1937 / Class of '96 / Tumors, radiation, SCT, relapse, Thal, remission / Updated: 12/09
After suffering a lot of discomfort and pain for one year in my left hip area, I was diagnosed with MM in 2/16/96. They found a 15 cm tumor in my left pelvic bone. This was discovered with an MRI. After tests showed it was localized but was in the bone marrow, I had intense radiation. This only partially worked, reducing the size to 12 cm.
At this point I was walking with a four prong cane in one hand and a regular cane in the other (I now only have a slight limp.) I also had severe pain but did not take anything for it. I then had a chemo pump, 24 hrs for 4 days then off for several weeks, 3 or 4 sessions of that. We discussed stem cell transplantation and proceeded with preparation.
Prior to giving my own stem cells, I was giving myself a shot every day for building the white cells; I can't remember the name of the drug. It caused me some problems: they finally determined that this was giving me the extreme pain in my back. It was so bad I could only stand up, could not lay down or sit. This was the only time I took pain medicine and it got me through the session. When they tested my counts, they were so high they moved up the stem cell taking to the next day.
I had two sessions of VAD in Boston, and had some heart damage from that but not enough to cancel the stem-cell infusion. Went into New England Medical Center 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 little trouble. I was not on any meds or treatment of any kind from that time. I lost around 27 lbs, most all was muscle mass.
Since the transplant, I have had a good 3 yrs but now have relapsed. Nothing in 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. One cat scan showed 3 tumors in my right rib area and sternum. A bone marrow biopsy was negative, a chest biopsy into one of the tumors proved Myeloma was active. I had the right side radiated over a 3 week period. I now have a new tumor on a left rib, which has not been confirmed as a tumor but they are considering it Myeloma-related.
I have been on Thalidomide for almost two weeks. I am on 100 mg and will be increasing to 150 mg shortly and it will be increased to 400 mg a day if I can stand that. So far, the side effects have been minimal. My blood tests still do not 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 chemo and steroids. In asking questions, I find that the thalidomide has had very little effect on Myeloma. A second transplant would be very dangerous, and they are not very effective either.
I am 62 yrs old, have been a martial arts teacher for many yrs. I believe that training kept me strong mentally and physically. I was teaching karate even last year and playing golf along with running my business. I am retiring now, and hoping that I will be able to play golf before long. I continue the fight.
April, 2004: After my relapse 4 years ago, I was on 150mg of thalidomide for 11 months. Side effects were neuropathy in my feet and hands. They would not give me any more than the 150mg because of that. The neuropathy got worse so they took me off thalidomide completely. I did continue to get the Aredia injection every month. I was in remission and about 1-1/2 years ago I felt like I was just doing nothing but waiting for the Myeloma to activate again. My doctors at New England Medical Center agreed and put me on a low dose of thalidomide, 50mg a day. Since then I have stayed in remission. I switched over from Aredia to Zometa over a year ago. I have been doing fine, retired, playing golf and staying somewhat active in the martial arts giving seminars and sitting on promotion boards. My wife and I just got back from Florida, we go for about 5 weeks every year. I played golf an average of 3 times a week. Overall I feel good, my stamina could be better but I am satisfied with it. I had a kidney problem but not related to the Myeloma or treatment. The artery going to my left kidney was 95% blocked. Had a stent put in and that seems to have corrected the problem. We built a new house and I am busy busy working, building in bookcases, window seats etc. I am enjoying life and want everyone to know that Myeloma is not a death sentence. Prepare for a good hard fight and knock it on its rear.
June, 2006: After going on the low dose (50mg) thalidomide, I stayed in remission but as of May 1st, 2006 I finally went off completely. The neuropathy had gotten very bad in my feet and lower legs and my hands and fingers. At the same time, test showed a very small spike indicating that the Myeloma could be making a showing again. We are not alarmed at this time and my people in Boston suggested going on steroids to contain the Myeloma. I have not started that and am back to being monitored every month. I pretty well make my own decisions about the medication and I do not want to take steroids unless I have to. Since I am off the thalidomide, some of the neuropathy has gone away but I probably have some permanent nerve damage but I cope with this fine. My kidneys have been an issue. Because of all of the radiation, the Myeloma and other treatment, the kidneys are borderline 4th stage kidney failure. My counts are high but stable. They can go on like this for a long time, as long as they stay stable. Because of this problem, they took me off the Zometa every month and went back to Aredia. Depending on my kidney counts, I get that 3 hour IV every 2 to 3 months. The only other meds I take are for high blood pressure and I have taken only a small dose of oxycontin for about 6 years. I take that morning and night and keep the dosage low, it keeps the edge off bone pain.
Good news is that I remain quite active, play golf regularly and now teach my kids and grandkids karate and self defense down in my basement. They love it and it's great for my head as well. Physically I am careful not to hurt myself, I have never in my life had a broken bone. Even with all the original damage to my left pelvic bone and hip, I walk with only a small limp. Since I'm off the thalidomide, I feel much less "drugged", I am much more stable on my feet and I have more stamina. I feel great!! It has now been 10 years 4 months since my diagnosis. I feel like I can go another 10 years. I know that's a reach but why not?? They will find a cure one of these days and I plan to be around when they do.
June, 2008: I continue to do well, have been off all meds for the myeloma for over 2 yrs. I remain in remission. My kidneys are in 4th stage failure but they remain stable at that level. I play golf at least once a week, sometimes twice, I still teach some karate and participate in martial arts functions such as promotions seminars etc. My back has deteriorated and it keeps me from walking very far. I have also lost some stamina and it doesn't take much exercise to "drain me." My wife and I just celebrated our 50th anniversary in March. I really never thought I would make it to that one. I will be 71 yrs old this month, June 30th. I am getting email from all over the world and I welcome anyone whom I can help.
December 2009: Approaching 14 yrs. since diagnosis and I am still doing well. I think the only change is the one I hate to admit to, I'm getting old. That deterioration can't be helped. I remain in remission, my kidneys continue to maintain their stable 28 -30 % operation. No other changes. Wishing everyone out there a very happy holiday season. Also, to all my fellow Myeloma friends, a special wish for a great 2010 and on. One day, there will be a cure.
Bless you all, Bill Bauknecht
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