Votrient (pazopanib) working wiht FGFR2 mutation

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.

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?