Pending stem cell transplant

Hi again busylizzie and welcome across to our little corner of the community.

Just so everyone knows you said in your first post on the Myeloma group that you are having an Auto SCT (autologous) - PDF here and your cells have already been harvested.

I could not be put into remission so could not have an auto SCT so my big brother was a 10/10 match so I had an Allo SCT…… I actually ended up having 2 SCTs….. it’s a long story that you can see using the link near the bottom.

I can understand that you feel anxious but do remember that DVT has been done for a very long time and the process has been refined to the point of being a regular treatment. 

Yes there can be bumps in the road but these SCT Consultant’s and their staff are at the top of their game so you will be in safe hands.

An Auto SCT has far less complications compared to an Allo SCT as in an Allo the body see the donor cells to be an attack on the body and dies it’s best to kill the cells off so this can result in some complications……. But I am 7 years 8 months out from my second SCT, turned 67 last Nov and living a great life…….. yes I am not cured as my type of Lymphoma is incurable but the hope is that it has been put to sleep for along time.

Once you know the type of conditioning that your team is going to use to kill off your immune system do tell us as someone may well have had it.

Conditioning is normally a short one week-ish blast if very strong chemo……. There are a number of different types to suit different blood cancers…... I actually had no chemo for my first SCT as I had a new drug and radiotherapy.

Preparing for going through the time in the SCT Unit is important so this old post is a place where group members have collected the things that helped them go through there time in the SCT unit - Checklist for SCT Unit and this link is taken from the Lymphoma Action site but again has some good first hand tips for the SCT process Top tips for stem cell transplants

Do ask your questions as someone will be able to help you out ((hugs))

Hello busylizzie

i had my SCT Sept 21 and I was terrified! but couldn’t wait to get it at the same time because it had been delayed due to Covid. I won’t sugarcoat it because it is rough but remember the staff are there for you. They are all very experienced in haematology and they want to get you better. Everyone’s journey is different but just keep telling yourself “I can do this “  Today I am feeling very well and enjoy life and I am grateful.  If I had to do it all over again to be Myeloma free I would

. I wish you all the very best 

Hi thank you for replying to me , I’m pleased you are doing well , I’m going to face it head on and try to stay positive .

Hi thank you for replying to me , im pleased you are doing well , I’m going to face this full on and I know I won’t feel groggy for ever and be worth it to get my life back . Take care 

Hi Busylizzie, 

I can completely understand you being scared and anxious as this is natural. I felt the same especially as I needed to have a week worth of conditioning treatment and hoped it worked so they could do my Stem Cell Transplant. I was an emotional wreck when they told me it had worked so the transplant would be going ahead. Do you know if you have got to have a Hickman line put in? If so the stem cells are being put through the Hickman line they go in quickly and do not hurt. I filmed mine going through the tube and in to me as I thought it was interesting and wanted to share this experience with my family as they couldn't be with me due to COVID. 

Everyone does respond differently to the treatment and I sadly had a rough ride after the transplant however the Dr's did everything they could to improve my symptoms especially the nausea. 

Hope all goes well for you and remember you might react differently from myself and others who have commented but its a side effect and you will get through it. 

Hi

Thank you for replying , pleased all went ahead for you in the end , I have in my head I will have side effects but fingers crossed won’t be too bad but will be in the right place !! I have a line in already so sounds as though that will be easier . I’m hoping now that a bed will be available for the 31st . 
Sending best wishes 

Pat 

Hi Pat busylizzie I had no real problematic side effects during my 2 Allo SCT.

I used the mouth wash religiously during both SCTs and had no mouth issues, did have a heart issue during my second Allo that has left some long term heart issues but all manageable……. the main challenge was the massive amount of antihistamines I had to have as I have severe animal allergies (a lot of drugs are grown in animals ) but also general drug allergies so I slept a lot…… I mean days at a time, my wife who was living on the ward could have been home in Inverness as far as zi was concerned.

Hi Mike , thank you for answering , hope you are doing well , what mouth wash did you use 

Pat 

I am over 7 years out from my second Allo SCT and living a great life.

My SCT Unit used a two pack oral mouth rinse called Caphosol. I set my phone for every 3 hours to make sure that I was doing this all day.

My head SCT consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to over come any bad mucositis. I did well with only one very small area developing and it was not a problem.

A lot of units don't use Caphosol due to the cost but in the long run it saves money as folks tend to have less problems and get out of the unit quicker opening up space for the next person.

Hi busylizzie

As Mike has stated Caphasol may be given whilst your in Hospital but they may give an alternative. My wife used DIPHLAM and found it to be very effective, she was also prescribed this on discharge from her SCT stay.