1938 / Class of '96 / Tumors, radiation, BMT, relapse, Thal / Last update:7/08
After suffering a lot of discomfort and pain for one year in my left hiparea, I was diagnosed with MM in 2/16/96. They found a 15 cm tumor in my leftpelvic bone. This was discovered with an MRI. After tests showed it waslocalized but was in the bone marrow, I had intense radiation. This onlypartially worked, reducing the size to 12 cm.
At this point I was walking with a four prong cane in one hand and a regularcane in the other (I now only have a slight limp.) I also had severe pain butdid not take anything for it. I then had a chemo pump, 24 hrs for 4 days thenoff for several weeks, 3 or 4 sessions of that. We discussed stem celltransplantation and proceeded with preparation.
Prior to giving my own stem cells, I was giving myself a shot every day forbuilding the white cells; I can't remember the name of the drug. It caused mesome problems: they finally determined that this was giving me the extreme painin my back. It was so bad I could only stand up, could not lay down or sit. Thiswas the only time I took pain medicine and it got me through the session. Whenthey tested my counts, they were so high they moved up the stem cell taking tothe next day.
I had two sessions of VAD in Boston, and had some heart damage from that butnot enough to cancel the stem-cell infusion. Went into New England MedicalCenter in Boston and had the transplant 12/6/96. The transplant went well,I came home and other than not being able to eat for a while, I had littletrouble. I was not on any meds or treatment of any kind from that time. I lostaround 27 lbs, most all was muscle mass.
Since the transplant, I have had a good 3 yrs but now have relapsed. Nothingin my regular test or scans showed anything. I was being tested every 2 months.I started having pain in my right chest, finally couldn't swing a golf club. Onecat scan showed 3 tumors in my right rib area and sternum. A bone marrow biopsywas negative, a chest biopsy into one of the tumors proved Myeloma was active. Ihad the right side radiated over a 3 week period. I now have a new tumor on aleft rib, which has not been confirmed as a tumor but they are considering itMyeloma-related.
I have been on Thalidomide for almost two weeks. I am on 100 mg and will beincreasing to 150 mg shortly and it will be increased to 400 mg a day if I canstand that. So far, the side effects have been minimal. My blood tests still donot show Myeloma. I am pretty inactive at this point, stamina is bad and weak.This hopefully is from a cold. If the Thalidomide doesn't work, it will be chemoand steroids. In asking questions, I find that the thalidomide has had verylittle effect on Myeloma. A second transplant would be very dangerous, and theyare not very effective either.
After going on 150 mg of thalidomide, the myeloma stayed in remission but the neuropathy started getting worse so I was taken off it. Over a period of time my kidneys also became weaker. I was on aridia for a while, then went to zometa which was good since it was only about a 20 minute injection. My bones, especially in the original pelvic and hip area appeared to heal some. When my kidneys got weaker, I was switched back to aridia and only every 2 months. Soon I was taken off the aridia as well. I felt I was just sitting around waiting for the myeloma to come back and when I mentioned that to my Dr., she agreed and I was put on 50 mg of thalidomide for I would say 5 years or so.
The neuropathy was getting worse, my feet, up my legs and my hands. I was taken off all meds over 2 years ago. My kidneys are in 4th stage failure but holding stable there. Hopefully I will not go on dialysis in the near future. I get tested for everything every 2 months, the myeloma continues to be in remission.
It has now been 12 years 5 months since my diagnosis. I turned 71 last month, my stamina is not good but I continue to play golf once or twice a week, riding a cart. I am still active in the martial arts, I can still teach and give seminars. I was honored when awarded my 7th degree black belt Master rank 8 years ago. No doubt that this activity has kept me going all these years. If anyone would like to contact me, please do so at email@example.com or firstname.lastname@example.org.
I encourage anyone to stay as active as possible. Don't let your disease keep you from making plans, Just go ahead and do it. I get up every morning and do what I can do. There WILL be a cure one day. Hang tough, do not give up. My best to all of you who are rowing the same boat as me.
Cape Cod, Massachsetts