Awaiting or considering or had a stem cell transplant, a place to share here

Going through treatment
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Hi @Summertime, I’m so sorry that you are still in hospital you must be so unbelievably fed up with it all. Now covid to add to the mix :confounded:. Hope the antibody treatment works well. I think it’s pretty effective and if you have to get it at least its now and not this time last year, when the special treatments weren’t around.

My back was damaged by the myeloma cells, it leaves holes in the vertebrae which isn’t great but I have infusions every month to strengthen the bones so that’s something I guess.

I remember when I was in hospital I occasionally locked myself in the bathroom and had a quick cry, it relieved a bit of tension on the very low days. There are so many people thinking of you, we are all with you in spirit. Keep going I can definitely see a chink of light at the end of the tunnel. :hugs::hugs:xx

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I hope your back’s getting a bit better, @Lyn99. Back pain gnaws at you, and must be so hard to tolerate long-term.

Gosh, your comment about going to the loo for a cry, made my stomach lurch. The tears we have secretly shed in hospital, huh? The anguish and suffering these blood cancers bring… X

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I’ve not logged in for a while (helping out elderly parents) and just read this thread. Oh @Summertime my heart goes out to you and when I read that you had tested positive I thought this is just outrageous as you are having enough suffering just now. I’m glad the hospital gave you antivirals and hope that you are still asymptomatic. Oh yes, I remember those tears in the loo and you have been in there a looooong time (the hospital, not the loo - sorry) and I so hope that you will be able to get home for Mother’s Day. Even if you have to go in for daily checkups there’s nothing like your own bed and you absolutely deserve some good news.xxx

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Hi @summertime
Just wondered how you are? Hope the covid is retreating. Thinking of you and wishing you well :hugs:

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Yes @Summertime I was also wondering how you were doing ?? Stay good x

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Continuing the discussion from [Awaiting or considering or had a stem cell transplant, a place to share here](Awaiting or considering or had a stem cell transplant, a place to share here

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Hi everyone, hope all is well.
Update of my leukaemia life. I should have had my stem CT in November but went

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Sorry- continued
Went into full remission. Doctors had meetings about my situation and asked for outside help from a known specialist at Birmingham. All agreed I have a high chance of relapse.
They have looked into my blood history. I am coeliac so could see back in May 2019 I had Myelodysplastic syndrome (MDS), a rare blood cancer which can develop into leukaemia which obviously it did. All consultants now agree I have secondary cancer with a higher risk of relapse.
I have agreed to Stem CT and at end of last meeting I was asked about any other health issues. I thought these hospitals spoke to each other and uploaded your medical situation onto NHS number and history.
It was discovered last year I have a growth on my thyroid. On hearing this the consultant said we cannot go to Stem cell transplant with this outstanding. Things moved apace and I had 1/2 my thyroid out yesterday. I am in bed posting this.
My Stem cell transplant has stalled twice and it makes you wonder is a higher energy trying to tell me something ie don’t have it. Obviously like everyone about to undergo Stem cell transplant I am anxious.
Would be grateful for any thoughts

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Hi @Bees

I’m sorry you’ve had delays, discussions, ops and so much to worry about. I hope you are taking it very easy and that you make a quick recovery from the thyroid op.

I unknowingly had Myelodysplastic syndrome (MDS), which then became Acute Myeloid Leukaemia. Apparently, this can make the Acute Myeloid Leukaemia harder to treat. When I was advised to have a transplant, I was told by the transplant consultant that a stem cell transplant was the best treatment for acute leukaemia possible, but they could not offer it to everyone unless they were of high risk of relapse.

You’re asking us what we think, but really the opinion that matters is the expert opinion - and that’s your consultants. And they have unanimously said - with outsider expertise brought in too - that you need this transplant because you are likely to relapse. Perhaps try not to be concerned by the delays - transplants are often delayed or postponed (mine was) but this is not an ominous sign for you to cancel the transplant - many things get delayed in the NHS, unfortunately, because of various pressures on services and logistical issues.

Are you thinking you might have the transplant should you relapse? If so, perhaps discuss this with your consultants, because there may be factors which could prevent you having a transplant in the future eg. age, general health. And a relapse might also affect whether they can offer then offer you a transplant.

It’s your consultants’ opinions which matter. I hope you feel you can talk to them and ask them as many questions as you need to? It’s part of their role to answer patients’ questions, so never be afraid to ask.

However, it’s also your decision, @Bees. If you don’t want to go through more treatment, you don’t have to. It’s your body and your life. Just be sure to understand the likely outcomes should you make a decision which goes against your doctors’ advice.

Good luck with your decision-making, @Bees, and I’m sorry you’ve had such a difficult time. I can understand why you’re anxious about the transplant- it’s a worrying thing to undergo in any circumstances, but especially if there has been debate, other health issues thrown into the mix, and delay after delay. I’d be feeling very anxious too.

All the best to you.

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Hello @Bees, wishing you a speedy recovery from the removal of half of your thyroid. My friend is waiting for a similar operation which seems big enough of itself without other major decisions to be made. I hope that you will recover well first of all and that the way ahead for your Acute Myeloid Leukaemia treatment will become clear.

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Hi @Bees gosh you have a lot going on.
As others have said it is your medical teams opinions and thoughts that are important to hear.
Perhaps make sure you write down everything you want to ask.
As you quite rightly say your medical team should have your whole medical history to hand, but early on I was advised to take responsibly for my conditions.
Therefore I ensure I always have my medical history, family history, my medications, anything I might be allergic to, etc. etc to hand at appointments.
You must be anxious, the unknown is scary, also waiting is never ending.
You have had an op yesterday on your thyroid so please look after yourself and be kind to yourself.
Please keep posting how you are.

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Hi Ashob,
The nursing staff shaved my head at my request whilst I was in hospital (my own clippers I took in with me).
They had to check my platelet levels before shaving my head but I had already discussed this in advance with my Macmillan nurse who told me a couple of nurses on my ward would help me when I explained I planned to do it myself.
It was a relief once the hair had gone as at this stage my hair didn’t feel like mine anyway, just felt limp and dry. Pleased to report now fully grown back.

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Thanks very much for that Deborah. Hope you are doing well now x

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Hi
I was in a similar position, had Myelodysplastic syndrome (MDS) but wasn’t detected until it was Acute Myeloid Leukaemia last July. After several hiccups with donors (I was difficult to match) I am now in hospital for the transplant, my daughter is the donor in the end. It is scary but I started conditioning yesterday and all is well so far. I trust that the medics know what they are doing, hope you’re recovering from the surgery and you get good advice for the future.

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Gosh @Suey it’s really happening now, please keep posting how you are getting on.
It must be scary for you, but we are here for you.
Look after yourself

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Hi All

Well finally got home Monday afternoon. I was so happy to see my home and of course hubs.

I woke up at 4 had a small bleed and stupidly went back to bed. Next thing I knew beds was soaked in blood, pumping out , so scary. Poor hubs called 999 And they blue lighted me back into Addenbrookes.

Mattress, carpet all next replacing due to the blood loss. Very, Rey scary, I thought I was on my way to another world. Anyway they got me here and got me stable and I am now stuck on the covid ward.

They were treating me for Graft-versus-host-disease but have now decided it’s not that but an open bleed somewhere. They are referring me to a gastric surgeon to see what they suggest. Have t had anymore bleeds so far.

The covid arc say I shouldn’t be on this ward as I am green now having been positive for 13 days but my consultant is saying he can’t move me as I might still be infectious to other vulnerable patients.

I can go home if I feel go ok about it. But must be honest I’m a bit scared. Or if they did move me somewhere at least hubs could visit. It’s his 70th birthday on Sunday and really want to be able to share it with him.

Yes I often have a little weep to myself but trying to keep a focus.

Xxx

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Hello@Summertime ,you are so brave ,what a horrible and scary experience for you .What a releif you made it back to Addenbrooks
Although stuck on the co vid ward ,I am just acknowledging your post and wishing you and your husband all the best. I Hope you can get a good outcome from all of this .
Bannanacake

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Thanks so much @Bannanacake xx

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Oh @summertime that’s total :poop: p o o p. PLEASE get well and please stop bleeding. Maybe your house insurance might cover some of replacements?
Sending huge hugs and love xxxxx

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Oh @Summertime, what a terrifying experience. You couldn’t have predicted that would happen, so don’t beat yourself up about the mattress and carpet - and as @ChrisCKW said, you might be able to claim for them on your insurance.

It does sound like a bleed that needs cauterising or something, doesn’t it? If anything can be of consolation, at least it may not be Graft-versus-host-disease, which can take some time to recover from.

Really hope you get home for your husband’s 70th, but I can understand how after that experience, you’re a bit scared to go home until the issue is fixed.

You really do deserve a bit of better luck now. Let’s hope it’s just round the corner.

Take care. X

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