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UCLA allo CTL clinical trial

feelinggood's picture
feelinggood
Posts: 27
Joined: Dec 2004

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's picture
I_Promise
Posts: 208
Joined: Aug 2011

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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's picture
I_Promise
Posts: 208
Joined: Aug 2011

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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's picture
I_Promise
Posts: 208
Joined: Aug 2011

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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.

feelinggood's picture
feelinggood
Posts: 27
Joined: Dec 2004

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."

Olga123
Posts: 3
Joined: Aug 2012

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

Olga

sadinholland
Posts: 226
Joined: Apr 2011

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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's picture
I_Promise
Posts: 208
Joined: Aug 2011

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

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's picture
feelinggood
Posts: 27
Joined: Dec 2004

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
Posts: 2
Joined: Jan 2012

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

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

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's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Cindy:
You warm my heart. I am so blessed to read your message. I have been thinking of you - hoping and wondering how you are doing. We said a prayer for your family when we read your post about David. You are a wonderful person, posting and wondering about others during your grief.
Sarah is not doing good. Something is wrong with her speech and she is sleeping a lot. It started about two weeks ago. Also, her vision is weird. We have an eye appointment Monday and MRI on Tuesday. She started college and she is so eager to be a normal 19 year old. She tries so hard at college. I feel so bad that she keeps having set backs. Please keep praying for her. I have faith and I know that God hears our prayers. I will continue to pray for God's peace for you and your family.

Love, Edna

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

I am shocked, disappointed, extremely sad that Sarah's speech is worst. It must break your heart to see her struggling.
I am going to hope for the best. I will be following the results of her MRI on tuesday.

We don't know if she has a recurrence until that MRI. But if she does, there are a lot of options.

I have given some though about which clinical trial we would choose if my sister had a recurrence. But I have not decided which one is the best. Maybe because I knew more a year ago and I went into panic mode. I had all the clinical trial written down with their previous success rates etc.. A lot can change in a year.

Nevertheless ( disclaimer I am not a neuro-oncologist) in the event of a recurrence I would turn to a immunological trial such as the allo Tcells or one of the vaccine trials. A cutting edge neurosurgeon is Dr. Linda Liau in California.

The most important thing in the face of a recurrence is not to loose hope.

I will thinking of your daughter.

Julia

ravirajagopalan
Posts: 7
Joined: Oct 2011

Hi Feelinggood, I admire your tenaciousness. You are amazing.

I was curious - you have undergone a vaccine trial before the current alligenic trial. Do you think the alligenic trial is more promising than, say, the DCVAX trial? Just for future reference for my wife. She had a recurrence for GBM about 1 year after her initial diagnosis. We are currently trying to get in to a dendritic cell vaccine trial.

Good luck to you,
Ravi

feelinggood's picture
feelinggood
Posts: 27
Joined: Dec 2004

I think that's a really difficult question to answer. It will probably be another ten or twenty years before there is data to actually answer it.

In the mean time, I guess it's up to us to speculate. I think they are both great trials. DCVAX has more data behind it to support it. I actually wanted to be on the DCVAX trial for my recurrence in 2009 but it was temporarily suspended at that time. I was lucky to get a spot in Dr. Okada's trial. For me, a lot has been timing of whats available when I had the various recurrences. Dr. Liau at UCLA started the DCVAX trial and also runs the ALLO CTL trial. She would definitely be the person to talk to about the two.

I just finished my fourth round, using my sister's T-cells this time, and will have my final treatment in January. The treatment is almost painless. The injection hurts less than a blood draw. I haven't had a single side effect and MRIs are still looking good. It's definitely very promising and worth looking into.

ravirajagopalan
Posts: 7
Joined: Oct 2011

Hi Feelinggood, thanks for the info. Hope the trial works out for you. I will discuss the trial with Dr. Liau - hopefully in the next couple of months.

Timing is so important. For my wife's first GBM diagnosis, we got the surgery done at a local hospital. The surgeon was excellent but we did not know the need to get surgery done at a major hospital for certain clinical trials. Ended up missing all trials for one reason or another.

Now we think the best option available is the vaccine trial.

When a recurrence comes it is panic time - have to do research but also have to do something about the tumor quickly. So that limits the time available and so the best decision under the circumstance is made..:)

Good luck.

feelinggood's picture
feelinggood
Posts: 27
Joined: Dec 2004

I try to stay up on current treatments but it's very difficult. You never know when you are going to have a recurrence and what trials will be open at that time that accept you. (Also, whatever treatment options you are considering seem to have a definitive clinical trial just after you made your decision.)I had most of my treatments at The University of Michigan to start with. I didn't even think about it much. I had ten years before I really even needed to start looking into trials, thankfully. By that time, the Internet was up and running with tons of information. In 1994, my Mom was researching information for me in the library. I can't even imagine that. Libraries are so old fashioned. Good luck talking with Dr. Liau. She is pretty straight forward and seems to be well prepared with her opinion.

Ja59
Posts: 12
Joined: May 2013

Dear Feelinggood,

I found your post while researching on the effectivenessof CTL treatment. I had similar treatment with the use of my own killer cells, produced from my own blood. This excluded possibility of body reaction towards foreign protein. I had this treatment in China, as there are no CTL trials in Australia. It costs 50,000 but it is available to anyone who has right parameters, which are tested before treatment is offered. The reference website is http://cancertherapychina.com/treatment/actl-cell-therapy.html?start=4

Sorry, forgot to mention, I was diagnosed with gallbladder cancer stage 4 and was given 6 months to live in December last year. After the treatment my liver deposit 2.5x3.0 cm has disappered. I feel good too.

 

sadinholland
Posts: 226
Joined: Apr 2011

Feelinggood

Thank you for the information on gamma knife. Now I know what direction to go in with my questions if this comes up again. I pray you are doing well.

sadinholland
Posts: 226
Joined: Apr 2011

I'm still,praying for Sarah! God bless!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Prayer is so powerful! Keep praying. We are still receiving radiation but it has been real rough. She is having trouble swallowing and had to have an NG tube. I am very thankful and my prayers were answered that she is feeling better today and we can continue treatment. Everyday together matters!

God Bless you.

Edna and Sarah

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