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.
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.
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.
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.
Maybe this will help- My mom was very nauseous when she began Gemcitabine and the Dr. prescribed Zophran and another anti nausea medication which neither helped very much. I did some research and found a study that seemed promising. It basically said that if you take between 500mg-1000mg of ginger root capsules for three days PRIOR to chemotherapy treatment and the three days AFTER treatment, it reduces chemo induced nausea.
Below is the link to the published study:
It truly helped my mom and she didn't have to take any other anti nausea medication once she started the ginger. The ginger pills are just a part of her daily vitamin routine.
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
Re: Mass General Clinical Trials (Proton beam therapy & Cabozantinib) (8 replies, posted in General Discussion)
My mom was diagnosed with ICC last January and she has recently stopped responding to her treatment Gemcitabine in December. We met with her oncologist at Mass General on January 2nd and she feels that my mom would be a good canidate for the Cabozantinib trial. She gave my mom the consent form to review and fill out and she scheduled an appointment next week to discuss any questions my mom may have. My mom read through the consent form and decided she would like to try it and is hoping to start the trial mid January. My moms other option would be FOLFOX treatment.
Did you have your meeting at MGH? Did they feel your mom would be a candidate for either trial?
I will post next week after her meeting and will hopefully have a bit more information on this trial to share.
Thank you for all your responses
My moms oncologist at Mass General does feel that she will most likely be eligible looking at her records/levels and and feels my mom should fit all the criteria. If my mom decides to participate in the trial, she will go in with her consent form next week to start the process and hopefully begin the trial by mid January.
I am not sure about the following question: has the VEGFR2 and C-MET inhibitor been identified. I will research and try and find that out. Would it be in her medical records?
The way they explained the tumors to us is there are multiple tumors freckled throughout her liver. Many lesions (>50) are poorly defined and measure in mm but there are 4 tumors that measure in cm. When we met with the radiologist last January, the largest tumor was 4.8 cm and located close to her stomach. Over the year, they the tumors have reduced in size and density, so we asked during last weeks appointment to have the radiologist take another look to see if any radiation therapy would be a viable option at some point in the future.
I have been visiting your website for information since my mother, age 72, was diagnosed with Intrahepatic Cholangiocarcinoma in January 2013, as an incidental finding. I feel it time to share her story.
My parents are a very healthy, active couple and just after last Christmas 2013, my mom was feeling very run down. She had severe back pain at night and she began to lose feeling in her right foot and was soon not able to walk on her own. She went to the local hospital and they said she had a stomach bug. On New Years Day, she was continuing to get worse, so my dad took my mom to another hospital where they did a CAT scan and found multiple lesions on my mom’s liver. They assumed that there must be a tumor pressing on her spine causing her to not be able to walk.
They rushed her by ambulance to Mass General Hospital in Boston where they performed many tests over the next week, including a biopsy, 3 CT scans, 4 MRI’s, a colonoscopy, ECERP, spinal tap and they determined that there were no additional tumors but confirmed multiple lesions on her liver. My mother was continuing to get worse and she lost all feeling, including all her reflexes, all the way up to her mid abdomen. She was finally diagnosed after a week and a half with a syndrome called GBS – Guillian Barre Syndrome, which is when your body believes it is fighting a virus but instead of attacking a virus it begins to attack your nervous system. A day later, they had a second diagnoses, the incidental finding of Intrahepatic Cholangiocarcinoma, non-resectable. They determined neither diagnoses were connected to the other. They told us she had 2-3 months without any treatment and with chemotherapy treatment about 1 year. We were at a loss.
My mother was essentially paralyzed and we tackled that first. She had the treatment for the GBS and thankfully it began working. By mid January, my mother had been moved to a rehabilitation hospital and we finally met with her oncologist from MGH, Dr. Jill Allen She determined that her treatment would consist of Gemcitabine, (Gemzar), three weeks on and one week off to begin the end of January. Her oncologist chose that course of treatment because she wanted her nerves to begin to heal and repair themselves. We were nervous, but knew it was the best option we had. We also introduced many vitamins to my mothers routine including Milk Thistle, to aid her liver to remove toxins, vitamin D, Ginger for nausea (taken 3 days prior and 3 days after treatment), and Tumeric Curcumin. My mom continued her treatments and her tumor makers steadily decreased with just the Gemzar. She came home from the rehab hospital mid April and continued to work hard to be able to walk again. By the summer, she was continuing to respond to her treatment with decreased tumor densities and falling markers and was walking with no assistance by August. She finally began to feel like herself again. We also went for a second opinion with Dr. Thomas Abrams from Dana Farber and he agreed to the course of treatment for my mom.
In November, she had a port placement and had a complication where her lung was punctured. Since then she hasn’t truly had a full round of her chemo due to low platelets and neutrophil numbers over various weeks. Also in mid November, her tumor markers showed an increase. My mom was scheduled for a scan on December 19th and the results showed four of the tumors have shown small growth, so Gemzar has run its course. We were very lucky the GEMZAR had worked for that long.
Now our options consist of the next line of treatment which is FOLFOX or another option is my mom may be eligible for the clinical trial at Mass General with CABOZANTINIB. We are leaning towards the trial and feel we will still have the FOLFOX fall back on.
My mom is asymptomatic in regards to the ICC. Any ideas or information that may help us decide would be much appreciated.
Sorry for the enormous text body but felt all the info was needed ☺