Re: Update on NIH Trial

YIPPEE, Melinda, YIPPEE! Great news. You are a vision of HOPE and MIRACLES!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on NIH Trial

Hi 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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on NIH Trial

Dr. Rosenberg was awarded for his many years of public service within the NIH:
http://www.washingtonpost.com/lifestyle … story.html

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on NIH Trial

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.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: Update on NIH Trial

Thanks for that Marion!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on NIH Trial

So 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

Re: Update on NIH Trial

Melinda, 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,
Steven

Re: Update on NIH Trial

Dear 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,
Melinda

Re: Update on NIH Trial

Melinda, 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,
Steven

Re: Update on NIH Trial

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,
Melinda

Re: Update on NIH Trial

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.

Re: Update on NIH Trial

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".

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on NIH Trial

Superb news Melinda, love it!!!

Huge celebratory hug for you!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on NIH Trial

Wow Melinda......that's just the best news for you and for us to read.  Thank you for doing what you're doing for yourself, but also for all the others of us out here.

Julie

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: Update on NIH Trial

Wanted to share some more on the research of my clinical trial. A paper was again published in Science journal yesterday, but here is a write up about it from National Cancer Institute.
http://1.usa.gov/1Sc2xRw

Re: Update on NIH Trial

The NCI team is already moving ahead with plans for an early phase clinical trial that follows on these findings, Dr. Rosenberg said. 
http://www.cancer.gov/news-events/cance … sf42099966

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on NIH Trial

Dear CC Family,

I just returned from NIH, where I had a PET scan, CT scans and MRI, along with blood work. It has been 27 months since my treatment. I have had NO other treatments in that time frame. My tumors have shrunk incredibly in that time.

While I was hoping that this month's scans would show more shrinkage or proof of just scar tissue remaining, that was not the case. My results by criteria of the trial were STABLE, which is GREAT! Unfortunately, the PET scan showed increased uptake in a handful of tumors in my lungs, except one, which showed no uptake at all! By eye they also felt that a few lung tumors were a bit plumper in my lungs. These results leave us wondering if this monster could be on the rise again. I will return in 3 months and depending on scans then, we will form a plan of action. It is also important for me to note that the spots on my liver had no uptake of glucose as well on the PET, which is also GREAT.

So all in all, these are great results. I can't deny that my heart sank a bit at first but I know that what has been accomplished in 27 months is amazing , wonderful and miraculous!!!

They have added to the treatment the drug pembrolizumab. They feel that this could increase the response to the mutation reactive t-cells. So if worse comes to worse, I will most likely do the treatment again with this addition, but for now it is a wait and see.

I still hold so much hope for the future treatments coming our way. Hang in there, good things happening.

All my best,
Melinda

Re: Update on NIH Trial

Melinda,

Thanks so much for the update. Your long-lasting response to the treatment 27 months ago is still amazing.

If you've got a compatible mutation, why you wouldn't start the pembrolizumab/Keytruda immediately? 

-Matt

Re: Update on NIH Trial

Matt,

Technically by RECIST criteria measurement, criteria of the trial, I have not yet shown progression of disease.  In fact, with the way the measurements are....there was no change.

My husband asked that question to one of the team members, why not just start the pembrolizumab right now,  and he said he thought that would be a good idea, but I don't think it was brought up again with the rest of the team. I will definitely shoot off an email in the morning to find out why.

Melinda

Re: Update on NIH Trial

Let me know if you do start it - I'd love to know someone else taking it and would be happy to answer questions or compare notes. wink

Re: Update on NIH Trial

Melinda-  wishing you the best-  you are our shining star.  Even if it wasn't for CC, anyone who can raise such a large and wonderful family, deserves an award. With clinicals, it is frustrating to see that most make you progress on treatments which on average can only extend life 3 months and also wear the  body down.  I hope they allow you to get on new treatment ASAP.

Matt-  hope you're doing well.

Take care,
Catherine