On Thursday, I met with the transplant team, well, a transplant doctor, and I was introduced to the wonderful world of transplant options.
I have made my decision now about what transplant I will have, but it was useful to go through the options once more, so I have a rough idea of my future options. The one thing that became patently clear during this consult is that I will always be plagued by doubt. I will be plagued by doubt that I have made the wrong decision about my treatment. There are no guarantees in myeloma treatment and the truth is, nobody knows what the right answer is, until after. After I am gone, or if I am lucky, if I made the right decision and all is going well in twenty years time.
First things first, I was a fan of the doctor. He introduced himself to me by his first name and this does not happen often. In fact, it has not happened since my diagnosis.
In terms of transplants, there are three available to me, well, three and a half. The half is dependent on my results after the auto. Each option, is about time, my time left, and odds, and nobody knowing what is the best one for me. I suppose I am fortunate to have these options, because many people don’t. People do not have a sibling donor match and for those people, the auto and drugs is the only option. I have to see that my sister’s gift is a benefit to me, I just wish sometimes that it was not me making the decisions. There are too many variables.
Now, it was useful for the doctor to speak to me like I was not medically trained. I was provided with a helpful set of charts, which shows the risk of the procedures against the chances of the myeloma returning. Visuals are always of some assistance.
The first option and the most traditional, is the Auto. My stem cells. This has been around for longer and the stats, it’s always about the stats, say that there is a 2% mortality rate during the procedure. The procedure comes with a guarantee that the myeloma will come back, but nobody knows how long it will be before it does. Maybe a year, maybe three, maybe longer. Nobody knows. This is what I am having.
This involves donor stem cells entering my body. The procedure comes with a 30-40% mortality rate, but a 40% (according to this chart, although I have heard 10-15%) chance of a cure. The big C. The Cure. I have spent a considerable amount of hours considering this, and the truth is, I am not ready for the risk. I want to live now. A one in three chance of dying, that may or may not come with a cure is not a viable option for me right now. I could put my body through all of that for nothing and then run out of options. I am not there yet. I am not ready to die and the chance of a cure is too small for me to run that risk. You may think that this decision makes me a wuss, maybe it does, but I am not betting with my life. Not yet.
Here’s the problem then, if I decide to have one later down the line, the mortality rate rises to 60%. I am not there yet.
Now, this one is complicated. My understanding is that it is a reduced version of the Allo, which comes with a little bit of my own. This procedure has a 15% mortality rate. The Medically Trained People disagree with each other over its effectiveness because this, in the terms of myeloma is relatively new. Not new, but the stats cannot tell you if it can be a cure, because there has not been enough time to prove it. They do not routinely do this at UCLH. But, they do have a trial to see whether doing this reduced intensity directly after an Auto (three months after), has long term benefits. I would be willing to give this a go, but my body would have to behave during my auto to be considered. We know my body rarely behaves.
Another problem I have, in addition to the risk of death and not knowing whether the decision I am making now is correct, is that my sister is not an ever ending resource to me. If at any time I have hers and I experience something called graft versus host disease and It comes back, then I cannot use her stem cells again (well, theoretically I could, but it would not be useful). Though, confusingly, a little bit of this disease is a good thing; it fights the myeloma. A lot of it is bad, it means long term illness or, you know, death.
I know I am not a statistic, I am a person for the doctor told me so, but I do need to listen to the stats. At the start of all this, I was up for the Allo because it comes with the possibility of the Big C. Now, I have had the time to think about it and what the procedure means and where I am with My Myeloma, and what I want is time. I want time to live. Hypothetically, the Allo could give me more time, but it could also take it all away much, much sooner.
With all things myeloma, I think that time will help. Whilst the Medically Trained People may know what drugs are coming in five years time and the Big C is not in that bundle, there may be something in there to prolong the inevitable. Or in ten years. Nobody knows the answer.
For now, I am going down the safer route and I have to live knowing that my decision may be the wrong one.
Now then, what’s for tea?