Hello to all,
For the first time, my wife and I attended a Multiple Myeloma Seminar in Boston. This is a well organized seminar that moves around the country and the doctors are all specialist in myeloma cancer. The seminar is for patients and care givers. The reason we attended is because we have had little success in finding other long time survivors of this uncurable disease.
We won't be attending any others as this, like all web sites, is geared to help newer diagnosed patients. I did learn a couple things of interest which I decided to pass on. Even if you do not have cancer, like most, it has touched someone in your life. I will do a quick history of my case. Multiple Myeloma is describes as a rare blood and bone disease, uncurable but treatable. There are about 14,000 people diagnosed in the U.S. a year. The average life expectancy when I was diagnosed was 24-36 months. I was given as little as 3-15 months at the time since I was very involved by the time they found it. That was Feb. 16th, 1996. I have been very fortunate, I don't know why. The survival average is now, 34% make it to 5 yrs. I can get no history on the 34% after the 5 years. I'm sure there are a lot of long time survivors out there but I haven't been able to find them. My hospital in Boston has one lady who has survived over 4 years. I believe Geraldine Ferero is around 8 yrs. At the seminar there were over 60 myeloma people there. 5 of us had survived 10 years. I spoke to two, both 10 yr. survivors. What I learned more of is the info I want to pass on. The medication Bisphosphonates, which is a bone strenthening IV and it's long term use causing side effects. These drugs which I received are Aridia and Zometa. Very commonly used on cancer patients. I first received Aridia when I received my first bout of radiation back in 1996. Then I received it every month well after my bone marrow transplant in late 1996. This was a 4 hour injection. Then Zomta came out and it was found to be stronger and could be injected in about 25 minutes. I found this to much more convenient. After a while, they found that Zometa did more damage to the kidneys than Aredia so I was switched back and put on the 3 hr. injection. My kidneys continued to deteriorate so I was cut to getting it every 2 months and back to 4 hr. injections. Since my kidneys were hit with all the radiation, including full body radiation, they found that my kidneys fell into 4th stage failure and took me completely off the Aridia. I can't get anymore of these meds. I might mention that after long term use of the two meds., the original area, left pelvic bone and hip that were rotted and eaten away by a large tumor, have shown to be healthier and stronger. This was proven out by full body skeletal scans and other Xrays. So the meds do help. So one downer is if someone has kidney disease, they shouldn't be given these meds, or, they must be monitored regularly for more kidney damage. Another serious side to these meds, and I found out more about it at the seminar. I have a serious case of jaw bone disease. The oral surgeon called it bone shaling where bone spurs come through the gums and usually requires surgery. I was already diagnosed before the seminar and it got to me around 10 yrs after starting on these meds. At the seminar we found that it is now suggested to stop at 2 years if no active bone disease is present. Restart if new disease, (Myeloma is a blood and bone cancer) and they say 3 months between injections is an option. They didn't know this when I started. I have been lucky, they called off the surgery after prescribing a mouth wash which worked for me. I don't know how long but I will probably have surgery at some point. This interferes with eating and is very painful. So there are the facts as I know them both from experience and the seminar. There were only, I believe, two of us at the seminar with the jaw bone disease. Each of us had a yes, no, remote which let us respond to questions. Now to some better news. Many of us take Cholesterol lowering statins, e.g. Lipitor. Two important kidney saving counts are Cholesterol, under 100, and blood pressure. I take 40mg a day of Lipitor and three BP meds for blood pressure. All are working well for me. The good news, and I didn't know this, the Lipitor type drugs, called statins, are also good for healing bones, strengthening bones. This was good news to me since I have been off bones meds and cancer meds for getting close to 2 1/2 years. I do not think that these drugs are recommended for bone treatment, but, many of us are on cholesterol control and take these meds. This is a good side effect so it's something that can be passed on to folks who take statins.
That's it, I wanted to pass on this info. To my many friends who have inquired about my health, thank you, I am still doing what I can each day. I continue to play golf, teaching some Uechi and overall enjoying life to the best of my ability. I hope this info may be of some help to someone you know. Take care, stay healthy, and enjoy, life really is too short.
Thanks for taking the time,