stem cell transplant is it worth it ??

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

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

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 Myeloma

4) 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.

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.