What is Multiple Myeloma
Multiple myeloma (also known as MM, myeloma, plasma cell myeloma, or as Kahler's disease after Otto Kahler) is a type of cancer of plasma cells, immune system cells in bone marrow ...
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SO VERY VERY SCARED
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HERE IS MY STORY I WAS DX WITH MS AND RA,BUT NOW MY NEW DOCS AREN'T SO SURE. THEY TOOK A BLOOD TEST AND FOUND OUT I HAD HIGH PROTEIN THE KIND THATS INDICATIVE OF MM . SO THEY HAD mE GO TO A HEMO/ONCOL AND THEY AGREED. SO THEY SENT ME FOR THE WHOLE WORK UP AT THE HOSPITAL. I AM STILL WAITING FOR THOSES RESULTS. . I HEARD THAT IS RARE THAT PEOPLE MY AGE GET THIS I AM 34YR. IS THERE ANY ONE ELSE OUT THERE THAT IS IN THE 30''S OR YOUNGER WITH THIS. I AM SO VERY
VERY SCARED. I HERE THIS IS INCURABLE AND THERE IS A 5 YR SURVIVAL RATE and that depend on what stage you are in. i heard that if you are i stage 1 you have 50% chance to live five yrs and a 40% chance if you are in stage 2 and stage 3 only a 10 -25%. don't get me wrong i am not afraid of dieing (through theres nothing wrong with that. it is just that if i die in 5 yrs i will only be 39 and most important my kids will only be 12 and 9. i am more afraid of missing out on there lives and watching them grow and helping them through life little road blocks. IAM SO SORRY IF I AM UPSETTING ANYONE BUT I AM SCARED AND VERY SAD. IF ANYONE HAS ANY INFO THEY WOULD LIKE TO SHARE WITH ME PLEASES DO. OR IF ANY OF MY INFO IS WRONG PLEASES LET ME KNOW, THANKS Posted on 05/22/09, 11:05 am |
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i know its scary but the prognosis is only a guide. wait till others come back to you on this site, people are still around after 12 years. try not to get too scared, i am to but i try and focus on the fact that i have had chemo and steriods for 6 months and am now in remission and feeling good, so i focus on the now not the future. you need to wait till your tests come back to you.
good luck all the way from sunny scotland 
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Butterflys, you need to calm down. I know it's scary. I'm 55 and was diagnosed almost one year ago. I had the high-dose chemo and stem cell transplant done last January at IU Medical Hospital in Indianapolis. I am in remission and that protein you spoke of is undectable. I left the hemotologist I started with for another who specializes in MM. She's great because I think she is on the cutting edge of latest developments. The first one I started with I thought was "old school". So find a hemotologist you are comfortable with. The hemotologist I first saw believes there will be a cure in the future. I know of a person who has been around for 16 years. I am sure your doctor painted a grim picture. They have a tendency to do that at the beginning so that they give you "full disclosure". I am sure since you are young your prognosis will be very good. Your young age is in your favor.
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Hi! I am 33 years old mother of two beautiful girls, 7 and 5 yrs. I was diagnosed stage 3 a little over a year ago. By the time they diagnosed me my first doctor gave me 6 months. 80 percent of my bone marrow was cancer, lesions from my skull to my thighs, 2 broken ribs, tumors in my brain and chest. I was no longer able to walk. Now a little over a year later I feel better than I have in I can't tell you how long! I did Revilimid/Dex therapy with great results then a Velcade Study and I am now pretty much cancer free. I think a cure will be in our life time. I have seen leaps and bounds made in the treatment of this disease in the short time I have had it.
I am brand new to this site. Hope to chat again with you. Last time I checked the bottom of my foot I didn't see any expiration date, I'm pretty sure there isn't one on your foot either! I try to deal with one day at a time and rely on God. Best wishes!
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Most of your anxiety is fear of the unknown.
Do some homework to educate yourself and become proactive in your care. Right now myeloma is not curable but is being better managed than ever before. Forget the 5 year statistic it is not really valid and comes from older data. Yesterday I had my stem cells infused so my next couple weeks will be a bit rough. Make sure you bring a notebook or a friend with a notebook to your doctor visits so that your questions get answered and you can do some research.
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Hi Butterflys~~ sorry to hear/see your fear! Please don't fixate on your statistics because they are false and as others have told you, are based on very old information. I too was diagnosed with Stage III with lesions on all my bones and crush fractures in my spine and was told that I'd have only 6-12 months to live. Well, that was six years ago and I'm feeling better than I have been in a long time, years in fact, and all because I'm on a new drug -- Revlimid -- and I'm sure that you will find a drug that will be just as good for you. So please, focus on the future because you do have one -- Myeloma is quickly becoming a 'chronic' rather than a 'terminal' disease with plenty of new treatments and drugs which are making all the difference. So...get onto the International Myeloma Foundation (IMF) and ask them for their FREE package of the latest information, then read it all, and you will have a whole new perspective based on FACT rather on the hear say that you are using at the moment!! Best wishes, Cath
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Butterflys,
Hi my name is Camille. I was diagnosed with SMM now four years ago. It is scary. BUT the statistics will scare you to death. Remember statistics are a percentage of people with the disease. Not YOUR statistics. I have been smoldering now for awhile. My numbers have slowly increased and still are not high enough to even begin worring over. I go the hemo. ever four months. I hote that part causes me anxiety to have to go. But I am doing well. My first suggestion to you is if you drink diet sodas or use any form of articial sweetner STOP NOW.... You have enough problems without it... My aches and pains greatly decreased when giving up the artificial sweetners....Keep your head up and let us know how your visit went. Camille
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Hope you can calm down.... it is scary, yes, very. But I have been around almost three years now. Eat well, drink lots of water, and find a hematologist that you like and who is competent. I was stage three when diagnosed. I am now on Revlimid 5 mg. and doing very well!
Take care..... be brave. Things will turn out better than you think.
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