Re: Update on NIH Trial

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

Re: Update on NIH Trial

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

Re: Update on NIH Trial

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

Re: Update on NIH Trial

A bit more information regarding the clinical trial:
http://www.nih.gov/researchmatters/may2 … cancer.htm

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

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

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

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

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!! smile

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

Re: Update on NIH Trial

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!

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

Fantastic! xxoo

Re: Update on NIH Trial

Dear Melinda,

I have watched the webinar last week in which your doctors and yourself explained in detail what the Tcell trial is all about. What a wonderful breakthrough and hopeful results! Thank you very much for sharing.

Unfortunately the trial is not (yet) available in Europe (the Netherlands). But case studies like this do give hope and inspiration. My situation is similar to yours and I am desperately seeking for new options. I will definitely discuss this (future) option here overseas.

I wish you all the best!

With love,
from Holland

Re: Update on NIH Trial

HI Melinda,

Slow and steady is good news.  Glad to hear it and thanks for sharing your good news with everyone here. 

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on NIH Trial

Hi Melinda,

What brilliant news, thanks for sharing that!!! Remember what they say about slow and steady, slow and steady wins the race!! So yep, I like that! And telling your research scientist to hurry up, I like that too!!

Looking forward to hearing more about your shrinkage and loads of positive thoughts are heading your way.

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

HI wmil,

Welcome to the site. Sorry that you had to find us here but glad that you have joined in as you are so in the best place for support and help and you will get loads of each from all of us. Please feel free to tell us more if you want about what is happening with you, we are all here for you. But if you don't want to share more with us then that is fine as well!

You are so right that stories like Melinda's do give  everyone hope and I so hope that they will start a trial like this in Europe. I am from Scotland by the way, just a hop over the North Sea from you. Like your name as well! I so hope that you will find a treatment that works for you, what are/have you had treatment wise?

If we can help then please just ask and we will do our best. And if you want to introduce your self then please feel free to do so on the Introductions part of the site and I know that you will get many more responses over there. Keep coming back and I look forward to hearing from you more. Moontje is from Holland too and I am sure that she will reply to you as well.

My best wishes to 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

Melinda, So glad to hear that your tumors are stable and shrinking!  I joined the webinar last week and found it very informative-- your personal experience added so much to Dr. Tran's excellent overview.  Thanks for sharing your ongoing story. Best to you,

Re: Update on NIH Trial

Thanks Lainy! I love your YIPEEs!! By the way, I will be in your neck of the woods November 6-10th! Hoping for some of your warm weather while we are there!

Thank you Matt, Darla, Gavin and Judy....I do so appreciate all your support! Slow and Steady does win the race!!

Dear WMIL from Holland ...I am so glad you could view the webinar. I hope that they are able to perfect this treatment and then have it available world wide!! I will definitely keep my eyes and ears open for any future news. I also welcome you to this site and would love to hear more of your story as well! Thank you so much for your support and please know that we are all here to support you as well! I will keep you in my thoughts and prayers!

Love and hugs to you all,
Melinda

Re: Update on NIH Trial

Melinda,....I will openly and unashamedly admit that when I read your Oct 2014 post, tears ran down my cheeks.  I am soooooo happy for you to receive the news of slow shrinkage and stable.  I have to also admit that I'd be right there with your husband, grilling them for more info...more answers.  That's just the way some of us are wired, I guess.

Awesome news......so good to hear those positive checkups.

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.