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Congrats, Lainy! I’ve missed seeing your smiling face, and it’s wonderful to come back to the boards to your wonderful news!
I can’t reiterate how thankful I am to you for all your support this past week. I couldn’t have gone through the process without you. The idea of my mom checking out Teddy’s Italian restaurant when she’s done visiting with her parents makes me smile & brings me comfort. Thank you.
After fighting cc bravely for the past eight months, my mom passed away on Thursday afternoon. A devout Catholic, she probably chose the day of the Ascension of the Lord during this Easter season as the day to go. She was surrounded by her loving husband, son, daughter-in-law, son-in-law, and me, her daughter during her last days, and we sent her off with so much love and gratitude for everything she’s given us.
Her funeral mass will be next Wednesday at her old church. I can’t believe she is gone. I am sad, of course, but I also feel so honored and grateful to call myself her daughter. She was amazing right up until the end. To all the sons and daughters who lost their beloved mother or father to this disease, my deepest sympathy. What people have been telling me is true; nothing prepares you for the loss of a mother.
I wanted to write as soon as I read your post on your mom’s passing, but I haven’t been able to take the time. I’m so sorry for your loss. My mom was getting treated at MSKCC in Basking Ridge maybe right after your mom started getting treated in Manhattan. I always felt closeness in reading her posts because they sounded like my mom could have been writing them. She was such a kind and gracious person, and always had encouraging and candid responses for me when I asked her questions directly.
I know taking your mom to the appointments in the city couldn’t have been easy (I did it just a few times procedures & meetings with the surgeon, and the drive — not to mention the parking — always felt like such an obstacle course), but I was glad for your mom that you were there to do that for her. My mom’s in hospice now and may be joining your mom soon. I’ll tell her to look for Mary.
My warmest thoughts are with you and your family.
I am so sorry to hear about your mom’s pain. I’ve been thinking about you and wondering how you and your mom were doing after the clinical trial. I’m praying for her comfort and your strength and peace.
My mom now spends most of the day sleeping with no food and little fluid. But the days since my last post were such a blessing. A week after getting to LA, my mom felt good enough to suggest an outing to Santa Monica so that she could see the ocean and walk by the beach. We walked for good 40 minutes before she started feeling tired. Every day, she woke up amazed that she was still feeling good. Her appetite was excellent, and she ate everything we gave her with great relish. Each and every day was such a gift.
Then last Thursday, she started spending more time in bed (the night before, she surprised us by wanting to take an after dinner stroll outside, and the entire family had an impromptu outing around my brother’s neighborhood). My best friend lives in LA, and she was supposed to come over with dinner (she had been coming by almost every day with food since we came to LA). I thought my mom would sleep through my friend’s visit, but right before she came, my mom woke up and went out to the living room to wait for my friend. When my friend came, my mom was funny, lively, and gracious. My friend and I took pictures with her and even took her for a quick “walk” around the living room. After about 30 minutes of that, my mom got tired and allowed my friend and me to take her to bed. Since then, my mom’s had less and less energy. She took one bite of the extravagant lobster dish that my friend brought. That was her last solid food.
I have been guided through this process by the angel of this site, Lainy. I couldn’t be doing any of what I’m doing without her support and guidance. On Friday, she asked if my mom could be waiting for someone. I said it could very well be my husband, who was still in Atlanta (and sort of in denial that my mom was not going to get better). So my husband flew out on Saturday, getting here that night. Before he came, when we told her he was coming, my mom would ask when he was coming whenever she woke up. At one point, she said, “He was just here. He was right there, wearing a blue t-shirt.” I asked my husband what he was wearing that day, and he said a white t-shirt earlier but that he had changed to a blue shirt (but not a t-shirt) for the flight. This confirmed to me that my mom is in the process of passing to another world, not confined to the physical and explicable. And when my husband finally came, my mom was beaming. She told him she missed him and had been wanting to see him. That was perhaps her most sustained lucid moment since Thursday.
She does have fleeting moments of clarity though. Yesterday, she wanted to sit up when my brother and I were changing her position to prevent bed sores. She sat up and told me thank you after giving me the most beautiful smile. She also told us on another occasion that she was ready to accept everything. And I’ve been talking to her constantly, thanks to Lainy’s advice. I’ve been telling her that she’ll always be in our hearts and with us in spirit. I told her that she is our leader and that the leader always goes into the unknown first to explore. I told her we would certainly see each other again and asked her to be with us always. In response to all this, she’s been nodding and sometimes smiling (she smiles every time I tell her she’s going to see her mom & dad).
Because of all this, I am amazed by my mom each and every day. But I think it’s getting to be harder and harder for her, so I’m praying for her to finish this process soon. I’ve seen the dying process compared to the birthing process, and I think the simile is perfectly apt. We’re all well wishers and witnesses to her passing to a new life.
There are other factors involved in this process that has made it easier and more difficult at times, particularly concerning our experience with different hospices (we’re on our third hospice; we had one in NJ which was wonderful, then had to switch from the first one in LA because they were egregiously incompetent). I will write another post on that some other time, as I think it’ll be helpful for others in a similar situation.
Thank you everyone for your loving thoughts. I’m so grateful for this site and its bringing Lainy into my life (I’m writing this update post because she suggested it). Please continue to pray for my mom.
Thanks so much everyone, for being rock solid in your support whenever I come for help on this board. Lainy, I do have some specific and personal questions, so I’m going to email you privately. Much love to you all.
I am a daughter like you caring for a sick parent. I can only imagine the bombardment of emotions you must be feeling right now. Please don’t let guilty be one of them. You are doing everything you can. What you’re going through is really rough. I am praying for peace for you.
Dear CF friends,
My mom’s scan results from today were not good. She didn’t respond to Cabozantinib either (for those not familiar with my mom’s case, she also didn’t respond to Gem/Cis chemotherapy, which is how she qualified for this clinical trial in the first place). The cancer has spread and there are now tiny spots in the surrounding organs in addition to the original tumor in the liver (which actually shrank a little on one side but got bigger in another). She also has more affected lymph nodes that have also gotten bigger.
She is, of course, going off the trial. They recommended FOLFIRI or FOLFOX in addition to local radiation therapy for her enlarged lymph node by her neck (which doubled in size). We are taking it easy today and will weigh all our options tomorrow. My mom said she feels really bad for the family — especially me — for letting us down. I told her nothing compares to what she’s had to endure because of the disease and that we’ll find another treatment that works for her.
Dr. Goyal mentioned attending a conference on cc in Salt Lake City and said that it was sponsored by the Cholangiocarcinoma Foundation. I felt extremely grateful to be a part of the group fighting tirelessly to find an effective course of treatment for this disease.
I asked the Dr. Goyal about immunotherapy as an option for my mom. She and Dr. Zhu are in the process of applying for a clinical trial on immunotherapy for cc patients at Mass General. She said it probably won’t be available until about six months later. She also told us about ongoing clinical trials on Nivolumab, which is a form of immunotherapy. I just looked this up, and here is more information:
I just searched for Nivolumab, and not surprisingly, Percy and Willow have already posted on it on this site. Good work, you two!
I was very down when I started writing this post, but I feel better and more optimistic about moving forward now that I’ve shared the news with you all.
I agree with the other posts in response, but I also think Ben is raising a valid concern. There are unethical employers out there who would not hire and even fire employees with cancer. Also, when I googled “cabozantinib” recently, it was a little unnerving to see my posts on this board pop up. I’m more than happy to share my mom’s information for the benefit of the members on this board (and anyone else with this disease), but it was a cautionary reminder that anything I put out there (or here) is up for everyone to see.
I just got my mom’s latest CA 19-9 count, and it’s the lowest it has ever been since the initial diagnosis (42!). But her CEA is way up and it’s the highest it’s been. The medical team is perplexed too, and we’re told that we won’t know what’s going on until the scan. I’ll post an update on the Cabozantinib post if I get it sooner than you do.
This is such great news!! Thanks to Robin for sharing it with us, and thank you Lainy for being CANCER-FREE!!!
My mom tried honey for her oral mucositis and it helped quite a bit. I know she was told to stay away from honey when she was getting chemotherapy from Sloan-Kettering, so you may want to check with your dr before using it.
Here are some studies related to honey & oral mucositis:
Oh Lainy, I’m so sorry to hear this news. I’m glad your daughter is close by and will give you support when you need it. I’m praying for you and sending you much love and positive energy.
A big hug,
I’m answering my own question here.
These are the questions I asked my mom’s medical team:
What does it mean that my mom’s genetic testing came back with no mutations? Does that tell us anything about what treatments are more effective than others for her? How does that figure into the trial on Cabozantinib? Does the test result affect the possible efficacy of the drug on my mom?
Here’s their response:
These results have no impact on her current trial, either candidacy or efficacy. It simply means her tumor has no specific mutations. This is neither good not bad. And it really doesn’t direct or guide future treatments other than to say she would not be a candidate for a trial using a drug that targets a mutation she doesn’t have. We can discuss more at her next appointment. But bottom line it has no immediate implications on her treatment.