today to start my... - MPN Voice

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SCT update

SRH55 profile image
45 Replies

I went into hospital today to start my chemo, only to be told there is an issue with the donor! Obviously don’t know if there’s a family issue or they’ve changed their mind. I knew it could happen, but doesn’t make it any easier.

Thanks for all your love & support, best wishes.

Shirley

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SRH55
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45 Replies
Mazcd profile image
MazcdPartnerMPNVoice

oh Shirley, that is a shame, and so disappointing for you, have they given you any indication as to when it might go ahead? Maz x

SRH55 profile image
SRH55 in reply toMazcd

Hi Maz,

They’ve said that if the donors issue is health related or there is a family issue it could still take place when this has be sorted out. They don’t think she will have changed her mind because of all tests she’ll have had, but obviously that can happen. They have got another donor match, but it could take 5-8 weeks for all their tests to take place. Back to a waiting game again now!

Shirley

Mazcd profile image
MazcdPartnerMPNVoice in reply toSRH55

Hi Shirely, well I will keep my fingers and toes crossed for you that she hasn't changed her mind and it's just a little delay. Maz

Cja1956 profile image
Cja1956

So sorry to hear that. It’s so disappointing when you set your mind to this and then , the plans change. Hopefully you’ll find a new donor soon.

SRH55 profile image
SRH55 in reply toCja1956

I hope so to, thanks.

mhos61 profile image
mhos61

Oh no Shirley, you must be feeling so disheartened. Let’s hope it’s just a minor issue that can be solved soon.

Best of wishes to you xx

SRH55 profile image
SRH55 in reply tomhos61

Thanhs.

Otterfield profile image
Otterfield

I'm so sorry. I understand as this happened to me - my donor got Covid and my hospital was told just as my first lot of chemotherapy was being prepared. It's very unsettling but remember it's just a temporary blip. I had to wait two months before it all started again and it will happen for you too xx

SRH55 profile image
SRH55 in reply toOtterfield

I do remember reading this had happened to you last year. It is disappointing when you’re all ready to go, just one of those things that we know can happen.

Otterfield profile image
Otterfield in reply toSRH55

SCT is such a huge thing to build up to that it's like the rug being pulled from under you. In the end my consultant was pleased that I had used my extra time to gain some weight and exercise as much as possible. The fitter you are, the better.

SRH55 profile image
SRH55 in reply toOtterfield

The nurse at the clinic told me to keep as fit as I can & to eat well, I’m definitely taking her advice, I don’t want to go downhill before my transplant.

LT55 profile image
LT55

Oh Shirley, I am so sorry. So incredibly frustrating. Hopefully this will just be brief bump in the road for you. Hugs...

SRH55 profile image
SRH55 in reply toLT55

Hugs received, thank you.

Ekkles profile image
Ekkles

Hello Shirley. I can imagine how you feel - I was due to go for the SCT today but was told on Tuesday that my donor had health related issues. It's very unsettling and I really feel for you. I have made the decision to have as much fun as possible before the 'rerun'. Had a day out in the Yorkshire Dales with hubby today.... it was grand! Onwards and upwards. x

SRH55 profile image
SRH55 in reply toEkkles

Sorry to hear the sane thing has happened to you, it is unsettling when you’re all ready to go. You’re right we must try & enjoy the time before we go in again, specially as the weather is nice at the moment.let me know how things go.

Sending best wishes,

Shirley

Maggie-ol profile image
Maggie-ol

sending positive thoughts to you and keeping everything crossed that you get a new date for the transplant to go ahead very soon

SRH55 profile image
SRH55 in reply toMaggie-ol

Thank you.

UKZA profile image
UKZA

That must be so frustrating and unsettling for you , but I am sure there will be a resolution and you will soon be happy n your way again . Take care and stay strong. Penny

SRH55 profile image
SRH55 in reply toUKZA

Thanks.

ConniesDad profile image
ConniesDad

These things happen but as Ekkles says, make the most of the extra waiting time. Keeping my fingers crossed that you get back on track soon. Garry

SRH55 profile image
SRH55 in reply toConniesDad

Thank you.

crapaud profile image
crapaud

Fully understand how you feel - I had started the chemeo when the same thing happened to me.

Luckily for me the 2nd donor was set up and the turnaround only took a month.

7years on things are going fine.

Hang in there - unwind, and ramp up things mentally again when everything is ready to go.

Take care

SRH55 profile image
SRH55 in reply tocrapaud

Glad things are going well for you now! It must have been awful to start your chemo & then have to stop it.

lizzziep profile image
lizzziep

Fingers crossed all goes well quickly 😊

Hannah2308 profile image
Hannah2308

So sorry about that, hopefully it will be back on track soon. Sending love and hugs 🙏

jointpain profile image
jointpain

Well, at least you can enjoy the rest of the summer, before being locked up in hospital ☀️🌞😁 All the best to you, and health.

Marchhare7 profile image
Marchhare7

Hi Shirley, this happened to me mine was delayed a month, my donor had a family thing to deal with but it turned out the new dates were better for me . I understand its disconcerting but take this time for self care and rest ahead of treatment . Sending you hugs

Aldebaran25 profile image
Aldebaran25

very sorry , must be so disappointing, I am sending a big, big hug ❤️

ciye profile image
ciye

What a shame, hopefully it's not a change of mind and you will be back on track soon🤗

Lilliegarden profile image
Lilliegarden

positive thoughts that things are back on track for you soon 😊

Smdg profile image
Smdg

oh no! How disappointing. I hope you don’t have to wait too long xxx

Bluetop profile image
Bluetop

Oh how disappointing for you. what a tense time for you. i do hope it can still go through.

Afya23 profile image
Afya23

Hi Shirley, sorry to hear that. Sending you positive thoughts and hoping it can still go through soon .

SRH55 profile image
SRH55 in reply toAfya23

Thank you.

ETinNYC profile image
ETinNYC

I can only imagine how frustrated and disappointed you must be. However, as a big believer that all things happen for a reason (even if not immediately apparent), I hope you're able to spend this time doing something you enjoy, and that the transplant process gets back on track soon! Sending hugs.

SRH55 profile image
SRH55 in reply toETinNYC

Thanks. I agree sometimes things do happen for a reason, although it takes time to realise sometimes!

merlisa profile image
merlisa

I hope everything goes smoothly for you, because you are my light! and I am also on the path of transplantation in the future. Additionally, there is no suitable donor in my family, and I also need to rely on fate.

SRH55 profile image
SRH55 in reply tomerlisa

I didn’t have a suitable family donor either. A transplant is such a big decision. Is your health team looking for a donor for you?

Let us know how you are getting on.

Best wishes & good luck.

Shirley

merlisa profile image
merlisa in reply toSRH55

In China, if there is no suitable donor from family, then you can apply for the Chinese Bone Marrow Bank in the hope of finding a match. Of course, this process is relatively slow, and once matched, you need to transplant immediately because the donor cannot wait for you for a few more years before donating stem cells. I haven't received a transplant yet. Although I have plans for a transplant and the progression of my condition has brought me closer and closer to the transplant, I can only bide my time.

Otterfield profile image
Otterfield in reply tomerlisa

In the UK we have the Anthony Nolan Trust. They search worldwide - my unrelated donor was found in Germany. The systems these days are very efficient it seems.

merlisa profile image
merlisa in reply toOtterfield

It may also have something to do with race. The current scope of the Chinese Bone Marrow Bank is Chinese Mainland, Hong Kong, Macao and Taiwan. Of course, if the bank can introduce personnel from East Asia and South Asia, such as Japan, South Korea, Singapore, the Philippines, and other countries, I believe the data volume may be larger.

The key is that many people still have doubts about donating stem cells, fearing that it may have an impact on their own health. Although they have been taught that donating stem cells does not pose any health risks. I really hope that the whole society can take action and everyone can have this love.

SRH55 profile image
SRH55 in reply tomerlisa

Like Otterfield says in the UK we have the Anthony Nolan Trust, the donor they have found for me is in America, but not quite sure weather I will still be able to have this donor. The donor & the recipient have to be prepared for the transplant at the same time.

merlisa profile image
merlisa in reply toSRH55

It may also have something to do with race. The current scope of the Chinese Bone Marrow Bank is Chinese Mainland, Hong Kong, Macao and Taiwan. Of course, if we can introduce personnel from East Asia and South Asia, such as Japan, South Korea, Singapore, the Philippines, and other countries, I believe the data volume may be larger.

The key is that many people still have doubts about donating stem cells, fearing that it may have an impact on their own health. Although they have been taught that donating stem cells does not pose any health risks. I really hope that the whole society can take action and everyone can have this love.

Otterfield profile image
Otterfield in reply tomerlisa

In the UK, white people have a 72% chance of being matched with a donor, but for minority ethnic people, it is just 37%. I find that incredibly sad. The Anthony Nolan Trust is campaigning hard to recruit a greater diversity of donors.

Wyebird profile image
Wyebird

oh no, sending💝💝💐💐💐

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