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Ah, got it. Well, let’s see if I can get any useful information from the dr anyway.
Thanks again!
CarolineHi Percy,
I also want to join in the chorus of thanks for this post. It’s really helpful and informative. My favorite part is that your liver test numbers are normal! I’m also glad to hear that your son accompanied you to the appointments.
Sending you warm & positive thoughts for more good news to come,
CarolineThanks so much, Marion! I just emailed my mom’s ONC. I was about to post an update on her experience on Cabozantinib, but I’ll wait to hear back from the dr and include that information in my post.
Big hugs back,
CarolineMarion,
This such a helpful & timely reminder. Does it also apply for trials that are still ongoing?
Caroline
Hi,
I was searching the site for information on smell of bile that I’ve been noticing on my mom recently, and I came across your post. As a daughter myself, I completely empathize with what you’ve been going through. Seeing my mom in so much pain has been one of the hardest things I’ve experienced, and it’s not something I would wish on anyone. I’m so sorry for the hard time you’ve been having. I’ve been dealing with taking care of my mom and the financial aspect of her illness as well. I know how frustrating and difficult all of it can feel. Please know you are not alone. I am sending so much positive and loving thoughts your way right now.
My mom had a catheter for a day and a half when her first stent surgery was unsuccessful. The first few bags were almost all blood (or so it seemed to me). The nurses and docs said that was normal. But both my mom and I were freaked out by the sight of it, and I understand how disconcerting it might be for your mom. I hope you find answers soon, and I hope your mom find relief soon.
Caroline
Thank you, KrisV. This is really helpful.
And Connie, my mom’s been feeling the pain exactly where you’re describing. Her PCP told her it was from the tumor in her liver. Maybe it’s something called referred pain? And my mom’s pain is definitely not psychosomatic either. She did find relief from the pain medications and acupuncture before she came to Boston. I hope you find some relief soon yourself.
Love to all,
CarolineJust to be clear, this is the timeline for her pain medication today:
7 a.m. 10 mg OxyContin
10 a.m. 5 mg Oxycodone
3 p.m. 5 mg Oxycodone
7 p.m. 10 mg OxyContin
9 p.m. 5 mg OxycodoneHi everyone,
I had to revive this post because my mom’s been in so much more pain these days. Her new ONC at Mass General decided to switch her pain medication to OxyContin from Oxycodone. The doc said my mom could still take Oxycodone for any breakthrough pain.
My mom started taking OxyContin last night, and it hasn’t really been doing much. So she took 5 mg of Oxycodone this morning (along with 10 mg of OxyContin). She started to feel pain again in the afternoon, so she took another 5 mg of Oxycodone. She then took 10 mg of OxyContin after dinner (around 7:30 p.m.). But she was worried that she won’t be able to sleep because of the pain, so she took 10 mg of Oxycodone before going to bed (around 9:30 p.m.). In all, that’s 35 mg of Oxycodone/OxyContin today. Is that too much? Does OxyContin take a while to be effective, especially for people who are used to taking Oxycodone?
My first priority is for my mom not to be in pain, but I also don’t want to put her in any kind of danger by pushing her to take more pain medication than she needs just because OxyContin might not work as quickly as Oxycodone does.
Any input from you all would be much appreciated.
(Btw, my mom started her Cabozantinib trial at Mass General yesterday. Today is her day two, and she hasn’t had any side effects from the drug so far. We go in for her biomarkers test tomorrow.)
Thank you,
CarolineI can’t agree with this post more.
When my mom was first diagnosed with cancer, she was in Nashville. She was told that she had adenocarcinoma with unknown primary after a liver biopsy. That prompted us to move to New Jersey, where she has been getting treated at MSKCC (Sloan-Kettering). Up until we saw Dr. Fong here, everyone (even at Sloan-Kettering) told us that her primary cancer was unknown. Dr. Fong confidently told us that she had cholangiocarcinoma even though he did not have any additional information. We were so grateful for finding the primary that we never thought to get a second opinion (his stellar reputation also made us trust him completely, and we would have done anything for him to perform a surgery on my mom).
When we got to Mass General for a second opinion after her tumor grew and her cancer spread, the doctors there told us something we had never heard before, which was that there was something about her biopsy report and CEA numbers that suggested that her cancer could be colon-related (my mom’s father had colon cancer as did her sister and half-brother). They are waiting for the pathology slides to make a more conclusive statement, though they said they are 80% sure that this is cholangiocarcinoma. We were also recommended to get a genetic testing in addition to the one that they are already doing for the clinical trial for Cabazantinib. (And based on the 80% diagnosis, we tentatively agreed to start her on Cabozantinib.)
Based on this experience, I’m realizing that yes, not only are hospitals businesses, but that their doctors and tests are also not infallible. This is why this forum is so invaluable. My family has been making the decisions that we think are the best based on the information that we have, mainly thanks to the tireless effort of many of you on this forum.
For those who are just starting on this journey, I would suggest, in addition to getting a second opinion, asking lots of questions. I for one am more than happy to answer questions off the forum about some of the more personal aspects of my mom’s experience so far — on getting treated at MSKCC, on getting gem/cis, the financial aspect of her treatment (which is rarely discussed on this forum), the emotional toll of the illness on the patient & family, etc., etc.
Thank you Percy for this post.
Caroline
Congratulations, Mary!!!! I’m so thrilled for you! What a lovely present before your vacation. I hope you have a fabulous time in Key West! My parents went last year and they loved it.
Here’s to even more shrinkage in 2014!!
Love,
CarolineHi Mary (mcwgoat),
I’ve been thinking about you and wondering how you’ve been. I’m sorry to hear Gem/Cis has been so rough. I’m crossing my fingers & saying a prayer for good scan results!
Love,
CarolineHi Mary,
My mom tolerated Gem/Cis pretty well for the first three cycles (she had four total). During the last cycle, she started experiencing much more pain and fatigue. She experienced nausea once during that cycle. She exercised almost every day during the treatment, and had it not for her ONC’s concern for her catching something on a plane, she would have gone to visit LA on one of her off weeks. I think the trip would have been good for her morale given that it would have happened right before she started experiencing some tough symptoms.
If this question had been posed for my mom at the time she was on Gem/Cis, I would have said, No way Jose Mom, you’re listening to the ONC and not going anywhere! But in hindsight, I would say, take a bucket of antibacterial wipes and sanitizers, go go go and have a great time!
Caroline
Thanks so much, Darla, Marion, and Kris.
Nicole, it sounds like our moms are going through very similar treatment options. It’s nice to meet you here, though I wish we had met under different circumstances.
Jason, thanks so much for the article. Mass General did a clinical trial of Cabozantinib on advanced pancreatic cancer and I contacted the prime investigator for the results, but I haven’t heard back from him. My husband did ask my mom’s new oncologist at Mass General about the trial and it turns out the drug was being tested on the very particular “Steve Jobs” pancreatic cancer instead of the garden variety type. Your article, from what I glanced at briefly, looks promising.
So here is what’s going on with my mom:
We had an appt with Dr. Lipika Goyal at Mass General on Monday. Dr. Goyal is doing the trial along with Dr. Andrew Zhu. I also contacted Dr. Thedore Hong for a proton beam therapy clinical trial at Mass General, so we were able to get an appointment with both doctors at the same time. Dr. Hong informed us that my mom is not a candidate for his trial because her cancer has spread. He, along with Dr. Goyal, recommended a systematic treatment over any kind of local therapy.
After Dr. Hong left, Dr. Goyal explained to us that my mom could have either FOLFIRI, FOLFOX, or CAPOX as a second line of chemotherapy but that she could also do the clinical trial for Cabzantinib. It’s a phase II trial and no patients will be on a placebo. My mom will be taking a 60 mg pill every day for as long as it works. She’s had some patients who could not stay on the trial because their cancer got worse. But she has patients who have been on the drug for as long as 3 months who are responding favorably. There are currently about 12 people on the trial and they could potentially extend or close it at 20. She said it’s not a “home run” drug but something that she would recommend for someone like my mom who’s generally in good health and is open to trying something other than chemotherapy.
After talking to Dr. Goyal, we decided as a family (using my mom’s preference as a guiding point) that chemotherapy is always there is this doesn’t work but that this was a good window of opportunity for her to try this. We also liked that she would be monitored very closely and could come off the drug if it’s not working. She would be scanned every 2 months.
We were also told that Mass General recently got approved for a grant from the Lazarex Foundation for people traveling from out of town to be on clinical trials. After filling out a short application, we were notified that we qualified to get reimbursements for lodging and other travel expenses incurred. This will be a great help, as the drive from Basking Ridge to Boston took 4.5 with just restroom breaks, and we are seriously considering getting an extended stay for my parents for the first three months when my mom will need to go to MGH every week (twice a week during the first week) for the first three weeks.
We ended up staying overnight to make our decision, then signed the consent form the next day. Her first appointment, when she will pick up the pills, will be January 21 (her last chemo was December 23).
But there’s a twist. As we were waiting to see Dr. Goyal to sign the consent form, I got a call from Dr. Michel Kahaleh from Cornell Medical College informing me that my mother also qualifies for another clinical trial that I inquired into. This one is called “Photodynamic Therapy for Palliation of Cholangiocarcinoma.”
http://clinicaltrials.gov/ct2/show/NCT01755013?term=kahaleh&rank=1If you do a search for photodynamic therapy on this site, you will see a post from Marion that has a link that has a presentation that Dr. Kahaleh did on PDT (Marion said it’s graphic and hard for most of us to understand, which is very true).
Dr. Kahaleh seemed confident that my mom wouldn’t have to choose one or the other trial; that she could do both and benefit from both. But Dr. Goyal didn’t seem to think so. So I think the two doctors might talk over this (with our consent). Since my mom won’t start on Cabozantinib until 1/21, Dr. Kahaleh asked what she thought about getting PDT next week. So now we’re facing that question and waiting on what Dr. Goyal thinks. I’ll keep you posted.
I’m rushing to type this, so please excuse any typos, etc.
Caroline
Wow, this is so helpful and timely. Jason, your filing system is nothing short of heroic.
Thank you!
Caroline
