I went for my first appointment back at the Royal Liverpool Hospital today, to find out more about my next transplant.
For those of you that are reading this for the first time, I have already had an autologous (own stem cells) transplant last August, but it didn’t work and my myeloma came back immediately and aggressively. I been on a PAD regime of which I have had a 6 three week cycles (give or take a few week adjustments within those weeks due to illness).
After arriving at the hospital for my appointment at 10am I didn’t have to wait too long, about 3/4 of an hour before seeing the doctor and spent well over an hour with Dr Salim discussing the process and my options.
There was a lot to take in and I can’t remember all of the names of the drugs and processes that I will have to go through, but overall this is the process I’m going to go through with a rough run down of time scales and what to expect etc.
It is 99.9% that I will be using my eldest brother Nigel as the stem cell host. He is a 100% match. We were waiting for the results for my younger brother Nick to be faxed over, but they never arrived while I was there, but at the moment as Nigel is a perfect match we are going ahead with him as the donor.
I spoke with Edwina, who is the transplant coordinator and it looks like it will be September for my Transplant, but personally I think that will be the end of, so September / October time.
The process will involve the extraction of Nigel’s stem cells which will probably happen at the end of August. My process will be to have some chemo therapy followed by radiation therapy at Clatterbridge Hospital. That will be the first 3 to 4 days. Unlike the Auto STC this is not to totally destroy my own marrow etc but to reduce my system so that it doesn’t reject the foreign Stem Cells that are given me.
Once Nigels Stem Cells are given it is a process of monitoring the levels within my system compared to the new ones. interestingly if all goes well, both myself and Nigel will have the same DNA.
After a 3-4 week stay in hospital there will be a long time recovering at home.
All of the above sounds quite straight forward, but it obviously has it’s risks. The risk of death …. yes it has to be asked and the answer isn’t that good. With the autologous transplant last time, the risk of death was about 2%. With this process, there is not only the risk of dying during the process, if my body rejects the Cells and I get what is called Graft Versus Host disease which can occur not only during the initial stages of the transplant, but anything up to two years later then the risk of death is a massive 20-30%. In a study last year, 11% of those in the trial died.
So my options are to think about what will happen if I don’t have the transplant and compare that to what will may happen if I do. So after weighing in the balance the fact that my Myeloma has come back aggressively the option I have is to go onto Lenalidomide, statistics for this are 2.5 years before death. If this transplant is successful then I could be looking at 5 or even possibly 10 years, there are no stats to provide any evidence of this as it is still classed as clinical trials. Partly due to the fact that new things are coming out that can distort the results.
So given the information I have, the 30% risk factor of dying within the first 2 years to 100% dying if I don’t, the odds don’t look that bad. So 70% chance of it working, sounds better to me.
It will be a long time to recover and the risks still there for a few years and I will have to monitored closely, particularly if I get any kind of infection or illness.
My next appointment isn’t until Mid August and as mentioned target time is September. One of the other things discussed was making sure that the paraprotein levels don’t start to creep back up while I’m waiting. I need to have further discussion with Dr Lee in Chester, but it looks likely that I will stay on the Velcade during the interim period to keep the levels as low as possible.