February 27, 2014 at 7:31 pm #79135
Happy to hear your mom is faring pretty well. She is about 3 weeks ahead of my mom in the study (my mom started on 2/20). My mom has noticed a slight increase in fatigue. She has also been having diarrhea.
Please continue to post! I will do the same as well.February 27, 2014 at 6:36 pm #79134newfoundlakeParticipant
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.February 26, 2014 at 9:46 pm #79133
About three nights ago, I called my mom to check in on her. She’s been sounding very out of breath and weak these days, but she sounded even more so than usual this time. So I asked her what was wrong, and she said she was brushing her teeth. That tells you how much energy she has these days on Cabozantinib. Earlier that day, she went to a local lab to get her blood drawn because her WBC had been low last week. I think that trip took a lot out of her, too.
Given how my mom used to be able to exercise at least 45 minutes every day before going on Cabozantinib, I contacted her drs and nurse practitioner at MGH to let them know of my mom’s condition. The NP said that her blood count actually looks better this week but if my mom’s having a hard time, she should stop Cabozantinib for a week and see if she feels better. My mom said no. She signed up for two weeks, so she’s going to see this through until the scan. So she’s still taking the drug.
In answer to your question, Beth, the mouth sores probably started around mid to late first cycle. She made a mistake of going to get her teeth cleaned because she thought the pain might be related to her teeth. She really regrets having done that. Her fatigue coincided with all the horrible weather in the northeast when she couldn’t go outside to get her exercise. So I would recommend that your mom keeps active as much as possible. I think people react widely differently to the drug, though. I hope your mom fares much better with minimal side effects. Oh, and my mom’s been doing a salt water mouthwash every day for the mouth sores, and that’s been helping.
It turned out my mom’s constipation wasn’t the main culprit for her pain. Her constipation is now under control (she’s been taking colace, miralax, and gas-x) but the pain continues. (Btw, her dr told her to avoid suppositories for now given her WBC count.) She started going back to her acupuncturist, and he’s been the best source of help for The Monster Pain, which is probably where her tumor is (my mom describes the pain as her innards being ripped apart).
I have already started looking into the next set of options for my mom. We were told that right now, the cancer that’s spread outside is greater than the tumor itself, so she needs systemic therapy. As far as I know, chemotherapy or drugs like Cabozantinib are her only options for that. My mom already tried the first line of chemo (gem/cis), and now this. Does she go back to chemotherapy? Or try another drug and face the possibility of more side effects? I’m not sure. I’m trying not to worry too much before the scan, but I also don’t want to be blindsided. My mom’s been mentioning a more holistic/alternative treatment as something she might want to pursue. I’m completely in support of that, too. I just want to see her pain-free, happy, and enjoying life. For much of the recent past, she’s been doubled over in pain or lying down.
She has another follow-up appt next week, so I’ll post another update then. My posts are always so long! I’ll try to be more concise next time. Also, Beth, if you want to email me privately, just click on my username and email me through the forum. Oh, and here’s something I learned recently: sometimes (actually, most of the times) it’s easier to talk to a nurse or doctor on-call during non-business hours. I called MGH multiple times over the weekend, and got calls back right away.February 26, 2014 at 4:18 pm #79132
Caroline, how is your mom doing? Has she continued taking the Cabozantinib? When did your mom start getting the mouth sores and feeling very poor? My mom is on day 6 of the trial and so far doing okay.
Has anyone heard from NewfoundLake on how her mom is doing on this medicine?February 22, 2014 at 12:01 am #79131marionsModerator
Caroline…my husband had much success with Dulcolax suppositories. He did not however do well with anything taken orally, as it caused him severe pain. Not sure what the reason is for that however; we continued to try different things until we found something that worked well. I think that it is one of those trial and error situations. I hope that your Mom gets some relief real soon.
In regards to medical marijuana – eventually, I believe that other states will follow suit and join California, Colorado and what other state? Cancer patients should have access to it. You may want to ask the physician about Megace, a synthetic version (somewhat) of marijuana. The physician will have to prescribe it and some patients really benefitted from it as well.
Most of all, I would encourage your Mom to eat whatever her heart desires. She may also be hesitant due to her constipation hence, I would try to solve that issue first.
Keep trying, dear Carline, somehow you will find the answers.
MarionFebruary 21, 2014 at 9:46 pm #79130
Thank you, Lainy and Marion.
Beth, thank you for posting about your mom. I completely agree with you — I wish the scan could be done monthly. After the first month, my mom said that she didn’t think she could endure another month. The quality of life on this drug definitely stinks. I sincerely hope this is not the case for your mom.
Marion, you were right about the constipation causing additional pain. I called my mom’s dr last night & she confirmed it as so. Since then, my mom has taken some gas-x and added miralax to the colace she’s already taking. She took as much as 300 mg of colace last night & this morning, but it hasn’t induced a bm yet. Do you think she should increase the dosage or wait it out? She took some senna once before but it caused horrible cramps, so she’s afraid of taking it again even though the dr thought that she might try adding that to colace and miralax. I know a lot of you recommend milk of magnesia on this board but since it wasn’t part of the dr’s recommendation, we’re holding off on that for now.
Based on what my mom’s going through, I wish we had done more to prevent this. Here’s what I found that might be helpful for others. There’s a section called “MD Anderson Cancer Center Algorithm for the Prevention of Opioid-induced Constipation.”
Another side effect that my mom’s struggling with a lot is her loss of appetite. I wish it was easier to get medical marijuana in New Jersey. Does anyone know what Sloan-Kettering (MSKCC)’s stand on it is?
CarolineFebruary 21, 2014 at 6:29 pm #79129
I am so sorry to hear this news. My mom took her first dose of Cabozantinib last night. She is really concerned about what the side effects may be. And you are right, it is so hard to know if it is the drug or the cancer taking its course. Although it sounds like the mouth sores is definitely drug related. My mom has already decided that if the medicine makes her extremely sick than she won’t continue. Her thought is why prolong the inevitable and be miserable doing it. Hard for me as I selfishly want her around as long as possible. I hope she at least makes it through two cycles and has the CT scan to see if there is any progress. I wish they would do a monthly CT scan!
Good luck to you and your mom and keep us updated. I will post updates on my mom as well as she gets further into the study.February 20, 2014 at 4:38 am #79128marionsModerator
bananafish….so sorry to hear of your Mom’s pain and other issues. We have no reports on this drug so I thought to look up the common side effects of Cabozantinib and found the following:
• Mouth sores or pain
• Hand-foot syndrome (redness and pain in the palms of the hands and the soles of the feet)*
• Weight loss
• Loss of appetite
• Feeling tired
• Changes in how things taste
• Graying or loss of hair color
• High blood pressure*
• Pain in the abdomen (belly)
• Feeling weak
• Voice changes
It is marketed by Exelixis:
For mouth sores: biotene spray may be of help. Constipation may also be causing the pain your Mom is experiencing as it is listed as a side effect of Cabozantinib as well as it is a bothersome side effect of opioids.
You would want to make sure to mention this to the physician, as he/she may want your Mom to take laxatives for regular bowel movements.
The sensitive skin may very well be related to hand and- foot syndrome. You would want her to use balm, lot’s of it.
Your Mom should be well tended to while undergoing the clinical trial hence, do not let up; side effects need to be addressed. Any question, any uncertainty – your Mom should have the ability to reach out to the medical personnel.
Please keep us posted; we care.
MarionFebruary 20, 2014 at 3:06 am #79127lainyParticipant
Dear Caroline, I am so sorry all these things are happening to Mom. Can the ONC try a different pain Med. I know things work different for different people but my Teddy was always on Morphine starting out with lower doses and increasing as needed. He was lucky in that the Morph worked very well for him
without side effects. I feel bad for your Mom as she is going through so much it’s not fair to have the added krap! (Not so sure I can say that word) but that is what it is, for sure. Wishing Mom better days ahead she sure deserves them.February 20, 2014 at 2:33 am #79126
My mom started her second cycle (or second month) on Cabozantinib yesterday (2/18/14).
I’m not sure if what she’s been experiencing is from the cancer or the drug, but she is not doing well. She says she feels worse now than she did during her worst days on the gem/cis chemo. Her biggest concern is the increased pain, for which the dr is recommending a higher dosage of OxyContin. She started on 10 mg of Oxycontin in the morning and 10 mg at night, with 5 mg of oxycodone for breakthrough pains. She was starting to take as many as 20 mg of oxycodone, so her dr increased the Oxycontin dosage to 20 mg in the morning and 20 at night. But she felt so out of it today as a result that she thinks maybe she’ll go back to the old routine.
Her other major concern is tiredness and low energy. She isn’t able to do much at all. Getting about 30 minutes of very low-intensive exercise takes so much effort.
Other side effects she’s experiencing are oral pains/mouth sores, sensitive skin on hands, shaky hands, loss of appetite, and change in taste.
I just came back from visiting her and taking her to the dr appt, and my heart is breaking over how much pain she is in.
Her lab work was still within acceptable range that they decided to start her on cycle 2. But her white blood cell count was the lowest it’s been since she started taking the drug.
I had to take a break from the discussion board so that I could turn my attention back to my long neglected work, but I’ve been thinking of you often. I wish I had better news to share with you all. I guess we won’t know until the CT scan in March whether or not the drug is working. The nurse practitioner did tell us that sometimes tumor death could also cause pain, so pain isn’t always a sign that a treatment isn’t working. I sure hope that’s the case.
CarolineFebruary 11, 2014 at 8:31 pm #79125newfoundlakeParticipant
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 haveFebruary 1, 2014 at 2:14 am #79122jscottMember
I am starting to compile a list of clinical trials who have Cholangiocarcinoma patients participating in them.
This is only the third one I added, but it is a start
Check it out here:
If you click on the Cabozantinib trial link, you can see the information I included from a quick forum/web search. I couldn’t find any other first hand patient information, but I did find some research papers on the drug.
If you are aware of other research, or want me to update your mom’s experience reported on the wiki, please let me know. (You can even edit the wikipage yourself if you are feeling up to it…it’s easy!)
I am trying to make a webpage where CC patients can go and get a consolidated look at various trials that may be of interest, as well as see how actual patients are getting on. Eventually, I am hoping to move the wiki page to these forums, but when and if that will happen has not been decided.
In any event, thank you very much for letting us know how this trial is going. I am sure it will be very helpful to future patients considering this drug / trial.
JasonJanuary 31, 2014 at 9:24 pm #79124nikki4470Participant
The plan is to go ahead with the consultantation/mapping and then the actual procedure two weeks later. This is all dependent on whether or not we receive the out of state approval from his insurance company. The company, Sirtex (http://www.sirtex.com/us/), has representatives that help you with the insurance approval and they said that if we can’t get the approval, then they do have Doctors in Massachusetts that they highly recommend. So, if it doesn’t work out with Dr. Moeslein, then hopefully he can continue with the treatment here in Massachusetts with another Doctor. We really want to see Dr. Moeslein though because we trust him immensely. Yes, they recommend Xeloda in conjuction with radioemobolization.
If you ever want to talk to people that have had Sirtex, you can visit http://beatlivertumors.org/SIRT_Info.html and reach out to Suzanne Lindley. She has an amazing story and has put me in touch with other amazing people that have survivor stories because of their experience with Sirtex. Lisa Craine (from this board) was kind enough to put me in touch with Suzanne (and for that I thank her up and down)!
I completely know where you are coming from in terms of second guessing your decisions and trying your best to make the right ones. A lot of things I also learned in highsight, but I have to keep telling myself that we can’t look back only forward. My biggest advice is go with your gut and as my dad says, listen to your body.
NikkiJanuary 31, 2014 at 8:52 pm #79123
Thank you for all the positive feedback about the post!
Nikki, I’m so glad you wrote. Are you going to see Dr. Moeslein at Univ of MD? I hope your dad has excellent results with the treatment! It sounds like your dad and my mom were given similar options and they chose differently. I hope each treatment works out for them both.
We also got a second opinion from Dr. Moeslein from Univ of MD (I got his contact information from one of Percy’s posts, and Dr. Moeslein was wonderful about getting back to me IMMEDIATELY). He offered my mom a similar treatment to what your dad will be getting, and what he offered made me feel really hopeful. He was actually not too thrilled about Cabozantinib, though he did make it clear that he didn’t know too much about it. He thought a clinical trial was something more suited for my mom down the line, and he thought since the disease was mainly in the liver, she should get radioembolization to go after it aggressively. So he recommended radioembolization and chemotherapy.
I ran Dr. Moeslein’s proposal with the doctors at MSKCC, and based on their responses and our meeting with the doctors at MGH, we decided to try the drug.
I already mentioned in another post that I also contacted Dr. Javle at MD Anderson, and he said his enthusiasm for Cabozantinib was “moderate to mild.”
Even despite these lukewarm to cold responses, my mom decided to try the clinical trial, mostly because we were told from the beginning that given the rarity of cc, there was no chemotherapy specifically designed for it and that at this point, what my mom needed was systematic treatment, which would have been chemotherapy and now possibly this drug. Do I feel 100% certain that this is right choice? I’m thankful no one’s asked me that question. And I still wonder if radioembolization first then the clinical trial would have been better. But as all of you can probably concur, we make the best choices we can given the information we have and given the circumstances.
Also, most importantly, I have to keep reminding myself that the decision to choose the clinical trial over other treatment options was ultimately my mom’s. I think Lainy responded to one of my previous posts and said in her characteristically empathetic way that she was glad she didn’t have to make these choices. I felt exactly the same way with my mom when she was told that her next course of treatment would be another chemotherapy after the first line didn’t work. I’ve been doing the research but it has been up to her to make a series of difficult choices based on that research. I think she’s at peace with the clinical trial, especially given the ease of just taking three pills once a day.
Thank you for all the well wishes for her on the trial. I will share them with my mom, and I will keep you posted on her progress.
Oh, and my mom’s other supplemental treatment option was to get her nerves neurolized (?) to help with the pain caused by the tumor. This treatment option was offered by Dr. Kahaleh at Cornell Medical College in NYC, another bright ray of sunshine offering hope. He even offered to do the treatment the day before we left for Boston for the trial! My mom didn’t feel up for it, so we decided to save it for another time.
CarolineJanuary 31, 2014 at 6:37 pm #79121nikki4470Participant
Thank you for the update. We still have this on the back burner, but haven’t forgot about it. I am very intrigued to hear how your mom progesses. I have read very good reports about this drug, but there isn’t too much data on how it works with CC, so I am excited to hear how your mom does. Dr. Zhu is amazing. My dad is continuing on F5U and is now in the process of obtaining out of state approval for SIRT (Y-90, radioembolization, Sirtex, Sirspheres) at the University of MD. I wonder if he can participate on this trial after the treatment (although they do reccomend F5U in conjunction with SIRT)? I will have to ask. I am happy to hear it is a pill and that your mom is handling it well!
For everyone’s reference, this is also referred to as XL184.
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