Multiple Myeloma

My Mom has just been diagnosed with Multiple Myeloma.  Her kidneys are working fine and she has had a bone scan. Her bones don't show any signs of leigons. I am told that is a good sign. 

I am taking her this week to install a port and she starts chemo next week.  From what I understand she will take chemo for a few weeks and then they will do a bone marrow transplant. She was told that she should be able to use her own bone marrow.

From what I understand this will put her in something like remission. 

I still don't understand everything, so it would be very much appreciated if you could give me more information. I am really worried but at least we have some hope.   

Please check the following web sites for information about myeloma and its treatments:

www.myeloma.org

http://northtexas.myeloma.org/mm101.pdf

www.leukemia-lymphoma.org

www.multiplemyeloma.org

http://themmrc.org

www.mmsupport.net

And there are a lot of others if you do a search.  The IMF site (the first on the list) has a lot of information available on line or in booklet form for free.  The North Texas support group, has compiled their "MM101" articles that also give a lot of good starter info.

Stem cell transplants (SCT) were considered the "standard of care" but more and more patients are choosing to postpone their SCT until later and depend on the newer drugs for treatment. It has become a controversy among the experts.  Be sure that you understand your options before deciding what to do.  Since your Mom's mm was caught early, she has time to make this decision - don't be rushed into something.  (As a disclosure:  I did have an auto SCT about 1 year after being diagnosed so I am not against them.  I just think people should understand their options.)

An autologous (auto) SCT uses your own harvested stem cells and is usually the first option for transplants.  The idea is that they can give you a mega-dose of chemo (usually melphalan) to kill the mm cells and then "rescue" you by replacing your stem cells to give you a jump start to recovery.  Without the SCT, there would be a much higher chance that you would die from the chemo.

Sometimes a tandem (or double) transplant is done.  In this case, the first auto SCT is done as usual and approx. 3-6 months later a 2nd auto SCT is done.  This seems to be the most advantageous to people who do not get a great response from the 1st SCT.  A 2nd auto SCT done at a later time (years later) is considered an independent treatment and it is estimated that the remission time from this type of 2nd SCT will be about 1/2 of what you got from the 1st one.

An allogeneic (allo or mini-allo) SCT uses the harvested stem cells from a donor instead of your own.  The best option is to get cells from an identical twin.  The next best is from a family member -- siblings have the best chance of being a match (25% per sibling).  And if these options are not available, you can get a stem cell donation from an unrelated donor.  There are millions of people who have done preliminary testing and volunteered to be on the donor list so your chance of finding a match is pretty good.  (They have found a 10 out of 10 HLA match for me.)

Allo SCTs have a lot more risk than auto SCTs but they also offer the best possible chance for a "cure".  Both have risks and neither have any guarantees.  My auto SCT gave me a very slight response that only lasted 3 months.  Allo SCTs are being considered more of a treatment of last resort now days.

Hope this helps a bit.  Please spend some time checking out all the info that is available out there on the  WEB.  It is a great resource.

Janet (in Idaho)

Janet provided excellent sources of information...including her own insight.  Below is a link to an interesting discussion on a different message board.  It too can offer some good insight into at least the tandem approach used at the Huntsman and Ark.

http://hcimyeloma.mywowbb.com/forum1/135.html

From Anna,

Hi Tambo, Looks like you got some good info already. I will say Dad had two Stem Cell Transplants using his own cells. He was in remission for about 5 years . He's no longer in remission.  He's had MM for almost 11 years now.  He been on and off chemo for about 6 years now.  

Your friend,

Anna 

Thanks for the information on your Dad.  We are just starting treatments.  It is so scary just hearing the "C" word.  My Mom has a port put in this Friday and she starts her 1st chemo on 9/29.  We are praying that she will respond well to the chemo.

How old is your Dad?  My Mom is 61.  From what I am told your age has a lot to do with the bone marrow transplants.

Please keep me informed on your Dads progress. 

From Anna,

Hi Tambo, He's 66.  He was 3 days away from his 55th birthday when the confirmed what he had.  He will start chemo again tonight.  Can't count how many times he's been on.  A couple of weeks ago he did the first round his done in while but he had had surgery then they wanted to put him back on it earlier this year but he got sick they waited. 

Your friend,

Anna