Tandem Transplant

I am new to the group - diagnosed in August with stage III MM and have just begun my 4th round of chemo - Velcade, dex, revlimed.  I will have a SCT in December and then within 90 day have an Allo transplant from my brother.  Does anyone have info on the Allo transplant?  What is the recovery time.  I am very healthy otherwise and 57 years old.

Thanks, Donna

Hi Donna,

Welcome to the group.  I had tandem SCT transplants. 

The following is a quote from UAMS (University of Arkansas for Medical Sciences) Myeloma Institute for Research & Therapy.  They specialize in MM and I received my transplants there.

"The cure rate with allogeneic transplants is not higher than with autologous transplants if we consider all myeloma patients. However, there is a subgroup of patients with poor prognosis based on cytogenetic abnormalities for whom we might recommend allogeneic transplantation. For all other patients we typically prefer autologous transplants. We strongly believe that myeloma patients need 2 autologous transplants followed by more chemotherapy in order to have a chance for long term survival."

I was 56 when diagnosed, also in stage III MM and now in complete remission.  I'm wondering why your doctors want to do one SCT and one Allo.  Do they specialize in MM?

It's too hard to say what your recovery time would be.  Some people recover quickly and are back at work within a couple of months and other might have more severe side effects from the chemo and take longer. 

Hope this information helps you.

Take care,

Lois

Thanks Lois - the doctor I have is from Froedert & the Medical College of WI and his former boss worked at Arkansas for a while.  From his comments at a seminar I attended he seems not to agree with some of the things they do in Arkansas.  My take on what he said was they treat everyone alike.  Don't know if this is right or wrong.  I was informed that the cure rate may be higher with the allogeneic transplant due to the fact that the other persons immune system may take over mine, therefore attacking the MM cells.  

Thank you for your insight into this.  There is so much to research.

Donna

From Anna,

Hi Donna, Welcome to the group. Never heard of doing these transplants back to back.  Dad only did the Stem Cell Transplant using his own cells. That was almost 11 years ago now. He was in remission for about 5 years.  He's been off and on chemo since then. 

How come they're not going to wait and see if the first stem cell transplant takes first?

Your friend,

Anna

Good Morning Donna;

 I was informed that the cure rate may be higher with the allogeneic transplant due to the fact that the other persons' immune system may take over mine, therefore attacking the MM cells.  

Yes, but keep in mind, the donor's cells will also attack your good cells as they will recognize them as foreign bodies. The disease is called Graft Versus Host.

Much info out there on G VS H and ALLO SCT. Visit the archives here if you can navigate this new format.

Take care;

Kevin

Not to disagree with your doc's former boss, but if anyone has began to personalize MM treatment, it's Arkansas.  Thier work with gene array is well beyond anyone else in the country...except for maybe the Huntsman only because those Ark scientists are now at the Huntsman.  Ark currently has personalized tandem transplants based on MM risk factors, gene array results, and type of MM.

I couldn't agree more with what Lois has shared.  The risks associated with an allo just aren't worth the potential advantages over Auto....from what I've read anyway.  However, a modified Allo might be something I'd consider.  I would want to know exactly what changes they're making to the Allo to increase my safety. 

Most people who disagree with what has been accomplished in Ark do so based on the toxic nature of tandem autos.  Your guy is the first I've heard who is considering going even more toxic. 

I wish you the best of luck.  You sound like a person who's on top of things, in control, and is going to do their research.  I'm sure you'll select what's best for you.

Doug

Hey Doug, San Antonio (Methodist) bases tandum on results of the chemo.  My husband had "complete response" and is headed to transplant starting on the 13th with the Neopogen injections to start that day.  Had he had anything but a complete response, they would have considered a tandum, but are looking at doing one, but harvesting enough for two.  One thing they do there is they look at each patient as an individual, base treatment on all they know about that person in particular.  Because my husband had a pretty rough go with the Vel/Rev/Dex, they are going to start out as inpatient and discharge once they feel he is eating well and out of the woods.  For some they try to do it outpatient, and I am glad they are good about taloring to individual, not just doing it all the same.  When we asked about how many they did a year, the transplant coordinator said "This is our blue plate special...we do over 100 per year for MM alone".  Anyway, we will keep you posted as we journey down this road.  AMW

AMW - that sounds like things are moving in the right direction.  I love San Antonio.  I did my tandem transplants outpatient.  If I had been in SA, I'd be down on the river walk eating all I could "taste." ;-) I lived there 7 years while stationed at Lackland AFB.

Their decision is what makes them different then say the Huntsman.  I too went into complete response prior to transplant.  But, my doctor feels myeloma works in a different manner.  He strongly suggested I stay the course and do the tandem...which I did. I still have enough stem cells for three more transplants if needed...sure hope not

Lots of different ways to skin this MM.  I hope we all see success.

btw, your BMT clinic is one of the best out there.  The VA was going to send me there or Seattle.  They will take good care of you guys I'm sure. 

Doug

Good Morning AMW;

But are looking at doing one, but harvesting enough for two.

Tell them you want enough cells harvested for at least 3 future transplants. This first harvest is the best you are going to get. Use that to your advantage.

Take care;

Kevin

Hey Doug,  We were really impressed with San Antonio as well.  We live about 1 1/2 hours north of there in a place called Wimberley....so it was not only highly recommended, but also closer than MD Anderson.  We feel that the doctors are very progressive and also tailor things to individuals.  Our onc in Austin sent us to them as soon as the diagnosis was made, just to make sure that things were in place when treatment was finished...and to evaluate for transplant...and get things started.

Being inpatient I believe will be better for my husband as he is down to no extra weight..(135) and not an ounce to spare. The doctor said, "you look really beat up, so I want to start things out in-house and we can move it to outpatient once we know you are feeling up to eating".  I was relieved, as I am worried about the nausea that the high dose chemo will bring on.

We are hoping to loads of stem cells, so we can store for a few more transplants.  I am going to use Kevin's plan of getting all we can just in case.  If this is the best shot at getting loads, lets bring in as many as are there to harvest.

Will keep you posted as we head down this next path.  Big thing now is the neuropathy in the feet.  Have started acupuncture and other things to help with that...and it is frustrating for sure.  Did you have this?  If so, how long did it stay bad?  Suggestions as to what else to do for it?  Thanks for all your support.  AMW