February 28, 2015 at 6:14 am #84671ctwong81Participant
Just wanted to provide an update on my mom. She’s still doing very well. Her last PET CT (which was last week) showed NO new growths and the existing tumors are continuing to shrink! As you can imagine, our family is ecstatic and extremely thankful for the clinical trial at UCSF.
At my mom’s last appointment, Dr. Munster (Head of the Clinical Cholangio Dept. at UCSF) spoke to her and my dad about her progress. She was very positive about my mom’s progression and encouraged her to stay in the trial. Dr. Munster mentioned that that mom is the only one of twenty patients (only 4 patients in the UCSF system) that is undergoing phase 1 with Merck (Keytruda) and that she may be the only one being treated for Cholangio with PD1 in the U.S. with better than 30% results. This was all great news for us!
I will keep you all up-to-date on my mom’s health. Please stay strong and never give up hope.
Colleen (daughter of Rose)February 22, 2015 at 5:07 am #84670
Lucia….it might be best for your Mom’s physician to contact Merck directly. This is a clinical trial for “solid” tumors. Perhaps no Italian center(s) has opened a cohort for Cholangiocarcinoma patients. Your physician should be able to get the answer. Good luck and please keep us posted.
BTW: Your English is just fineFebruary 21, 2015 at 9:54 pm #84669iowagirlMember
I can’t offer much for info on your question about trials, but I just wanted to also welcome you here to the CC Foundation boards. I’m sure others will be along to post comments or help. Not everyone is always on the boards all the time, and especially it seems as weekends near.
Julie T.February 21, 2015 at 2:45 pm #84668lainyParticipant
Ciao, Lucia and welcome to the best place to be for CC support. I am sorry to read about your Mother and while I cannot help with chemo or trials I would like to say that we have a Search engine at the top of the page where you can type in any word and get past posts that may help. I would also like to send you the following sites which may be of some help:
Free complimentary Book or e-mail download:
Biliary drainage – stent information card
Register for a CURE
The International Cholangiocarcinoma Registry
Please keep us updated on your Mother as we are all family and really care.February 21, 2015 at 12:04 pm #84663middlesister1Moderator
A warm welcome to the board. I am very sorry that you are going through this, but it seems like you are doing everything possible to help your mother. My mother is also inoperable and had Gem/Cis as well.
With the Keytruda (Merck drug) trial, it may be that they are only accepting patients with other types of cancer at this time. There was another discussion on this under the Clinical Trial section.
Some of the clinical trials are only open to patients with particular genetic mutations, so testing may be something else to consider. Also, if you’ve read many of the postings on the board, many have benefited by getting second or even third opinions.
If you could copy your post and put it under the Introduction section,There may be others from Europe who would see it and be able to offer more specific help.
Best wishes and please let us know how your mother is doing,
CatherineFebruary 20, 2015 at 4:44 pm #84667luciarParticipant
My name is Lucia and I write to you from Italy (so sorry for my english).
My mother is affected by adenocarcinoma in first hypothesis of Bilo-pancreatic origin (biopsy result) and today has begun here first cycle of GemCIS (she is not operable)
After reading this discussion I contacted Merk’s reference persons in Italy and in UK to received some information on MK 3475 clinical trial in Europe (https://clinicaltrials.gov/ct2/show/study/NCT02054806?show_locs=Y#locn) .
They told me there is no Clinical Trials recruiting in US or in europe but It seems to me from this discussion and other I founded in cholang Foundation forum that this is not true.
I’m a little confused. Could you provide me some indication?
Thanks a lot
LuciaFebruary 10, 2015 at 5:04 pm #84666cleversonParticipant
Thank you for your help and attention. I moved the post to Introductions.
We are now looking for new drugs or clinical trials for my sister.
The time is not on our side.
CléversonFebruary 10, 2015 at 4:23 pm #84665lainyParticipant
Dear Cleverson, welcome to the best place to be for CC Support. I am so very sorry about your Sister. The only thing I can tell you is that very often a 2nd and 3rd opinion can be very helpful. Make sure that her Doctors have treated other CC patients. If you could kindly move this post to the Introductions on the Home page I am sure you will get more noticed and I know others will come along with their suggestions. Wishing your Sister the very best and again another set of eyes may see things differently and for the better. Be strong!February 10, 2015 at 3:25 pm #84664cleversonParticipant
My name is Cleverson Silva and my sister was diagnosed with cholangiocarcinoma 3 years ago. She went through 2 surgeries and many combinations of chemotherapy. She is only 33 years old now and she is not fine, with metastasis to lungs and rib.
We are from Brazil, do you know if there is any clinical study in Brazil? Do you know if we are allowed to enroll in this keytruda research?
CléversonDecember 18, 2014 at 10:37 pm #84643
Kate…looks like the study is closed to enrollment, but take a look:
and this: http://www.cancerresearchuk.org/science/research/who-and-what-we-fund/browse-by-location/southampton/university-of-southampton/grants/christian-ottensmeier-15951-improving-immunotherapy-understanding-and
MarionDecember 18, 2014 at 11:58 am #84642gros2014Member
It’s great reading about these new treatments/developments.
I am based in the UK and wonder – does anyone know or have experience of immunotheraphy being used in the UK??
KateNovember 22, 2014 at 7:58 pm #84662angelmarParticipant
This has been been very helpful and gives me a little piece of hope. I shall be in touch with UK contact on Monday. Wonder if it works in the same way that Mistletoe Therapy Works?
Meanwhile, waiting for the chemo dates to start the Gemcitabine/Cisplatin therapy and wondering how fast the golf bal is growing. trying to Bless it and Release it.
xOctober 29, 2014 at 5:48 pm #84661
soulman….welcome to our group. So sorry to hear of your Mom’s diagnoses. As far as I know, this trial has been closed to biliary patients. They only allow so many slots for our cancer type and I believe it filled up rather quickly.
This link lists the centers included. Perhaps you want to call the numbers listed:
MarionOctober 29, 2014 at 4:28 pm #84660soulman14Member
Want to hear more about the clinical trial. My mother, 78, was recently diagnosed. Although they say it is too big to operate on and is around a liver artery so they cannot do surgery on it. Looking at new options now and clinical trials.
We live in Atlanta, and wonder how you found out about that trial. Is it something that has to be done in California, are they doing it in Georgia? Were there requirements to be a candidate and was the doctor the one who suggested it to you? Just looking for hope. Thanks
AndrewOctober 17, 2014 at 6:53 am #84659dukenukemMember
My wife practices Dragon’s Way QiGong and works with me on some exercises. My favorite is “Rocking the Baby Dragon”. Her Master is my acupuncturist so I get a little encouragement from him.
Still a little reluctant about the herbs. They are chemicals and have not been tested. My western mind has trouble with that.
I just signed up on the KEYTRUDA/Merck website to get mailings as new info comes out. Has anyone else done this? Was it useful?
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