Suspect a relapse and worried

Hi John...Thanks for reply. Yes at Guys Cancer unit although he said actual treatment at UCL.

if there is some other treatment than GDP I will raise with them. They didn’t seem to suggest there was. Mike

Hi, will post a list but in my time it was R-ICE or R-Dhap and the are a few others now, GDP seems to be being used more over the last 3 years and the have been a couple of trials adding a couple of other drugs which seem to improve outcomes from the research done though 1 if I remember showed no benefit.

Will post later tonight for you, one final question is how much info do you want sharing? and I will leave Mike to explain the transplant chat and to put it into context. though remember these are much more common procedures now when compared to 10 to 15 years ago an they are well versed in the process.

John  

John,  thanks again. Sorry but not sure what you mean about how much info do I want sharing? I guess at this raw stage not especially depressing stuff that might suggest limited chances but I may have not understood the question. Will like to know what To expect and prepare for. Mike

Hi agin Mike and I am also sorry that you have to go on the treatment rollercoaster again. I remember these times well but this can be done.

R-GDP is indeed used as a salvage treatment for going onto an Auto Stem Cell Transplant (SCT)

Here is some information about Stem Cell Transplant the process. On the surface, the process is rather straight forward but does come with it's challenges.

We do have a dedicated Stem Cell Transplant group so it would be good for you to come across and join the group and set up your own thread.

I have been through two Allo SCTs with Stem Cells from my brother and yes it did the job and got me into remission and that was over 4 years bak and I am doing great - so be encouraged.

I will keep an eye open for you in the SCT Group.

Hi again Mike, on the back of what John said about 'information' and as you are open for information I will post this on this post as it fits where you are at.

You will have to go and meet with the dedicated SCT team and they will give you what we call 'The Talk'

The first 'Talk' with the SCT team is where the team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving permission to your team to take you to the point of being open to very bad infections, side effects.....even death :( then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able. 

The talk is not there to scare you, but to honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.

I was given a 5 page connect form away detailing everything they had said and I I was willing to go ahed I had to sign it and return it and this started the process.

You need to ensure you have a good understanding so I would always advise you have a note book with you. The note book is the place where you start to put down ALL the questions that comes to mind. These questions often come to mind at silly o'clock. Put them in the book and park them until your appointment. The note book also helps you sleep.

The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out and you say 'well, yes I have' A lot of people freeze at these meetings and are overwhelmed by information. So you can go through questions one by one, making sure you take notes. If you don’t understand something you stop the Consultant and ask them to put into a form of language that you understand. 

I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.

This can be done, yes I can be hard but do-able.

Mike, thanks for the reply and links. I have joined the SCT group. Not a group that I really wanted to join but hopefully will be useful during all of this. Mike.

Yes Mike, not a great place you would want to have to join but you will find great support and be able to look at some very encouraging stories.

This is my simple guide to an Auto Stem Cell Transplant.

The idea behind SCT is to give you an 'all new' Immune System.

An Autologous SCT (Auto) involves getting the you into a condition that no cancer is evident this is normally done by using very strong chemo then the your Stem Cells will be harvested.

Once you are in remission you may have to have a week of injections (once a day) to help the Bone Marrow make lots of Stem Cells and these Stem Cells then go into your blood.

On the day of harvesting the cells two lines are put into the arms - one out, one in. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.

The machine can pick out millions of cells over a 4-5 hours process. The harvest is on the whole painless, just a lot of sitting around.

The Stem Cells are then stored until it's time to use them. The method is called cryopreservation: it freezes stem cells at temperatures below -150oC, by immersing them in nitrogen vapour. When required, they are defrosted in a water bath and are put back into the body through a central line.

An Auto then requires what we call Conditioning to happen. This is done to take down the immune system completely. This is usually done using some more very strong Chemo - but its only for a few days.

Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion.

The Stem Cells then go to the job centre in the Bone Marrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells...... and the all ’New You” starts as the body start to reboot the immune system and over time the blood counts come back up. Its all very cleaver, very science fiction but very do-able.

Due to the very specialised nature of a SCT it is often done in a dedicated SCT unit. It a very clean environment (Ward) in a hospital, you often get your own on-suite room and yes you do get visitors (some people think they have to live in a bubble) as long as every one is healthy its no problem but some units will have rules about little children.

Remember you don’t have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until your new immune system kids back in. You will be an inpatient for some of the time but this all depends on how fast the ’New You’ starts to grow.

Thanks very much for this...makes it very clear and understandable. I guess the key is whether i get into remission to allow it to happen. All very raw at this stage but hopefully will get my head around it all.

Thanks, Mike

Just to add, my team could not get me into remission so I could not have an Auto SCT so my only option was to go into my two Allo SCTs with active cancer cells in my body.

The main difference is that an Allo SCT requires Stem Cells from a marched donor - my brother in my case.

An Allo is much more dangerous as the body sees these new cells as an attack on the body and do their best to kill them..... and at the sane time can kill the patient..... it’s a lot to take in but be assured that the success rates of SCT are very high providing long remission.

I should probably start being very nice to my brother...!