CancerCompass message board discussion started by TXmom on 2/28/2008 http://www.cancercompass.com/message-board/message/all,21439,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ We just got the results back and my mom has stage 3 MM.  I was completely in shock, we knew it was MM but not what stage and when the dr said stage 3 it knocked the wind out of me.  She seems so healthy. Yes, I little skinny but she was sick with the flu and had lost a lot of weight but other than that she doesn't complain much about pain and still works like before.  She is 63 and the rock of our family, the rock of our small community.  I was wondering if anyone here has stage 3 MM and what is happening with you or your family member. I know every case is not the same but the things I have read about stage 3 doesn't sound good and the life expetency is not as long as I would have hoped.  I know its all statisical but still, I would like some input.  Thanks. TXmom Thu, 28 Feb 2008 00:00:00 GMT hello TX I do not have M/M but my brother who is about 1 year older than me does. He was DX with stage three and nearly died in december. he was given Velcade thalidimide and dex. His response was unimaginable with very little neuropothy his cancer is very agressive and is being preped for a transplant we have not used revlimid yet. Survival for him is not great but we will take what we can get. We live in the northeast and there are some very noted doctors here. good luck We wish the best for you  zazu1234 Thu, 28 Feb 2008 00:00:00 GMT Good Evening TxMom;"I have read about stage 3 doesn't sound good and the life expetency is not as long as I would have hoped.  I know its all statisical but still, I would like some input."I, too, am stage III, 49 y.o. and if you can believe the surveys/tests you take on the internet I was expected to live to be 82!Last time at the Drs. we were talking about improved life expectancies and he told me people are now surviving 10 years! I asked him if he could guarantee me 10 more years. He told me "no guarantees for 10 but you should make at least 5 more." I don't know if that's the answer you seek but I will caution you on your journey. Take the advice of the people who post here and live and enjoy each day as if it were your last. If you focus on the end you will become sad and bitter!Take care;Kevin K. C. Thu, 28 Feb 2008 00:00:00 GMT  T Xmom and Kevin:The staging of Multiple Myeloma is very subjective. I was told there is no stage 1V by my docto, (oncologist)  and other doctors say there is. So who are you to believe So do your best to stay healthy, and look at everything you can do to help yourselves. It is only the power of the mind that keeps us going and surviving against all odds. I was told I had stage lV and my doc said there is no stage 1V and I told her then I must be dead....All the best to all of you as you will survive longer than anyone else can tell you. Take it into your own hands. Any one who seeks some alternative treatment write me a private email or go to www.cancercenter.com and see what they offer along with their traditional medicine. We will over come..MMS On 2/28/2008 K. C. wrote:Good Evening TxMom;"I have read about stage 3 doesn't sound good and the life expetency is not as long as I would have hoped.  I know its all statisical but still, I would like some input."I, too, am stage III, 49 y.o. and if you can believe the surveys/tests you take on the internet I was expected to live to be 82!Last time at the Drs. we were talking about improved life expectancies and he told me people are now surviving 10 years! I asked him if he could guarantee me 10 more years. He told me "no guarantees for 10 but you should make at least 5 more." I don't know if that's the answer you seek but I will caution you on your journey. Take the advice of the people who post here and live and enjoy each day as if it were your last. If you focus on the end you will become sad and bitter!Take care;Kevin  mmsurvivor Thu, 28 Feb 2008 00:00:00 GMT Hi TX mom -  I too have stage 3 and am 62 years old, and have had it for almost 5 years.  There are now so many types of treatments available and new drugs coming on line almost weekly that its not the extreme worry that it once was.  Make sure that you get as much information as you can, this site is fantastic, but do be prepared to winnow out what you feel may not be productive for your situation!  There is much to be learned from many of the people who post here as well as from the staff and their articles.  If you have specific questions, do not hesitate to ask and be prepared to be inundated with responses from others who have been through similar situations.  One day MM will be a Chronic rather than a Terminal disease -- we are well on the way!!  Take good care and our best wishes are with you both!!  Cath   poppy/cath Fri, 29 Feb 2008 00:00:00 GMT  Good Evening MMS;"I was told I had stage lV and my doc said there is no stage IV and I told her then I must be dead...."When I was Dx. Stage III, I was naive and overwhelmed and grasping so I asked my Dr. how many stages are there?He told me: "There's four, but you don't want to get to four!"Whether there's a fourth or not is mute to me. I'm competing with this disease TODAY...not tomorrow. Yes, I'm planning on a tomorrow. But I'm in the competition of my life TODAY. Take care;Kevin K. C. Sat, 01 Mar 2008 00:00:00 GMT Good Evening Cath;"One day MM will be a Chronic rather than a Terminal disease -- we are well on the way!!"  AMEN!Every day I read something about this disease that encourages me. You are absolutely right, these Drs. are very near the break through we all seek. We all must remain positive, informed and keep challanging those in the medical field to look for alternatives to the "cookie cutter" treatments they offer.We will overcome this disease! We must!Take care;Kevin K. C. Sat, 01 Mar 2008 00:00:00 GMT Hi.  I an very sorry to hear about your mom.  My mom was diagnosed with Stage 3 MM almost 7 years ago. She passed away November 2007.  We were told most everyone who has MM is not diagnosed until state 3 because there are almost symptoms until now.  She under went a Stem Cell Transplant almost immediately following the diagnosis.  I would recommend this.  It bought her 2 1/2 years of. a decent life.  After that she under went Thalidmyde (?) Velcade, Revamid, trails, and on.  My mom too was healthy had lost weight only due to a diet she was purposely on.  This is a very ugly disease.  I will tell you never to give up hope and truly live each day as if it maybe the last.  Take it from me it sneaks up on you when you  least expect it. Please let me  know  if I can answer any questions for you. MarieBrownsburg, IN Elegant71 Sat, 08 Mar 2008 00:00:00 GMT Good Evening Marie;"She under went a Stem Cell Transplant almost immediately following the diagnosis.  I would recommend this.  It bought her 2 1/2 years of. a decent life.  After that she under went Thalidmyde (?) Velcade, Revamid, trails, and on."Was you Mom's SCT an auto or allo? It appears this placed her in remission for those 2 1/2 years? Was she offered an additional SCT after her relapse?I appreciate your response and hope you don't find my questions prying or invasive.Take care;Kevin K. C. Sun, 09 Mar 2008 00:00:00 GMT So sorry about your situation, but don't give up hope yet!  My dad (a living, breathing saint, if there ever was one) - has MM, Stage III. I am new to all this and he was diagnosed in October/November of 2007. It was ROUGH at first... he has several lytic lesions in his hip/pelvic area (this means tumors/holes in your bones, from the cancer) and he also got a severe compression fracture of the spine, which was killing him. He was in constant, excrutiating pain... and the doctors were surprised at first that nothing seemed to be relieving his pain. He started treatment in early november and although the first month or two were rough, he is SOOO much better now than he was... But it took some time and happened gradually.His treatment is Velcade [at the doctor's office]  and about 3 weeks into it, the doctor said his cancer was responding to it 'beautifully'. His IGA numbers shot down drastically (which is good).  The other part of his treatment, he also takes steriod pills (Decadron) just for 4 days, every other week, along with some other medicines/pain pills, etc. Remember, everyone is different but so far, the Velcade treatments are really not that hard on him, considering. Worst thing that has occured from it so far it occasional diarreah. He used to get the Velcade twice a week (which is standard) but now just gets it once a week b/c i thought two times was a little too much for him. Now, 4 months into this, he is no longer using the walker, and uses a cane - walking much better/faster. His spine fracture has healed [gradually] - and that was huge factor for his pain relief. In November/December, he could not even sleep in a bed. Today, 4 months into treatment, his blood/cancer levels remain excellent and the Velcade is still working. And believe me, upon diagnosis, from seeing his pain & then hearing 'Stage III' - i really thought he was near the end but he's not! So try to keep positive (i know its hard). I know this isn't going to work forever, but it's working for now, better than i ever thought or dared to hope it might -- so be strong and have faith. And learn everything you can about this cancer, the internet can be so helpful. Good luck -- and i'm sure your mom will be fine for years to come.       DebJr Mon, 10 Mar 2008 00:00:00 GMT