UCLA allo CTL clinical trial

feelinggood

Has anyone out there been on this trial? Did you have good results?

I think there are only about five of you out there in the world that have been on this trial...

The trial involves intratumoral adoptive transfer of alloreactive CTL that are directed against patient HLA antigens present on brain tumor cells but not normal neuroglia. Patients undergo resection for recurrent glioma and then receive multiple infusions of alloreactive CTL through a reservoir/catheter system that is implanted at the time of surgical debulking.

I_Promise

I know the trial very well
Hi,

I have spoken directly to lead researcher Carol and the neurosurgeon Linda Liau about this trial. This is the trial I wanted my sister to participate in (aa3 diagnosed august 2011) since she has already an Omaya reservoir and no additional surgery would be necessary for her. Unfortunately because of buraucratic reasons the trial is only openned to RECURRENT/PROGRESSIVE brain cancer. My sister's MRI have been stable and so therefore she was turned down. This method was used on 6 patients years ago: 3 GBMs and 3 anaplastic astrocytoma. The GBMs did not do well beacuse the tumor was growing too fast. Of the three anaplastic astrocytoma patients, 2 are alive and well 15 years later with no other therapies than the allo T cells. One of them, just had a baby.

Please share your story and let me know why you are looking into this trial. I though it was a good one for my sis.

J.

feelinggood

I_Promise said:

I know the trial very well
Hi,

I have spoken directly to lead researcher Carol and the neurosurgeon Linda Liau about this trial. This is the trial I wanted my sister to participate in (aa3 diagnosed august 2011) since she has already an Omaya reservoir and no additional surgery would be necessary for her. Unfortunately because of buraucratic reasons the trial is only openned to RECURRENT/PROGRESSIVE brain cancer. My sister's MRI have been stable and so therefore she was turned down. This method was used on 6 patients years ago: 3 GBMs and 3 anaplastic astrocytoma. The GBMs did not do well beacuse the tumor was growing too fast. Of the three anaplastic astrocytoma patients, 2 are alive and well 15 years later with no other therapies than the allo T cells. One of them, just had a baby.

Please share your story and let me know why you are looking into this trial. I though it was a good one for my sis.

J.

I just started this trial
I just started this trial after my surgery May 2012 with Dr. Liau. I thought it was pretty amazing that those two patients went 15 years without further treatment. It's not a whole lot of data to evaluate but I was pretty much deciding between Phase 1 trials with little or no human testing.

2000: Surgery for grade II/III Oligo plus PC (without the V) chemotherapy. 1P/19Q deletions found University of Michigan
2004: Surgery for grade III Oligo plus one year of Temodar 5/23 - University of Michigan / Cleveland Clinic / Mayo Clinic
2007: Blood Brain Barrier Disruption program with Carboplatin, Melphalan and Etoposide Phosphate - Oregon Health and Sciences University / MD Anderson

http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/brain-cns-tumors/treatment-options/medical-therapy/blood-brain-barrier-disruption.cfm

2009: Brain Surgery at University of Michigan Hospitals – all visible tumor removed
2009: Proton Radiation at Mass. General Hospital

http://www.massgeneral.org/radiationoncology/AboutProtonTherapy.aspx

June 2009-October 2010: Vaccination clinical trial at University of Pittsburgh – Hillman Cancer Center

http://www.neurosurgery.pitt.edu/news/2006/tumor_vaccine.html

October 2010 - Gamma Knife Radio-surgery for focal recurrence - Hillman Cancer Center
August 2011 - Possible recurrence noted on MRI
May 2012 - Surgical removal at UCLA plus donor T-cell clinical trial

I_Promise

feelinggood said:

I just started this trial
I just started this trial after my surgery May 2012 with Dr. Liau. I thought it was pretty amazing that those two patients went 15 years without further treatment. It's not a whole lot of data to evaluate but I was pretty much deciding between Phase 1 trials with little or no human testing.

2000: Surgery for grade II/III Oligo plus PC (without the V) chemotherapy. 1P/19Q deletions found University of Michigan
2004: Surgery for grade III Oligo plus one year of Temodar 5/23 - University of Michigan / Cleveland Clinic / Mayo Clinic
2007: Blood Brain Barrier Disruption program with Carboplatin, Melphalan and Etoposide Phosphate - Oregon Health and Sciences University / MD Anderson

http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/brain-cns-tumors/treatment-options/medical-therapy/blood-brain-barrier-disruption.cfm

2009: Brain Surgery at University of Michigan Hospitals – all visible tumor removed
2009: Proton Radiation at Mass. General Hospital

http://www.massgeneral.org/radiationoncology/AboutProtonTherapy.aspx

June 2009-October 2010: Vaccination clinical trial at University of Pittsburgh – Hillman Cancer Center

http://www.neurosurgery.pitt.edu/news/2006/tumor_vaccine.html

October 2010 - Gamma Knife Radio-surgery for focal recurrence - Hillman Cancer Center
August 2011 - Possible recurrence noted on MRI
May 2012 - Surgical removal at UCLA plus donor T-cell clinical trial

I am impress
by your tenacity and your ability to jump from one treatment to another. It looks like you are going strong 12 years after your diagnosis. Did you do the research yourself and contacted the various institutions? I am inspired by your track record.
Please let me know how this trial go. I log in every so often. I want you to beat this monster once and for all.
all the best,

Julia

feelinggood

I_Promise said:

I am impress
by your tenacity and your ability to jump from one treatment to another. It looks like you are going strong 12 years after your diagnosis. Did you do the research yourself and contacted the various institutions? I am inspired by your track record.
Please let me know how this trial go. I log in every so often. I want you to beat this monster once and for all.
all the best,

Julia

Dr. Kruse knew who you were
Dr. Kruse knew who you were when I mentioned the posting to her.

I usually search the clinical trial listings and eliminate the ones that I don't qualify for. Then I narrow down the few that I am interested in learning more about. Dr. Okada's vaccination trial was the only vaccination trial that was open and I was qualified for last recurrence.

I looked into the trials at The City of Hope and UCLA this time. I was initially interested in the Tocagen trial at UCLA before learning more about the ALLO CTL trial. With the previous 6-8 people that were treated before on the ALLO CTL trial, it was the only trial that had any human data to back it up. Plus, the two that went 15 years with no further treatment was really encouraging to me.

I'm on my second round of injections now. Everything is going well so far. I has some swelling from my surgery that delayed the first injection for a day. That was mainly due to the number of surgeries I've had and not the trial. The first injection of the second round went really smoothly. I think we are all working out the little kinks and getting the schedule down. (You have to be monitored in the hospital for 24 hours after the injection. I was trying to fly out of LAX the next day in the evening and it was making it a teal time crunch. Now, I'm staying an extra day and flying out the third day.)

feelinggood

I_Promise said:

I am impress
by your tenacity and your ability to jump from one treatment to another. It looks like you are going strong 12 years after your diagnosis. Did you do the research yourself and contacted the various institutions? I am inspired by your track record.
Please let me know how this trial go. I log in every so often. I want you to beat this monster once and for all.
all the best,

Julia

I was wondering why you said
I was wondering why you said I was 12 years out and blaming you for not being all that great at math:)

The first line of my history signature got cut off:

1994: Presented with a seizure. Surgery for grade II Oligo with no further treatment- 18yo - Right frontal lobe - University of Michigan

2000: Surgery for grade II/III Oligo plus PC (without the V) chemotherapy. 1P/19Q deletions found University of Michigan

18 years! Would be great to go another 15 without any further treatment!

feelinggood

I_Promise said:

I am impress
by your tenacity and your ability to jump from one treatment to another. It looks like you are going strong 12 years after your diagnosis. Did you do the research yourself and contacted the various institutions? I am inspired by your track record.
Please let me know how this trial go. I log in every so often. I want you to beat this monster once and for all.
all the best,

Julia

I saw your other post about
I saw your other post about being frustrated that there seems to be nothing to do while in recovery from the first incident. I didn't start looking into treatment options until I was into my third tumor. I was comfortable with my Univ. of Mich. team and there wasn't the Internet options there are now. Standard options are probably still good to exhaust before experimental ones. I think the hope is that this becomes a chronic condition. I went on Anafranil for a while and it wasn't bad. Don't know if it helped any: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000990/.

I_Promise

feelinggood said:

I saw your other post about
I saw your other post about being frustrated that there seems to be nothing to do while in recovery from the first incident. I didn't start looking into treatment options until I was into my third tumor. I was comfortable with my Univ. of Mich. team and there wasn't the Internet options there are now. Standard options are probably still good to exhaust before experimental ones. I think the hope is that this becomes a chronic condition. I went on Anafranil for a while and it wasn't bad. Don't know if it helped any: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000990/.

thank you

It looks that you are well on your way of making this a chronic condition. Please keep me posted about your clinical trial. I am very interested.

As far as my sister is concerned, I would like also that her condition is chronic. But I want to spare her recurrences if possible. I just don't want to suffer more than she already has.

J.

feelinggood

I_Promise said:

thank you

It looks that you are well on your way of making this a chronic condition. Please keep me posted about your clinical trial. I am very interested.

As far as my sister is concerned, I would like also that her condition is chronic. But I want to spare her recurrences if possible. I just don't want to suffer more than she already has.

J.

This trial will be an FDA
This trial will be an FDA approved treatment by the time your sister might need it-if there is anything I can do about it.

Olga123

Wow! 18 years and feeling
Wow! 18 years and feeling good:)
People like you give me hope!
Bless you!

Olga

sadinholland

Olga123 said:

Wow! 18 years and feeling
Wow! 18 years and feeling good:)
People like you give me hope!
Bless you!

Olga

Gamma knife
Feeling good,
How did gamma knife go for you? Any complications?

cindysuetoyou

sadinholland said:

Gamma knife
Feeling good,
How did gamma knife go for you? Any complications?

Sadinholland!
Sadinholland! I have been looking for a post from you and wondering how things are going. I haven't seen or heard or read a post from you in a long, long, time. How are you and your husband doing? I hope you are both doing well. Please let me know how things are with you both. I'm so glad to see a post from you!

My son is not doing very well. I'm afraid that he does not have much time left. I am posting on the caretakers and emotional support and grief and berevement boards these days.

Love and blessings, always!
Cindy in Salem, OR

I_Promise

cindysuetoyou said:

Sadinholland!
Sadinholland! I have been looking for a post from you and wondering how things are going. I haven't seen or heard or read a post from you in a long, long, time. How are you and your husband doing? I hope you are both doing well. Please let me know how things are with you both. I'm so glad to see a post from you!

My son is not doing very well. I'm afraid that he does not have much time left. I am posting on the caretakers and emotional support and grief and berevement boards these days.

Love and blessings, always!
Cindy in Salem, OR

yes, I hope for new treatment options
Feeling Good: I do hope that new FDA approved treatment will be available; but research that seems promising never goes as fast as I want. But I am grateful for your encouragement. Did you get your first injection? Did you have any side effect? Any change with the MRI?

Cindy: I follow you on the grief and berevement board. You are so strong. David knows how much you love him.

My sister had another stable MRI. It has been a year since her diagnosis. She was hoping to do MRIs every 6 months but I think it is too early. Her NO agrees with me. At least it looks like she just wants to go on with her life and not focus on the "what if".

She lost a lot of weight but if I try to bring it up, she becomes very angry with me. She loves being a size 0 and loves her new body. It finally is the "ideal" body that you see in the magazines. I don't want to take away some of her happiness and self confidence (especially since she still has to wear a wig, her hair did not grow back); and I know she loves putting on small shorts and platteforms. But I know better: she needs good nutrition.

J.

feelinggood

sadinholland said:

Gamma knife
Feeling good,
How did gamma knife go for you? Any complications?

Gamma Knife
The gamma knife treatment was a really easy procedure. It was effective to treat the small area of recurrence that I had and I didn't have any immediate side effects.

In my most recent recurrence, I had a lot of necrosis. I wasn't having any symptoms from it but it is likely that the GK procedure contributed to the necrosis. I don't think anyone can say for sure. I had some pretty intense chemotherapy, proton radiation and gamma knife. So, the necrosis was probably a result of all of that to some extent. However, I think the possibility of radiation necrosis is something to consider when evaluating gamma knife.

feelinggood

I_Promise said:

thank you

It looks that you are well on your way of making this a chronic condition. Please keep me posted about your clinical trial. I am very interested.

As far as my sister is concerned, I would like also that her condition is chronic. But I want to spare her recurrences if possible. I just don't want to suffer more than she already has.

J.

Update
My most recent MRI showed a reduction of the post-surgical flair signals and all is going well.

They are currently testing my sister and half-brother for their T-cell activity against my tumor. My sister's T-cells produced a 90 percent kill rate in the lab and she will be doing a pharesis for my November treatment. My next injection in September with a random volunteer also produced a 90 percent kill rate.

"Percentage lysis obtained at various effector to target ratios obtained from 4 hr Calcein-AM release cytotoxicity assay. Relatives with similar HLA-types to assess as donors of precursor alloCTL."

I_Promise

feelinggood said:

Gamma Knife
The gamma knife treatment was a really easy procedure. It was effective to treat the small area of recurrence that I had and I didn't have any immediate side effects.

In my most recent recurrence, I had a lot of necrosis. I wasn't having any symptoms from it but it is likely that the GK procedure contributed to the necrosis. I don't think anyone can say for sure. I had some pretty intense chemotherapy, proton radiation and gamma knife. So, the necrosis was probably a result of all of that to some extent. However, I think the possibility of radiation necrosis is something to consider when evaluating gamma knife.

Dear feeling good,
I am glad your sister's T-cell are effective!
I am glad you keep updating on the web as I am very interested in this particular trial. I think it is a good one.
My thoughts go to you and your success.

J.

feelinggood

I_Promise said:

Dear feeling good,
I am glad your sister's T-cell are effective!
I am glad you keep updating on the web as I am very interested in this particular trial. I think it is a good one.
My thoughts go to you and your success.

J.

I'm very excited about this treatment and the history of it is also very inspiring. If you haven't seen this already: http://www.braintumorimmunologyfoundation.org/team.html.

I've followed a lot of exciting new treatments over the years just to see them ultimately fail. (Temodar being the only new drug FDA approved in my nearly twenty years of dealing with this.) I've also learned that it's really difficult to predict the next treatment option or whether there will even be an option. An exciting trial may be closed before you can get on it or you may not meet the eligibility requirements when you want/need to go on it.

There is so much great work going on in the last five to ten years that I think immunology is going to start to make a real breakthrough. I definitely have higher hopes for this trial than any I've seen so far.

Hopefully, they will find the key to the best HLA disparity for the most effective treatment and have good results.

Lorainne

feelinggood said:

I'm very excited about this treatment and the history of it is also very inspiring. If you haven't seen this already: http://www.braintumorimmunologyfoundation.org/team.html.

I've followed a lot of exciting new treatments over the years just to see them ultimately fail. (Temodar being the only new drug FDA approved in my nearly twenty years of dealing with this.) I've also learned that it's really difficult to predict the next treatment option or whether there will even be an option. An exciting trial may be closed before you can get on it or you may not meet the eligibility requirements when you want/need to go on it.

There is so much great work going on in the last five to ten years that I think immunology is going to start to make a real breakthrough. I definitely have higher hopes for this trial than any I've seen so far.

Hopefully, they will find the key to the best HLA disparity for the most effective treatment and have good results.

allo CTL clinical trial
I was wondering how you were doing in the trial, and if you are still as excited about it.

I_Promise

Lorainne said:

allo CTL clinical trial
I was wondering how you were doing in the trial, and if you are still as excited about it.

Dear feeling Good,
I hope that you are still doing strong with this clinical trial. I got an email not too long ago from Carol asking how my sister is. I told her that her MRIs are still stable; so she is still not eligible for the trial.

J.

alutiiqmom

I_Promise said:

Dear feeling Good,
I hope that you are still doing strong with this clinical trial. I got an email not too long ago from Carol asking how my sister is. I told her that her MRIs are still stable; so she is still not eligible for the trial.

J.

Sarah
Hi Julia:
Sarah is not doing very well. Her speech is very impaired. We are doing an MRI on Tuesday. Please tell me about what you have found for patients who have reoccurrences? Thanks.
edna@camai.com

God Bless You.
Edna

cindysuetoyou

alutiiqmom said:

Sarah
Hi Julia:
Sarah is not doing very well. Her speech is very impaired. We are doing an MRI on Tuesday. Please tell me about what you have found for patients who have reoccurrences? Thanks.
edna@camai.com

God Bless You.
Edna

praying
Dear Edna,

I just wanted to let you know that I am really praying hard for you and for your beautiful, sweet daughter Sarah. Praying for God's healing touch on her and for peace of mind and strength for you and all of your family.

with much love and blessings,
Cindy
in Salem, OR