Topic: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With Advanced Cholangiocarcinoma After Progression on First or Second Line Systemic Therapy.

http://clinicaltrials.gov/ct2/show/NCT01954745

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Thanks for this info Gavin.  This may be a trial I'm eligible for.   I'll discuss with my ONC on Friday.

Mary

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

You're welcome Mary. Hope that you are indeed eligible for it and that you get some good news from the onc on Friday. And please let us know how you get on with that too.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

I'll definitely keep you posted Gavin.  I'm on Paclitaxel right now and CT scan last month showed I'm stable.  Based on that, I don't know if I would be eligible for this trial.  Overall I'm doing pretty well but always have that fear of what happens when current treatment stops working. 

I will discuss with my ONC.  My next CT scan will be the beginning of December and I'm already having fears it will show growth. 

Mary

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Thanks Mary. I am glad to hear you say that overall you are doing pretty well and pretty well sounds good to me right now. I know that the fear of what may happen is strong and I felt that with my dad as well. But, none of us know definitely what will or will not happen in the future do we? You are doing the right thing right now in exploring possible further options and seeking answers and I hope that you will get some good news from your onc. Please try and stay strong and focus on the now and try not to worry too much about what the scan in December may show. Who knows, it could show shrinkage and we could be hearing about it from you in the Good News section of the site! And of course, you know that we are all here for you as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

FYI, I queried my insurance company (Oxford) about cabozantinib, which is approved for other cancers, and they approved for me (intrahepatic cholangiocarcinoma after two standard treatments were exhausted).  I'm not using it now because I was accepted for a MEK/Pazozantinib trial and figured I would save the cabo for later when there might not be a trial option; but one might want to try that rather than to be tied to a clinical trial setting. 
Best,
Regina

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Hey Gavin,

I spoke to my doctor today regarding this trial.  Once again I want to thank you for bring it to my attention.

Since the Paclitaxel is still working for me  - keeping me stable as of last CT scan on 9/4, I'm not currently eligible for a clinical trial.  My next scan will be the first week in December and if there is any tumor growth or new tumors, I would be eligible for a clinical trial.  Sloan has a number of trials in Phase I right now with inhibitors that I could be eligible for.  My doctor said I could also be eligible for the Phase II trial at General Mass - Cabozantinib.  One problem for me might be that I've had more than two different chemo regimens.  The study says for patients with progression on first or second line systemic therapy.  But my doctor said there may be ways to work around that.  She would be willing to call the doctor in charge of this trial at General Mass to see if I could be eligible if my December CT scan shows tumor growth or new tumors.

So I'll continue on the Paclitaxel and await my next scan, first week in December and see what the results are.  It was good to talk about other options if/when the Paclitaxel stops working.  I know it's likely that at some point down the road it will stop working.  That's just the nature of the beast with this disease.  So as I said, it's good to know of these other options.  We also spoke of the next generation gene sequence and the possibility of doing a biopsy on me to get enough tissue to do this.  They tried with my biopsy tissue from 2011 that they still had but there was not enough tissue.  So that's another possibility also.  There is insurance problems with this if they try to do while I'm still stable.  They probably won't pay for it.  So another hurdle I might have to overcome but will cross that bridge when I come to it. 

Thanks again for keeping us informed.

Peace & Love,
Mary

8 (edited by PCL1029 Sat, 12 Oct 2013 12:34:16)

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Hi, everyone,
For your information only.

BTW, cabozanitinib (XL184) is a c-MET and VEGRF2 inhibitor;simply put it is a
multi-tyrokinase inhibitor (multi-TKI) of tumor growth,metastasis and angiogenesis.  (single agent treatment)

It is different than the MEK/panopanib clinical trail,that one of our member is on, that trametinib is a MEK inhibitor and pazopanib is a VEGF inhibitor. (regimen consist  of 2 agents)

LY2801653,which one of our member is on is used as a MET inhibitor among others.  (single agent)

http://www.ncbi.nlm.nih.gov/pubmed/23275061

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Exactly.  Since it doesn't seem to matter whether one is MEK/MET positive or not, as to efficacy, they all seem to be worth a try for many of us.  The beauty of cabozantinib, besides its surprising success for other GI cancers is that, I discovered, that it can be prescribed by your doctor, thus avoiding the clinical trial setting.

Thanks for your excellent clarifications, Gavin.
~Regina

10 (edited by PCL1029 Sat, 12 Oct 2013 17:02:12)

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Hi,
Just for clarification purpose only:
I do think  it matters if you know what pathway inhibition is the best to start  for treating the CCA that a patient has, especially if drug resistance will be developed down the road which are quite common for TKI  . Besides the adverse drug reactions are different( ie: some are more prone to the cardiac toxicity and others are prone to the GI toxicity.) ,Also, it does make a difference if patient has comobidities ( patient has other health problems,like a cardiac patient or a diabetic patient.)

My point is to encourage patients ,when if they can, follow the top hospitals practices to obtain a " next generation sequencing genomic profile" for them to map out the best personalized treatment plans for them now or in the future planning of recurrence. ( This is my own conclusion after  oncology consult with three oncologists whose names are very familiar with our members on this discussion board.)
In my opinion, not all the oncologists  ( esp The community or locally practices ones )are familiar with most of this new types TKI or immunotherapy agents( IA) that came out of the market  in the last couple years, therefore ,without experience or  2nd opinion to support the "off label use" of this new TKI or IA, I do not think it is that easy to ask them for a prescription and I don't think it is appropriate for them to do so either. 
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Percy....I so much agree with you.  At present researchers are paving the way for development of more targeted therapies aimed at curing a variety of cancers based on the specific biology of a patient’s tumor.  It is hopeful to see that our patients are benefitting from these developments as well.  Rare cancers such as ours may be on more even footing with other diseases. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

When I said "Since it doesn't seem to matter whether one is MEK/MET positive or not, as to efficacy, they all seem to be worth a try for many of us," I meant that all my oncologists queried did not seem concerned that I express neither MET or MEK, in the sense that they believe that the inhibitors would work regardless of that fact.  That's all.  Nothing to do with comorbidities or vulnerabilities.

Obviously, one should only work with doctors familiar with or who have access to information about the drugs they are dispensing. 

The genomic profiles are very interesting and promising and will be even more so in time.

best,
Regina

Re: A Phase II Study of Cabozantinib (XL-184) Monotherapy in Patients With

Is anyone taking cabozantinib yet or doing this trial? If so, what is the response? It sounds really promising and my sister has pretty much exhausted all the standard chemo regimes. Thanks!
Chris