Stem Cell Transplant

Hi Josh,

if you were in a good remission prior to stem cell harvest then surely the cells are free.

we have to trust our specialist teams, they are the experts; so if there were any doubt they wouldn’t be putting you through this!

hugs xxx

Hi Josh,

I think it is different for different cancers. With myeloma, they haven’t worked out a way to completely eliminate the cells yet, hence why it is incurable, so in that case, yes, the myeloma cells are still in the stem cells - so, I look at the SCT as pressing a massive rewind button, hopefully for a long time!!

However, with lymphoma, I think the treatment is curative. So on that basis, it must mean that it is possible to free the stem cells of any lymphoma cells before putting them back in.

However, none of us are medical experts on here, so I’d definitely encourage you to ask your medical team about the science behind this stuff.

I am hoping that it all goes really well for you.

Greg

Hi Josh Josh2017 and good to see you finding out little corner of the community.

Going into an Auto SCT your team will be confident that you were in remission and the cells that have been harvested are clear - they obviously do check the harvested cells.

My condition did not allow me to be in remission so had to go down the Allo SCT with stem cells from my brother, so in reality I went into both my Allo's with active Lymphoma in my system and the old me and my brothers new cells had to fight it out - nothing new as we did this all the time when we were young.

BEAM is a strong hit but does not take that long. Follow this LINK to a thread about the M (Melphalan) in BEAM as it will help you get through it as best as you can.

This LINK has some tips from folks who spent time in the SCT unit.

Keep asking your questions as we are around to help out.

Hi Josh for FNHL where you are now in the process is pretty standard in the UK, had you not had your issue then the transplant may well have happened sooner. Many people have been down this route so they do know what they are doing and remember with your disease it wax's and wane's so when the body is clear of defective cells you know you are ok in very basic terms so the chemo has got you to be ok and should stay that way until the transplant. With aggressive lymphoma's it can be a little more tricky at times. 

I know a few people who have had this for FNHL and some are now 10yrs plus and a couple heading past the 20yr mark as theirs were done in the 90's, so be assured they do know and people do stay disease free.

good luck and hope it all goes to plan, you will get great advice and support here from those who have had an Auto and Allo transplant.

John 

hi,

My beam chemo finished on 15th may and stem cell rescue on 17th May. Returned home on 2nd June. Managed to avoid mouth ulcers so I guess I had a relatively easy ride.

My problem now is loss of taste buds. Having to force myself to eat as everything tastes bland. Also a struggle to drink 1.5 litres of fluid per day.

Just wondering how long this may last?

Hi Josh2017, well done so far and yes, its sound that you did get off light.

Loss of taste buds can be the pits as it just does not help you eat. Try eating strong flavour foodS, if you can take it, have some mid curries to see if this can help. I also tried some strong flavoured sweets that had a strong sherbet taste to them.

My taste bugs were shot for a good 3 months but for some things improve rather quickly. The main thing is to get protein into your body as this will help your recovery......... drinking water can be a challenge and if you can get anywhere near 1.5 litres you are doing great - my team gave me a 3 litre target a day.

Hi Josh,

as well as stronger tasting stuff, try fresh pineapple as it’s very good at stimulating the mouth (can certainly help removing the metallic tastes of chemo) 

hope it improves swiftly 

hugs xxx

yes I will try the curry and  pineapple thanks.

My mouth also gets bone try especially during the night. I guess this is because the saliva glands are affected. I also have daily diarrhea. I assume this is because I'm not eating enough solid food.

Yes Josh2017, all sounds normal tone.

I am 3.5 years post my second SCT and still have dry mouth nights. I have a thermos bottle with cold water next to my bed for the times I wake up with the sand mouth

Just watch the diarrhoea, if it is very regular report it to your team but very important to drink lots

Hi Josh,

as long as you are well hydrated, there’s a dodge for stimulating salivary glands which we got taught when in choir for a concert in Bridgewater Hall for the Hallé; you push the top of your tongue against bottom back teeth on each side in turn. It promotes saliva which moisten your mouth enough to sing, so should help with this; but again only if you’re well hydrated otherwise.  

Hugs xxx