October 15, 2014 at 7:46 pm #84658gavinModerator
Thanks for that Colleen. Great news about your mum and my fingers are crossed for further good news for her as well! Please keep us updated on everything!
My best to you and your mum,
GavinOctober 15, 2014 at 6:23 pm #84657mbachiniModerator
Please give your dear mother a hug for me! I am so happy for you and your family! This is a HUGE success! You know my feeling on immunotherapy…..now if we can just get the brilliant minds of the world to get it to work for everyone….all would be great!
Also please thank your mother for her participation in this trial and bringing so much future hope to others!!
All my best, hugs and prayers,
Melinda B.October 15, 2014 at 5:20 am #84656
Dear Rose, Fantastic and welcoming news. I believe you are our first CC patient on this miracle treatment. It does seem if we can hang in for a little time new treatments are coming forward and for us you are now our Pembrolizamab/Keytruda Heroine. Someone always has to be the pioneer and I am thrilled it is working so well for you. This is so exciting and looking forward to more good news! HURRAH for you, Rose. I love your name as my Sister’s middle name is Rose.October 15, 2014 at 5:11 am #84655
ctwong…..thank you for sharing this incredible, wonderful news with us. I am overjoyed to read this post.
Rose…. Not only is the treatment aggressively attacking the tumors, but the side effects are minimal as well. Wonderful, wonderful news.
This is the first feedback we are receiving on this drug and I am wondering whether you could share a bit more with us? What in particular are the side effects and how do you minimize these effects?
The benefits of QiGong and Tai Chi are undisputable, but I was not aware of the difficulties performing these exercises. Thank you for the enlightenment. Perhaps, some day you can share a bit more with us. In the meantime, I wish for continued success with your treatments and please stay in touch.
MarionOctober 15, 2014 at 5:01 am #84654
Great article on http://www.sfgate.com regarding immunotherapy.
Sponsored by: UCSF Medical Center
Titled: Killing cancer through the immune system
http://www.sfgate.com/sponsoredarticles/adv/?prx_t=yZsBA69MBApB8LAOctober 15, 2014 at 4:45 am #84653
Hi CC community,
Wanted to provide an update on my Mom as of 10/14/14. She’s still doing VERY well and continues to be an inspiration to all of us. Thank you again for all your kind notes and well wishes. Together we will beat this!
#findacure #hope #believe #miracles
Note from Mom:
I am very happy to report we are seeing continued improvement with my clinical study drug, Pembrolizamab. In fact, the FDA recently approved this drug for the treatment of melanoma under the market name “Keytruda”. World-wide clinical studies will resume on various tumor types to determine whether this immunotherapy drug can be effective in treating other kinds of cancer.
My participation in this clinical trial began in June, 2014 after an ineffective three months regime on Gemzar and Cisplatin. I will have my 10th cycle treatment this Thursday. A PET/CT scan was done last week with very promising results. Several larger tumors have disappeared completely and all the other spots are continuing to shrink. The best news is there is still no evidence of any new tumors. The doctors are thrilled, and our hope is that this drug will continue to eradicate all the tumors in my body. Our goal is to be cancer-free. Speaking from personal experience, it is an incredible drug with little or no side effects. I feel fine. It would be an amazing breakthrough if all cancers could be treated with immunotherapy instead of with toxic chemotherapy/radiation which causes so many harmful side effects.
I look forward to my QiGong and Tai Chi classes. These meditative movements are designed to increase flexibility/ balance and to help find inner peace/calm. It’s actually harder than it looks. I can’t do any of the movements without following the instructor step by step. Actually, I’m kind of lousy at it. The important thing is I enjoy it and truly believe it is beneficial in my fight with cancer.
So, the news is still hopeful for a good outcome. I will be forever thanking you for all your prayers and good wishes.
RoseSeptember 17, 2014 at 5:52 am #84652reacherMember
Has anyone heard of VERO?
It is a 6 D radiation machine.
Currently there are 20 in the world.
There are two in Belgium, one in Milan and none in the US.
Vancouver BC Canada is raising money to bring VERO to the city.
It costs over $6 million.
It is incredibly precise to radiate tumours considered unresectable.
Want to learn more about VERO!September 16, 2014 at 9:13 pm #84651
Here’s how the immunotherapy drug (Keytruda) works.
“Cancer researchers have been almost giddy in the last couple of years about the potential of drugs like Keytruda, which seem to solve a century-old mystery of how cancerous cells manage to evade the body’s immune system.
The answer is that tumors activate brakes on the immune system, preventing it from attacking them. Keytruda is the first drug approved that inhibits the action of one of those brakes, a protein known as PD-1, or programmed death receptor 1.
This general approach might work for many types of cancer, though so far the main successes in clinical trials have come against the deadly skin cancer melanoma, lung cancer and kidney cancer.”September 16, 2014 at 7:55 pm #84644
Oh, thanks Marion…….like some drugs I have seen for Crones that may work for Colitis! I got it. See, you can teach an old dog new tricks. Thank goodness then for the Doctors who are willing to try and wonderful for the patients that it works well on.September 16, 2014 at 7:39 pm #84645
Lainy…..other than Gem/Cis (ABC study) virtually all of the drugs used for Cholangiocarcinoma are based on “off label” drug usage. In fact, we don’t have a clinically validated “second line” of treatment regimen for CC patients.
Physicians decide the drug best applied with their patients. They base the decision on the knowledge obtained in patient care and the studies (old and new) showing positive indication of response to various treatment.
A new drug approved for another disease but showing good indications for CCA as well can then be applied to our patients. This is the case with the above mentioned molecular inhibitor.
MarionSeptember 16, 2014 at 5:21 am #84650
Thanks much, CTWong.September 16, 2014 at 4:44 am #84649
Dear CTWong 81, welcome to the best place to be for CC support. I am a little confused as I read some articles on your fabulous drug and no where does it say it is for CC. In fact it can cause side effects that are much like CC symptoms. I am so happy for you if it is working for your wife but find it strange that the ONCS would use it for CC. I am wondering if any of our members have heard of this drug for Melanoma to be used for CC.September 16, 2014 at 4:05 am #84648
Hi Marion! and Julie,
I posted my note under the link that you provided.
As for my mom, she has absolutely NO side effects. It’s amazing! She feels fine, has an appetite, and goes about her normal everyday life. She has treatment at UCSF every other week. It’s a 30 minute transfusion, so it’s extremely quick and painless. This is the wave of the future for cancer treatments. Rather than flooding your body with poisons, it boosts your own immune system and your healthy cells attack the cancer cells. It’s incredible. We just hope and pray that it continues to shrink her tumors.
We are so thankful and we want to spread the word. Hoping other CC patients are able to get this drug, as it has been approved by the FDA.September 16, 2014 at 3:27 am #84647iowagirlMember
CTWong81, Thank you for posting the study information and your mom’s success in the study. We are all cheered to hear results like this and give everyone hope for the future.
Julie T.September 16, 2014 at 1:38 am #84646
ctwong81…..Congratulations and thanks for sharing this fantastic news with us. Is your Mom experiencing any side effects? Perhaps you could be so kind and repeat your posting in the Clinical trials section:
We will ask Rick to add a sticky so that all information is contained to one thread only. This will allow for an easier overview of your postings.
Thanks a million.
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