I will try to answer those questions, of course this is only my opinion which I guess, in my case, the only opinion that really matters. (smile)
The doctors believe that since Thalidomide helped me before, the low dosage I am on now is contributing to the lowering of cancer activity, blood protein level, (active cancer cells in the blood) not only now being contained but actually lowering into the normal range. They intend to keep me on this medication until that ugly blip shows up again in my test. It will happen, could be tomorrow, could be months.
In my own mind, I believe the thalidomide is doing a good job, I also take your favorite tea, Essiac. Something is still keeping me alive, so I continue with those. I also get the monthly chemo injection which help strenthen my bones. I have never watched my diet, I eat anything I want so a cancer diet may be important to some, it is not to me. I also believe that even though I am stretching this, my depression is only occasionaly, my attitude remains pretty good and I continue to stay physically active, at least as much as I can. My body has deteriorated, continues to do so, but I have learned to allow for that and now know when to quit, to rest, not overdo, (at least much better than before). I have learned that even though it goes against my grain, the doctors are correct, take the pain meds every day, even if I can cope with the pain. So I take my oxycontin faithfully, twice a day and if needed, in between, a oxycondone, very seldom. It has taken me a long time to accept all of the above but I have finally done so.
Others who have survived this type cancer this long?? I am sure there are many others out there but I know of only one. A gentleman who Dana Farber would not treat and gave 6 months to live. He had one of the first stem cell, bone marrow transplants at New England Medical Center for this type cancer. This month he celebrates his 10th year since his transplant. He has not relapsed. He is the reason I went to NEMC, had the transplant 5 1/2 yrs ago. I relapsed after 3 years, it showed up in my skull, upper left leg bone, right rib cage, sternum and my spine. After radiation and other treatment, I was in remission up to about 4 months ago, skeletal scans have shown no new areas infected. Now I am in remission again. I am in contact with many cancer people, mostly on the internet, I try to help them get through trying times. I do not know of any others surviving this type cancer this long. They surely are out there, but I have seen many die including a friend of mine who only lasted 2 years after his transplant.
As far as the doctor's learning from my experiences, they have always tagged me as being "unusual." Unusual from the start, having that 15cm tumor, unusual how I handled the treatment, "Handling the transplant like a kid." I know, no doubt in my mind, that my Uechi training is responsible for my being alive today. It prepared me both mentally and physically to meet this thing head on and fight it. Oh, it's going to win the battle, but I know I am giving it one hell of a run, and who knows, maybe something new will be found in time to bail me out. The doctors agree that my training has been an important part of my survival and quality of life. They also expressed their interest when I ask if I could take the Essiac. They read about it and since it is well boiled, agreed to let me take it. They are very open minded when it comes to this sort of thing. They also had an interest when Steve Benson used his hand treatment on me and took away some serious pain. They knew I had pain and at that time I just ate it, wouldn't take any meds for it. So when I suddenly came in with little or no pain, they took notice. One doctor ask me if I knew anything about the magnets. So there are some things they have learned from me. I hope that maybe, some of the things I have done, will help others cope with this devil. I have known physical pain in my life, we all have, but I can tell you right here that bone pain, deep bone pain is about the worse I have ever experienced. I know this is a long post but hopefully it gives you a little input from one who has been through hell and has so far survived. It can happen to you, it can come out of no where. Take care of your body. If you have a nagging problem, your body is telling you something. Get it checked. Take care of that immune system, it is working for you every day. If you ever need it for a real serious fight, have it ready to go.
George, good questions, hope my long answers do not put everyone to sleep.
Mary,,,,thank you for the support. I am truly elated with this news. AND I will be glad to give George strokes on the golf course. I just don't think I could lose now even taking on Tiger. (-: I feel GREAT!