Update on NIH Trial
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The best thing about trail blazers is the news that the trail is paved with gold! Great going Melinda and wishing for the best news to keep coming. You are a true “Pioneer”.
Fantastic news Melinda! I’m so happy for you and thank you so much for blazing the trail for the rest of us and those to come.
It has been TWO YEARS since my last treatment!
I just returned from NIH, where my scans still show no change. I am beyond thrilled with this news! Even though it never gets easy no matter how many times I go for scans, waiting for the results, always wondering what is going on in my body……you all know what I mean. Next checkup in 3-4 months and they will do a PET scan to see if there is any metabolic activity going on in what is left.
Some details about the trial. There have been a total of 10 patients treated in the past two years, counting me, with the mutation reactive t-cell treatment. Unfortunately, not a lot of success yet. One other patient with a response. I learned that for some reason my t-cells seem to stay alive in my blood, longer then others and they are trying to understand why. They are working on figuring out how to fix that, and a new trial protocol has just been written, but trial won’t be open for about another 3 months that involves putting the mutation reactive receptor on healthy t-cells in the lab. (remember this is my lame description, but hopefully you get the gist of it.)
Lori, the other cholangio patient I posted about last time, unfortunately at her second checkup had quite a bit of growth, after having almost 50% shrinkage the first month. The exciting thing is she was just retreated with her mutation reactive t-cells with the addition of the pd-1 receptor added to them. Her tumor expressed the pdl-1 or whatever is expressed for the pd-1 so there is still hope. She is the first and only patient to have this done so far. Her results will be November 5th, so please keep her in your prayers. Wouldn’t it be great to have something else in our arsenal!!
Charmin the other cc patient hoping to do my treatment, didn’t have any cells that grew. She entered into another trial https://clinicaltrials.gov/ct2/show/NCT01853618 so hopefully she will have good news as well!
As always, you are all in my daily prayers. I am so thankful for this board and all the support I have received over the past almost 6 years. There is hope in the future of this dreadful cancer. So many, working so hard to make a difference. Thank You!!
Lots of love,
MelindaMelinda, thank you again for taking the time to speak with me today! Your kindness and generosity absolutely amaze me. I feel truly honored to have had the chance to speak with you and am immensely grateful for your time and consideration.
Sincerely,
StevenDear Steven,
I am so sorry to hear about your mother, and will keep her in my prayers. I hope that the FOLFOX will do some damage to those tumors, without causing her too much havoc.
Unfortunately, at this time it is true that the trial I am in has not had any responders as successful as the response I have had. They learn from all, and continue to perfect and work around the clock to find more ways to utilize the immunotherapy response. I will let everyone know of any further information that I get from other patients as well as my trial team. …..though I still believe that the number of patients is not really that high and with more patients they will eventually find more responders. I will try and get more factual data and post when I do. In the meantime we keep looking and fighting for what ever new treatments we can. Research is so important for this disease and progress is being made….just never fast enough.
All my best to you and your mother,
MelindaMelinda, it is so terrific to read all of the details about the continued success of your treatment with Dr. Rosenberg and the NIH team. About a month ago, a few weeks before I found this terrific website, I came across the May 8, 2014 NBC News article that was published about the success you have had with the Immunotherapy treatment while I was researching options for my mother, who I recently posted about in the Introductions and General Discussion topics of this forum. After a resection of about 60% of her liver and 6 months of adjuvant chemotherapy, we thought she was cancer free. Her scan at the end of the adjuvant therapy came back clear of cancer and her blood results were all coming back clean. They then scanned her again six months later and found the cancer had returned very aggressively. Not only additional tumors in her liver but metastasis to her lungs and even possibly on her spine.
When I saw the NBC News article, I was so pleased to learn about your terrific improvement and success with the trial.
I immediately got in touch with Dr. Rosenberg’s team and was working with Ellen to secure a spot in the trial for my mom. Everything was looking good for her to participate and they even sent a blood kit in the mail but once they saw her most recent scan, they said she would not be eligible, apparently due to the significant spread of the cancer. We were surprised and disappointed and we did not know of any better option than to take the recommendation of the oncologists at Morristown Memorial and the GI team at Memorial Sloan Kettering and get her started on FOLFOX. I followed up with the NIH team and asked if she might become eligible if the FOLFOX is successful in shrinking her tumor and got a curious response that basically boiled down to “unlikely, but anything is possible, although we are actually not having much luck with the trial other than for some melanoma patients.” I was surprised to hear that they were not considering the trial to be successful considering how terrific your treatment has been, but perhaps I misunderstood her response.
Mom is now two treatments in and it is wreaking some havoc on her body but we are holding out hope that it will be effective and, at the same time, trying to determine if there are any trials that might offer hope so we are ready to move in a different direction as quickly as possible if needed.
We are also waiting on molecular testing being conducted by MSK and holding out hope that the results present the chance for her to receive targeted treatment similar to the NIH immunotherapy treatment.
Please keep us updated on all of your successes. These positive results provide hope for all of us!
Thanks so much for all you are doing to share your story and assist others going through the same thing!
Best,
StevenSo happy to see Dr. Rosenberg recognized for his amazing work. He is by far the most humble person I have ever met.
Thanks Julie…..I would like nothing more than to be posting more great results!! Soon, I hope.
Melinda
MARION…thanks for posting that write up on Dr. Rosenberg. It’s really good to put a face to a name. And MELINDA…great news about you and Lori…..wonderful to hear that others seem to be having good….no GREAT results from the immune therapy. If you hear anything about any of the others in the program, we’d love to hear more good news if they’ll allow you to share.
Julie T.
Dr. Rosenberg was awarded for his many years of public service within the NIH:
http://www.washingtonpost.com/lifestyle/food/2015/07/21/91397520-2a61-11e5-bd33-395c05608059_story.htmlHi Melinda,
What absolutely brilliant brilliant news for you and Lori as well! Majorly chuffed for you both! Thank you so much for sharing this with us all! As far as taking this news and running with it, you go for it and run, run, run!!!
Hugs,
Gavin
Dear CC Family,
I have just returned from my 20 month post treatment check up at NIH. Things were great. Still seeing some slight shrinkage and when you compare scans from pretreatment to now, some tumors have even disappeared. I was also told that what is remaining is likely to be scar tissue. I will take that and run with it!!! Again, the best news is that this has all happened without any treatment for the past 20 months….only my immune system doing the work!
The best news this past week was that Lori, a fellow Cholangio patient, who had read my story last year and contacted me about trial information (actually her friend Ellen did) has just finished treatment…..and was also there for her fist checkup and scans. She received amazing news. Her tumors shrank up to 50% in just the first month!!!! This is absolutely HUGE news! I am posting with Lori’s permission. I want you all to know that it was NOT an easy process for her. She had a difficult time with treatment and ended up in the ICU for 15 days. I am so happy to say it was not in vain. It was great to get to meet her face to face and share in her good news!
Some bits of important information that I learned back at NIH is that they are trying to speed up the process of being treated for this trial for patients who are currently being treated by “standard of care” chemotherapy and are interested in this clinical trial. Right now the treatment is typically at current 3-4 months past the stopping of current chemotherapy, they would like to start screening ahead of time. They said this would look more like a “consult”…..not necessarily taking over patient care but consulting with current physician and preparing for when chemo stops working. Since my second treatment, and the discovery of the mutation reactive t-cells, I believe there have been 6 or 7 patients counting me and Lori, and about 16 patients in the process of being treated. This trial is opened up to many cancers and the link is found here http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=683241&version=HealthProfessional&protocolsearchid=11220695
This is the information that is requested and needs to be sent for them to evaluate:
– Recent History and Physical Exam / most recent doctors progress notes and consult note
– Recent Laboratory Results
– Recent CT, MRI or PET scan report
Please indicate if the checked information is included or is being sent separately-Recent CT, MRI, or PET scan CD (disk)
-Ten UNSTAINED Pathology slides (or tumor block in paraffin)
Please send a tumor block or 10 unstained slides with tumor on them.-Chemotherapy Records
-Radiation Therapy Records
I hope this helps for anyone interested. Attached are some pictures of my scans, Lori, myself, and Charmin (another cholangio patient who just had her tumors removed and her cells are growing, she should get her cells in about 10 weeks) and Lori and I consuming our oral contrast before CT scans! Thanks so much for all your support, all my hugs and prayers to everyone!!
Love,
Melinda
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