CancerCompass message board discussion started by zazu1234 on 2/26/2008 http://www.cancercompass.com/message-board/message/all,21343,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love. zazu1234 Tue, 26 Feb 2008 00:00:00 GMT  Hi: Select the Multiple myeloma page, scroll back to Feb 1 and there is a whole discussion on  Stem cells pro and cons so you might want to read that. Not everyone agreed with me but that is what conversations are for and just for the record I DID not say I am against stem cell I just cited my personal experience with people I knew, and everyone has the right to make their own decisions.. Take care MMS On 2/26/2008 zazu1234 wrote:Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.  mmsurvivor Tue, 26 Feb 2008 00:00:00 GMT Good Evening Zazu;"His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP."Great news about your brother! If I recall one of your other posts the Drs. were talking about a tandem transplant. Is this still the Tx. plan?I believe MMS has guided you in the right direction. There are many topics in the archives relating to transplants. Do your research and become as informed as possible so you may both choose the best path for his recovery!Take care;Kevin K. C. Tue, 26 Feb 2008 00:00:00 GMT Well Kevin "tandem" Tandem could be different things in our case "tandem" means transplant of stem cells from himself and a sibling together His cancer is so vigorous that Yale believes it will return quickly therefore sibling stem cells could identify Myeloma and destroy it. The problem is that I am not a HLA match and we have only a sister who is being typed at this time. We are hopeful. The chance of HLA match is only 25%. The most amazing thing is at Yale. They have a super computer this computer has "linked" with my brother it was connected by a IV.his breathing was connected and his urine was collected It even used a special camera to watch his heart flow and many other functions.......after about 1/2 hour it learned all about him and it "knows" what it needed to CURE him. (we may not be able to supply it with what it asks for) but the computer collects& COUNTS every stem cell and what products are needed for transplant. Then when he is ready for transplant it will supply whatever he needs at an EXACT amount and if there is any stress it knows either to slow down or speed up or introduce medicine for whatever organ that may stray from "baseline" They have informed us that this type of computer exists only at Yale.. The Doctors are among the best in the world so we have to put our trust in a computer and these fine doctors.This procedure is to happen later in march. he will undergo the typical chemo to stimulate production of stem cells and then once completed he will receive by computer the high dose chemo and will "know" when  the maximum amount of myeloma cells are killed. Without a sibling match the cancer will return sooner but his superlative response to Velcade/thal/dex.could be used again when he comes out of remission. also revlimid and other drugs are still available to him. Cancer sucks.!! zazu1234 Wed, 27 Feb 2008 00:00:00 GMT  On 2/26/2008 zazu1234 wrote:Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.so sorry for your brother I will keep him in my prayers, My husband was just diagnosed and we are waiting for his doctor to figure out the best course of action. His was found on a routine health exam so he is asymptomatic so far. The waiting seems endless for an appointment at the University of Michigan. I would like to hear all thoughts or treatments people have had to get a better grip on this. We are still in shock. Thanks! I am ALICES Wed, 27 Feb 2008 00:00:00 GMT  Alice I wrote you a private reply. MMSOn 2/27/2008 ALICES wrote: On 2/26/2008 zazu1234 wrote:Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.so sorry for your brother I will keep him in my prayers, My husband was just diagnosed and we are waiting for his doctor to figure out the best course of action. His was found on a routine health exam so he is asymptomatic so far. The waiting seems endless for an appointment at the University of Michigan. I would like to hear all thoughts or treatments people have had to get a better grip on this. We are still in shock. Thanks! I am  mmsurvivor Wed, 27 Feb 2008 00:00:00 GMT  On 2/27/2008 zazu1234 wrote:Well Kevin "tandem" Tandem could be different things in our case "tandem" means transplant of stem cells from himself and a sibling together His cancer is so vigorous that Yale believes it will return quickly therefore sibling stem cells could identify Myeloma and destroy it. The problem is that I am not a HLA match and we have only a sister who is being typed at this time. We are hopeful. The chance of HLA match is only 25%. The most amazing thing is at Yale. They have a super computer this computer has "linked" with my brother it was connected by a IV.his breathing was connected and his urine was collected It even used a special camera to watch his heart flow and many other functions.......after about 1/2 hour it learned all about him and it "knows" what it needed to CURE him. (we may not be able to supply it with what it asks for) but the computer collects& COUNTS every stem cell and what products are needed for transplant. Then when he is ready for transplant it will supply whatever he needs at an EXACT amount and if there is any stress it knows either to slow down or speed up or introduce medicine for whatever organ that may stray from "baseline" They have informed us that this type of computer exists only at Yale.. The Doctors are among the best in the world so we have to put our trust in a computer and these fine doctors.This procedure is to happen later in march. he will undergo the typical chemo to stimulate production of stem cells and then once completed he will receive by computer the high dose chemo and will "know" when  the maximum amount of myeloma cells are killed. Without a sibling match the cancer will return sooner but his superlative response to Velcade/thal/dex.could be used again when he comes out of remission. also revlimid and other drugs are still available to him. Cancer sucks.!!Good Evening Zazu;Tandem only means what you've described above: Auto and Allo together! From my research, pretty impressive concept, you get the benefit of both transplants and halve the side effects. I would like to correct you on an oversight: You may be an HLA match of a "D", however your sister may be even lower! You might end up going to a "bank" to find a closer match. It's not just siblings that can donate. But on the bright side, what was once told to me is incorrect, that they have to enter the bone to harvest stem cells. In adults, stems can be taken from the blood. A LOT LESS PAINFUL!I'm no Dr. (thank goodness) but from what I recall of your previous posts I agree with the Yale Drs. of the quick return of the MM. And they have drugs available to fight off the Graft VS. Host. Go in there positive, it sounds like they have his tx. pretty well figured out!Regarding the computer, I'm somewhat old school, but I would love to see how this thing operates. Sounds to me like a diagnostic machine a mechanic would plug your car into. The marvels of modern science. Sure beats reading tea leaves.Stay positive and informed;Kevin  K. C. Wed, 27 Feb 2008 00:00:00 GMT I am so excited for you about the monitoring process. I feel this just might be the direction needed to save or prolong his life. Unfortunately I lost my husband to this ugly disease in October. With a monitoring system such as this I have to wonder if he would still be with me now. I think they are finally going in the right direction now. My husband did have a transplant of his own cells but it was unsuccessful. It was done in March of last year. His 100 day biopsy did show a decrease from 31 per cent to 17 per cent but that was  very short lived. In September he was up to 90 per cent plus and when he was admitted to the hospital for a radical chemo treatment he was at 100 per cent. The sad part is the chemo was working but everything else was destroyed in the process. I have to wonder if this monitoring system were available things may have been different. I wish you the best of luck with this new process. It is my hope that this works. I hope in my lifetime a cure will happen. Too late for my husband but  not for others. From each case of mm I am sure more and more knowledge is acquired for the cure. Does he have the missing 13Q chromosone? My prayers are with you.Linda downtown Thu, 28 Feb 2008 00:00:00 GMT hello Linda I am So very sorry for your loss. In our case my brother had chromosome 13 and 11 deletions. We have discovered that velcade has the ability to provide almost the same response as a patient with no chromosome abnormalities. Like Keven mentioned in the previous post the match may be in the bone marrow registry. This is best for my brother because a sibling or close match could identify the myeloma and structure an attack against the cancer. HLA match is best to help with the posability of graft vs host and this is life threatening in itself. Any other match may outweigh GVHD because ALLO will be short lived.The super computer at Yale must be like some kind of monitoring , administering.,controling device and it is a good tool to do the most damage to the cancer and supply the stem cells at a very controled level. No matter what multiple myeloma is a very serious cancer and at this time unstoppable......Some day Nano technology will be the cure for cancer all together as man could build micro machines that could be injected into the body and these man made cells could be programmed to Kill certain cells !! or they could be programmed to instruct the body to identify cancer and launch a attack against it. This may sound like a dream but it is being researched at this time.Cancer is not a smart disease the only way it can flurish is because it is unidentified by the bodys ammune system and the body "Thinks" it belongs there, form that point on the body makes (in this case) monoclonal cells exponentally .once the body is "duped" the most powerful defense system  we have is used against us. Cancer Sucks zazu1234 Thu, 28 Feb 2008 00:00:00 GMT Good Evening Zazu;To begin with, I am impressed! And if you knew me, you would certainly take that as a compliment! Because I don't sat that too often. But from the above posting you have obviously educated yourself! Good job, man."We have discovered that velcade has the ability to provide almost the same response as a patient with no chromosome abnormalities."Now you have to explain this to me. Let me educate myself. Give me the background on this statement. I need info so I can speak to my Dr. about this. Stay positive and informed;Kevin  K. C. Thu, 28 Feb 2008 00:00:00 GMT C'mon kevin get the books out !! this desease is not that mysterious It can hovever be a little confusing. Remember I do not have M/M but I learn fast ! As I explained to my brother ..... multiple myeloma can be understood in an analogy like this:   I am a amateur meterologist and as i explained... A Hurricane can be like multiple myeloma a hurricane has to have winds of 74 MPH or more and it is a hurricane but a hurricane can have wind gusts over 250 Mph and it is still a hurricane .My point is Multiple Myeloma  comes in MANY forms and yes it is still Multiple Myeloma but it ends right there. When there are chromosome deletions or complications of certain chromosomes IE.13 11 14 17 this is also complicated my the type IgG IGl IgC among many others when you mix these in combinations well you do the math.....Now when there are chromosome issues AND type IGg this form of hurricane has winds of 250+++ MPH This storm will be very difficult to weather.!! Now to your question.. Velcade has been shown to have very similar outcomes and will provide similar prognosis (in the short term)  for high and low risk paitents Time to progression and progression to partial remission are almost the same,however complete remission  is very unlikely to be achieved in "high risk"multiple Myelloma  even with velcade but with refractory M/M velcade has been shown to be best front line defense. We have been speaking of a patient at Yale who responded to nothing and i mean nothing he went to stage 3-B with 13 and 11 deletions and IGg was given Velcade with minimal neuropathy and could not qualify (because of myeloma load) for stem cell transplant IS IN HIS 39 th MONTH and PLAYING BASKETBALL 3 TIMES A WEEK.!! These results are typical in this group (high risk) there are many studies to prove this.The only way remission can be achieved over the long term is "Allo" transplant. You must remember none of us has a 'expiration date' and doctors speak of the average and there are always those above and below the prognosis.In order to do a "ALLO" the paitent must have a Myeloma Load under 5%and IGg under 800 if this can not be achieved the remission period will be substantally lower.  Hope this helps. Ron zazu1234 Fri, 29 Feb 2008 00:00:00 GMT Good Evening Ron;"Now to your question... We have been speaking of a patient at Yale who... could not qualify (because of myeloma load) for stem cell transplant The only way remission can be achieved over the long term is "Allo" transplant. In order to do a "ALLO" the patient must have a Myeloma Load (ML) under 5%and IGg under 800 if this can not be achieved the remission period will be substantally lower."  Some points you make that need to be clarified for me: The Drs. won't consider a SCT for this patient because his numbers are too high? I don't see my numbers ever getting to the ML they want yet I plan to have an ALLO or Tandem SCT possibly next year or whenever my remission period ends; Also, long term remission, can it be achieved with a Tandem SCT or only an ALLO?Again, I want to remind you how fortunate your brother is for having someone as informed and proactive as yourself in guiding his TX. plan.Take care;Kevin K. C. Sat, 01 Mar 2008 00:00:00 GMT  On 3/1/2008 K. C. wrote:Good Evening Ron;"Now to your question... We have been speaking of a patient at Yale who... could not qualify (because of myeloma load) for stem cell transplant The only way remission can be achieved over the long term is "Allo" transplant. In order to do a "ALLO" the patient must have a Myeloma Load (ML) under 5%and IGg under 800 if this can not be achieved the remission period will be substantally lower."  Some points you make that need to be clarified for me: The Drs. won't consider a SCT for this patient because his numbers are too high? I don't see my numbers ever getting to the ML they want yet I plan to have an ALLO or Tandem SCT possibly next year or whenever my remission period ends; Also, long term remission, can it be achieved with a Tandem SCT or only an ALLO?Again, I want to remind you how fortunate your brother is for having someone as informed and proactive as yourself in guiding his TX. plan.Take care;Kevin Kevin for the question on SCT : the reason why Myeloma load must be reduced is multi faceted.1) the myeloma (monoclonal cells) encompasses the marrow and crowds out the marrow until its ability to produce is significantly reduced.The reason for chemo is to reduce myeloma and to restore blood production once this happens (remission) Stem cells can be collected.                                     2) Ideally There should be no protein "M" spike  thus Complete remission and less chance of "tainted"collection 3) Chemotherapy kills myeloma : Yes but not completely when a patient is being preped for collection, During the process  of  stem cell collection myeloma is collected in very very small numbers. When the desired amount of stem cells has been achieved the soup mix is frozen and stored.The stem cells are theoretically "purged" of Myeloma4) the problem is myeloma is a monoclonal cell and before anyone has multiple myeloma  a breakdown  of cell production occurs and the entire process developes from just one cell. A single monoclonal cell still does not mean cancer but a single  monoclonal cell in the right enviroment does mean cancer. When SCT is performed only one cell will set the ball in motion.So why do we do this?  The reason is patients with multiple myeloma have the right environment for monoclonal cell over production and the "high dose" Kills off these cells and it could take some time to "restart" production thus extending life. In theory........ The best longterm procedure would be a sibling HLA match... There would be NO introduction of undesired cells and most importantly the alien but accepted sibling stem cells could instruct the immune system to identify myeloma as a invader and attack. This process (provided there is not GVHD) would provide the greatest results.  Tandem SCT is also a very good choice because Your stem cells will  be accepted and go straight to their "home"and set up shop in a reasonably short time.The foreign stem cells will take more time to graft but these stem cells could keep myeloma in check. but the risk of the dreaded GVHD is always present.      zazu1234 Sun, 02 Mar 2008 00:00:00 GMT Kevin if your numbers can not be reduced in chemotherapy this still does not mean they wont be reduced to the target figures . When you come out of remission you will be given a different combination of chemotheroputic drugs. Velcade, Lenolidomide, Revlimid. Thalidomide among others, once a response occurs you will be given the "high dose"chemotherapy and this will usually reduce the numbers to the desired level needed for successful stem cell transplant.     All the best,  RON zazu1234 Sun, 02 Mar 2008 00:00:00 GMT Keven I missed your question of "collection" The invasive technique of entering the bone marrow for collection has been found not to be as percise  as the technique of removing stem cells from the perifpheral blood. This is done by a computer that removes blood from a patient which has gone through the pre collection boosting period this is done by administering cytoxin this drug forces the blood counts to plummet thus stimulating the blood manufacturing to over produce this along with a week of drugs to produce even more stem cells (stem cells are simply uner-developed parts of blood, They become whatever is demanded upon in the blood either white.red or platelets) The computer receives blood from one vein sorts out the stem cells counts and stores them then returns the blood minus the stem cells  through another vein. this process takes aprox.5 days but can vary depending on the amount of stem cells  produced. This process is not nearly as painfull,more accurate and it also eliminates the process of removing stem cells from the marrow.  RON.........cancer sucks zazu1234 Sun, 02 Mar 2008 00:00:00 GMT Yes, absolutely have him do the Transplant.  My mom had Multiple Myleoma.  She was diagnosed 7 years ago.  Almost 7 years ago she had the transplant.  The transplant gave her another 2 1/2 years of good life.  She died in November 2007, but she fought a very tough battle.  Good Luck.  On 2/26/2008 mmsurvivor wrote: Hi: Select the Multiple myeloma page, scroll back to Feb 1 and there is a whole discussion on  Stem cells pro and cons so you might want to read that. Not everyone agreed with me but that is what conversations are for and just for the record I DID not say I am against stem cell I just cited my personal experience with people I knew, and everyone has the right to make their own decisions.. Take care MMS On 2/26/2008 zazu1234 wrote:Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.   Elegant71 Sat, 08 Mar 2008 00:00:00 GMT