CancerCompass message board discussion started by zazu1234 on 12/8/2007 http://www.cancercompass.com/message-board/message/all,18723,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ multiple myeloma. peiod thats it. game over, end of story.  My brother was diagnosed with M/M 6 weeks ago.In our experience this is what I have seen first hand. We have to define the outlines. first definition of hospital: this is a large building containing doctors. Their goal is to extract as much money from the paitents and families as possible which is instructed by the drug companies (who control the doctors and the hospitals) these compassionless spineless coldhearted animals (actually animals would not do this to eachother) are not care givers or interested in anyones life (or death) they have only one goal. We are fully covered by insurance which makes us a candidate for "long term care" or until the cash flow is stopped ! Our great country and its health care system is set up this way because of the BIG players in control and it is more lucrative . believe me M/M is a death sentence and yes there are "survivors" and this is what they want you to believe so you lay down and submit to the white cloaked gods. I truely believe cancer and many other diseases have a cure !! but where can the big box health care generate the funds to pay the saleries for the hench men who hand down the sentence!! Thank god for the lawyers who keep these bastards in line. zazu1234 Sat, 08 Dec 2007 00:00:00 GMT Wow!   Isn't that the truth?  There must be cures for many cancers, but cancer is the biggest money-making curse in medicine.  I believe that 98 percent of the doctors care only about money.  Unfortunately, I have not met the other 2 percent.  Having been passed from doctor to doctor for 3 years, I was finally diagnosed with Multiple Myeloma and am still not being given any treatment.  The corrupt doctors are calling it Smoldering Myeloma, but my kidneys have been failing  for at least 3 years.  The whole medical field is becoming more corrupt and will do anything for money.  We people who have HMO's are really treated less than human.  From what I have read on this site, most patients have bad reactions to the drugs anyhow, so the ones who go into remission must be the lucky ones.  Best wishes to your brother, and I hope that he gets better treatment.  roadrunner Sat, 08 Dec 2007 00:00:00 GMT I am so sorry to hear you are going through this.  Not that it is going to make you feel any better, but there have been articles about doctors who are being fired and accused of belonging to 'pharmacomafia'.  I too believe there are cures for cancers, but of course, it would not pay off to cure everyone.  I can suggest you hang in there, do what you can and be assertive.  Let them know you are not going to let your brother go that easily.  Fight for his life as much as you can.  Know you are not alone in this cruel game, and we are each doing what we can.  The cruel reality of the world we live in is far too reaching.... Ivana84 Sat, 08 Dec 2007 00:00:00 GMT If you have smoldering myeloma then I would highly recommend using alternative means to keep it under control or reverse it. Products such as curcumin, resvertrol, quercetin, zyflamend, and proteolytic enzymes are highly effective against low-level myeloma. There are also a few homeopathic remedies (e.g. carsinosinum) that can also be used. Don't wait for the medical system to treat it at such an early stage .Regards,Craig Persel  photog Sun, 09 Dec 2007 00:00:00 GMT  On 12/8/2007 zazu1234 wrote:multiple myeloma. peiod thats it. game over, end of story.  My brother was diagnosed with M/M 6 weeks ago.In our experience this is what I have seen first hand. We have to define the outlines. first definition of hospital: this is a large building containing doctors. Their goal is to extract as much money from the paitents and families as possible which is instructed by the drug companies (who control the doctors and the hospitals) these compassionless spineless coldhearted animals (actually animals would not do this to eachother) are not care givers or interested in anyones life (or death) they have only one goal. We are fully covered by insurance which makes us a candidate for "long term care" or until the cash flow is stopped ! Our great country and its health care system is set up this way because of the BIG players in control and it is more lucrative . believe me M/M is a death sentence and yes there are "survivors" and this is what they want you to believe so you lay down and submit to the white cloaked gods. I truely believe cancer and many other diseases have a cure !! but where can the big box health care generate the funds to pay the saleries for the hench men who hand down the sentence!! Thank god for the lawyers who keep these bastards in line.Good Evening Zazu;Allow me to be candid with you.After reading your post I believe you to be quite angry. And understandably so! But be angry at the desease. I sure am! How dare it take me away from my wife and children."multiple myeloma. period thats it. game over, end of story." When your brother looks into your eyes he needs to see strength and support! If the above quote sums up your feelings towards him then I can only say shame on you!  "believe me M/M is a death sentence"How dare you come on to this board and remind all of the patients or their caregivers that they're going to die. Most of us have already been told so. We don't need need or care to be reminded by you! I've got less than two years, want to switch places?What you need to do is become as educated and informed as possible. When you go with your brother to the Drs. question them. And don't leave until they answer your questions. If they don't like it or you're not comfortable with their answers, find another Dr. The least you're willing to accept is the most they're going to offer! I also firmly believe that meds themselves are not the cure all we are meant to believe. We must suppliment the medicines with diet and changes in our lifestyles. Again, get educated. A poster here (photog) is a valuable resource, but many others are able to educate through personal experience. Watch the movie "The Secret." Attitude changes can not possibly hurt in his recovery."Thank God for the lawyers who keep these bastards in line."If you honestly believe this then you have never been through the legal system. Lawyers are the biggest whores to ever breath air. Don't think so, serve on jury duty. You'll come away with a different point of view.I wish your brother all the strength in this next period of his life,Kevin K. C. Sun, 09 Dec 2007 00:00:00 GMT Hello Kevin I did not realize that my post would make anyone remember that they had a serious disease. If I offended you then I am truly sorry !! This was not my intention. I am very upset because I cant comprehend someone going to the doctor 7 weeks ago because of something not related to a disease called Multiple myeloma. We are referred to a doctor at Danbury hospital We arrive on time and sit behind a large dark paneled desk. The doctor nonchalantly says "you have Multiple myeloma....what the hell is that ?? before this we did not know what an Oncologist was !! They seemed to move him along like cattle. All he said to me while my face was flush from any color and tears streaming down my face was " this is treatable and I promise i will not let him die"I then took him home and we both cried some more. Now every time we go we hear something different and it becomes VERY frustrating. I could not even begin to imagine what you ,him or anyone else with M/M feels. But I love him and would give any part of my body to help him.. It is so difficult for me and my family to watch the progression of his disease. I know now what M/M is and in our case It came through like a tornado with no warning!! Today I am taking him to Yale and maybe they can answer some questions in an honest and frank way. You see Kevin I NEVER meant to be insensitive to ANYONE here nor would I ever directly attempt to disrespect anyones feelings and if i did do this than i sincerely apologize as i am angry upset ,confused petrified,worried,and all the emotions associated with the unknown. please except my deepest apologies and I wish you and anyone fighting cancer the very best !  Ron zazu1234 Mon, 10 Dec 2007 00:00:00 GMT Hard to believe messages like yours can bring me to tears 7and 1/2 years after losing my father to MM.  I feel for you, because I've felt like you.  You are angry, and you are right, but you need to put that anger aside for now for your brother's sake.  Although it may appear hopeless, you can't give up.  There are breakthroughs happening all the time, and I truly believe it is forums such as these that will eventually find the cures we are looking for.  Although I lost my father, my cousin who was diagnosed last spring with CML, a deadly form of leukemia, and was given only 3-6 months at diagnosis, was put on a new therapy and has gone into total remission.  While I don't know if he is cured, it has bought him quality time that we never thought he would see.  The system is corrupt, but there are still stellar individuals who are trying to do their best and you have to search them out and try to get your brother better treatment.  (This forum is an excellent place to look for recommended doctors and therapies, but the internet as a whole has a lot more information now than it did 7 years ago).  While my father was in hospital, (in Canada), if we ever complained or questioned the treatment he was receiving, we were told to complain to our politicians.  I couldn't help but feel they were deliberately not doing everything they could so that we would lobby on their behalf.   I'm convinced the system can work in Canada, but there is a powerful group working to destroy it and unfortunately it is the drug companies and some in the medical profession who are deliberately undermining it.  I watched Michael Moore's Sicko this weekend and it only made me more convinced they are actively trying to convince us that universal medical care is not possible.  It would, if we didn't have to pay through the teeth for drug patent protection that we already paid the drug companies through our tax dollars to research.    Seems like many in the medical profession took the hypocrite oath, not the hippocratic oath.  Call me a conspiracy theorist, I don't care, if there's smoke, there is usually a fire.  (And following on that thought, yes, they should be treating smouldering MM - how can "THEY" possibly justify saying that with every other cancer early treatment is essential, and then allow MM to progress before doing anything??).I promised my father that I would keep looking for both the cause of and a cure for MM, even though I do not have a medical degree or any special skills.  That is why I am here, today, still searching, reading what other patients and caregivers have to say about their experiences to see if there are any common experiences that might provide a key.  You never know and I can't give up hope.Your message brought back many of the emotions I felt at the time of my Dad's illness, and I have found that remembering how I felt about his treatment or lack of, only makes the promise that much more important.  We need to share what we know, and I wouldn't be surprised if we end up discovering that ultimately no drugs are required and that is why the cure has not yet been found.      Pirate Gen Mon, 10 Dec 2007 00:00:00 GMT I had a nagging back ache that wouldn't get better. I was as healthy as a horse. My family doctor took an x-ray and then a cat scan. He called me himself, not his aide or nurse, but called himself. I knew this had to be bad. He says that something is not right. He thinks there is some kind of bone disease on my pelvic bone and my spine. I asked if it could be cancer. He said it was a possilbility. He sent us to an oncologist. You could have knocked me over with a hummingbird feather when he said you have multiple myeloma. He says there is no cure, but we can control it and learn to live with it like high blood pressure or diabetes. I asked what was the prognosis for living. He said 18 months to 4 years. My wife went to pieces. One of the nurses took us to a back room  and tries to console us, especially my wife. She even prayed with us. This was a little over a year ago. We felt completely out of place there that first day. Everyone was too damn happy! We were devestated! Now after one year, WE are among those too damn happy people! So I am saddened that everyone doesn't have the oncology clinic that we have here in Tyler, Texas. Go find yourselves another clinic to go to! Believe me there are professional people out there who care! They hurt when you hurt. They cry when they lose a patient. We are not promised anything in this world. We take life one day at a time. I am at 63% remission. Looking forward to 100%. I will pray for you and your brother. Remember God loves you and so do we. Poppy Poppy 1952 Mon, 10 Dec 2007 00:00:00 GMT Ron;Consider the hatchet buried!Now let's get back to the business at hand: Educating ourselves so that we can challange these Drs. by asking intelligent questions so they are forced to do some homework and therefore may find a cause and subsequently a cure for this horrific desease!All these above comments reminds me of a joke I heard along time ago. "What do they call the guy who graduates LAST in his medical class?"DOCTOR!There's good and bad in ALL professions. But the more we keep dwelling on the medical staff the less time we have to devote to our own education. And time is something we all are getting short on.Stay positive. For you own and your brother's sake.Kevin K. C. Tue, 11 Dec 2007 00:00:00 GMT Thank you Kevin and i have a question for you or anyone who can help. My brother has M/M stage three with chromosome 13 involved. this is a very difficult situation. the doctors have put him on thalidomide and dex. shouldnt they be more aggressive and go for the high dose chemotherapy? or maybe  revlamid with radiation therapy? I am not sure if you know the ramifications of chromosome 13  and what is happening.  His body is coded to self destruct ! after researching this condition his M/M is on a mission and it seams to continue through thalidomide therapy therefore reducing his chance to become strong enough for the bone marrow transplant. Now i am no doctor but why (and i am sure they have their reasons) why dont they attempt a more radical  approach. but the clock is ticking and he is pretty strong now !!  I am very worried they know something they do not wish to share.Is there somewhere a doctor or hospital who would maybe take the chance and not worry that we may sue them? or is that not an issue and they just do not know ! If they know enough to say he has months why wait till he withers away.  We will try Yale on Thursday  but is Sloan Kettering a better shot? It is all happening too fast and time is of the essence !!!!!!!!  Thank you  Ron zazu1234 Tue, 11 Dec 2007 00:00:00 GMT Good Morning Ron;I was Dx. with MM Stage III in June '07. Like you I never heard of it before. But then why should I. No family history of Cancer. Was in excellent shape. Never smoked. Ate a well balanced diet. About 2 weeks prior I was feeling very sluggish and my lower back hurt me. Went to my family Dx. I was admitted that day with renal failure. My wife tells me very close to last rites. I don't recall too much of that weekend other than don't get admitted to the hospital on a Friday! When I questioned the Dr. about what happened to stages I and II he told me that the desease has attacked me aggressively. Apparently it likes the environment. (Word to the wise: I drank two cups of coffee with breakfast, iced tea throughout the day and a beer or two at night before bed. Did this for most of my adult life. I was unknowingly producing an acidic environment. Cancer thrives in an acidic environment. Get your Ph level to 7.35.) But being healthy and only 49 y.o. I told the Dr. I wanted the most aggressive treatment available. I was going to attack this desease just as aggressively. He placed me on Rev/Vel/Dex from the get go. Informed me that there would probably be side affects and we would need to modify the amounts. There has NOT been. However, my reasearch has found that Rev and Vel tend to equalize out each others side affects. My numbers have steadily come down. But, as I have stated before, pills aren't the complete answer. Read up on diet and changes in lifestyles. (Did you know that Cancer loves sugar? And that eating fruit during or immediately after a meal causes the fruit to ferment inside our 98.6 bodies thereby producing SUGAR. Fruits should be eaten at least 30 minutes prior to a meal.)I, too, have chromosome 13 deletion. We're a smaller percentage of the MM family. What it means is that all the facts and figures you read about don't apply. My research shows that all success rates can be halved. We have a tougher, uphill battle. But NOT impossible!I've included the article below for two reasons; You will notice that TWO companies are now fighting for first place. American business was built on competition. If only one company had the patent then maybe I'd buy into the doomsayers who feel that the pharmacuetical companies are holding something back, but not when it comes down to the almighty, yankee dollar! They WILL find a way to turn this into a treatable desease, we just need to survive long enough to benefit from it! Secondly, a survival rate of 87% at two years.  Show this to your brother's Dr. and then ask if he mind if you seek a second opinion! (If you want my Drs. private e-mail me.) I've been told that at my age and health, and it sounds like your brother is similiar, my survival rate is 98% at two years. Keep in mind with all these stats, MM was an older persons desease. Average age I believe is 65 at Dx. It's now appearing in younger people. But we have that youth and strength on our side. USE IT! BOSTON, Dec 10 (Reuters) - Shares of Celgene Corp (CELG) fell on Monday while those of rival Millennium Pharmaceuticals Inc (MLNM) rose after new data suggested Millennium's cancer drug Velcade may pose more of a threat to Celgene's Revlimid than previously thought.The two biotechnology companies are battling for dominance in the market for newly diagnosed patients with multiple myeloma. Their drugs are already approved to treat patients who have failed other therapies, but both want a prominent place in the front-line setting.Until recently, Millennium's injected drug Velcade has been seen as the underdog to Celgene's more convenient, oral drug Revlimid. But data presented over the weekend at the annual meeting of the American Society of Hematology (ASH) is giving investors greater confidence that Velcade will be able to hold its own.Results of a late-stage trial conducted by the Eastern Cooperative Oncology Group showed a survival rate of 87 percent at two years in patients who took Revlimid plus a low dose of the steroid dexamethasone.But another measure of the drug's activity, known as the complete response rate, was disappointing compared to that presented by Millennium in a late-stage trial known as VISTA, analysts said."We do not think Velcade was broadly considered to have similar efficacy to Revlimid before this weekend," said Jim Reddoch, an analyst at Friedman, Billings, Ramsey & Co. Now, he said, "it has as strong an argument for front-line therapy as Revlimid does."Some analysts say the low complete response rate for Revlimid was due to incomplete data and shouldn't be compared to the VISTA results because of differences in the treatment setting."Overall, our takeaway is that both Revlimid and Velcade will move to the front-line setting," said Howard Liang, an analyst at Leerink Swann & Co. "However, we do not believe there is a clear winner on efficacy. Physicians choice of these agents will remain a personal preference balanced by oral convenience of Revlimid versus financial incentives for giving Velcade," which is cheaper. (Reporting by Toni Clarke, editing by Leslie Gevirtz) Ron, I'm going to close with my opinion, take it for what it's worth. You get as educated as possible. Then I'd tell those Drs. that you want him on the most aggressive treatment plan possible. Or take your business elsewhere. He's young and healthy, use that to your advantage. Change his diet and eating habits. Exercise, even if it's only walking around the block. And stay positive! We will beat this desease, it's just a matter of time. Every week I tell my Oncology Dr. that I'm going to put him on the cover of The Medical Journal. And I believe it!I hope your visit to Yale proved insightful and you enjoyed a pleasant trip,Kevin K. C. Thu, 13 Dec 2007 00:00:00 GMT Keven thank you so much for your post !!!!  You have given me more hope in a few sentences that our local hospital did in 7 weeks !!! Yes you do have the same (Type) of multiple myeloma as my brother and he (for some reason has no interest in learning anything) and seems to be too willing to walk into the bright light. but i must not confuse his lethargic attitude as it may be the result of the antidepressants he was given. I will soon persuade him to fight and fight hard as this will be the fight of his life!! I am relentless and I have put myself in his shoes the best i can. Learn? yes. I have read all that i can Kevin I have closed my business and have put my life "on hold" and  I think I could ace a final exam as I have done nothing else since his DX !! but you can never read and learn enough !! Yale may be the "hope" we are looking for and we will fight just like yourself and maybe my brother will be with you on the cover of the medical journal !  I will Never Quit I will never waver and i will support him even if i have to carry him.       best wishes            Ron zazu1234 Thu, 13 Dec 2007 00:00:00 GMT Good Evening Ron;I shouldn't analyze your brother but I will offer this on his behalf. If an educated man (his Dr.) told him that he only had a month or two to live perhaps he figures why bother? But the sad truth is that the Dr. is not basing his findings on current information or facts. Read, then educate this ignorant professional. As my recent post stated, 87% survival at 2 years, (and this includes all ages) or even better 98% at 2 years.(in our age bracket) those should be motivating your brother. I had a football coach a long, long time ago tell me that "everyone gets hit in the game, some people get up and some give up."Why don't you invite your brother to read some of the great posts on this site? Two hours out of his day. Beats watching Jerry Springer!How did Yale work out?Kevin K. C. Thu, 13 Dec 2007 00:00:00 GMT It is my suggestion that you tread carefully and not jump the gun. My husband also had the missing 13 chromosone. The thal/dex was really working for him, but who wants to take that forever. He had his stem cell transplant 6 months after diagnosis. It went extremly well so we thought. Unfortunately he did not achieve the remmission we had hoped for. he was closer to remmission on the thal/dex. This is a tricky disease and no two people are alike. We have come a long way with this disease in the last few years because of the people with this disease. I lost my husband 2 months ago, He lived 13 months post diagnosis. We fought hard and he was in pain but we didn't give up. We lived our life to the fullest untill the end. His life was not lost in vain if the medical researchers can learn something from his death. Just hang in there and don't give up. They are getting close. We had hope, the cure just didn't happen for us in time. Good luck.Linda downtown Thu, 13 Dec 2007 00:00:00 GMT Thank you so much for your wonderful support. After scheleping through the snow and meeting some very nice doctors at Yale , We are no better off than before with so little encouragement and I left with more questions than answers They have informed me that they will not be able to do a transplant and in the remote chance that the Valcade Thalidomide and dex.will sufficiently slow the progression of his highly invasive disease and if this can happen they (the doctors) would just keep him on these drugs and switch the potion to try to prolong life as much as possible .  I have called Sloan Kettering and will try to see what they can do.!   PS I am no longer angry as the anger melted into a unimaginable sadness. I am lost now just wandering aimlessly, We are in a wait and see mode and will pray for anything positive   If i may ask you people who are battling these unimaginable diseases,  Where do you find the strength to carry on ??  I dont think I have such an ability. I dont think I have it.  sincerely Ron zazu1234 Fri, 14 Dec 2007 00:00:00 GMT Dear Ron~~You do have the strength, you just don't recognise it!  Look at how you have approached your brothers diagnosis and how you have overcome your initial anger/fear/frustration and have immersed yourself in the task of gaining information/education to face what lies ahead.  You have demonstrated to your brother a positive role model as you have stood beside him and advocated on his behalf,  and as he comes to grip with the what he is facing he will draw on the strength you have shown.  The Victorian Cancer Council uses the motto " Cancer is a word, not a sentence" and this is so true.  Unfortunately in the first few days/weeks after diagnosis it is very hard to believe and people manage in very different ways -- from completely denying while fearing the very worst to being absolutely silent and not sharing their fears with anyone. Those who are vocal straight away are not necessarily better off than the others, just handling it differently.  I know it sounds strange, but there are many bounties in a diagnosis of cancer - truly.  For example you have a chance to face what may lie ahead and plan - say things to people that you have neglected to say before, look at the world through 'new' eyes seeing things that you never saw or appreciated before in life's hustle/bustle, build new connections with family members and possibly heal rifts which should have been done long before -- the list goes on and on.  For me, having the opportunity to actually plan for eventually not being here was really important for I have witnessed and been part of a family that has had to face/cope with unexpected deaths both of adults and children.  This way I hope that I will have taken out much of the pain and confusion that can happen with my preparation.  But, for me, the greatest bounty of this diagnosis has been how it has strengthened my family and their relationships with one another.  I thought that we were pretty close/special before, but it is so much better now.  At first they were calling and visiting daily, some travelling for up to 12 hours of driving just to spend a day together - and not because it was a holiday!  Over the past 4 years all have come to the decision to put 'family' first - not just because I have MM - but because they have come to know and really love the company of one another as adults! Its just one of the magic bounties of MM. Of course my life is full of inspirational/genuine people- those who have also come to understand the real meaning of life and the platitudes like 'seize the day', 'take time to smell the roses', 'don't waste a minute', 'don't worry about the small stuff', and the like and who practice them!  This has gone on far longer than I had intended - it was meant to tell you that you need not worry, for from all that you have told us it is obvious that you are strong - far stronger than you realise and from my experience I believe that you will grow in strength and help your brother and those you love through this difficult time!   My thoughts and prayers are with you Ron -- Best wishes to you all, Cath poppy/cath Sat, 15 Dec 2007 00:00:00 GMT hi Cath, Your beautiful response is very comforting and I thank you for the kind words !  My brother lives 5 miniutes from me and although we have seperate lives,work and families we did smell the roses and we did have a good relationship and still do !  I may be selfish but I am having so much difficulty coming to terms with knowing he will not be there for his loving wife and children. I learned one thing this disease has brought to light                DEATH IS CERTAIN, LIFE IS NOT !! zazu1234 Sat, 15 Dec 2007 00:00:00 GMT Dear Ron;I've been quite busy of late but life has slowed down some and I'm finally able to read this site.You mention that the Drs. aren't able to do a transplant. If I'm not being too nosey what is their explanation for saying this?Kevin K. C. Sat, 15 Dec 2007 00:00:00 GMT Judging from my experience (my mother and the hubby of one of her friends have MM), UAMS, Little Rock Arkansas. Both mom and her friends hubby were in advanced stage with 2-4 months to live and now, mom is 100% remission and ready for her first stem-cell transplant and he has just finished his first round of chemo with dramatic improvement. They are really the pro's from Dover when it comes to MM treatment. steveno11 Sat, 15 Dec 2007 00:00:00 GMT Hello Kevin, You could never be nosey !!! The doctors have suggested that transplant could not be done(using his own marrow) but there is a remote chance he may benefit from a sibling marrow but he explained that they would keep him on velcade thalidomide and dex. for the rest (what remains) of his life. there would no good in subjecting his body through intense chemotherapy. They know that his cancer is very very vigorous and are surprised he feels as good as he does. Pneumonia has started in one lung and this will be a time for caution.  We are praying for the treatment to spark a remission .     Ron zazu1234 Sun, 16 Dec 2007 00:00:00 GMT Hello Ron;Obviously treating the pneumonia is a priority. But I'm still not following why the Drs. are not comfortable with a transplant. Are his numbers too high; poor health; frail; etc? What prevents your brother from receiving an autologous stem cell transplant?Also, have the Drs. offered any reason why they don't want him on Vel/Rev/Dex? At first these meds where used as a second or third line of defense after other methods were tried. But lately the Drs. are using them as initial treatments. Not waiting for relapses.Take care;Kevin  K. C. Sun, 16 Dec 2007 00:00:00 GMT hello Kevin, the doctors informed me that because my brothers myeloma is much more complex than chromosome 13 and because of this complex combination the option will not be available to him. They did say myself and my sister have to be typed for a possible match.I will be doing that this week. My brother is still strong on the outside but inside there is a  multi level system failure. he has to have transfusions often and he will need dialysis this week. I thought he was stronger (physically) than he really is . The doctors have informed me that he is not well enough to withstand any more than what they are doing.  He told me "sometimes you win and sometimes you dont win" his words. so there by the grace of god go I .Never in my wildest dreams(nightmares) did i ever think I would be in state like this. I feel so helpless and  so sad that I have not  moved in weeks . AND IT IS NOT ME!!!! I as i said before I cant imagine what you and other people battling cancer must feel !!    sincerely  Ron zazu1234 Mon, 17 Dec 2007 00:00:00 GMT As I have said before, tread slowly. Sometimes the stem cell transplant is not the answer. My husband's condition worsened after the transplant. He had the missing 13 chromosone also. He did not have the kidney failure though untill after the transplant. I would imagine that may be some of the reason why they don't want to do the transplant. The high doses of chemo can promote kidney failure. The thal/dex has been somewhat bashed on this site but it is my opinion that this was the most effective treatment for my husband. This was administered before the transplant along with radiation. I can't say that there weren't side effects from this treatment but there are side effects from every medication out there. He was alive and his numbers were good. Pain meds were at the minimum. Taken as needed. After the transplant his condition became very aggressive. Unfortunately our last ditch effort did not work. He lost the battle to septic shock due to aspiration on stomach gases. They tilted his head back to get blood pressure reading. With no immune system he had nothing to fight with. Ironically the radical chemo treatment was working. He also developed respirtory failure and pneumonia. With this disease we never know the outcome but attitude is very important. God gave us 13 months and we made the very best of everyday we had. We never gave up. My husband never gave up and always talked about his days ahead.As sick as he was we still went on vacation and did everything we always did before. We are all going to die someday, we just don't know when. You can be healthy and be in an accident. It's all written in the book of life. MM is not a death sentence for anyone. It just fine tunes your zest for life. I can't say that my husband's death has been easy for me but given the condition he was in at the time of his death I know it was his time to meet the Master. As it will be for us all. Who knows when it will be for any of us. We just need to live each and everyday we have to the fullest.Linda  downtown Tue, 18 Dec 2007 00:00:00 GMT MY God very well put !!  So sorry you had to fight this but is seems to me as if you and your husband won the battle  god bless you !!!    Ron zazu1234 Tue, 18 Dec 2007 00:00:00 GMT