January 13, 2014 at 7:47 pm #78386nikki4470Member
I’m glad I found your post, as my dad just recently had a second opinion at MGH with Dr. Zhu. I have also heard very good things about Dr. Hong. He reccomended what Dana Farber had reccomended which is FOLFOX. There is one catch though, my dad had an allergic reaction to one of the drugs in it (oxaliplatin), so he has to decide whether or not he wants to endure the 6 hour infusion going forward. They have to slow drip the oxaliplatin once you have a reaction to it. I’m not sure what the plan is if we do not go down that road. He is really just hating everything about chemo (as one should), so I’m not sure how much longer he will continue with infusion. The pills may be a better option for him.
I am interested to hear how the trial goes for your mom. We are in the process of figuring out whether to proceed with radioembolization. Given the fact that my dad is really upset about chemo, this may be a good alternative.
It is tough when you have to go out of state for treatment. I stayed in a hotel in NY during my dad’s surgery for over 2 weeks. It was very expensive. I am glad that you found an organization that will help you with expenses. I can walk to MGH from my office in 10 minutes, so I do count my blessings in that manner.
It sounds like you are just like me in terms of the reseach end of it. I spend countless hours gaining as much information as I can to give my dad the best options available.
Wishing you nothing but positive results!
NikkiJanuary 9, 2014 at 11:17 pm #78385lainyMember
Oh my gosh, Caroline, like its either feat or famine but it all appears to be good news. Easy for me to say as I DON’T HAVE TO MAKE THE DECISIONS. Just know that it is true, any decision you come up with is the right choice. Yep, I think staying in a hotel is a great idea. We were out of town when Teddy got hit with the Whipple but we stayed for a while in a hotel. He could walk inside in the long hallways, they had a pool and even breakfast. It sure took a lot off our minds. All I can say now is the very best of luck on what ever you decide and you have truly done your homework! We will all be anxious to see how Mom does on this and we expect great things!January 9, 2014 at 10:15 pm #78384bananaf1shMember
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.”
If 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.
CarolineJanuary 9, 2014 at 6:55 pm #78383jscottMember
Those trials look interesting. I did some quick research on Cabozantinib, and it does look effective in other cancers.
My understanding of conventional wisdom is that cholangiocarcinoma behaves somewhat similar to pancreatic cancer (I do not know if this is well supported or not although our first oncologist believed it). In any event, here was an interesting study looking at cabozantinibs impact on pancreatic cancer cells:
What I thought was noteworthy was
-The strong response of the cells to cabozantinib
-The long-term viability of treatment (cancer only slowly created resistence)
-Cabozantinib seems to re-invigorate Gemcitabine effectiveness
Of course there is a big gap between lab and clinic, but it did look promising.
If your mom does choose a clinical trial, please keep us up to date. Any information that could help dispel the great unknown of a possibile clinical trial would be very helpful.
JasonJanuary 9, 2014 at 2:27 pm #78382newfoundlakeMember
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.
NicoleJanuary 7, 2014 at 7:05 am #78381kris00jMember
I know that CABOZANTINIB has been mentioned. If you do a search you will find a little (very little) about it. But according to Regina’s post, it doesn’t have to be a trial setting for some insurance cos. so that may help.
Best of luck for your visit. I hope you will find a treatment option you are comfortable with.January 7, 2014 at 4:51 am #78380marionsModerator
Caroline….neither Percy nor I are in a position to advise on treatments rather, we try to stimulate thoughts and ideas to research further options. Therefore, I believe that your parents have made the decision best suited to their needs and I applaud you for supporting just that.
Not sure whether you have already done so, but these are the discussions I was able to retrieve by using the “Search” function in re: to Cabozantinib.
Hopefully others will come around and share some of their thoughts as well.
Please keep us informed. Fingers are crossed for a most positive visit tomorrow.
MarionJanuary 7, 2014 at 4:26 am #78379darlaParticipant
You definitely have a lot of support here and are connected for as long as you want to be. Good luck tomorrow and we’ll be waiting for your up date. Hope all goes well.
Love & Hugs,
DarlaJanuary 7, 2014 at 12:46 am #9350bananaf1shMember
In spite of Percy and Marion’s wise counsel, my mom and my family decided to delay my mom’s chemo on FOLFIRI for one week (maybe less) for a consultation at Mass General for two of their clinical trials. Our appt is tomorrow (1/7).
One trial is called Proton Beam Irradiation for the Treatment of Unresectable Hepatocellular Cancer and Cholangiocarcinoma (http://clinicaltrials.gov/ct2/show/NCT00976898?term=hong+proton&recr=Open&no_unk=Y&rank=5). The other one is called Study of Cabozantinib (XL-184) Monotherapy in Patients With Advanced Cholangiocarcinoma After Progression on First or Second Line Systemic Therapy (http://clinicaltrials.gov/ct2/show/record/NCT01954745?term=zhu&rank=17). Both are second phase studies.
Given that gem/cis didn’t work for her, my mom is leery of going on another chemo treatment, one particularly involving the placement of a port and a pump that she’ll have to take home for 48 hours. She likes the idea of taking pills better. But I reached out to Dr. Javle to ask for his opinion on Cabozantinib, and he said his enthusiasm for it is “mild to moderate” (he had more positive things to say about FOLFIRI). My medical ONC thinks it has potential, and I haven’t heard back from her surgical ONC yet.
I noticed that no one on the discussion board is on Cabozantinib, but I would greatly appreciate any feedback if you know of anyone who’s on it or who has gone through a consultation with Mass General for it. I also wanted to create this post for two other reasons. One, so that I can provide an update on our appt tomorrow in case anyone is interested or might be interested in the future, and two, so that I can go into tomorrow’s appointment feeling supported and connected.
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