Hi Majic30.
Firstly my advice is to talk with your Doctor / Specialist and ask these questions to get the professional side of things.
The basic Transplant options are:
A) Autologous stem cell transplants (autografts) refer to stem cells that are collected from an individual and given back to that same individual. Most stem cell transplants in myeloma are autologous transplants.
B) Allogeneic stem cell transplants (allografts) refer to stem cells that are taken from one person and given to another. Currently, these types of transplant are performed much less frequently in myeloma due to the high rick of mortality.
OK…… So hear is my personal take on my experience. I was heading for an AUTOLOGOUS transplant and after 6 months of chemo, my levels had been brought down to a good low level.
( This is generally the process, when they think they have achieved the best levels, they harvest your own cells, clean them up and then give them back to you. With this procedure there are NO rejection issues as you are having your own cells put back into your body)
As I was relatively young my team asked if I had any siblings and at that time I was told in detail about the HIGH RISKS of having an ALLOGENIC transplant. A large part of this type of transplant is the MATCH / QUALITY of the donor. A brother or sister with high numbers matching are pretty much always the best ( numbers are matched from 1 to 6, so a 6 for 6 match being the best ). A NON FAMILY match can also work but the risk of rejection is higher.
REJECTION is called GVHD or “Graft verses Host Disease” ….. so Graft being the donor and host being you …… when your cells fight off the donor cells this is called GVHD. I am now going to be very blunt !!! ….. IT CAN KILL YOU EARLY IF THE TRANSPLANT DOSE NOT TAKE.
The way I have always described it to people in general is that …. a computer has a VIRUS and you need to wipe the hard dick clean ( Chemotherapy / Radiation ), then re-boot the system with new software ( A transplant ). With an Auto you have less risk, but there might be some virus left in the computer. With an Allo you have a larger risk BUT the chance of a clean computer is much higher.
Back to my experience. I was VERY LUCKY I had 3 siblings who were all tested and one of my sisters turned out to be a six by six match for my bone marrow. This is about as good as it gets other than an identical twin !. Having been told of all the risks involved it was then my decision to have the ALLOGENIC TRANSPLANT. I looked at it as a risk assessment exercise, if I could take one big hit of risk up front and survive then then the prospect of a good recovery combined with a drug free quality of life was worth the HIGH RISK. I was told in my case that the MORTALITY RATE was likely to be around 38%.
My sister gave me two bags of marrow from two sessions ….. she had to take a drug for seven days which flushed her bone marrow into her blood system. She then had to sit still on a machine similar to a dialysis where she had a line in each arm taking her blood into the machine where the marrow was separated out and her blood was then returned into the other arm. She did this twice for approximately six hours over two days to produce the two bags.
Just before the transplant I had TBI which is TOTAL BODY IRRADIATION ….. this is where you are radiated over a period of four days. They pack your body with protection in the most venerable areas such as your head and major organs, but the idea is to blast the whole / total body with one last blitz of radiation. As I mentioned above effectively they are trying to wipe you clean without destroying your system …… in basic terms cleaning your body to the highest degree without actually killing you in the process !!!
I spent six weeks in isolation in hospital which was not much fun. The reason for the isolation is that with this treatment your IMMUNE SYSTEM is pretty much wiped out so any small infection could kill you, hence the initial high risk.
PLEASE NOTE THAT THIS TYPE OF TREATMENT IS NOT FOR EVERYBODY. YOU SHOULD BE YOUNG, REASONABLY FIT AND HAVE A GOOD MATCHED DONOR.
I was VERY weak after being in bed for six weeks and had went on to have some issues in the following months BUT after about a year on ANTI REJECTION DRUGS I was able to come off them and slowly recover to good health. The procedure kills off your salivary gland in your mouth which makes eating VERY taxing. In my case salt was also an issue and I ended up making my own chicken and veg soup which I survived on for well over a year along with porridge for breakfast.
I came through with only some permanent damage to my EYES in terms of GVHD. I have loss of tear formation and what is left produces a thick white sticky mucus. I treat my eyes am and pm with a special eye drop which dissolves the stickiness and then all through the day top this up with and eye lubricant. It has been VERY easy to get used to this and live with it, small price to pay !!!
Take a look at the link below which has some good information on transplant:
http://www.themmrf.org/living-with-multiple-myeloma/patients-starting-treatment/treatment-options/stem-cell-transplantation.html
LASTLY ….. DO NOT BE AFRAID TO ASK YOUR DOCTORS QUESTIONS AND IF YOU DO NOT UNDERSTAND ANYTHING FIRST TIME AROUND …… ASK AGAIN AND AGAIN UNTIL YOU GET IT. If they are impatient and don’t give you the answers GO TO ANOTHER DOCTOR AND GET A SECOND OPINION ?????
Good luck to all and don’t let the BIG C grind you down
Take care,
Richard
bajabell.
