Praying for you and your family!  Hoping for good results, please keep us posted.
Melinda

Dear SGM,

I did Gem/Cis combo and also ended up with severe neuropathy in my feet and hands. I stopped the Cisplatnin and did the Gemcitabine alone and unfortunately my tumors grew. I know that we all respond differently but wanted to share my experience with you.
Melinda

3

(58 replies, posted in Clinical Trials)

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

4

(6 replies, posted in General Discussion)

Katia,

This sounds very interesting, looking forward to hearing of you dad's progress and how this all works. Way to advocate for you father! I love hearing these kind of stories! Please keep us updated and sending good thoughts and prayers!

Melinda

Catherine,

Wonderful news!!! So happy for you and your mom! Send her my best, and tell her to keep on keeping on!!

Melinda

Kathy,

What a story you have to tell! I am so happy you were able to have a resection and get rid of that 20lb tumor!! Sending good thoughts and prayers for your chemo tolerance to be a walk in the park. Hang in there and keep us updated on your progress.

Melinda

Oh how I love all these connections being made! You go girls!

8

(6 replies, posted in General Discussion)

Dear Alex,

I am sorry for the loss of your father. Sending prayers for peace, strength and comfort for you and your family.....all my best to you.
Melinda

9

(43 replies, posted in General Discussion)

Dear Chuck's daughter,

Sending prayers to Duke....wrapped in hugs, blessings and much gratitude for all he has given to the great people of this site. We love you Duke!
Melinda

Sarah,

Great news on your FIL! Surgery is what we like to hear. I just wanted to say how much I admire all the research and the approach you took to his care. Way to be proactive and make things happen. Please keep us updated on his progress! Hugs and prayers to you and your family.
Melinda

11

(58 replies, posted in Clinical Trials)

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

12

(5 replies, posted in Introductions!)

Dear Papawadsicle,

Welcome, and congratulations on shrinkage of tumors!!! It sounds like you have done your homework looking into targeted therapies. Please keep us informed as to what therapy you will be using and for what it will target. Hoping there will be surgery in your near future! Take care and please keep in touch.....hugs and prayers.
Melinda

Dear Susan,

I would also like to welcome you here. Congratulations on 40% reduction! That is so inspiring! Please keep us posted of your results and details of your trial. I too have been in a trial for the past 3 years and always get so excited to hear of others doing well in other trials, because that just means more hope for the future of this disease!

I also hope you get a chance to meet up with the others in your area. There is such strength in numbers, and when you meet face to face it is such a strong connection that I feel it just adds so much power to your fight!

Keep in touch and take care.....hugs and prayers coming your way.
Melinda

14

(226 replies, posted in Introductions!)

Matt,

Hang in there, it is hard, I know, but you got this!! Take your nap, eat your protein and keep winning the war on this cc.....we are all here for you, cheering you on! Hugs, prayers and tons of good thoughts coming your way!
Melinda

Diane,

Welcome to the boards, we are so glad you are here. Thank you for posting you information and thank you for your participation in a clinical trial. Looking forward to seeing your progress! Praying for success, and little side effects for you! Positive thoughts, hugs and prayers headed your way!
Melinda

16

(58 replies, posted in Clinical Trials)

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/trea … d=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                     







http://s21.postimg.org/y9hh7utfn/20150622_155353.jpg

http://s4.postimg.org/vgm43m995/20150617_140001_1.jpg

http://s3.postimg.org/hdnuh4g5b/20150617_154739.jpg

17

(5 replies, posted in Blogs)

So very awesome! Thanks for sharing your story!
Melinda

Anne,

Awesome news!! 25% shrinkage is huge!! I am so happy for you both. Please continue to keep us informed as to his progress, so hoping to see more trials available for others. Thank Mike for his participation in this trial. Looking forward to more good news!
Melinda

19

(12 replies, posted in Good News / What's Working)

Awesome news Randi!! Keep up the good work and I agree with Kris .....you are a HERO!
Melinda

Cathy,
I am so happy for you!!!! I love your beautiful attitude and the gracious way you share your story! Thank you for being a beacon of hope to others!
Melinda

Awesome, wonderful, amazing news! Happy One Year!!! Live life and enjoy!
Melinda

22

(6 replies, posted in Members' Cafe)

I absolutely love it Kris! What a special way to pay tribute, it is beautiful!

Hi Mary,

I am sorry to hear of your husband's struggle with drains, stents, infections, and mostly this diagnosis. I am glad you found this site and I hope you will continue to share your experiences as well as gather as much information as you need from here. Please know that I am sending good thoughts and prayers your way for both you and your husband. Take care.
Melinda

24

(2 replies, posted in Introductions!)

Hi Christine,
Sorry, I am slow on my welcome, but I really do want to extend a big welcome to you. I know that you will find lots of good information and great support from this site. Please keep us updated as to how your second opinion turned out. Sending lots of good thoughts and prayers your way.
Melinda

Thanks Gavin! I have been attending as many immunology sessions as possible! I heard at one session they will be opening more cohorts for the PD1 study in the next couple of months which will include cc patients.