Date for SCT

Hi Mike, under the circumstances most consultants are happy for you to record the meeting - just ask. Yes the 'Talk' will most likely be rather scary - my first one was but they need to cover all the bases.

This thread Checklist for SCT Unit has indeed some great info.

Do you have any idea what conditioning treatment will be used to take down your immune system?

Eat well for the next few weeks as you may well go off your food.

Hi Mike

Thanks for the note. Given what my scales are telling me I have been eating well.

My file of info tells me it is a LEAM autograft - Lomustine (day -6) then Etoposide / Cytarabine (days -5 to -2) and Melphalan (day -1). Almost sounds like starter, main course and pudding - but I suspect the analogy is not a good one!

I have seen BEAM before so not sure whether the L versus B makes any significant difference.

Mike

Mike

I had a different cocktail (horses for courses) and also had an Allo not an Auto........ but did have Melphalan that is actually derived from Nitrogen Mustards Gas!!!!!

You do need to have a look at this thread set up by moomy Melphalan and Ice. Melphalan is only for a short period of time but it is a big hit but can be controlled.

Hi, 

LEAM is a common substitute for BEAM, I understand, and just as effective (but yes, watch out for it, the Melphalan is a particularly nasty beast, sucking ice in all forms is advisable before, during and after) 

hugs xxx

Hi Moomy. I am just about to start R GDP chemo followed by LEAM and a stem cell transplant. Have you been down this road? If so any advice. Feeling scared.

Hi lynette0812 and welcome to our corner of the Community......... I am sure that moomy will be along soon to tell you about her lass.

In the mean time hit this LINK and see a thread about SCT Success stories. You can also see our stories by hitting our Community names.

SCT can be hard work but all do-able.

((hugs))

Hi

I know the question what asked of Moomy and I am sure she will reply but whilst I have not been down the road I have started a journey in that a similar direction, so understand your worries.  Mine is an auto SCT with my own stem cells so unsure if yours in the same with donor stem cells.

If you check up on my posts you wlll see I relapsed in January this year after RCHOP in the first part of 2019.

I had RGDP (2x) and  a PET scan with a complete response.  The RGDP was OK - perhaps a bit more fatigue and the Cisplatin did upset my kidneys.  I then moved onto stem cell harvest which involved Cyclophospamide and injections of GCSF - again all doable and the harvest was painless.

I had a meeting at UCL with consultant yesterday and they explained the process and that there will certainly be days during the process that I do not feel great and that most people do pick up some sort of infection but unless my hearing was selective I came away feeling 'better' about the process and what lay ahead.  I go in on Thursday next week and whilst they can never be sure should be at UCL in ambulatory care (they have a sort of NHS hotel adjacent) or in the main hospital for 4 or so weeks.  I must start to think about packing!

When do you start with the RGDP?  I will let you know more of my experience as I can but so far, apart from the mental battle, it  has not been too bad and the docs and nurses seem to know what they are doing!

The main downside has been that I am on to my 6th Covid swab! I hate it and always brings tears to my eyes - sure there is no need to stick the swab so far down my  throat or so far up my nose!

Good luck,

Mike

Hi,

it was our daughter who went through both types of SCT, and I think the ‘ L’ in use is a very similar drug to the ‘ B’ of BEAM, it seems to get used periodically when there’s any shortage of chemo drugs.

its a tough regime but does work well.

Stay positive and keep posting!
Hugs xxx

Thank you so much Mike. It is good to have someone to talk to that is going through the same thing. They hope to start the R GDP on the 22 June. Good luck with your treatment. I will be having a autologous transplant. Do let me know how you are getting on x

Hi lynette0812, good to see that you are receiving great support.

Macmillan have just produced a new info book on Understanding stem cell transplants using your own cells (autologous) - PDF here.

Stem Cell Transplant is fascinating but at the same time rather simple. Kill off your immune system - give you a new immune system!!

The post Auto SCT recover tends to have less issues, yes you may have challenges but your body won’t try and reject your cells as they won’t see them as something that should not be in your body.

A donor Allo SCT has the challenge that the body try’s to kill the new donor cells and this can bring lots of medical problems.

We are always around to help out and remember to look at some of the discussions that have been posted that will help prep you for the process ((hugs))