Support for Multiple Myeloma

haynycr said:

I would greatly apprceiate any info you could give to me on mm. My mother -in law was just diagnosed with this on Thursday and we go for a bio on wed. Please give me info on what to expect. She has had terrible back pain. Hope you are doing well.

pc_thompson said:

Betsee,

Sounds like you have had a very tough go of it. Wish you nothing but the best. Keep a positive outlook, it makes things easier to handle. I was diagnosed with MM in June of 02, and have done radiation, chemo, and two stem cell transplants. Feeling good now, with things more or less under control, so it can be done. Would be happy to share my experiances, if it would help you. I find that if you have an idea of what to expect, it makes things more tolerable. I get my care at University Hospital in Cleveland, the Ireland Cancer Center. It also helps if you take and active role in deciding your own treatment options. Never be afraid to ask questions or be a total pain in the butt if helps you be more informed.

Shot me a note if you like, and the best of luck!

Andy

DrSteve said:

Hello, Betsee and others.MM hit me like a ton of bricks end of Oct. 2002 with the hyperviscosity, decreased hemoglobin, lost 3 inches in height(all in back that collapsed)and 40 lbs. in less than 3 weeks.Went through pheresis to delete 6 liters of bad protein just to keep me alive long enough to begin the chemo. for 4 months. Then an autologous stem cell and experimental T-cell transplant. These lasted for a few months before the MM reared its ugly head again with a great vengence that gave me 4 to 6 months to live. Barnes Hospital got me into an experimental program which uses Revimid and dexamethasone as the drugs. The change for me has been dramatic. My monoclonal spike has dropped from 6.5 to 1.6 in 56 days. My back still kills me, but that will be the case for the rest of my life. When I am off the steroids, the other bone pain is also quite nasty,BUT I am still alive and working. I see a full day of patients and still exercise and run 3 miles 3 to 5 times a week. It hurts like the devil, but it hurts anyway. So I force myself to do it. With this disease, as others have said, your attitude is everything. Be strong for yourself, and more for your loved ones. They know the struggle you're going through, but it's easier on them if you can fake some of the strength. Good luck and my prayers go to you and your family. There are many great things on the horizon for this disease. Keep the faith. DrSteve

GeoM said:

My husband also has myeloma.
I was wondering if anyone who reads these messages has read about the protocol which cured a guy with myeloma. This protocol is listed on many web sites, just do a search with these words "myeloma beta glucan remission Scheinbart" and you will find them. Anyway, for right now, here is one of the sites which list this protocol:
www.beta-glucan-13d.com/beta%20glucan%20myeloma.htm
I found that Eric A. Scheinbart, M.D., who is co-author of this protocol is at:
Memorial Family Medical Assoc.
213 Mims Rd # A
Sylvania, GA 30467
(912) 564-2026
I did not contact the place. I would like to know if any of you had any experience with taking any of the meds listed in this protocol, and what kind of results you had. Please comment for all of us if anything good or bad happened to you.
Here is the protocol:
- Beta 1/3 D Glucan
- Mak-4
- Mak-5
- Pro-Boost Thymic protein A
- Gerovita GH3
- Maitake mushroom extract
The quantity and how to take everything is described on the web site above.
I did lots of reasearch on each of the meds listed and I found very good things about all of them. It's only one thing I found bad (?) about beta-glucan, so I don't know if beta glucan is good for everyone or not, although, it is stated in many places that is very good for MM.
This is the bad thing i found:
http://www.jbc.org/cgi/content/full/278/3/2043
Does anyone undestands well this article ?
Thanks for reading this comment and God bless you all.

Orange007 said:

Wow!
I am 58 and did my second stem cell transplant May of 09. Lately my platelets have been dropping, sometimes to dangerous levels, but we are treating that. So far the mm is in remission. I certainly am not the same person I used to be, and it's hard to cope with that. --- I don't know if you're a Christian person, but let me tell you part of my story and this may help you:

Before I get on, why are all of you people giving mm respect with capitol letters?
It doesn't respect you.

I was diagnosed with mm, early in 2007 after a routine physical. I have had lower back pain most of my life and even a compression fracture in L1 after falling off a ladder at work. I had driven truck for 30 years when the doctor told me she found some abnormal spikes in my protein levels. She then referred me to a local Oncologist, and then to specialist is Pittsburgh. At first he thought it might be MGUS and then the bone marrow test showed positive for mm. I was devastated and thought I would die any day, regretting not seeing my sweet Terry, sons, Rob and Mike, and grandson Jonas anymore. I was as low as I could get. Then I decided not to take this lying down. You can give in, or you can fight. I was never one to give in. Even my wife, Terry, said I was a rebel.

For the months that followed I was put on a regiment of some very serious meds.
The steroids were the worst and caused permanent nerve damage in my hands and feet, mostly my feet. I had a port put in and the home health nurse would come almost everyday to flush the lines and take vitals. Soon I learned to flush the lines myself. At that time I was gearing up for the asphrisis, when you donate your own stem cells and put them into deep freeze to be injected after chemo. The nurse came to our home and gave me a shot of neulasta, to move the stem cells into the blood stream. I knew there would be another shot the next morning; it was a two phase thing. Some paperwork described it as perhaps having some bone pain, much like you do when you have the flu, and would probably start at the hip and pelvis area. BELIEVE ME, IT WAS NOTHING LIKE THAT. By mid-afternoon the pain started to come in pulses, getting ever stronger to the point I could hardly stand it. On a pain level between 1 and 10, it was a 12. Mind you I can take a lot and have a high resistance to meds, but this was unreal. At first I sat in a chair and gazed thru the TV, trying to take my mind off of it. I struggled and stayed up all night, finally nodding off around 5:30AM. Morning came and I knew my wife would be off to work around 6:30, and the home health nurse would visit shortly after that.

I got cleaned up a little and had some tea. The nurse called and said she was on her way. As I sat there, at the kitchen table, I pulled out our laptop to take my mind off of the second phase of paid that was soon to come. They said it start around my shoulders this time. NOW THIS IS THE IMPORTANT PART: I sat there scanning thru web pages of Christian sites looking for a medallion I wanted to get my wife. On one of them were the lot of pendants and medallions, but along the side of the page was a list of patron saints and what causes they helped. Mind you, I have been Catholic all of my life, but never put much faith in the saints, thinking it more-or-less something man had done and not God. While scrolling down thru the saints, I found the name Lazioso Peregrine. I read about his story which intrigued me. He wasn’t even Catholic at first and was very rebellious. And then I softly, out load, I read the prayers and novena that followed. Immediately the pain left my shoulders, as if someone had turned off a light switch. It was not something of the mind or brain, but there was divine intervention thru the help of St. Peregrine. You see, I wasn’t looking for him, HE WAS LOOKING FOR ME! I was merely looking for some jewelry for my wife, and he found me. He took away my pain and suffering, and intervened for me to God, as a close friend helps another.

Dave

kickbox said:

Andy,

My husband was diagnosed in May '04 with MM. 41, great health, active, and in shape. What a shock! Anyway, you said you were up for questions so I have one fo ya. Jim has responded well to Thalidomide, decatron, and arideia and is almost in the "remission" phase 10/04. His Dr's want him to do a stem cell transplant as early as January. They say it is the optimal time becasue he is so healthy. We go to Barnes in St. Louis. With your experience through all your trials, what do you think? Should we go ahead with the stem cell transplant? It is a very scary thought to be so vulnerable. Your comments are appreciated. Best luck to you, our prayers are with you and all those who share MM.

Sharon