Re: Survival...Please tell us your latest milestone

Congratulations Genevieve.  What  a stupendous outcome.  5 Years is truly something to celebrate.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Survival...Please tell us your latest milestone

Randi...always thrilled to see you on this site.  Have you considered sharing your story in the "survivorship" thread?
Hugs to you,
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: Survival...Please tell us your latest milestone

Hi, Randi Girl,  miss you and hope you are doing well. Nice to see your smiling face!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Survival...Please tell us your latest milestone

December 1st marked seven years from the day of my diagnosis. On one hand, it feels like forever ago, and on the other hand it feels like yesterday. Liver resection, three VATS, right lung thoracotomy, chemo regimens, clinical trial treatments, and now Pembrolizumab. It is crazy that this is the first time I can actually see a possibility of being NED. .......so much to be thankful for! !
Melinda

Re: Survival...Please tell us your latest milestone

CONGRATULATIONS! YEA! WONDEFUL! STUPENDOUS! Hallelujah! So exciting to read this, Melinda. You are truly our Poster Girl. So happy for you!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Survival...Please tell us your latest milestone

Here is a "What's Working" update. My wife, Barb, was found to have cancer in late July 2016. Through the process of elimination or exclusion, the various docs concluded it was ICC.
As I have mentioned earlier, she was offered to join a phase II clinical trial at Moffitt Cancer Center in Tampa Bay with Dr Richard Kim and team. We started early Sept. Barb's tumors were 'too numerous to count' in the liver and lung primarily.  They are measuring a couple of the larger ones to track progress - and here is that progress...

Date                                          8/23/16                        11/15/16                    1/17/17

Confluent central mass          7.5 x 12.6                      6.2 x 9.9                   5.9 x 8.4

Right hepatic lobe mass         4.9 x 6.4                        4.4 x 4.9                   3.0 x 4.2

The trial drug is Copanlisib (BAY 80-6946) and the chemo drugs are Cisplatin and Gemcitabine. The Protocol number for this trial is MCC # 18435   
More at   https://clinicaltrials.gov/ct2/show/NCT … amp;rank=1       

Barb also has added supplements such as Kyogreen drink mix and several other things AND is doing one or two coffee enemas every day. This is not part of the trial protocol as you might imagine but we believe it is part of the good results she is getting. Would love to hear any feedback, thoughts, comments. God bless you!  Brian

Re: Survival...Please tell us your latest milestone

Dear Brian, this looks like a very good report to me as all counts are on a downward move. YEA! What ever works we will take and you are both definitely doing the right stuff to kick CC to the curb! I would say the Brian and Barb team are a dynamo duo and keep on with the good work. Also many thanks for the informative post that could be of great help to others.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Survival...Please tell us your latest milestone

Brian.....great response to treatment.  I am thrilled to see the downward trend and cross my fingers for continued shrinkage. 
How is Barb feeling?  Is she experiencing any side affects?
Have you mentioned to Dr. Kim that Barb is adding her own curative action to the treatment?

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: Survival...Please tell us your latest milestone

January 26 marks my eleventh anniversary of my liver resection surgery, which is still 'working' I guess. My case has required no other treatment at all.  I hope things continue as they have.Here is a picture of my grandaughters and my dog Boomer being wisked along on lake Erie by the old Hercules motor from which I took my screen name. It is still running well, don't you think?  Here's to a happy eleventh, Pat
https://s28.postimg.org/6l0hxg0jt/100_0207.jpg

Senescence is a beautiful thing....

Re: Survival...Please tell us your latest milestone

Hi Pat. Beautiful Granddaughters and Boomer and Hercules look fabulous too. Glad you explained the Hercules. All these years I thought you were a weight lifter! LOL

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Survival...Please tell us your latest milestone

I have explained the name before, it has been a while, this is a 1941 chris craft deluxe runabout with it's original engine, a hercules flathead  used by chris craft for many years. Most wooden boats don't last this long, and even fewer have their original engine. This old girl has not only original wood throughout, but also it's original engine which is still running strong. I can only hope to be as timeless as this old engine and craft, and keep doing what I have always done, and look good doing it...Ha...just had to throw that in, for a long time yet. Hope everyone has a remarkable January 26th, Pat

Senescence is a beautiful thing....

Re: Survival...Please tell us your latest milestone

Yesterday began my 7th year fighting. On Feb 9, 2011 I had an ultrasound. On Feb. 10 I had a cat scan. Then the rollercoaster began.
Unresectable, but have had some lengthy pretty good outcomes with different drugs.

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: Survival...Please tell us your latest milestone

Kris.. ..I am thrilled beyond words and yet can't believe seven years have gone by.  Now, here is a lady never taking off her boxing gloves. 

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: Survival...Please tell us your latest milestone

KrisOOj,
Would like to know more of your story. My husband not resectable . On chemo, had y90....you encourage me. If possible can you share more? Thanks so much

Re: Survival...Please tell us your latest milestone

brianbarbaradoyle could you please explain your treatment process in details?
which drugs are used ?

“What does not kill us makes us stronger.” – Friedrich Nietzsche

Re: Survival...Please tell us your latest milestone

I am so glad to inform you that I was selected for the Phase 2 clinical trial of Incyte Corp experimental drug INCB054828 for CC with the FGFR gene alteration. For details, see:
https://clinicaltrials.gov/ct2/show/NCT02924376

I have taken the drug (just a pill) for the last 5 weeks. I have experienced absolutely NO side effects (which is such a contrast from my experience with the chemo I have had a few months ago with horrible side effects and weight loss). Instead I was pleasantly surprised to feel significantly positive effects of increased appetite, increased energy and the mouth taste  (that had become bad after the chemos) returned to normal.  Better appetite and better taste has resulted in weight gain (I have been a very slim guy all my life, then I started losing weight and appetite a couple of years ago, then suffered drastic loss of weight after taking chemo). so weight gain was such a welcome surprise.

After 5 weeks of treatment I went for a CT scan. It was compared to the scan at the start of the study. I was thrilled to find that my tumor had shrunk (from 7cm x 6,7 cm) to 5.9 cm x 5.2 cm.
That's a huge reduction in 5 weeks, ...with NO side effects.
I feel so positive about this drug that I hope it will fully cure my disease at this rate.
Actually, I felt from day 1 that this drug was restoring my GI tract to the normal state.

I am writing to let other CC patients know of this powerful drug, how successful result I have experienced of this  experimental drug that has started in phase 2 in January this year (2017) and I participated in the trial starting in April.   Any one with CC with FGFR gene alteration - please find the nearest trial site, it can be your life saver. Its a multi-site trial at 36 locations across USA.  still recruiting new patients.

217 (edited by positivity Mon, 29 May 2017 14:16:08)

Re: Survival...Please tell us your latest milestone

Thank you so much for sharing.  It takes courage, and hopefully more people and caretakers get on this site.

After experiencing this difficult time in my life, I consider every month that passes as a success.  I had to find the strength to help my mom and others in the process.  Now 6 months later, I am so glad to be part of this community and I also took the step to  be courageous during a challenging time.

I am extremely grateful to celebrate 6 months since diagnosis, which in reality after learning about this condition and backtracking into medical records, my mom has actually had it for 3 years.  This is with the possibility of it getting worse or becoming more symptomatic over time.  We made difficult decisions, and I had to accept my decision with whatever outcome and keeping positive.  You can imagine how hard that would be.  I say "we" as when you are an advocate or close family member you put yourself through the experience as if it is "you". 

Life is unpredictable, but I will always know in my heart and mind, that I stepped up and helped as much as possible and moved forward wisely with love and kindness.

Re: Survival...Please tell us your latest milestone

Hello,

Just writing that it is over 5.5 years since my husband's first resection for multi-focal ICC.
He's had two further resections for recurrences, two lots of adjuvant chemo, and a microwave ablation. He has three-monthly scans, alternating between CT and MRI, and so far has been clear since the microwave ablation in November 2015.

Best wishes,

Genevieve

Re: Survival...Please tell us your latest milestone

Genevieve,

Thank you for sharing this wonderful news. Your husband has been through a lot - he sounds like a "real trooper".  I hope that he enjoys continued good health!!

Debbie

Re: Survival...Please tell us your latest milestone

Dear Genevieve,

That is awesome.  Thanks for sharing.  This is the sort of thing we like to hear more of.  It gives hope to others who are struggling with this disease.  I too hope that  this continues.  My best to both of you.  Take care.

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: Survival...Please tell us your latest milestone

Hi Genevieve,

Thanks so much for sharing this great news with us all, superb!! As Darla says, it gives great hope to so many people not only here on the site but the many many "lurkers" that read the site but don't join or post. So thanks loads for sharing this with everyone!

My best to you and your husband,

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: Survival...Please tell us your latest milestone

Genevieve,

That is wonderful news! I am so happy for you both! So hopeful to so many! Thank you!
Melinda