July 10, 2017 at 10:09 am #94961julianzchenMember
Thanks for sharing your father’s story and am so happy to hear that Pazopanib works for him on behalf of FGFR2. I hopw he will soon find new option at MDA.
May I ask if there is any metastasis at the time he was treated for iCCA with Pazopanib. Thanks!
My sister-in-law carries ICCA and is at metastatic stage. I was wondering if Pazopanib will work for her even if she is positive with FGFR2.
JulianJuly 6, 2017 at 2:49 pm #94960positivityParticipant
That is a tough situation when the only standard treatment to this cancer is gem/cis. From day one I was extremely dissatisfied and disappointed that this was it, and of course the Xeloda/radiation. My mom could not undergo any of these treatments, so it was very tough to know that there is nothing offered. I think it’s very important to get the genetic testing which may offer hope of other treatments that studies have shown successful.July 6, 2017 at 1:20 am #94959araproParticipant
I’m 40 years old and also have icc, started in liver, then pancreas and now in the abdomen. Never had any symptoms. Had 5 rounds of chemo and also have the fgr2 mutation. I get treated at memorial Sloan in ny. Recommended !July 5, 2017 at 6:00 pm #94958marionsModerator
Jdow….this study is listed on our website in patient friendly version.
Good luck and please keep us posted. Ultimately I wish for all participants to discuss their exprience on our site. One of the most difficult part about this cancer is that patients feel isolated and alone with this cancer.
MarionJuly 5, 2017 at 2:34 am #94957jdowMember
Have you heard of this clinical trial? It focuses on patient with the FGFR mutation. https://clinicaltrials.gov/ct2/show/NCT02924376?term=fgfr&cond=Cholangiocarcinoma&rank=1
My brother in law was just accepted into the trial.May 17, 2017 at 10:50 pm #94956
Thanks for the article. Some cancers, such as small cell lung cancers are know for creating pareneoplatics syndromes, and often times these can be treated. Other cancers are suspected of pareneoplastics, but their may or may not be a test to detect or treat them. Cholongiocarcinomas do NOT normally create pareneoplastics
I talked with MD Anderson for some time yesterday (several calls), and also talked to my oncologist. MD Anderson has a standard policy for cancer patients that are under treatment, that they can only “consider” a new patient, 3-4 weeks before the “restaging” time. As we all know, cancers are tricky, and the oncologist will schedule MRIs according to many factors, including the complication considerations of the patient, not only including the “guesstimated” track of the cancer. In the case of my father, he is stage IVB and nothing is expected to change, except that he will start to get worse after the cancer adapts to the Pazopanib. The oncologist has no treatment after this drug, and he was surprised it worked at all.
Hence, my oncologist is confused why MD Anderson would NOT at least consider my father. I reinforced, that we had this “restaging” appointment a few days back, but the intake team was insistent that I call 3 weeks prior to my next visit in August. Calling even hours after my appointment with my oncologist, negated the ability to be considered until the next appointment.
It really makes no sense. They only want me to call 3 weeks before the visit in August, regardless if the patient is improving or getting worse, and if he is worse in August he may not be medically cleared to travel to Houston. Furthermore, they reinforced that since MD Anderson will also do scans, these will NOT be covered by insurance since they will be near the same time of my scheduled scans in August and insurance will NOT pay for both.
It should be noted that the MD Anderson intake team is the GI group. For many cancers of the GI, there are primary, secondary and teritary cancer treatments. Hence, the goal with the MD Anderson process, is to see the patient when they are considering alternative treatments. however, with cholangiocarcinomas, gem/cis is the only standard treatment recommended by the cancer society. All other treatments are outside of the standard protocol. Hence, a research center, should be interested in patients that have eliminated the standard protocols.
Really confusing. I also tried last June to see MD Anderson, and by the time I could confirm an appointment, which took 8 weeks (I sent all medical records immediately), my father was too sick to travel.May 17, 2017 at 10:02 pm #94955marionsModerator
Cary…..I found this May Clinic article on parenoplastic syndrome of the nervous system:
This also may explain the improvement in your Dad’s brain function while being treated with Pazopanib.. Guessing here.
Moffit, Tampa or Mayo, both are good choices as well.
There is something wrong with the picture of MD Anderson denying an earlier office visit. The fact that they don’t won’t to see your Dad may easily be related to the fact that he needs to be restaged, but to what stage? I would call again and ask for a more detailed explanation.
Please share with us the outcome of the conversation.
Good luck and tons of good wishes are heading your way.
MarionMay 17, 2017 at 9:01 pm #94954
Thanks Mary. I agree with your comments on the function of the liver and impact to the brain. The medical team has done a bunch of work and they determined it appears the liver is working and they don’t expect it to negatively impact the brain. We’ve also done some more expensive pareneoplastic tests, and all these have been negative. My dad’s symptoms have been unusual, and the main issues normally associated with the cancer: jaundice, nausea, bloating have not affected my dad. While the size of his cancer is large, he would have had a high quality of life, if NOT for the brain issues. .
I think finally the doctors are agreeing the cancer is impacting his brain. However, they have no idea how to address the issue. Current thought is that this is an undetectable pareneoplastic. It should be noted that his cancer had a tendancy to produce high calcium levels, from May to November. The high calcium almost killed him before it was diagnosed. We’ve done PET scans, scopes, cat scans, MRIs, etc, and the cancer is isolated to an intra-heptic cholongiocarcinoma.
Any advise on medical facilities?May 17, 2017 at 8:09 pm #94953bglassModerator
I am sorry to hear your father is having such a difficult time. It is encouraging how he responded to the pazopanib with some improvement in his gait and cognition. You are spot on in thinking about next steps.
I do not have direct experience with the symptoms your father has experienced. My understanding is that liver illnesses such as hepatitis and cirrhosis can affect cognitive functioning because of the role the liver plays in removing toxins. Symptoms can apparently include balance, which may affect gait. I have not heard anything specifically tying such symptoms to cholangiocarcinoma, but it seems possible to me there might be a link. (Systemic treatments can also affect cognition, e.g., “chemo brain,” as can some pain medications.)
Hopefully the doctors you will be seeing have ideas on how to mitigate these symptoms. As you describe, they really impact your father’s quality of life.
Regards, MaryMay 17, 2017 at 6:22 pm #13329
Wow – Brutal experience.
My father, 75 years old, has intra-hepatic cholongiocarcinoma with BAP1-E9 and FGFR2-CD2AP genomic alterations. We’ve had limited success with y-90 and Gem/Cis. The Y-90 appeared to stop the growth for a couple months, but we started seeing new growth around the edges of the cancer. We then followed one treatment for each side of the liver, by Gem/Cis. This also showed limited success, and appear to stop the cancer during the treatments, but the cancer would start growing between treatments.
The most frustration part of this experience has been the deterioration to his gait and cognitive abilities. While before this started he could walk 2+ miles every day, Lately, he’s been limited to a walker and wheelchair. He can walk around 150 feet with the walker, at best, and needs a wheelchair most of the time. His cognitive ability has seriously deteriorated and even doing a simple puzzle is beyond his ability. This started around June 2015.
Good news. We started Pazopanib on 2/12, since Foundation One indicated, this drug may be successful on his cancer due to the FGFR2 genome alteration. Great news. My dad’s cancer is stable, with the last MRI (May 9), at 15.6cm x 8.2 cm right liver, 8.4cm x 4.6cm cm left. More importantly his gait and cognitive abilities are improving. He can walk a flight of stairs (first time in a year), use the walker for around 1/2 mile, and has stated working on puzzles. You can see his mind working.
So while all the neurologist have disagreed, I have firmly believed my dad’s walking and cognitive issues were secondary to the cancer. The doctors explained this was NOT a known symptom of cholongiocarcinoma, and it was due to my dad’s age. Clearly, as his cancer is improving with Pazopanib, we are seeing significant improvement in his mental and walking abilities.
So now I need to work on the next step. It’s clear from all the reading that the cancer will continue to mutate and then become resistant to the Pazopanib. In most cases this happens quickly especially, since my dad is taking 1/2 the required dosages of Pazopanib to mitigate any complications. I’ve been trying to get an appointment with MD Anderson, but they say they won’t see him until “restaging”. However, I just saw my dad’s oncologist on May 12, and he agreed it was a great time to discuss future treatment options with another facility. My next appointment with my oconologist is August 12, and my doctor agrees that my dad may longer be improving at this time. However, since my oconologist appointment passed by two days, MD Anderson says I will need to call them three weeks PRIOR to his next appointment (August 12). So by the time MD Anderson will consider my dad, he may NOT be healthy enough. Furthermore, while he’s feeling better, it’s important to further characterize the cancer.
I’m NOT sure what to do. I’m currently going to University of Miami. I need to see a facility that specializes in the FGFR2 genome mutation. It appears Mayo is strong on liver transplants. Any recommendations for the best facility? How’s Moffitt in Tampa?
Anyone have a similar experience to me with the cognitive and gait issues with this cancer?
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