Need your help!

[zerofeel]

All,

My name is Andy Smith and I am writing this email on behalf of my uncle. My uncle was diagnosed with Stage III Multiple Myeloma back in March and he has not only a deletion of Chromosome 13 but also the trans-location of Chromosomes 4/14. My uncle is in his 50's and is getting ready for his 5th cycle Revlamid,Velcade, Dexamethasone, and Doxil. His main Oncologist is Doctor Andrzej Jozef Jakubowiak from the University of Michigan Medical Center. My uncles doctor wants to have him do a Stem Cell Transplant using his own Stem Cells. My uncle was going to get his SCT done at the University of Michigan Medical Center but they would not accept his insurance for that treatment there.

My uncle was refered to another doctor named Voravit Ratanatharathorn from the Karmanos Cancer Institute. My uncle is confused because this new doctor wants to use the bone marrow from my uncles siblings vs. his own which has a longer recovery rate and may be more risky from what I understand.

Why would a doctor choose to use a siblings bone marrow vs. his own?

The next issue at hand is the Chromosome 4/14 Trans-Location. I understand that the treatment may be less effective because of the Chromosome issues, but why is it that some doctors don't recommend the SCT when 4/14 is presnet when some do? Is this purly based on age and how far along the patient is or is there something else weighing in on the matter?

Anyone think its better for my uncle do do maint Chemo vs. a Stem Cell Transplant?

Has anyone ever been to Karmanos Cancer Institute or had Voravit Ratanatharathorn as a doctor and how was the experience?

With this information answered my uncle would feel more comfortable making his decisions.

Thanks,

Andy

[zerofeel]

Below are the responses that I received from the listserv which I hope will help others in the same situation:

Dear Andrew,

I can only speak from the experience of my husband. We did both autologous (own stem cells) transplant and mini-allogeneic (siblings' stem cells) transplant. This is our experience:

With the auto, the transplant was harder for my husband but the recovery was easier with regards to side effects. There was no rejection since you are using your own stem cells. But the relapse is almost a sure thing. With my husband, he relapsed after 18 months.
With the mini-allo, the transplant was easier but the recovery is more difficult due to the graft versus host disease (GVHD). But from what I have read with other myeloma survivors, this is the only possible "cure" for myeloma. My husband is now experiencing liver GVHD, Stomach GVHD and Mouth GVHD. He has turned yellow already due to liver damage, each time he swallows he has abdominal pain, and he has very bad taste buds and if he eats fast, he will surely throw up. But I would say with the medication doc put him on, he is getting better each day, but is still very weak. GVHD is good for the body- since this will fight the myeloma cells. But too much GVHD can kill you- so doc has to balance the GVHD.

If you have the time, you can check out my husband's detailed story at- http://mm.acor.org/Active/Sarmiento_Jun.htm.

Everything is a choice. With us, we chose to go try our luck with the allo transplant- hoping for a "cure". Since the auto did not give us a long remission. Also, we choose to have the SCT rather than do maintenance chemo since the side effects of the chemo is no "walk in the park".
Others choose to do maintenance chemo, which is also a good choice. Since the mortality rate is much lower than the transplant. But the reason we chose the transplant, is we are hoping that we are one of the lucky ones, then we can have the"cure" for myeloma.

Good luck with your choices. Study all the possible outcomes for your choice. Listen to your doctor, but do research also on your own.

Good luck.

Jean

---

[zerofeel]

Andy

Your question is well established, but is very much complicated and
controversial to answer. There indeed would be many different
opinions/perceptions not only amongst the list members but MM specialists
also.

BTW I'm a caregiver to my wife who had auto SCT (her own) in March 1999
and mini-allo SCT (from her sibling bro) in September 2002. So this is my
humble opinion but with 11 years+ experience of care.


- Show quoted text -
My name is Andy Smith and I am writing this email on behalf of my uncle.
My
uncle was diagnosed with Stage III Multiple Myeloma back in March and he
has
not only a deletion of Chromosome 13 but also the trans-location of
Chromosomes 4/14. My uncle is in his 50's and is getting ready for his
5th
cycle Revlamid,Velcade, Dexamethasone, and Doxil. His main Oncologist is
Doctor Andrzej Jozef Jakubowiak from the University of Michigan Medical
Center. My uncles doctor wants to have him do a Stem Cell Transplant
using
his own Stem Cells. My uncle was going to get his SCT done at the
University of Michigan Medical Center but they would not accept his
insurance for that treatment there.

My uncle was refered to another doctor named Voravit Ratanatharathorn from
the Karmanos Cancer Institute. My uncle is confused because this new
doctor
wants to use the bone marrow from my uncles siblings vs. his own which has
a
longer recovery rate and may be more risky from what I understand.

*Why would a doctor choose to use a siblings bone marrow vs. his own? *

The next issue at hand is the Chromosome 4/14 Trans-Location. I
understand
that the treatment may be less effective because of the Chromosome issues,
but *why is it that some doctors don't recommend the SCT when 4/14 is
presnet when some do?* * Is this purly based on age and how far along the
patient is or is there something else weighing in on the matter?*

*Anyone think its better for my uncle do do maint Chemo vs. a Stem Cell

Transplant?*


As you say, deletion 13 (del 13q) and transloation 4;14( t(4;14)) are
typically
poor prognostic factors. Generally believed that a patient with del13q
and t(4;14) may probably not expect benefit from auto SCT (his own). In
other words, even if the patient can achieve a good remission from
transplant,
the remission won't last long or relapse soon. So SOME specialists will
not recommend or perform auto SCT to such a patient, but will
recommend allo SCT (from his sibling). Meanwhile there are SOME
specialists who will do auto SCT knowing that the procedure would not be
much beneficial to the patient, and prefer to go to chemo maintenance later
on. By doing so, at lease they can hope to prolong survival.

Neither school is absolutely correct nor wrong. This is simply a matter of
perception.

They also may recommend the future direction depending on the aggressiveness
of the disease. From your post, I can not see if it is aggressive or not,
but
my impression is that they might have judged it is aggressive since they
started
to treat him with a combo of Rev/Vel/Dex/Doxil, which is supposedly most
potent (and intensive) regimen at this moment. If this is the case, they
typically
want to go to aggressive treatment including auto &/or allo transplant.

I hope this may be a bit of help to you and your uncle.

Best wishes,

Susumu, Japan
caregiver to lambda light chain wife for 11 years and 2 months

[zerofeel]

*Why would a doctor choose to use a siblings bone marrow vs. his own? *


Probably because having the donor cells does usually give you a longer remission.
I had an allo transplant 5 years ago this coming October. I was 65 at the time, and it was MY decision to go that route because I wanted more time with my husband and family.
Judy in PA

[zerofeel]

Andy, You obviously have done a fair share of research for your uncle much like what my daughter did for me. I understand that MM is now possible to categorize by high risk and low risk based on gene expression profiling. With 13 and 4/14, it may be high risk, but a gene analysis would be needed. The people who are at the forefront of this are UAMS in Little Rock. Just google Myeloma Institute. I believe they do have a treatment that is successful with the 4/14 deletion. Insurance, its a bummmer. You can see if they will cover UAMS, they do stem cell transplant on an outpatient basis which is one third the cost of an clean room program at many faciliies. I know a woemen how had them pay for temporary housing as well as the SCT because of the savings to them of outpatient care. Sometimes their profit motive can be used to your advantage. Good Luck/Gary(Low Risk and in CR since 3/06)

[zerofeel]

Andy,
Your uncle needs to be very careful with making this allo decision(cells from sibling). In some cases, it works out. In many more, it does not. Also seem to be able to cure MM in a small amount of cases. In an equal or more likely a greater amount of cases, it hastens one's death. It can also cause chronic GVHD which can be so bad in some cases that the patient wishes they never did it and there are many cases where it does not cure the MM anyway so the risk was undertaken for nothing.

I would recommend finding the myeloma blogs and caring bridge sites of those who have done it and read about their experiences. The doctor may feel that with the chromosome abnormalities, the most aggressive treatment is his only hope but there are many who do OK with chemo for some time despite these abnormalities. My husband had none of the chromosome problems. His auto SCT did absolutely nothing. A woman who went through it at the same time had Del. 13 and translocations also and she got about a year of stable disease from it before her numbers began to move. There's just no crystal balls with this darn MM.

Best to you and your uncle,

Denise from Jersey

[zerofeel]

Hi Andy,

I can tell you a few things that may be of help. Dr Voravit R. was my transplant doc at Karmanos. He is chairman of the transplant dept. He is extremely knowledgeable and well-regarded in the myeloma community.

Dr. J at U of M is only one of two multiple myeloma specialists in the state. The other being Jeffery Zonder MD at Karmanos.

I had an autologous (my own stem cells) transplant at Karmanos in 12/07. I had a 1 1/2 yr period of no drugs. My m-protein started trending upwards after 12 months and I am waiting for drug treatment to start again.

Dr. Vorivat R must have a good reason for wanting to do an "allo" (allogeneic transplant) on your uncle. However, there are a lot of variables and other info that is not in your post and that must be considered. An "auto" is fairly safe but only gives one an average of 2 to 3 yrs relief. But this is to keep us around waiting for the magic bullet or better drugs coming down the pike.

An "allo" has a mortality rate that many people won't risk. However, since an allo is from a donor you get a new immune system and may reach sCR (or stringent complete remission) which can actually cure the disease. (they don't like to say cure, but sCR is pretty much cure.)

I saw Dr. V a few months ago and he wanted to do an allo on me. My local onc recommended not saying there are two many drug regimens that are out there that are successful. So I opted not to do it, but can always save for later.

One's sibling is the best donor, absent an identical twin. If the sibling donor is not a perfect match then they go to the national donor registry which is not always successful in finding a match.

It sounds like both drs agree he needs a transplant. I would go with an "auto" unless dr V. has very compelling reasons to put forth that he needs an "allo"
now.

Hope this helps. Let me know if any other questions.

Best,
Tom Purcell

[zerofeel]

HI Andy,
It's a huge leap to move from an auto SCT to an allo (donated bone marrow).
The auto is not particularly dangerous; the allo is VERY dangerous (40%
mortality I believe). Most doctors only recommend an allo if there is no
alternative. It seems odd to have an allo suggested up front. IF an allo
works it can be much more successful than an auto, in terms of length of
remission, but the risks are large - not only of mortality but also of graft
vs. host disease, which can be hugely disabling. Some people posting on the
ACOR list have had successful allos. The thing to remember is that the ones
who were not successful are not posting, because they are not here anymore.
A friend of mine was in that group. She did an allo, and died from the GVHD
(graft vs. host disease). She didn't have many options and probably would
have died with or without the allo, but it was clearly the allo that was her
cause of death.
You should look thoroughly into all your choices, and should talk to
different doctors with different philosophies before making any decisions.
Best of luck to you and your uncle
Lisa

[zerofeel]

Hi Andy, The REV.combo your uncle presently has is often used with an allogenic SCT in mind. However I am of the opinion that when he has a very good result with it he could postpone the ALLO-SCT, The Allo-SCT is very efficient but like you learned could have some drawbacks, the main one being the danger of GVHD (graft versus host disease) in which the transplanted immune system (e.g. bone marrow cells) attacks the tissues of the host's body. WIM

[lawcynthia]

Hi Andy,

I have learned that I am constantly needing to make decisions about my treatment. Unfortunately, the decisions are never easy to make and it seems that everyone has their own opinion. Even when you consult with 2 MM specialists you may get different opinions. I know that "Knowledge is Power" thanks to the IMF. So I listen to everyone's opinion, then I make the choice that I feel is best or me.

I have attended 2 IMF conferences, 1 ECOG seminar, and a LLS seminar. When the topic of allo-transplants or mini-allo transplants came up, almost all the experts were in agreement that allo-transplants should be saved as a last ditch effort. The spoke of GVHD, survival rate, and other complications.

I would ask why the onc. wants your uncle to have an allo vs an auto transplant. To me it seems like a risky procedure. I had an auto SCT in February 2009. Unfortunately, the SCT did not put my disease into remission which was something I never thought about before having the procedure done. I assumed that all SCT work. I have learned that they don't. Would I do it again? Probably, but only if there is no other options available.

I wish you and your uncle the best of luck.