My Mom – Age 77
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ncydaughter….of course, this cancer has evolved from obscurity to attention gaining, hence all the good reasons supporting that of positive thinking.
Another thought I had and perhaps worth investigating: the ASCO TAPUR study.
What caught my attention is this:
7. What if a patient does not have one of the drug-cancer-gene matches specified in the study?The TAPUR Molecular Tumor Board (a group of experts convened by ASCO) will provide review and discussion of cases that do not fit the criteria specified in the protocol, as well as cases where the treating physician requests guidance. The ultimate treatment will be the decision of the patient and the treating physician. Some possible outcomes other than enrolling on the TAPUR study include:
Treatment on another clinical trial. The Molecular Tumor Board will be able to provide information on alternate ongoing clinical trials for consideration.
Treatment with off-label therapy outside of TAPUR protocol. The treating physician may recommend administering an off-label commercially available therapy that is not included in TAPUR.Here is a listing of all questions posed:
http://www.tapur.org/node/31#question 7You may also read up on our postings: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14023
Hugs,
MarionMarion,
I really don’t know where the testing was done. It took almost 8 weeks to get the results. Supposedly they tested for 410 genes. BAP1 was the only gene that was listed for “Somatic Alterations in the Investigational Panel”.
There are other genes listed under a section “the following genes contain exons that have clinically validated”, but I guess they didn’t show up as being amplified.
We were disappointed given the negative association of BAP1 and lack of clinical trials, but try to stay positive since right now my mom is having a pretty good quality of life all things considered.
nycdaughter….welcome to our special group. You are doing everything right with trying to line up the next step of possible treatment. As far as I know, there are no current clinical trials addressing the the BAP 1 mutation. Sloan has a study, but it is observational only and you would want a interventional study. But, here is the link:
https://clinicaltrials.gov/ct2/show/NCT01773655
I am wondering: genetic testing – was it performed by Sloan only or was it conducted by an outside lab such as Foundation One, Perthera or a similar accredited lab? My reason for asking: major institutions conduct their own testing, but I believe that other available tests may be more comprehensive and possibly discover additional mutations.Hugs,
MarionMy mother was diagnosed with intrahepatic CC in October 2015 at age 76. She really had no prior symptoms worth noting but ending up in the emergency room with gas pains that wouldn’t go away. The pain was in the upper right quadrant and back. At the hospital they decided to do a cat scan and that is when they discovered that she had tumors in her liver and lymph nodes. At first glance the hospital thought that it was pancreatic cancer. We got an appointment at Sloan Kettering where she had a biopsy and it was diagnosed with Stage IV intrahepatic cholangiocarcinoma.
She started on treatment right away. For her first six treatments she was on gem/cis every week for two weeks and then one week off. This was a pretty aggressive schedule for her and due to fatigue she was switched to every other week. She has tolerated the chemo very well with only mild fatigue and no other notable side effects.
So far she has had 3 scans. The first scan (Jan 2016) showed shrinkage across the board. The second scan (April 2016) showed a slight growth in the large tumor in her liver, but shrinkage in the small liver tumors and nodes. The cancer had not spread to any new areas.
I must note that my mom did miss a couple of the treatments between the first and second scan so she could go to Colorado on a long planned skiing excursion. Quality of life is very important to her and the doctors were accommodating about tailoring her chemo schedule around these planned vacations. She is not your typical 77 year old. She is very active and in past years has logged in about 30 annual ski days!
Her third scan (June 2016) was stable. The large tumor was unchanged (10.2 x 8.2 cm) and the smaller tumors continued to shrink. No new areas were noted.
We just got back her genetic testing and she only had one mutation, which was BAP1. Currently there are not any trials that I know of for this mutation. I did watch the one hour seminar on the BAP1 mutation by Dr. Javle and Dr. Marcus on the website (from April 2016) and found it to be very informative.
I was wondering if anyone that has the BAP1 mutation knows of any drugs or trials that are used to target this mutation? For instance is anyone on bevacizumab (Avastin) that also has the BAP1 mutation. Also, is it common to only have one mutation?
So far my mom has completed 18 rounds of chemo (gem/cis). As I noted above, the cancer has either shrunk or remained stable over the past 8 months. Her liver stats (ALT, AST, ALP) are in the normal range. That being said, I am always looking ahead for next steps.
I read the blogs daily and figured it was time to officially register. I live in New York City so I am able to attend most of my Mom’s doctor’s visits to Sloan.
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