RE: Bone Marrow Transplantation

[Guest guest]

Hi ,

I have heard about this form of Treatment and also about the Stem Cell

Treatment. Risky probably. I believe a Cure is in the mist of these 2

Treatment's. As they come closer to getting it down right. Having Faith and

Hope in

those who are working for a Cure will help many of the kid's. It has been in

the works for many years. In this treatment option I do believe there will be

found to have many cures for many Diseases as this is a Immune Disease.

Robbin

[Guest guest]

Hi ,

I'm not sure that's exactly how a bone marrow transplant works. I believe

the patient actually receives donor bone marrow, not their own cleansed bone

marrow.

There is a chemotherapy treatment using Rituxan and Cytoxan through IV

infusion which is intended to deplete B cells and then " re-boot " the immune

system. My daughter has just completed her two loading doses of this drug

and is supposed to have this procedure again in 6 months. So far, she feels

pretty sick, I will keep you posted as to her progress.

I believe there are only about 20 patients worldwide who have been treated

with a bone marrow transplant for RA. I also believe this procedure is

reserved for those with life threatening disease as it is extremely

dangerous. I could be wrong, but this is the impression I get.

Lori (, 13 yo with severe RA)

_____

From: [mailto: ] On Behalf

Of CHRISTINA LINCOLN

Sent: Sunday, December 03, 2006 10:16 PM

Subject: Bone Marrow Transplantation

Hello! I wanted to throw something out there that a doctor (Rheumy)

mentioned at a consultation visit. He's not my son's rheumy but someone we

went to for a second opinion. He's an amazing physician and works with the

Arthritis Foundation. He talked with us for about an hour... explaining all

of our treatment options.. and as a last option he mentioned a bone marrow

transplantation. He explained that this procedure would clean his cells and

put them back into his body... in a sense rebooting his computer. Has anyone

heard of this or gone through this process? It seems awfully risky to me.

Sam, age 5, systemic JRA

[Guest guest]

Actually you can recieve your own cells back too but they get a special

treatment destroying all the bad cells.. kids with neuroblastoma, ewings

sarcoma, and rhabdomyo sarcoma receive these types of allogenus bone marrow

transplants. Its risky but not as risk as when you receive a donors cells

Lori Maynard <lorimaynard@...> wrote: Hi ,

I'm not sure that's exactly how a bone marrow transplant works. I believe

the patient actually receives donor bone marrow, not their own cleansed bone

marrow.

There is a chemotherapy treatment using Rituxan and Cytoxan through IV

infusion which is intended to deplete B cells and then " re-boot " the immune

system. My daughter has just completed her two loading doses of this drug

and is supposed to have this procedure again in 6 months. So far, she feels

pretty sick, I will keep you posted as to her progress.

I believe there are only about 20 patients worldwide who have been treated

with a bone marrow transplant for RA. I also believe this procedure is

reserved for those with life threatening disease as it is extremely

dangerous. I could be wrong, but this is the impression I get.

Lori (, 13 yo with severe RA)

_____

From: [mailto: ] On Behalf

Of CHRISTINA LINCOLN

Sent: Sunday, December 03, 2006 10:16 PM

Subject: Bone Marrow Transplantation

Hello! I wanted to throw something out there that a doctor (Rheumy)

mentioned at a consultation visit. He's not my son's rheumy but someone we

went to for a second opinion. He's an amazing physician and works with the

Arthritis Foundation. He talked with us for about an hour... explaining all

of our treatment options.. and as a last option he mentioned a bone marrow

transplantation. He explained that this procedure would clean his cells and

put them back into his body... in a sense rebooting his computer. Has anyone

heard of this or gone through this process? It seems awfully risky to me.

Sam, age 5, systemic JRA

[Guest guest]

Hi ,

Yes, I know someone that had this procedure. It was seven years ago,

and it was done at Oregon Health and Science University Hospital.

While they were on the oncology floor of the hospital, we were on

another floor getting n's initial diagnosis of systemic JRA.

Their daughter is 16 or 17 now. They are a member of our support

group here in Oregon, but aren't too active. They are extremely busy

with other kids and their farm. I don't know exactly how Mollie is

doing these days. The last I heard was that she had hit a few bumps

in the road. (n,17, systemic)

On Dec 3, 2006, at 7:15 PM, CHRISTINA LINCOLN wrote:

> Hello! I wanted to throw something out there that a doctor (Rheumy)

> mentioned at a consultation visit. He's not my son's rheumy but

> someone we went to for a second opinion. He's an amazing physician

> and works with the Arthritis Foundation. He talked with us for

> about an hour... explaining all of our treatment options.. and as a

> last option he mentioned a bone marrow transplantation. He

> explained that this procedure would clean his cells and put them

> back into his body... in a sense rebooting his computer. Has anyone

> heard of this or gone through this process? It seems awfully risky

> to me.

>

> Sam, age 5, systemic JRA

>

>

[Guest guest]

There is someone on the list whose son had it a few years back,

successfully. He doesn't post too often anymore but perhaps he will if

he sees your question. I'll see if I can find any of his old posts and

repost them, Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of CHRISTINA LINCOLN

Sent: Sunday, December 03, 2006 9:16 PM

Subject: Bone Marrow Transplantation

Hello! I wanted to throw something out there that a doctor (Rheumy)

mentioned at a consultation visit. He's not my son's rheumy but someone

we went to for a second opinion. He's an amazing physician and works

with the Arthritis Foundation. He talked with us for about an hour...

explaining all of our treatment options.. and as a last option he

mentioned a bone marrow transplantation. He explained that this

procedure would clean his cells and put them back into his body... in a

sense rebooting his computer. Has anyone heard of this or gone through

this process? It seems awfully risky to me.

Sam, age 5, systemic JRA

[Guest guest]

Hi -

I did a little research on this a few years back, when it seemed that we were

running out of medical options. Many of the trials on this have been done in

the Netherlands. In the U.S., the Fred Hutchinson Cancer Research Center seems

to be the main hub for this type of treatment. As a matter of fact, they have

an open trial that has been listed for years on clincaltrials.gov.

Generally, they harvest the patient's stem cells and then treat the patient

with either high dose chemo, or a high dose chemo-radiation combo. Then, the

stem cells are put back.

Because of the total devastation to the immune system from the chemo, patients

are at a high risk of secondary infection. It means long term hospitalization

followed by " bubble living " to ward off any chance of infection. I couldn't get

past the risk of death from a serious infection following chemo... and in the

early trials, that percentage was pretty high (somewhere in the 10-15% range,

depending on the research you read). The other downside is that some patients

are non-responsive (about 15%) or have limited response.

On the upside, results for complete remission (drug-free!) seem to be about

50-55%.

Things have improved a ton since they started doing this treatment.... so I

don't want to scare you away from it completely. They are changing the protocol

all the time to limit the risks.

By the way, I still have to catch up on other posts.... but welcome to the

group! If your Sam is the Sam from the AF video, I feel like I know you

already. I had to flee the room at a conference recently when they put it on...

your story is so close to home for me. My daughter was diagnosed systemic at 3

and is now 8. Welcome!!

Here is a page you can try:

http://www.ncbi.nlm.nih.gov

search " autologous stem cell transplation juvenile arthritis " - I came up with

37 references.

And here is another:

http://ard.bmj.com/cgi/content/full/63/10/1318

Best hopes to you-

Colleen (mom to Caitlin, 8, systemic)

CHRISTINA LINCOLN <chrislinc@...> wrote:

Hello! I wanted to throw something out there that a doctor (Rheumy)

mentioned at a consultation visit. He's not my son's rheumy but someone we went

to for a second opinion. He's an amazing physician and works with the Arthritis

Foundation. He talked with us for about an hour... explaining all of our

treatment options.. and as a last option he mentioned a bone marrow

transplantation. He explained that this procedure would clean his cells and put

them back into his body... in a sense rebooting his computer. Has anyone heard

of this or gone through this process? It seems awfully risky to me.

Sam, age 5, systemic JRA