Due to have a SCT

Hi teddy123

The isolation period is very dependent on your treatment, you may be staying in a hospital ward or possibly be able to stay locally in an NHS ambulatory facility and attend the Hospital on a daily basis fr tests and check ups. If all goes smoothly then you can expect to be either in hospital or stay locally for us to 4 weeks, my wife was staying in local nhs accommodation next to her hospital last year for 3 weeks.

What is your diagnosis if you don't mind sharing?

FULHAMBOY (NICK)

Hi! Thank you so much for your reply. Glad everything was okay with your wife! 

That’s very helpful thank you, I think it will be a case of I have to stay on the ward for mine as I am very prone to infections and they have mentioned it to me. I am just very worried about the mental aspect of things. 

I was diagnosed last year with AML and got given the all clear and then relapsed August 2022 so now the only option is to have the transplant

Welcome across to this group (I did put up a reply to your post in the AML group)

As I said in your first post l, I have had two Allo (Donor) Stem Cell Transplants (SCT) first one was in June 2014 then the second in Oct 2015 eventually achieving my longest remission in Sep 2016 - up until then I only had been in remission for 9 months fir the first 16-17 years so for me SCT was my life saver.

I am not going to sugar coat this, SCT is not easy but it is very important to remember that this ‘short’ period of time going through SCT leads to long remission.

You may want to (See my story) but please remember that my condition is very rare and hard to treat. I was in my late 50s and for my second Allo SCT I was a month away from turning 60…… you are 21 so have your youth on your side.

Have they said if you are having an Auto SCT using your own Stem Cells or an Allo SCT using Stem Cells from a donor.

Always around to help out and chat.

Thank you again for your reply! They have said I am going to be having an Allo SCT, I am yet to find a donor and have been campaigning a lot to raise the awareness and in hope that a donor is found for me. 

I have read your story and I admire you! 

Sorry to hear that you relapsed, the same thing happened with my wife.

Diagnosed AML in October 2018, 4 rounds of chemo including Flag ida, all clear after 7 months. Relaped in December 2020

You say you don't have a date as yet, are you being treated locally with injections and tablets to try and get you back into remission?

My wife was given venetaclax and tablets daily over 7 days and then a 3 week break and started again over a 4 month period. One back in remission the SCT team in London started the arrangements for her sct in August 21.

I know it's a very challenging time even as a carer but you need to stay as fit and healthy as you can. Hopefully you have family and friends to keep you upbeat and positive. The Whole process is very daunting to you I'm sure, I know it was for my wife and myself. 

Keep yourself positive and try to occupy yourself with what you like doing best.

Your time in Hospital can be very boring so take a laptop, tablet, phone, books, mags etc. 

I'm sure you will suffer with anxiety and stress prior to your transplant, this is very normal, you are not alone.

The treatments today are very good and many people get through with limited problems.

My wife was incredibly lucky, she spent 3 weeks in the Hospital and then home follow.ed by twice weekly return visits for 3 weeks, then one a week for 2 weeks then every 2 weeks.

Soon after only one a month, now 14 months later she goes every 6 months.

Stay strong, healthy and most importantly positive, you can get through this, my wife and others she met at the time have done the same.

Please feel free to ask me any questions you may have.

1. FULHAMBOY (Nick)

Just to add

My wife also had an Allo transplant from her sister 100% match.

1. My wife was 67 at the time of her transplant her sister was 70.

I have had the Flag IDA chemo 5 weeks ago. I am waiting for my blood counts to go up before I can have a bone marrow biopsy to see if I am in remission. I may need more chemo but it is not confirmed yet. 

Yes I have so much support around me, I just have a lot of feelings around it and sometimes find it hard to speak to them. 

I will be sure to take lots in the hospital with me as I am sure I will be in there a while. 

I had the initial transplant meeting a while back and they really scared me with all the figures but I suppose they have to tell me all of those things. 

It is definitely a lot to take in and i’m just hoping it’s not as bad as they made it out to be. 

I am 21 so should be on the young adult ward but they don’t do transplants so I am on a haematology ward and I think that is making me more nervous too as I am not used to that. 

Thank you again! 

Hi. Unfortunately an sct or Bmt is a specialist operation and requires a specialist team to attend to patients ie nurses and doctors who understand sct and the issues that can arise around a sct. Also the hospitals are not insured to carry out sct procedures in other wards. This I found out when I received an sct. Also some rooms are positively pressured to reduce dirt and bacteria entering the room when you are nuetrapenic. Unfortunately I know you have just been through a round of chemo but when you receive your new donor cells through a drip your current immune system and any remaining cancer in your body needs to be completely wiped out using a preconditioning chemo which is usually very strong, unfortunately. Slightly stronger than you have had already. It is not an easy process but as the others have said you have age on your side and your body should be stronger than ours and hopefully you will recover. While you are waiting for donor and date for sct I would build up your strength as much as you can, eat healthily and you can afford to put on a bit of weight as unfortunately you will lose a bit going through an sct. As other guys have said take plenty of reading material if you read, tablets, phones to watch movies etc and to keep in contact with everyone and like previous chemo you usaially stay in until your neutrafils come back up, however even though you are getting new donor stem cells the time your neutrafils coming back up can be longer as your body is more worn out from the previous chemo, which is why I say now it is best you try to strengthen your body to help reduce the recovery time. I hope this helps a little. The dirts part of the process ie the precondionong should be fairly similar to what you have been through with previous chemo, but after you have the new stem cells it is slightly harder normally as your body starts it’s recovery process.

Good morning teddy123, I see you are getting some great help.

The waiting for a matched donor to be found will be frustrating but the search will go world wide looking in the world donor register.

My brother came back as a perfect match very quickly so following my main chemo I was quickly getting all my health checks done, Hickman Line put in and 5 weeks later I was in the SCT Unit starting the process PDF here.

Each person and indeed every blood cancer type will go through the basic same process…. but at the same time there are distinct differences in the Allogeneic SCT process depending on cancer type and presentation.

In my case it was impossible to get me into full remission due to how my skin NHL presents so my Allo’s were always fighting my condition during the SCT process.

Getting ready for SCT is important. Due to my SCT unit being 170 miles 3-4 hrs drive away my wife and I obviously myself had to move down to Glasgow for the period - 5 weeks for my first Allo and 7 weeks for my second Allo.

We were in a local hotel at first as I was having a lot of radiotherapy as part of my conditioning so all the initial set up work had to be done and some of the zaps were done as an outpatient….. when we left Inverness it looked like we were away on a world cruise. This was mainly due to my SCT units requirement that I had to have a total clean set of day and night cloths every day…… so my wife could not nip home to do the washing!!

This link is a collection of thoughts about what folks took into the SCT unit - Checklist for SCT Unit

As for stats….. my consultant started by saying that in my case my chances of survival without a successful Allo SCT was 0% and gave me about two and a half years on the clock so I did not ask anything more.

At a later discussion following my second Allo SCT she said the then national average Allo SCT survival rate (2016/17) were at 90% with her unit being at 92% going on to long term remission 3-5+ years….. then folks are discharged to get on with life. I was discharged at just under 3 years post my second Allo and now only have full bloods done once a year and a follow up phone call with one of the SCT unit Late Effects team.

She also said she did not have national figures, but for her unit the average life expectancy for folks who did not go forward with a SCT when it was offered and was not taken up was 2-3 years.

The 8% in her unit who did not survive were average age of 59 (I was 58 on my first Allo and 59 on my second) with all having at least one underlying other health issue and that their pre SCT prognosis was very poor with their conditions not responding to the SCT process.  I have Asbestosis and this was looked at very closely but as my prognosis was not great we rolled the dice......and got the 6.

I then asked her, why are the figures used during what we call 'the talk' so different from the reality?…… she basically said that it was the only way of showing the worst case scenario and in fact the figures used were normally based on the lowest performing UK SCT units, but she also said who knows if we can keep our success rate as good as we are doing now but we are doing good so far but it is all about how well the folks coming through the doors get on with the process.

She also said that her units long term remission rate has been going up for years now and the stats will always be lagging behind the reality at looking at folks three years down the line......... but she did say that their stats have indeed improved in the past two years :)……. And remember this conversation was back in 2018 when she was discharging me from her care

Thank you so much for your detailed response! 

I have read a lot about the conditioning chemo and how strong it is, I hope it is not as bad as the chemo I have had before as I have been quite ill with that previously. 

I will definitely be sure to take lots of things in to do and I think I can have my mum staying with me and I am allowed visitors, hopefully that will make it easier for me. 

Thank you again!