Beatson how long a stay?

Hi Kelly,

an unquantifiable list of questions, but sensible to ask! (How long is a piece of string comes to mind!) 

I understand the Beatson has a brilliant transplant unit. That said, wherever you are looked after, there is always a risk of infection as your immune system will be no more for a short while, and at that stage anything might happen. 

I am assuming you already have a good match? I guess you know all about the risks and then too, about the time you will spend on immune suppressing meds to allow your new system time to take effect and transform? It’s all a balancing act at that stage, your team are the experts so rely on them. 

For our daughter, she had an unrelated but well matched donor (who we’ve since met!) but for a different blood cancer, a couple of days into the conditioning she was allowed home, but once this was done, she spent three weeks from the rest of conditioning through till her counts came up in her hospital room (at Manchester’s Christie) and then around a further week since she had reacted to one of the drugs and had developed a skin abscess which needed testing and draining. 

Generally they think if you’ve fewer than three readmissions within the first year post allo then you’ve done well! 

Do spend a few minutes filling in some basic info into your profile, it does help. Click on your user name and then follow the ‘edit your profile’ link. Mine is long as we had a long time getting daughter to remission and then I too had need of the site!

Hope all goes well for you

hugs xxx

Hi Kelly  and a second welcome to our corner of the Online Community and some great help from mommy,

I am Mike Thehighlander and I help out on the Forum but more importantly I have had two Allo Stem Cell Transplants (SCT) with Stem Cells from my Brother and I had both SCTs at The Beatson. 

You may find that your actual treatment will be over at the QE but if you are having Radiotherapy as part of your conditioning this will most likely be at The Beatson.

I was in the unit for 28 and 29 days for both my SCTs

I think if you have a look at my profile by hitting Thehighlander and see my story and then post any questions as you will have lots.

It would be very helpful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about the journey you and your family are on.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.

We are around to walk this with you ((hugs)) from Inverness.

Hi Kelly,

And a third warm welcome from me! 

You will probably quickly find out that there is no one size fits all to SCT. I had a pretty smooth SCT with both auto and allo, being discharged on Day 12 with former, Day 13 with latter. The worst for me was GvHD as I got re-admitted around Day 50 for a further 47 nights (boo!)

Its probably a good idea to prepare yourself for a fairly long recovery, around 3 months would be brilliant but it could be a lot longer. But there is some brilliant support on here so please stick around, between us, we’ll have covered most of what SCT has to offer and we’ll try to help out wherever we can.

All the best

Greg

Hi Mommy,

I know it was a bit of a vague question. It's really good to hear from people who have been through it to know what all the trips and turns could be. I'm waiting to find out if my full brother is a match. That's amazing that your daughter got to meet her donor! Will look at my profile Xx

Hi Mike,

Thanks for the reply. Wow so safe to say you know those 2 hospitals well!  What is the food like at both? I will look into doing my profile.

Hi Greg,

Thanks for the welcome! Sorry to hear you had a such a time with it! It's good to know what to expect so thanks for replying. It's still all very new so we have had no talks with the stem cell team. 

Good morning and it’s good to see you are getting some good initial support. Important to see that this is a marathon, not a sprint and even then you don’t run the marathon.

The food at The Beatson was ok but as with lots of folks you may well go off your food so best to put some weight on before you go in as it will drop off.  But my wife would also take stuff in from M&S next to The Pond Hotel.

Never had food at the QE but the food court down stairs is great and the soup bar is very good.

The teams at The Beatson and now the QE are great and do know their area very very well so you are on very good hands. The head SCT Consultant is fantastic but it takes time to ‘get’ Dr P as she is rather intense and straight to the point - but I liked that.

When going for what we tend to call 'The Talk' with the SCT team it’s good to be prepared. 

It's where the team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad very bad and you will be giving permission to your team to take you to the point of being open to very bad infections and side effects, then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able. 

Recovery time is very different across everyone and you may face post treatment challenges including GvHD.

The talk is not there to scare you, but to honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.

I was given a 5 page form away detailing everything they had said and I I was willing to go ahead I had to sign it and return it and this started the process.

You need to ensure you have a good understanding so I would always advise you have a note book with you. 

The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out and you say 'well, yes I have' A lot of people freeze at these meetings and are overwhelmed by information. So you can go through questions one by one, making sure you take notes. If you don’t understand something you stop the Consultant and ask them to put into a form of language that you understand. 

I would also recommend that you always have two sets of ears as the information can come thick and fast and two people can hear far more than one and its someone to sit and have a cup of coffee with after and talk through what was said, rather then rushing home and not unpacking it.

Here are links to two threads that moomy wisely started a few years that gives some good prep info. The first is a Checklist of things to have while in hospital and if you are having the chemo Malphalan as part of your Conditioning (taking down you immune system) then some good tips on that.

Checklist for SCT

Melphalan and Ice

We have had a few folks treated at The Beatson/QE so lets see if they are still around and pick up on your post.

Before you can be presented for a Stem Cell Transplant you will need to go through a series of tests and examinations to ensure you are healthy enough for the procedure to be carried out.

If your team think you are not fit to do the process you will not be able to proceed.

A Stem Cell Transplant tend to be more successful in people who are in good general health, despite their underlying condition and age.

The tests and examinations you will have are:

An electrocardiograph (ECG) to check your heart's rhythm and electrical activity

An echocardiogram scan used to look at your heart and nearby blood vessels

An X-Ray or CT to check the condition of your organs such as the lungs and liver

A very detailed Lung Function test to check your lung function and lung capacity

A dental examination including x-ray's to check for any hidden mouth problems as the Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.

Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working and to have data to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.

I had a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for. I also had a meet with a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work.

Keep your questions coming as we can help out.

Thanks so much for all this info. Really is overwhelming at first. They were never keen to go into detail about the stem cell transplant and I'm beginning to see why. So much to go over. I don't know when I'll be meeting with stem cell team but hopefully soon. When it comes to taking notes and asking questions I haven't stopped, I'm sure there's still plenty to come. Hopefully get a clear result on next bone marrow!

Hi Kelly

Sorry for the slow response but I have been celebration my 50th birthday which when I was diagnosed in 2011 with ALL seemed a long way off and at times questionable if I would get there.. but get here I have and the celebrations have been great fun!.

I was on the UKALL 14 trial back in 2011. The first phase was a bit of a blur after the initial diagnosis, the second stage is when the 1st stage caught up with me a bit. I had the 3rd stage treatment over Christmas 2011 but reacted to one of the chemos and ended up with acute pancreatitis which meant my stem cell was delayed form Jan 31st 2012 until May 31st 2012. It went ahead and back in 2017 I was told I was told I was "cured" and now attend a late effects clinic once a year at Barts where I had my treatment.

I was in Barts for 7 days before my transplant and 15 days after before I could go home. I picked up sepsis on day 2 after the transplant but they dealt with that quickly and it didn't end up delaying my recovery a great deal.

I was readmitted about 3 1/2 months post transplant with EBV and then again about 12 months post transplant with GVHD of the gut. 

Over all the journey was fairly routine but there were curve balls that I had to deal with on the way.. But you can do it and come out the other side and live a very normal life!!  Mu story can be found here  Paul1969.

If you have any questions about the UK ALL 14 protocol or how I dealt with specific parts of the resentment please ask.

Good luck

Hi Paul, thanks for reply. Wsh you a very Happy 50th! That must have been a great bday to celebrate! Can you tell me what the 3rd stage is? Is stem cell transplant after the 3rd stage? They have only given me the plans for stage 1+2. That's my BMT been booked in for next week so hopefully be able to move on to the next stage. 

So good to hear from everyone to know the ups and downs gives me a bigger picture of what to expect. Still all very surreal but getting there xx