yellow77rose
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They saw my mom’s tumor on scans over 2 years before diagnosis. She was critically ill from crohn’s disease/colitis that they didn’t bother checking out the “spot” until they were able to get the crohn’s stable. After about 2 years of no changes, the tumor got slightly bigger. That is when they did the biopsy and diagnosed bile duct cancer. With chemoemobolizations and systematic chemo it was relatively stable for the next 3.5 years. Then after a month-long break from the chemo, it spread like wildfire to her bones (leg and eventually her hip and rib-cage) and then her lungs. She did try a clinical trial and another chemo but when she discovered it spread, she said no more and passed just 3 weeks later.
My mom’s CC was slow growing. She is 3.5 years since diagnosis and up until the last few months has had a good quality of life.
Good luck to your mom.
Caroline,
I’m so sorry to hear about your mom. I will pray she has a peaceful journey. It must give you comfort that she is so happy being back in California.
My mom was admitted to MGH today. They are doing some tests but the cancer may have spread to her bones and lungs. She is so weak, in pain and unhappy. I wish I could trade places with her.
Thinking of you.
BethNikki,
Good luck to your dad. My mom is having a real tough time with the colitis/crohn’s. She has a scope scheduled for next week and until then, the cancer treatment is on hold. She has said many times living with crohn’s is worse than the cancer. She has been relatively symptom free from the bile duct cancer since diagnosis, 3.5 years ago.
Beth
Hello Nikki,
I just posted on the Cabonzantinib thread. My mom was in the hospital 5 years ago for a major flare up of colitis/crohn’s disease. The doctor’s couldn’t agree which it was. I think in the end they felt it was crohn’s. But she nearly died it was so severe and was admitted to MGH and was there for 3 months – almost unheard of! She’s been on everything from Remicade to Humira for the crohn’s and ironically the thing that kept it under control appears to the chemo she was on for the bile duct cancer. Well the chemo stopped being effective for the cancer so they stopped it the end of December and here we are 2 months later with a major flare-up of the crohn’s again. Dr. Zhu won’t put her back on the trial medicine until the crohn’s is under control an the GI doctor doesn’t have any solutions. It is awful as she is weak, miserable and stuck in limbo. Sadly, I think she is praying that she’ll fall asleep and won’t wake up. It is so hard to see.
When my mom was so sick in 2008 and 2009, my sister and I urged her to seek second opinions but my mom was stubborn and is a loyal MGH patient. So I think we have to respect their decision even if it isn’t what we would have chosen or what we think is best for them. Good luck to your dad and make sure you take care of yourself. Maybe a spa day is in order for you!
Hello NewfoundLake,
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.
Very sorry for yours and your kids loss. Absolutely devestating. Make sure you take care of yourself and accept help from others. I’m sure you have a lot of people that want to help and support you. I’m sure everyone on this site is praying and thinking of you also.
My mom faired well with the chemo embolizations. She was in pain and slept a lot for 4-5 days right after but then started to bounce back. She was fatigued but was still able to get out and do things.
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.
My mom has the BRAF mutation. Apparently this mutation is common in melanoma. Before starting the cabozatinib trial Dr. Zhu tried to get her in a trial of another medicine targeting this mutation, I think it was called Vemurafenib, but it was closed and unless she could pay out of pocket for the medicine ($13,000 per month) it wasn’t an option.
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.
