Another wonderful Lupus story, patient saved by a stem cell transplant

Since the announcment that stem cell transplants can be performed successfully for lupus at Northwestern University Hospital, it looks like they'll announce each case as they proceed. I think that's a great way to keep everyone up to date.

In this latest story, a patient by the name of Edjuana Ross suffered the serious symptoms of lupus which include immune system failure, severe joint pain, facial scarring, heart damage and three strokes. Her medication of cortisone (steroids) caused her to put on more than 100 pounds which would probably have caused other complications. Her doctor, an immunotherapist by the name of Dr. Richard Burt recommended an adult stem cell transplant to fix her immune system.

Ms. Ross underwent mobilization by GCSF to harvest her stem cells, then chemotherapy to destroy the existing immune system and the transplant by her own stem cells to "reboot" her immune system.

Half the patients who have undergone the procedure are now lupus free and patients like Ms. Ross say that it has changed their life and removed their suffering. She has also slimmed down, which I am sure does a great deal for her own self confidence.

Whilst there are risks to transplantation, like the possibility of infection, or sterility (unable to concieve), with all the suffering that these patients go through, I just wonder why doctors don't start informing their patients about it earlier. If the procedure is well managed (right training and facilities are important) then I think that patients would be happy to know that this is an option to relieve their suffering earlier rather than later.

In this vein, perhaps doctors can find a way to keep re-booting that immune system should it malfunction again. I wonder if Ms. Ross has any stem cells leftover...? She'd be able to re-boot her system back to that date!


If you have lupus or know someone who does and would like to get in touch with the doctor, his contact details are as per below.*

Richard Burt, M.D.
Physician Referral
240 East Ontario St.
Ste 450
Chicago 60611
(312) 926-8400
rburt@northwestern.edu


*I received a letter recently from one of our clients who asked if we had a resource available with information on where stem cell treatments are performed and whom by. From now on, I'll do my best to start putting that down as a reference in this blog.

First Collective Interview of Adult Stem Cell Patients with Successful Outcomes

I read with great interest an announcement that a few successful adult stem cell therapy patients would be gathering in Washington to share their experiences and show how they have improved.

Many patients are tremendously shy when discussing their condition and I think its marvellous that they are willing to come forward. No doubt there may be a political slant to organizing this event (given that Senator Sam Brownback from Kansas and Dr. David Weldon who is from the House of Representatives will be giving keynote speeches), but if it is to promote awareness and funding for stem cell clinical trials and to further understanding of applications, I'm all for it.

There were 5 featured speakers:

Jacki Rabon- Stem cells used for treatment in her spinal cord (see previous entry)

Cathy Pell- Daughter Abby received cord blood treatment for cerebral palsy and used her own cord blood stem cells

Dr. David Foege- Heart failure patient who underwent Theravitae's stem cell therapy developed by Dr. Amit Patel in Pittsburgh

Mary Schneider- Son Ryan treated with his own cord blood when he was 2 for cerebral palsy at Duke University (same as Abby)

Stephen Sprague- Was diagnosed with CML 10 years ago and used cord blood stem cells for a transplant source and is well today

Apparently they shared phenomenal stories of success in their treatments and encourage more adult stem cell work to be done.

"To date, embryonic stem-cell research has failed to produce one successful treatment," said Paul Chaim Schenck, director of the national pro-life action center. "Conversely, adult and cord-blood stem-cell research has yielded over 65 successful treatments, including curing diabetes in some patients."

Interestingly, the session was organized rather innovatively as a wine-tasting session sponsored by a company called BOGO wines. Its owner, Bill Schneeberger is a Catholic from Ohio who donates $2 (USD) from every bottle sold to adult stem cell research. Check out the follow-up article here, it's got some interesting insights to the event but not much on the patients themselves.

I would have loved to be there to listen and ask them questions. If anyone reading this blog attended the session, I'd really appreciate if you'd share the information with me.

Update on the Spinal Cord stem cell patient at Westlake

As an update to my last entry on a lady who used her own bone marrow stem cells for her chronic back pain, I found a more detailed account published today which describes her condition before and after the infusion.

It also reveals the patient's name, Lotrell Davis from Texas. Interestingly, it also mentions that the centrifugation is done by a company by the name of "Surgical Outcomes" but on its website, it states that the company is an information exchange, and I didn't find anything on stem cells in any of the pages.

Quite a number of patients from Texas undergoing stem cell therapy in the news recently!

Lupus (SLE) Peripheral Blood Stem Cell Transplant for Texan lady at North Western Memorial Hospital

This article describes a patient by the name of Kim Freeman, who has lived with the disease for 10 years but lupus (SLE*) was taking its toll -attacking all her organ linings- causing her heart and lungs to fail. She seems brave and quite determined (and despite her insurance being unable to cover the costs of treatment) has managed to raise sufficient funds through her own effort plus a little help from her local philanthropists.

Her 5-week treatment involves peripheral blood stem cell mobilization to elicit the generation of new stem cells and immune cells, and to move these new cells from the bone marrow to the bloodstream. These newly generated and disease free stem cells are harvested, processed and banked for a subsequent return in the form of a bone marrow stem cell transplant. Chemotherapy is then administered after the stem cells have been harvested to remove the affected cells from her bloodstream and to wipe out the bone marrow cells to make way for the returning cells (presumably lupus affects the cells later on when they have become mature immune cells). She underwent this procedure on May 9th 2006.

Typical treatments range from drugs and chemotherapy to knock off or sequester the immune cells causing the problem to therapeutic apheresis (blood separation by specialized machine), which removes the cells from the blood circulation. In the worst case scenario where neither of these two techniques work, a stem cell transplant is performed to essentially turn back the bone marrow’s cellular clock to a time before the immune cells developed the wrong function.

In Chicago’s North Western Memorial Hospital, doctors have been steadily refining the protocols of stem cell transplantation for SLE and have successfully treated more than 50 patients. This procedure is still classified as “experimental” as each procedure is tailored to the patient’s given condition at the time and there are no guarantees of success, but for patients who have no other option this may buy them some quality of life back and some hope that their medication and its accompanying side effects can be simultaneously reduced.

It is estimated that 1.5 million Americans suffer from Lupus and I don’t know the figures for Malaysia or Thailand but I know it isn’t rare (but early, accurate diagnosis might still be a problem). At StemLife, we have met quite a number of lupus patients, mostly females in their early twenties whose lives have been almost ruined by the disease and caused grief and constant concern amongst family members.

Most of them seek us out to enquire if a treatment is available to which I’ve responded that the only work I know of is that mentioned in this article in the US. However, I have heard that the Singapore General Hospital has made a decision to treat this condition and have sent doctors to Chicago to learn the procedure. Perhaps these patients will be able to go to nearby Singapore in the near future to have their treatment as the US is awfully far away for these patients to travel.

The article estimates that it will be 6-12 months before we find out if it worked for Kim Freeman, which I hope it does.


If you have lupus and would like to find out about clinical trials for SLE, have a look at their website here.
*SLE = Systemic Lupus Erythmatoses

StemLife attends Cord Blood Transplantation Conference in Biopolis, Singapore (2)

A couple more interesting points made at the conference:

Prof. Takahashi presented a few slides on the use of umbilical cord blood stem cells in regenerative medicine. He showed data indicating that precious Mesenchymal stem cells found in UCB would deplete in number over time prior to freezing. Freshly collected umbilical cord blood has decent numbers of mesenchymal stem cells, important in regenerating bone, cartilage and other tissue. However, after 20- 25 hours, no mesenchymal stem cells could be isolated for differentiation and tissue formation.

This point reaffirms StemLife's policy of getting the unit to the lab for processing within 24 hours no matter where the cord blood is collected from. We invest much energy and time in ensuring that this logistics policy is adhered to, for the benefit of our clients in the future (never know when those Mesenchymals will be needed!).

Dr. William Hwang of the Singapore Cord Blood Bank (SCBB) was generous in sharing his data, and highlighted that the reason why umbilical cord blood was a good source was partly due to the Bone Marrow collection procedure's association with a risky 0.27% rate of mortality (i.e. 27 patients out of 100 patients!). Thus, umbilical cord blood would be a much less riskier source from which to obtain stem cells. He also pointed out that the SCBB could target the ethnic minorities in Singapore and serve their needs. In their hands, cord blood stem cell engraftment took 5-6 weeks in adults and a futher 5-6 weeks to obtain the equilibrium for immune stability. Another piece of good news, the SCBB also aims to support the stem cell transplantation program for Systemic Lupus Erythmatoses (SLE) which is already being conducted in Singapore. SLE patients take note.

The SCBB is a "public" bank but is supported and funded by charitable organizations, not government funding thus far (although they have expressed the liking for more governmental support). However they collaborate closely with government transplant centres which offer their services to the public. And yes, Singaporeans will still have to pay for cord blood stem cell units if they need them. How much? Check with your transplant centre.