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Diagnosed with MM where do I begin



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bito
Posts: 3
Joined: Oct 2009
October 30, 2009 - 11:20am

Hi everyone. Thanks for sharing such profound,insipring personal stories. what a bless!
A week ago my mom was discovered with multiple myeloma! needless to say the world just crumbled down on us. Anyways after the initial shock and denial i started searching for any source of info. i can get my hand on and that's how I came across this website. she's currently in India so i don't have much info. on her condition yet. I never heard of the disease before so its been an absolute bless and relief to came across the site. I know each case is different but i just wanted to inquire on the treatment plan as far as medications and diet or anything related to MM I'm in a desperate need. God bless all the survivors for the courage to share your stories.
Bito.

WHW's picture
WHW
Posts: 135
Joined: Jul 2009
October 30, 2009 - 11:39am

Bito,

May I begin by welcoming you to the site. It is a wonderful site to understand the experiences of others in dealing with MM. It is also a great site to begin your understanding of it from a medical point of view.

If you will take a look at the conversation thread next in line following yours, titled, MM Cancer, you will see 2 recent posts by my wife, LOW.

In her posts she provides some very valuable information about resources to understanding MM that she herself has relied heavily on since her diagnosis November 2005.

She just starting posting here at my encouragement. I found this site only recently since my own diagnosis of Prostate Cancer in June of this year. She is constantly looking for ways to give back to the MM community that has been so helpful to her. If she can provide you with any additional info, you have only to post to her (LOW) and she will be more than happy to reply.

Her journey through MM has been long and complex, because of it she is a veritable walking encyclopedia of MM from the patients point of view.

Good luck in you search and bless you and your family,

Sonny

bito
Posts: 3
Joined: Oct 2009
October 30, 2009 - 8:36pm

Thanks for the response. LOW's post was indeed valuable to say the least I just ordered the book and should be getting soon. One thing I’m absolutely in agreement with however, is handing it over to GOD. While science and technology do the “natural” treatment God does the “super” and the result is supernatural healing one that is beyond human knowledge. God bless you and your wife. Will keep in touch.

Orange007
Posts: 5
Joined: Nov 2009
November 20, 2009 - 1:32am

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:

I was diagnosed with mm, early in 2007 after a routine physical. 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. 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.

All my prayers,
Dave