Re: Cabozantinib Clinical Trial Update

Caroline - So sorry to hear that your mom's cancer has spread and that she didn't respond to the Cabozantinib.   

My mom is at MGH today seeing the nurse practitioner because she is not doing well at all.   She had been feeling very fatigued, shakey/wobbly so last week they decided to reduce the Cabozantinib from 3 pills a day to 2.   I guess the weakness has gotten worse and she is now experiencing a lot of achiness and pain throughout her body which is why they told her to come in today.   Almost sounds like a flu but I think it is either the cancer or the medicine making her so sick.   My dad is with her so I'm waiting to hear.   

My dad is kind of in denial about the whole thing so I'm not sure if he and my mom have had any end of life discussions.  For the first time since her diagnosis 3.5 years ago, I feel like the end is coming sooner rather than later and we need to start planning.   Her quality of life has really started to deteriorate and if we find out the Cabozantinib isn't working (CT scan scheduled for April 10th), I don't know if there are any other treatment options OR if she'll even agree to anything further.

Re: Cabozantinib Clinical Trial Update

Hi Caroline,

I'm positive that you will find another treatment that works well for your mom.  I know how disapointing it can be when you try something that doesn't work.  This happened to my dad when he did adjuvent gem after his surgery.  He went through all of those treatments just to find out his cancer returned aggressively to his liver.  He changed treatments to FOLFOX, had an allergic reaction to ox, then continued with just 5-FU.  To everyone's surprise, the 5-FU gave him a 44% overall reduction in his tumor burden.  You just never know.  I'm really excited to hear more about Dr. Zhu's new trial.  He is a wonderful Doctor and we are still highly considering going under his care.  He does not give up and thinks outside the box.  If you want to email me privately, my email address is  Stay positive and focused!  Sending prayers and good intentions your way.


Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Cabozantinib Clinical Trial Update


Caroline, I’m so sorry to hear that your mom didn’t respond to Cabozantinib.   I will be hoping for her to find a treatment that she responds to. 

Since my last post, my mom has had a few issues but all in all tolerating it well.  She has been put on a thyroid medication to lower her TSH levels, another blood pressure medication and two acid reflux meds, all which are contributed Cabozantinib.  Her fatigue is lessening and the dry cough and burping has mostly subsided.  My mom is scheduled for her CT scan this coming Tuesday (March 19th) but doesn’t have an appointment with her oncologist until the following Tuesday for the results.  I had my mom call the trial coordinators to see if she could get the results the day of the scan but they said most likely no. I assume if treatment wasn’t working, they would let her know that day…
I will post soon when we have more information.

Re: Cabozantinib Clinical Trial Update

Thank you for all the much helpful information. I too am looking for clinical trials for mom. She has intra-hepatic cc with mets. I just don't know if she's healthy enough or is willing to travel.

Re: Cabozantinib Clinical Trial Update

We got good news today!  My mom got the results of her scan after being on the Cabozantinib trial for 2 cycles (January 28-March 25) and they told us her tumors are stable!  There was a 20% overall response and she will remain on the trial for cycles 3 and 4 then a repeat scan in 8 weeks.   She has some side effects from the drug, i.e. fatigue, elevated blood pressure, acid reflux, and elevated thyroid levels, but they feel they are finally getting them under control.  They did increase her thyroid medication today and want her to see an endocrinologist in a couple weeks to monitor her levels along with them. 
I hope this is helpful and I will post again when we have more information.

Yellow77rose, How is your mom doing?

Lola, that is what my mom has, intra-hepatic cc with mets to her liver.  She was diagnosed January 2013 at Mass General Hospital and was given Gemcitabine until December 2013 (thats  when the scan showed tumor growth).  She decided to begin on the trial January 2014, instead of FOLFOX, which she feels she will have as an option if the trial doesn't work out. 
I wish your mom the best and I will do my best to answer any questions about the trial you may have.

Re: Cabozantinib Clinical Trial Update

Hello NewfoundLake,

Great news for your mom!  So happy for you and for her. 

My mom is not doing well and was taken off the medicine 2 weeks ago.   She is having a major flare-up of crohn's disease which has been extremely debilitating.  Dr Zhu thinks that it had been under control for last two years b/c one of the chemo drugs (Gem/Cis) helps with inflammation and inflammation is what causes flare-ups of crohn's.   Ironically, my mom said from the beginning the crohn's would do her in before the cancer. 

My mom was diagnosed 3.5 years ago with bile duct cancer but the doctors actually saw the "spot" two years earlier.  However at that time her blood work was normal and liver values okay so the doctors kind of ignored the spot.  At this time my mom was extremely sick from the crohn's.  The doctor's felt they had to get the crohn's under control b/c that would kill her before the tumor would.   She was so sick that she was admitted to MGH for 3 months, had two major surgeries the second of which resulted in her having a colostomy bag and was on TPO.   I say that to put in perspective how sick she was - we weren't sure if she was going to make it.   About the time the crohn's finally got under control, the blood work showed activity and the liver values started to be off so that is when they started focusing on the tumor and discovered it was bile duct cancer.

My mom is very depressed b/c she is too weak to even get around and this isn't how she wants to live.  It is heartbreaking to see her this way.

Re: Cabozantinib Clinical Trial Update

Since my last posting, my mom has decided to stop the Cabonzantinib trial.  She was on the trial from January through May.  She had many side effects from this trial drug including high blood pressure, thyroid issues, acid reflux, hand and foot syndrome and fatigue.  All of these side effects were being managed to some degree with various medications.  She was on 4 different blood pressure medications to control her high blood pressure, a thyroid medication for an underactive thyroid, and 2 different acid reflux medications.  In the beginning of April, painful blisters on her hands and feet started to develop.  Once they began healing, my mom became severely fatigued and weak.  We weren't sure what was causing her severe fatigue but soon realized it maybe caused by a blood pressure medication she needed to go on due to the trial drug.
Mid May, my mom had a CT scan done to see if the trial was working. When her oncologist looked and compared my mom’s most recent scan taken in May with her scan from this past January, there was a 10% increase in tumor sizes on the right side of her liver and stability in the tumor on the left side. Technically, by the trial standards, mom's cancer was considered stable and she could have stayed on the drug.  If she remained on the drug, she could have reduced her dose to reduce side effects.  My mom didn’t make any decision until she got her results for the tumor makers two days later.   Unfortunately, her tumor markers had increased from 3200 to 4400.  After talking with her oncologist, taking into account all the side effects and most importantly, the scans and markers, my mom decided it would be best for her to stop the trial.
Now that she has stopped the trial, she has returned to her pre trial medication for her blood pressure and will need to stay on the thyroid medication and have her TSH levels monitored until they return to normal.  She is also off of the acid reflux meds now.  We were hoping for better results from this trial but do know that even though this drug hasn’t helped my mom, it is working for some.   
My mom has had a three week break, and is now going to start 5FU and Leucovorin this week.  She has chosen not to add the Oxaliplatin to avoid its potential side effects on her nerves since she had GBS last year and still has some numbness and tingling from that.

Re: Cabozantinib Clinical Trial Update

Dear Newfoundlake, the good part is that Mom still has options! That is very important and you just never know what  is going to work. Its like hunting and pecking until you find the right recipe. Mom sounds like a true Super Woman and I am hoping for the best for her. Thank you for the update.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Cabozantinib Clinical Trial Update one knows  why some study participants don't do well and yet others do great.  But, then again, this is the purpose of these clinical trials.    Given the circumstances I see why your Mom  choose to withdraw from this trial and move on to something less troublesome.   I hope that she has regained her strengths and for the proposed treatment to show great results minus the bothersome side effects she experienced.