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."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  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