UCLA allo CTL clinical trial

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  • alutiiqmom
    alutiiqmom Member Posts: 256
    #22
    cindysuetoyou said:

    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

    thank you Cindy
    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
    I_Promise Member Posts: 218 Member
    #23
    alutiiqmom said:

    thank you Cindy
    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

    Dear Edna,
    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
    ravirajagopalan Member Posts: 7
    #24
    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.

    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
  • sadinholland
    sadinholland Member Posts: 248
    #25
    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.

    FeelinggoodThan you for the
    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
    sadinholland Member Posts: 248
    #26
    sadinholland said:

    FeelinggoodThan you for the
    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.

    Edna
    I'm still,praying for Sarah! God bless!
  • feelinggood
    feelinggood Member Posts: 13
    #27
    ravirajagopalan said:

    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

    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
    ravirajagopalan Member Posts: 7
    #28
    feelinggood said:

    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.

    Thank you for the info
    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
    feelinggood Member Posts: 13
    #29
    ravirajagopalan said:

    Thank you for the info
    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.

    No Problem
    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.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #30
    sadinholland said:

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

    Thank you
    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
  • Ja59
    Ja59 Member Posts: 25
    #31
    feelinggood said:

    No Problem
    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.

    Ctl treatment

    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.

     

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