Update on NIH Trial

Discussion Board Forums Clinical Trials Update on NIH Trial

Viewing 15 posts - 61 through 75 (of 93 total)
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  • #78745
    lainy
    Member

    Melinda, that goes above great news! YIPPEE! I would also take slow and steady. Good report and I would expect the next one to be even better. We want the CC kicked to the curb. Thanks so much for letting us know. You will now be able to enjoy all the up coming holidays. YIPPEE!

    #78744
    mbachini
    Moderator

    Hello everyone!

    I made it home from the east coast late Sunday night. My one year post treatment checkup went very well. I met my new fellow at NIH, my husband and I did our best to break him in….we get a new fellow every year and so far I have been so blessed to have had some really great doctors! The scans showed that everything was STABLE, some slight shrinkage to some tumors in my lungs! They said they fully expect it to slow down and that it could stay this way for years! I am so totally okay with that…I can live quite well the way things are. I am due to return in February for my next checkup. My husband grilled them with questions, he always likes to have a plan B, but basically we have to take it one checkup at a time.

    We spent a long time talking with Eric Tran, my research scientist. He is such a great person and I just can’t say enough about him. He told us they are working on some exciting things. I told him to hurry up! We need some more breakthroughs for this disease. I do have hope and confidence that they will continue to make progress.

    When I arrived home, I had an email that stated the official measurements did show that the tumors were slightly smaller than 4 months ago and still on a slow and steady decline! I will take slow and steady any day!! :)

    I just wanted to update everyone and to let you know that I am always thinking and praying for everyone fighting this fight!

    Lots of hugs,
    Melinda

    #78743
    marions
    Moderator

    And, yes the person described is our very own Melinda.

    #78742
    gavin
    Moderator

    Thanks for that Marion.

    #78741
    marions
    Moderator

    A bit more information regarding the clinical trial:
    http://www.nih.gov/researchmatters/may2014/05192014cancer.htm

    #78740
    mbachini
    Moderator

    That is awesome news Richard!!!! I am looking forward to hearing back what you find out, progress is all we can ask for….one foot in front of the other! Keep up the good work and tell Jeanne to hang in there! Lots of prayers coming your way!!
    Melinda

    #78739
    tigercruise
    Member

    Melinda, thanks so much for your kind words and concern. We are making progress. We have an appointment at NIH on August 4th for screening. I now have my foot in the door. And, there is a clinical trial at Johns Hopkins that is also treating Jeanne’s specific mutation. So, we are making progress. Thanks for all your love and prayers. You’re the best.
    Richard

    #78738
    mbachini
    Moderator

    Oh Kim….thank you so much for the kind words, I just want to help in anyway I possibly can! You and your dad are so inspiring to me! I love the way you fight with all you have for your mom! I hope that with the sequencing she had done it will open more doors! Please keep us updated with her progress. I will continue to pray for her….please give a hug to your dad for me, I so enjoyed my conversations with him! I could feel the love he has for your mom…..so special!
    Love and prayers to you!
    Melinda

    #78737
    tigercruise
    Member
    mbachini wrote:
    Hello All,

    I returned from NIH this week….8 months post treatment. I received wonderful news! I continue to have shrinkage in tumors, somewhere around a total of 42% overall since treatment. The other good news was that I had a PET scan for the first time since diagnosis of mets to lungs and it showed no evidence of metabolic activity in the tumors in my liver. I don’t have to return to NIH for about 4 months, which seems like a lifetime to me! I feel so happy and so very blessed!

    They told me that they were overwhelmed with calls after the articles came out, something like 400 calls in a couple of days! I also have been contacted via email, facebook, caringbridge and good old fashioned home phone….not hard to find my last name listed in the phone book….by so, so, many people! It has been an amazing journey. People just want HOPE! I even had the opportunity to meet some fellow fighters while I was back east this week.

    I hate hearing when patients are not accepted into this trial. It breaks my heart, and while I know it may not work for everyone, it saddens me that people who are out of options can’t give it a try. I do know that the scientists are working extremely hard to perfect this treatment and are so very hopeful for other treatments coming up. I encourage anyone interested to still give NIH a call. I also know that it is a time saver to have the tumor sequencing already done, the scientist that works on my cells said that alone saves a month worth of work on his part, and we all know how important time is. I want to help in any way I can so please don’t hesitate to contact me. I believe that we will be seeing some good results in the next couple of months and I can’t wait to have more success stories!

    All my thoughts, prayers and love to you all,
    Melinda

    Melinda,

    This is Kim Thompson and Richard Thompson. We are SO very happy to hear about your last visit with NIH and the positive results. What a blessing you have been to so many others on this site and everywhere who are battling this. We can’t begin to thank you enough for all the advice and for sharing your story so that others may be aware of their options so they don’t lose hope!

    Keep telling your story, you are TRULY making a difference!!!

    My mother had her sequencing done and we received a call this morning that they found the specific mutation. We are awaiting a call back and will keep everyone informed.

    Thoughts and prayers to everyone and be thankful for every day, it is a GIFT!

    Thanks again Melinda!!!!!

    #78736
    marions
    Moderator

    Melinda…thank you for the excellent explanation re: genome and whole- exome sequencing. I am sure that many others will read this patient friendly version.
    Hugs,
    Marion

    #78735
    mbachini
    Moderator

    All,
    This is the response I received from the research scientist at NIH in regards to the tumor sequencing. It is quite an education, especially for my simple mind. I hope this helps and I appreciate his quick response and honesty at the end. This is his reply:

    There are several types of sequencing, the most widely used in the clinic is “targeted sequencing”. This type of sequencing only looks at a relatively small number of genes and tests to see if these genes contain mutations. The reason why this is used in the clinic is because mutations in these specific genes can predict whether a certain drug will be effective or not, so this can be used to guide a treatment. However, this type of sequencing would likely not be very helpful to us because only a relatively small number of genes are assessed. With fewer genes assessed, we would have much fewer (or no) mutations to test. It’s already a “needle in a haystack” when we look at all the mutations, so it would be more like a “needle in a football stadium” if we only evaluated a few mutations.

    Then there is whole-genome sequencing (WGS), and whole-exome sequencing (WES), both of which can evaluate the presence of mutations in most genes in the human genome. These are the types of sequencing that we can use. Both can give reliable data if the “read coverage” is high enough. What this means is that the “deeper” we sequence (the more sequence reads we get for a particular gene), then the more confident we are that it is a true mutation. For example, if we only detected one sequence containing the mutation out of 5 sequences read, this would be 20% mutation frequency, but we would be more confident that this is a true mutation if we detected, say, 20 sequences out of 100 sequences read (still 20%). This is because there are errors that can occur during DNA sequencing. The 1/5 could be an error and therefore not a real mutation, however, it’s statistically less likely that 20 errors occurred out of the 100.

    The difference between whole-genome sequencing and whole-exome sequencing is that whole genome is just that, it reads every single base in your genome. However, you might remember that the importance of DNA is that it ultimately encodes for protein, which is what does all the work in our cells and tissues. It turns out that only about 1-2% of the entire genome encodes for protein. So whole-exome sequencing just sequences this 1-2% of the genome. Since mutations are only relevant to use if they affect the protein, whole-exome sequencing can be more efficient (since you don’t have to sequence 98-99% of the irrelevant DNA). Both have the advantages and disadvantages (which I won’t get into here).

    But to answer your question, we have used both whole-genome and whole-exome sequencing, although the vast majority of our experience is with whole-exome. It is also very important that both the tumor and a normal source of DNA from the same patient are sequenced. For example, you can sequence peripheral blood cells (from a blood draw) as a source of normal DNA. We need this as a reference to identify what is a true mutation (since, in most cases, only the tumor will have the mutation).

    So in an ideal situation, a patient would come into clinic with their tumor already sequenced. This would save us about 3-4 weeks in our testing process. However, as you know, there are many factors that have to fulfilled before a patient could even be enrolled onto our protocol. There are the clinical parameters that have to be fulfilled, and it turns out when our MDs screen patients, unfortunately many are not eligible. And there are also limitations in our lab and clinical trial capacity, since we can only handle a relatively small number of patients at any one given time.

    So I guess one thing I would make clear to potential patients is that even if they get sequencing done, there’s no guarantee that he/she would make it onto our trial. And even if they make it onto our trial, we are at such an early stage of research and development that we don’t know if we would even find mutation-reactive T cells to use for treatment. Although it would be unfortunate if patients got sequencing done and couldn’t get onto our trial, it potentially wouldn’t be for nothing, because the sequencing data could be used to advance science; genomics experts around the world are working together to catalogue the sequences of thousands and thousands of tumors to try to understand cancer better which hopefully will lead to better treatments in the future.

    I can’t tell you how much I admire this young man…..hope it helps! Melinda :)

    #78734
    kris00j
    Member

    Melinda, wonderful news!! I am doing virtual cartwheels for you!! :-)
    I discussed the trial with my onc a few weeks ago. She knows about it, and even though it isn’t at Fox Chase, I don’t think she would neglect to mention it to her patients if they don’t get into fix chases trials.
    Such an exciting, hopeful time! And you are paving the way!

    #78733
    judym
    Member

    Melinda, thank you so much for the update and for your offer to help others. It’s great to hear! I have a quick question, too i you have a chance..- by tumor sequencing do you mean what firms like Foundation Medicine analyze from the cancer tumor sample to analyze genetic mutations– or is it another kind of test?

    #78732
    mbachini
    Moderator

    Thanks for all the support…..I will do some cartwheels for sure and imagine both Lainy and Gavin next to me!!

    Jason and Marion,
    I don’t know the specifics on the sequencing, but I am more than happy to find out! It is not required to have it done before applying for the trial, it just saves time if you already have it done.
    Yes Jason, a whole year will have past without treatment! Nothing could make me happier! As soon as I get a response on the specifics, I will post them here.

    I have such hope….Melinda

    #78731
    marions
    Moderator

    Melinda…I have e-mailed you.
    Hugs,
    Marion

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