has anyone lived as long as me with multiple myeloma

I was diagnosied with stage II multiple myeloma at the age of 42, in 1995 . my local doctor said i would probably live only 30 months. i was not happy with that prognosis at all!! i had a teenager just graduateing from high school, and one other child just starting first grade, how could i leave my children without their mother.  unfortunately that happens much to often, and i was going to do my best not to let that happen to my two sons. i investigaged every option i could find, and Arkansas Cancer Research Center kept coming to the front of the line as the best possible option. They were doing clinicial trials that were very aggressive. It included two stem cell transplants three months apart.  It took 6 months of chemo and getting me ready to harvest my stem cells.  Well after the frist transplant i was very saddened to find out that i got no response from the first transplant.  They suggested i consider a donor transplant and i realized i didn't know anyone that lived over a years after that proceedure. i said no.  I returned in three months as plan for the second stem cell transplant and to their amazement i was in conplete remission. i did the second transplant as planned.  The doctors told me the myeloma would probably return in 3 yrs. it did. I  took more chemo but could not finish the prodocal because of pneumonia. I reached another remission anyway.  My doctors at Arkansas suggested i be put on thalidamide. I started on a high dose and after a while started getting neuropathy in my hands and feet. we lowered the dose. and then finally stopped taking after probably about a year.  Anyway i have been in remission ever since. although I have broken both my femurs at different times and had surgery to put rods in my thighs. and i have broken several small bones in my feet that did not require surgery. that was in 20002 through 2004. Lately i have not broken any bones and i just celabrated my 57th birthday. Wow i never dreamed i would live that long. I don't know anyone one else that has servived that long, but i feel sure there are others out there like me. i feel i have experenced a real miracle. and i know there must be others who have also beat this disease. please let me know if anyone out there has lived as long or longer than me. It surely would give hope to others who are in this battle that there is light at the end of the long hard struggle.

I just happened on your post and am celebrating that miracle with you! It's wonderfully encouraging to hear great news like yours on this site. Hopefully others will respond with their stories of survival.

Thanks for sharing your story,

diane

On Feb 21, 2010 12:49 PM lovingspouse4 wrote:

I just happened on your post and am celebrating that miracle with you! It's wonderfully encouraging to hear great news like yours on this site. Hopefully others will respond with their stories of survival.

Thanks for sharing your story,

diane

Wow!!

Your story is so similar to a guy who was diagnosed in the early 90's as well, he is celebrating 17+ years and I think might have been further along than you were.  He too went to Arkansas and went through radiation (he had rib fractures), 2 stem cells, and went into remission until 2000.  He then went on Thalidomide went put him back into remission and he is still there.  Arkansas must have been doing amazing things back then!!

He is a realist and knows he might relapse again but with the new drugs out there and the ones we are hearing about that might hit in 2011, he is also an optomist!! 

He sponsors a golf outing every August in York, PA.  If you live anywhere close to PA, would you consider coming.  His golf outing went over $100,000 in contributions to the MMRF this year!  Celgene is the largest sponsor, they gave $10,000 last year.  However a good friend of mine and myself chuckled since we are both on Rev and 1 month of our pills paid for that, indirectly of course.

My buddy I just mentioned has non secretary MM, meaning it doesn't show up in his blood.  He's had a fracture in his spine and a tumor removed from his neck but...he's had MM for 7+ years and is in remission.  He's young, 49.  He goes for a PET scan every six months to see if there's 'activity' - he goes to Hopkins.

I am a newby.  Just celebrated my first year post diagnosis. HaHa...I started Rev/ld in August, Mspike down from 4.2 to 1.5.  Not good enough for my oncologist here, so he increased my Dex to 40mg once a week.  He may add Velcade when I see him again in April to get the Mspike down so I can gather my stem cells at U of P.  I will delay the transplant as long as I can but I will probably get one in time.  I'm 56 and living normally now, gym 5X a week, about to go to Florida for a golf trip.  No bones issues, just the nasty protein.  Mine obviously shows up in my blood.

So please let me know if you would be interested in joining us at the Golf Outing.  The 3 people I just mentioned are the only MM patients there so it would be great to share another success story.  If you have interest, we can share contact information in a private message.

Congratulations, stories like yours are so incredibly encourgaging for those who are still in the initial stages of their treatment.  We are going to beat this thing, in our lifetime, I am very confident of that!!

NYYfan

don't wait to long for transplant if you do to much chemo or radiation it may kill the amount of stem cell you need to harvest for you transplant. Ask your doctor about that. i ran into several people that were not able to get wanted transplant because the did too much treatment prior to transplant and their stem cells were not enough or of poorer quality. i had very active myloma it was not what they call "smoldering" or inactive disease. It was Kappa light chain multiple myeloma with IgG of 542 mg. IgA 41 mg,  IgM 45 mg.total protien 8.9 g with dence-jones protein of 8.1. i also had an expansive lesion of left sacrum and iliac wing, which caused my pelvis to facture. I was not able to walk for about 10 months. in other words i was in terrible terrible shape. Everyone including my doctors thought i was in big trouble and frankly did not give me much hope. So go forth and fight hard and wise, seek information and get more than one openion. Like i said i am a surivor of 15 years as of first dianosed. much love and hope to everyone fighting this terrible cancer. There is hope i am proof of that.                      cathy

From Anna,

Hi mmpatcathy, Welcome to the group.  Dad has had MM almost 12 years. You bet him by 3 years.  He had 2 stem cell tranplants not long after they found he had the MM.  He was in remission for about 5 years. He's not any longer.  He's been off and on chemo for the past 6 years.  All things considered he's been pretty well.  He has had some set backs but he never thought he'd still be here.  He had nose bleeds.  He's not broken any bones. Not yet.  He was on bone strengthener for years till he got the dead jaw thing where the jaw bone gets to hard and dies.  He has also developled Crohn's Disease.  He's on Velcade and Dex right now. He's taken pretty much everything out there.  If had been living in Memphis, TN when they found his cancer he would have gone to the hospital in AR to.  We moved and found out he had the cancer not long after moving to Knoxville, TN.  They got enough stem cells from Dad the first time for 5 transplants. He had them only give him half back.  That didn't put him in remission so they put the other half back and that's what put him in remission for 5 years.  I'm glad they were able to put you in remission 2 times.  Don't think Dad's system could handle a 3rd transplant.  He's immune syetem is not good at all. 

Your friend,

Anna

Cathy is right.  Radiation and Revlimid can have a very negative impact on stem cell collection/harvest. 

Best of luck

Doug

Hi Cathy,

Wow!  What a great story.  You are an inspiration to all who suffer with cancer.  I was diagnosed in February 2006 and also treated at UAMS.  I was in stage III with 23 lesions and a fractured vertebra.  I had chemo and two SCT's and am now in complete remission and off all chemo.  My doctor says I am cured and feels the MM will not return.  I hope and pray he's right.  He is determined to find a cure and, God willing, he will.

Take care,

Lois

Congratulations!!!!! I was diagnosed with end stage MM in October 2004 at age 60 I am now 66 and in remission. I did it with natural healing, this worked for me but not everyone is so fortunate.  Take some digestive enzymes with your calcium magnesium supplement and that should help strengthen your bones.  All the best MMS

PatCathy,

Good Evening Cathy;

CONGRATULATIONS! 15 years and counting. Especially when you factor in how little was known about MM in '95.

Wow i never dreamed i would live that long.

I believe it was Yogi Berra who said: "If I knew I was going to live this long I would have taken better care of myself."

i know there must be others who have also beat this disease.

I've had more than one medical professional tell me that they are on the cusp of finding a treatment for MM. Soon, we'll all be joining you in a victory dance! I hear that Cath is throwing a party!

It surely would give hope to others who are in this battle that there is light at the end of the long hard struggle.

I agree! Don't be a stranger, come back and share with us your experiences over the last 15 years. As I mentioned, at your Dx. MM was a death sentence.

Take care;

Kevin