Topic: NIH update/articles

Hello everyone,
I am so sorry it has taken me so long to respond. I have NO excuses, time just gets away from me! It doesn't mean that you all are not continuously in my thoughts and prayers because YOU ARE!!

I hope you have all had the opportunity to read the amazing articles telling the  story and describing this trial....just google my name and the articles should come up...because I am too technology challenged to know how to post a link! Sorry!

The past few months have been incredible! I went back to NIH in February and in April, both times there have been shrinkage, in fact I have had more shrinkage in the past 6 months then I did in the whole year and half with the first treatment!

At my last visit the docs told me about the article being published in Science, but I never imagined the other articles happening. I am so happy to be getting this news out there and this story spread. I pray that this research opens the doors for many others to benefit!!

I pray for the attention to cholangiocarcinoma to bring more opportunities as well.....hoping beyond belief that cc patients get a bigger voice. Life has been good post treatment, everyday is a gift as we all know!

Love to all,
Melinda

Re: NIH update/articles

Melinda,

I have read the articles.  It is an amazing story and you are an incredible woman.   Your story brings attention to this rare form of cancer and to the foundation.  Thank you for that.  Hoping for even more improvement in finding and eventually eliminating CC in the future.

Good to hear you are doing well and yes, every day is a gift.  smile

Love & 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: NIH update/articles

Melinda...we couldn't be happier to witness the attention focused on you and the success with your treatments. 
Hugs,
Marion

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: NIH update/articles

Hi Melinda,

Couldn't agree more with what Darla and Marion say and I love reading about your story! And just so you know, currently your story takes up 14 pages on google!

https://www.google.co.uk/search?q=chola … ;tbs=qdr:d

I read on FB as well today of a few people in the UK who read your story and are planning on speaking with their own onc's to see if anything else can be done for them. Thanks Melinda!

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: NIH update/articles

Wow that is great news Gavin! ...thank you to everyone! I just want to get this out there in as many ways possible!
Melinda

Re: NIH update/articles

Oh, and you can bet my onc will hear about this on the 19th!
This is so exciting! I am so happy for you!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: NIH update/articles

I'm seeing your story come up on news sites around the world Melinda, tons and tons of them are picking it up and on a load of medical sites as well! It is certainly getting out there like you want!!

Hope your onc has some good news for you as well Kris when you speak about this on the 19th, fingers crossed for you!

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: NIH update/articles

Up to 26 pages on google now Melinda!

https://www.google.co.uk/search?q=chola … ;tbs=qdr:w

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: NIH update/articles

And, importantly, Melinda's legislative fight:
http://www.bozemandailychronicle.com/ne … 03286.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: NIH update/articles

Go Melinda!! You rock!

Has anyone posted the link to the NY Times article on the cc foundation Facebook page?

What about posting it to all physicians on MD portal?

It's encouraging that NBC, Wall Street Journal and others have been calling you for interviews, Melinda! This definitely is a bright spot ink the search for a cure or at least control of cholangiocarcinoma.

Willow

Willow

Re: NIH update/articles

I have reached out to Melinda by personal e-mail and am awaiting her response.  By googling Melinda, our website will appear as well however; I am hoping that she is able to provide a bit more of a personal message to our global CCF community.  Much already has been posted here, but we need her permission to elaborate on our blog. Given that Melinda has reached "stardom" with her incredible response to treatment, we must give her a break and be patient with her response to us.
Hugs,
Marion

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: NIH update/articles

Hi all....I responded by email to you Marion....gone all day to volleyball tournaments, so I just got it out.  I would be happy to do anything I can to spread this research news!! Please just tell me what I can do and I will do it! I am so happy to get the message out there!! I can't believe how far it has spread around the world!!!! So Happy! smile I want to keep this movement going!
Hugs to all...Melinda

Re: NIH update/articles

Thanks for the legislative link Marion and yes Willow, the NY Times and NBC pieces are both on the FB page as well.

Hugs to all,

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: NIH update/articles

Has anyone got the link to the actual trial? There is a question on the FB page from someone who wants to see if this would be suitable for their mum.

Thanks,

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: NIH update/articles

Gavin,
Is this what you want?

http://www.clinicaltrials.gov/ct2/show/NCT01174121

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: NIH update/articles

Brilliant! Thanks for that Kris, you're a star!!! smile

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: NIH update/articles

You've put that trial link on the FB page, thanks Kris!!

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: NIH update/articles

(Pats myself on back) I just followed the thread and found it. smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: NIH update/articles

Pats you on back as well Kris, thanks! smile

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: NIH update/articles

Found this piece to be a good write up and description as well -

NIH Study Demonstrates that a New Cancer Immunotherapy Method could be Effective against a wide range of Cancers.

http://pharmaceuticalintelligence.com/2 … f-cancers/

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: NIH update/articles

UK media coverage. The Daily Mail is one of the large UK newspapers.

'A blueprint for fighting cancer': Mother is injected with her OWN disease-fighting cells grown in the lab

http://www.dailymail.co.uk/health/artic … n-lab.html

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: NIH update/articles

Thanks Gavin! I have not seen these articles till now....so happy they are getting out there!...Melinda

Re: NIH update/articles

You're welcome Melinda, happy to read them too and agree that it is great that they are getting out there as well!

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: NIH update/articles

From AMMF in the UK -

http://www.ammf.org.uk/2014/05/16/immun … wer-to-cc/

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: NIH update/articles

Melinda,

Your story was picked up by Cancer Research UK in their weekly news digest round up of cancer news.

"Immunotherapy also featured in this article from the Mail Online covering a different experimental approach of utilising a patient’s own immune cells to target tumours – an exciting approach, but worth bearing in mind this was just one patient."

http://scienceblog.cancerresearchuk.org … -and-more/

For those who don't know, CRUK are massive in the UK and fund a lot of research into all types of cancer. They run the ABC trials in the UK that no doubt many of you will have heard about.

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.