April 30, 2015 at 1:25 am #79150marionsModerator
Lauren….this is the trial: https://clinicaltrials.gov/ct2/show/NCT01954745
appears that it is not recruiting. Giving up – never, poor and single – no exception
MarionJune 11, 2014 at 3:57 am #79149marionsModerator
Newfound……..no 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.
MarionJune 11, 2014 at 12:29 am #79148lainyParticipant
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.June 10, 2014 at 10:45 pm #79147
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.March 27, 2014 at 10:00 pm #79146yellow77roseParticipant
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.March 26, 2014 at 12:56 am #79145
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.March 22, 2014 at 3:53 am #79144lolaParticipant
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.March 17, 2014 at 12:22 am #79143
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.March 14, 2014 at 1:27 pm #79142nikki4470Participant
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 Nikki4470@aol.com. Stay positive and focused! Sending prayers and good intentions your way.
NikkiMarch 12, 2014 at 3:53 pm #79141yellow77roseParticipant
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.March 11, 2014 at 11:41 pm #79140darlaParticipant
Glad that you are feeling better and more optimistic after getting it all out. That’s what this board is for. Hoping you will find a treatment for mom that is a good fit. My best to both of you.
Love & Hugs,
DarlaMarch 11, 2014 at 9:24 pm #79139
Dear CF friends,
My mom’s scan results from today were not good. She didn’t respond to Cabozantinib either (for those not familiar with my mom’s case, she also didn’t respond to Gem/Cis chemotherapy, which is how she qualified for this clinical trial in the first place). The cancer has spread and there are now tiny spots in the surrounding organs in addition to the original tumor in the liver (which actually shrank a little on one side but got bigger in another). She also has more affected lymph nodes that have also gotten bigger.
She is, of course, going off the trial. They recommended FOLFIRI or FOLFOX in addition to local radiation therapy for her enlarged lymph node by her neck (which doubled in size). We are taking it easy today and will weigh all our options tomorrow. My mom said she feels really bad for the family — especially me — for letting us down. I told her nothing compares to what she’s had to endure because of the disease and that we’ll find another treatment that works for her.
Dr. Goyal mentioned attending a conference on cc in Salt Lake City and said that it was sponsored by the Cholangiocarcinoma Foundation. I felt extremely grateful to be a part of the group fighting tirelessly to find an effective course of treatment for this disease.
I asked the Dr. Goyal about immunotherapy as an option for my mom. She and Dr. Zhu are in the process of applying for a clinical trial on immunotherapy for cc patients at Mass General. She said it probably won’t be available until about six months later. She also told us about ongoing clinical trials on Nivolumab, which is a form of immunotherapy. I just looked this up, and here is more information:
I just searched for Nivolumab, and not surprisingly, Percy and Willow have already posted on it on this site. Good work, you two!
I was very down when I started writing this post, but I feel better and more optimistic about moving forward now that I’ve shared the news with you all.
CarolineMarch 1, 2014 at 3:55 pm #79138
My mom tried honey for her oral mucositis and it helped quite a bit. I know she was told to stay away from honey when she was getting chemotherapy from Sloan-Kettering, so you may want to check with your dr before using it.
Here are some studies related to honey & oral mucositis:
http://www.sciencedirect.com/science/article/pii/S187638201300005XFebruary 27, 2014 at 10:19 pm #79137
One more thing: I don’t want to sound like the voice of doom & gloom for Cabozantinib. If I haven’t mentioned this before, I was told that there are people who have been on the drug for three months; meaning, they had good results on their 2-month scans. So please don’t allow my mom’s experience to make you lose hope. Besides, my mom did remarkably well on gem/cis, and that treatment turned out ineffective, so we really don’t know how the drug is working for her. I’m not sure if this break will delay my mom’s scan, but it’s scheduled for 3/11 for now, and I will be sure to keep you all posted.
CarolineFebruary 27, 2014 at 10:01 pm #79136
Hi Nicole and Beth,
Nicole, it’s great to hear from you. Thank you for the update on your mom.
As of today, my mom will take a break from Cabozantinib for a week. Her mouth sores got to the point where the pain from them was competing with the pain from the tumor. I guess she could have taken numbing medications for it, but given her overall condition, she decided to follow the NP’s advice and take a break for a week.
I will post updates on how my mom does during her rest week. We were told that she can simply stop — no tapering off necessary.
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