Advice on what to expect from daughters upcoming SCT

Good morning Ruth 

Never say sorry to asking questions as this is what the Community is for.

This is both a scary but exciting time all in same measure....... scary because it is........ exciting as there is a new life at the end of the tunnel.

There are lots of different types of conditioning (chemo) used for getting someone ready for SCT. It just depend on how much of a hit is required to kill off the Immune system and leave space for the new cells to take control..

My first Allo did not use any chemo but a targeted therapy and radiotherapy, my second was a bigger hit and included Melphalan.

Have a look at THIS thread and see our thoughts about having Melphalan and the best way to deal with it. Most folks do ok with it but some do have reactions and the main side effect is mouth mucositis......... and yes sucking ice lollies does work.

Some hospitals don't do this!!!!!!!! so its important to talk with her team and some folks on the Community just took their own in for the M infusion.

My team also used a two pack oral rinse I used was called Caphosol "this is expensive stuff Mike - but if you use it correctly you should not have any issues"......and they were spot on - no mucositis.

Once mucositis sets in its hard to eat, it can be very uncomfortable but the teams can deal with and on the whole this does not last for long.

BEAM is often used in the UK and is very effective. I had FluMelAlem30 and with all these treatments there are side effects that can come along but the SCT team will be on it.

As I have very bad animal allergies I had to have very high levels of antihistamine. I was more ill from this than most of the other treatments.

I did have a reaction to M but most folks don't.

Checklist for SCT Unit this thread contains our thought about what to take to the SCT unit. I would think you would NOT need to take towels etc.....this is changed every day like clockwork in SCT Units.

My team told us that I had to have a complete clean set of cloths for every day AND night. This is to try to cut down as far as posable any infection risks.

This was hard for us as we were down in Glasgow - a 9 hour round trip.....it looked like my wife and I were going on a World Cruise but we did ok.........you need to be asking your daughters Transplant Co-ordinator these questions.

"What day can I expect her to feel better?".......... that is the million pounds question. This best advise is take each day as it comes. It needs her blood counts to start to grow for here to gain more energy..... this can take a few weeks following the day when her cells go back in......this day is called '0' day.....the days leading up to '0' day will count down......-5. -4 -3 etc the after '0' its +1 +2 etc.

Keep your questions coming ((hugs))

Thanks again Mike for your reply and previous replies.

i will check out the checklists.

They also want to do a CT scan before and I don’t understand why am worried about this now too..♀️

Hi ,

it’s so hard facing this as a parent, but her team truly will help her! 
I too was a worry-guts (still am as our lass took so long to get there) and of course you want to protect your offspring! 
Do ask her team anything and everything you want to know; one thing I remember is that daughters room for her auto had it’s own fridge but it was ice-bound as there was a gap around the ice box, I was on hands and knees getting it defrosted so we could use it for ice lollies! And yes, the Melphalan can cause awful mouth and throat sores so prevention truly is better than cure. Caphosol got used when she had her second SCT, her allo. Once counts rise again the sores resolve quickly. 
daughters counts began to rise on day+6 but they weren’t sure if it might be infection markers so had to wait a couple of days till certain, but she got discharged a couple of days later. 
If there are any daily meds hard to cope with or the antinausea meds aren’t working well do get her to say so, they will change things swiftly to ensure she feels as well as possible.

Keep posting, we are here to help support you too! 
Hugs xxx

Hi Ruth, good to see moomy picking up on your post as she truly has been the one sitting on the chair next to the bed. As the person in the bed.......some of the process is just a blur and my wife tells me things that went on that I have no recollection.

CT Scan.......... I was CT scanned before each Allo. For my team, it was their protocol and what they did........ but I did see it as them being very thorough, taking nothing for granted and double checking - you have to remember that Stem Cell Transplant is like a major medical procedure........but without the surgery.

The first autologous stem cell transplant was back in 1957 with over a Million of these done - so these SCT Teams know what they are doing so rest assured.

Don’t over research this as you will find lots of wild stuff out there - stick to talking with people who have walked the walk.

Keep your questions coming in ((hugs))

I had an auto SCT at UCLH in June. My advice:

-After the stem cell transplant itself, you expect things to start getting better. My doctors kept telling me "you will feel worse before you feel better." They were right. It was a tough slog from about day 3 to day 12 after the SCT. But, it will get better!

-Make sure she takes the anti-nausea religiously and make sure the nurses give her a supply that she can self-medicate with. There is nothing worse than pressing the bell for the nurse and waiting 20 minutes for them to bring you your anti-nausea meds, especially when in 20 minutes you might not be able to keep pills down. Also, always feel free to ask for the nausea meds intravenously. 

-Have a supply of paracetamol. Fevers are common with cytarabine (one of the drugs in BEAM). If she gets a fever, they will do bloods and monitor her more regularly, but also give her paracetamol. Having paracetamol to hand, she can take this without waiting for the nurse to get one (some are than others in this regard).  

-Write down any questions you have for the consultant. It is easy to forgot these when they randomly show up on the day they are doing wards. 

-Bring protein bars, crackers, and other easy snacks to eat in the days after the SCT, when she won't have much appetite. 

-Bring towels if you want but hospital should have them. More importantly, I would bring flip flops for the shower. 

-Lastly, stay strong. Observe precautions regarding visitors if they have infections but it is easy to take this too far (my mom actually wore gloves when she brought me food! - which I think was unnecessary).

Always remind her that she will get through this. I am 5 months post SCT and am back at work full time and planning a wedding in June :)

Thanks for the advice.

i am the worlds worst when my kids are ill.  I go to pieces.  I’m hoping her dad will be able to share the care (we’re not together but get on ok).  He is so much better than me when they are poorly.  Very calm unlike me.

i selfishly wish I could be out to sleep for a month until it’s all over as mentally I know I’ll fall to pieces.  How selfish does that sound?!!!!!! I’m not even the one it’s happening to.

thats good news that you’re back to work and planning a wedding!  Exciting times for you.

xx

Thank you again for your response. 

xx

Hi Ruth,

I so understand the feelings of panic and the wish that you could just go to sleep for a month till it’s all over! But this is just a time to find your inner calm and bottle that panic away. I’m sure your outer self gives nothing of the hint of what you feel inside? And that’s the way to be around her.....but for yourself, you need to have a way of dealing with the inner turmoil as otherwise it will send you loopy! So sort out some form of counselling/release/exercise  (I know, daft, eh? But it helps!) to help get YOU through all this. Her hospital (if a good one) should be able to point you towards a psychologist counsellor for yourself. 

For myself, daughters hospital had a visiting therapist on the transplant ward who would give back massages once a week through a towel (so fully clothed) and offered this to regular carers. I had a couple, the first one was such a release that I cried! She totally understood and a box of tissues was instantly there for me. 
sending understanding hugs xxx