newfoundlake

Hello,
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.

Hello,

My mom has been on the trial since January 28. She had her appointment on this past Tuesday (Cycle 2 – Day 1) where they said all of her blood work looked good and she could continue on the trial. Her blood pressure was elevated (which is one of the potential side effects) and she now has to go back to her primary doctor to get more medication to bring that back down. They mentioned if her blood pressure doesn’t come down, they will need to lower her dose of Cabozantinib.
We told them of the other side effects my mom has been experiencing which includes fatigue, constipation, which she used Miralax and prune juice to help, excessive burping with pressure in her ears and a bit dry cough, and slight redness and itchiness in her hands when she is using her hands but goes away soon after. All of which all began about the middle of February give or take. The burping and cough are becoming less and less as her body is getting used to the medication. Recently she has been getting a few bouts of nausea which she has take Compazine, as needed to help her. Overall, she is doing well and can do daily activities like laundry and emptying dishwasher. With the weather here it is difficult to get outside but my mom will do laps around the house to try and keep moving. Some days she has more energy than others and she is taking it all one day at a time. She has her CT SCAN scheduled for March 18th where we will see if this treatment is working or not. I will post again when I have more information.

Beth- hope this helps and if my mom can answer any questions your mom may have, please don’t hesitate to ask

Caroline, sorry to hear about how your mom is feeling. How are her thyroid levels (TSH)? My moms levels are increasing from her baseline taken a month ago, which is also a potential side effect of Cabozantinib, so the NP said they will be watching that. If I’m not mistaken, high TSH levels also lead to increased fatigue and weakness. The NP said if they continue to increase, they will put her on medication to bring the levels back down.

Hi-
Thanks Caroline for your information posted. I too think its a great idea to continue to add to this post with as much information as we can-

My mom began the Cabozantinib trial through Mass General Hospital on January 28th. She is on Day 15 (Cycle 1) and currently had no noted side effects until recently which is an increase in tiredness.
She is also taking three pills daily (60mg each) and she decided to take them in the morning just after she wakes up and then waits the hour until she can have breakfast.

(Bit of background info: She was getting her chemotherapy and scans for the past 6 months at a Dana Farber satellite office in New Hampshire instead of traveling into MGH for treatment)

Below is my moms timeline to get her started on the trial:

December 19, 2013: Her oncologist in NH informed us that her scan results have showed some growth of tumors and an increase in her tumor markers from 900 in October to 3,400 December. Decided we should make an appointment at MGH with original oncologist to see what her recommendations would be and if mom would be eligible for the Cabozantinib trial. Being uncertain at the time of when she would get an appointment at MGH, my mom decided to get her chemo treatment that was scheduled that day and had another treatment on December 26th.

January 2, 2014: Met with her oncologist at MGH who discussed further treatment options which included FOLFOX as option 1 and the Cabozantinib trial as option 2..

January 16, 2014: Went to MGH and signed consent form for trial and blood work was drawn. Start date set for January 28th because of the date of last chemo treatment. A scan was also done because they need the scan to be within 30 days of starting the trial. She had high blood pressure readings in office and the clinical trial coordinators said they would only accept a maximum of reading 140/90 due to the fact that Cabozantinib may increase blood pressure. We worked with her primary care doctor to increase her current blood pressure medication to be sure her readings would be under that number when she began trial.

January 28, 2014: Day 1 – Trial started and she received a 30 day supply of pills and blood work was drawn

January 30, 2014: Day 3 – Biomarker blood work taken

February 4, 2014: Day 8 – Oncologist told my mom that all of her blood work looked good. Her most recent scan was compared to the one from December and there was no change in the tumors. Biomarker benchmark results are 5,000.

February 11, 2014: (Day 15): Blood work drawn and vitals taken. Side effect noted -increased tiredness.

Hope this is helpful to someone considering the trial and I will try to answer any questions you may have