yellow77rose
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Kristin,
I am also in the Boston area. My mom just started a clinical trial at MGH with Dr. Zhu, he seems to be very knowledgable and has lots of experience with bile duct cancers. If your dad does come back up here, perhaps it would be worth trying to get him seen by him or one of his colleagues?
My mom got second and third opinions (including Dana Farber) when she was first diagnosed and they all told her that MGH is the best hospital in New England for dealing with liver cancers as they have the most experience.
If you need anything or I can help in any way, please let me know.
Take care,
BethCaroline, 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?
Hello Caroline,
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.
