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One more thing: I don’t want to sound like the voice of doom & gloom for Cabozantinib. If I haven’t mentioned this before, I was told that there are people who have been on the drug for three months; meaning, they had good results on their 2-month scans. So please don’t allow my mom’s experience to make you lose hope. Besides, my mom did remarkably well on gem/cis, and that treatment turned out ineffective, so we really don’t know how the drug is working for her. I’m not sure if this break will delay my mom’s scan, but it’s scheduled for 3/11 for now, and I will be sure to keep you all posted.
Hi Nicole and Beth,
Nicole, it’s great to hear from you. Thank you for the update on your mom.
As of today, my mom will take a break from Cabozantinib for a week. Her mouth sores got to the point where the pain from them was competing with the pain from the tumor. I guess she could have taken numbing medications for it, but given her overall condition, she decided to follow the NP’s advice and take a break for a week.
I will post updates on how my mom does during her rest week. We were told that she can simply stop — no tapering off necessary.
What you’re going through is really hard. I can’t imagine trying to juggle my mom’s illness with school. Having said that, I’ve spent most of my 37 years of life in school and am working in one right now. There are people at your school who care and who can help you. Let your professors know what you are going through (if you think it’ll be helpful), and as everyone has already said, get in touch with a counselor. Most importantly, know that you are not alone. My mom was diagnosed with cc five months ago, and I’ve been feeling quite unbalanced these days going from being very hopeful one minute to being inconsolably sad the next. I’ve never heard of anticipatory grief before coming on this board, but it describes exactly how I feel. Does it get easier and better? It must. Hang in there, Kristin. I’m sending you the warmest thoughts.
I’m so sorry to hear about your father’s recent diagnosis. For a second opinion, you might consider contacting Dr. Javle at the MD Anderson Center in Texas. His email address is email@example.com. When I contacted him, he asked for a case summary of history, pathology and recent and old scans in a couple of pages, as this would be a great time-saving help.
Also, since it’s closer, have you considered getting second opinions in South Korea? I’m Korean and have family there, and they’re supposed to be advanced in cancer medicine as well. But for myself, I’ve been looking into alternative treatment options offered there for my mom (in fact, I was looking just this morning, so it’s serendipitous that I came across your post now). There’s a place called BohyunDang Medical Clinic in particular that seems to emphasize a holistic approach to treating (and living with) cancer. I’m not sure how non-Korean speakers could or would fare at the clinic, but you might want to contact them and see. Their phone number is 02.501.8228, and the email address is firstname.lastname@example.org.
I love that you’re recommending a book in your introduction. Thank you. I haven’t read it yet but ordered it right away using smile.amazon.com (thank you, Jason!).
Hang in there, and let us know if you have any other questions. I wish you and your dad the very best.
Thank you for the update, Kris. I’m looking at all your old posts to see if my mom might want to look into the treatment you’re on. As it is, I’ve been telling my mom about your karaoke-therapy!
Lainy, you crack me up! I almost spat out my tea because the image of anyone doing karaoke lying across a piano is too hilarious.
About three nights ago, I called my mom to check in on her. She’s been sounding very out of breath and weak these days, but she sounded even more so than usual this time. So I asked her what was wrong, and she said she was brushing her teeth. That tells you how much energy she has these days on Cabozantinib. Earlier that day, she went to a local lab to get her blood drawn because her WBC had been low last week. I think that trip took a lot out of her, too.
Given how my mom used to be able to exercise at least 45 minutes every day before going on Cabozantinib, I contacted her drs and nurse practitioner at MGH to let them know of my mom’s condition. The NP said that her blood count actually looks better this week but if my mom’s having a hard time, she should stop Cabozantinib for a week and see if she feels better. My mom said no. She signed up for two weeks, so she’s going to see this through until the scan. So she’s still taking the drug.
In answer to your question, Beth, the mouth sores probably started around mid to late first cycle. She made a mistake of going to get her teeth cleaned because she thought the pain might be related to her teeth. She really regrets having done that. Her fatigue coincided with all the horrible weather in the northeast when she couldn’t go outside to get her exercise. So I would recommend that your mom keeps active as much as possible. I think people react widely differently to the drug, though. I hope your mom fares much better with minimal side effects. Oh, and my mom’s been doing a salt water mouthwash every day for the mouth sores, and that’s been helping.
It turned out my mom’s constipation wasn’t the main culprit for her pain. Her constipation is now under control (she’s been taking colace, miralax, and gas-x) but the pain continues. (Btw, her dr told her to avoid suppositories for now given her WBC count.) She started going back to her acupuncturist, and he’s been the best source of help for The Monster Pain, which is probably where her tumor is (my mom describes the pain as her innards being ripped apart).
I have already started looking into the next set of options for my mom. We were told that right now, the cancer that’s spread outside is greater than the tumor itself, so she needs systemic therapy. As far as I know, chemotherapy or drugs like Cabozantinib are her only options for that. My mom already tried the first line of chemo (gem/cis), and now this. Does she go back to chemotherapy? Or try another drug and face the possibility of more side effects? I’m not sure. I’m trying not to worry too much before the scan, but I also don’t want to be blindsided. My mom’s been mentioning a more holistic/alternative treatment as something she might want to pursue. I’m completely in support of that, too. I just want to see her pain-free, happy, and enjoying life. For much of the recent past, she’s been doubled over in pain or lying down.
She has another follow-up appt next week, so I’ll post another update then. My posts are always so long! I’ll try to be more concise next time. Also, Beth, if you want to email me privately, just click on my username and email me through the forum. Oh, and here’s something I learned recently: sometimes (actually, most of the times) it’s easier to talk to a nurse or doctor on-call during non-business hours. I called MGH multiple times over the weekend, and got calls back right away.
That is really great news, Porter! Here’s hoping for more good news at your appt next week!
Oh Lainy, you’re a model of grace and good humor. My fingers, toes, and everything else are crossed for a successful surgery & fast relief for you. Btw, is that Teddy on your profile picture? I miss seeing your smiling face, but I like the picture of Teddy smiling too.
Oh, and I gotta ask: how did the doc known you had a blue car??
I’m so happy for your bit of good news (though 44% shrinkage sounds like hugely good news!). I’ll continue to send positive thoughts for your dad. Keep us posted!
Thank you, Lainy and Marion.
Beth, thank you for posting about your mom. I completely agree with you — I wish the scan could be done monthly. After the first month, my mom said that she didn’t think she could endure another month. The quality of life on this drug definitely stinks. I sincerely hope this is not the case for your mom.
Marion, you were right about the constipation causing additional pain. I called my mom’s dr last night & she confirmed it as so. Since then, my mom has taken some gas-x and added miralax to the colace she’s already taking. She took as much as 300 mg of colace last night & this morning, but it hasn’t induced a bm yet. Do you think she should increase the dosage or wait it out? She took some senna once before but it caused horrible cramps, so she’s afraid of taking it again even though the dr thought that she might try adding that to colace and miralax. I know a lot of you recommend milk of magnesia on this board but since it wasn’t part of the dr’s recommendation, we’re holding off on that for now.
Based on what my mom’s going through, I wish we had done more to prevent this. Here’s what I found that might be helpful for others. There’s a section called “MD Anderson Cancer Center Algorithm for the Prevention of Opioid-induced Constipation.”
Another side effect that my mom’s struggling with a lot is her loss of appetite. I wish it was easier to get medical marijuana in New Jersey. Does anyone know what Sloan-Kettering (MSKCC)’s stand on it is?
I read all of your posts, and I know how hard you fought for your mom. The picture you took of her says it all. She looks absolutely beautiful.
I, too, am with you in spirit. My deepest condolences for you and your family.
With warm thoughts and much love,
I just read your reply to my post. Before that, I was about to respond to your post before my internet connection decided to go bonkers.
Anyway, now that I’m connected again, thank you so much for your usual helpful advice. And I’m so sorry to hear about your recent roller coaster ride! You are one of the most compassionate and loving person I have had the luck to “meet” on this site, and I’m sending you so much warm thoughts & hoping that you are well again soon.
With much love,
My mom started her second cycle (or second month) on Cabozantinib yesterday (2/18/14).
I’m not sure if what she’s been experiencing is from the cancer or the drug, but she is not doing well. She says she feels worse now than she did during her worst days on the gem/cis chemo. Her biggest concern is the increased pain, for which the dr is recommending a higher dosage of OxyContin. She started on 10 mg of Oxycontin in the morning and 10 mg at night, with 5 mg of oxycodone for breakthrough pains. She was starting to take as many as 20 mg of oxycodone, so her dr increased the Oxycontin dosage to 20 mg in the morning and 20 at night. But she felt so out of it today as a result that she thinks maybe she’ll go back to the old routine.
Her other major concern is tiredness and low energy. She isn’t able to do much at all. Getting about 30 minutes of very low-intensive exercise takes so much effort.
Other side effects she’s experiencing are oral pains/mouth sores, sensitive skin on hands, shaky hands, loss of appetite, and change in taste.
I just came back from visiting her and taking her to the dr appt, and my heart is breaking over how much pain she is in.
Her lab work was still within acceptable range that they decided to start her on cycle 2. But her white blood cell count was the lowest it’s been since she started taking the drug.
I had to take a break from the discussion board so that I could turn my attention back to my long neglected work, but I’ve been thinking of you often. I wish I had better news to share with you all. I guess we won’t know until the CT scan in March whether or not the drug is working. The nurse practitioner did tell us that sometimes tumor death could also cause pain, so pain isn’t always a sign that a treatment isn’t working. I sure hope that’s the case.
Thank you for all the positive feedback about the post!
Nikki, I’m so glad you wrote. Are you going to see Dr. Moeslein at Univ of MD? I hope your dad has excellent results with the treatment! It sounds like your dad and my mom were given similar options and they chose differently. I hope each treatment works out for them both.
We also got a second opinion from Dr. Moeslein from Univ of MD (I got his contact information from one of Percy’s posts, and Dr. Moeslein was wonderful about getting back to me IMMEDIATELY). He offered my mom a similar treatment to what your dad will be getting, and what he offered made me feel really hopeful. He was actually not too thrilled about Cabozantinib, though he did make it clear that he didn’t know too much about it. He thought a clinical trial was something more suited for my mom down the line, and he thought since the disease was mainly in the liver, she should get radioembolization to go after it aggressively. So he recommended radioembolization and chemotherapy.
I ran Dr. Moeslein’s proposal with the doctors at MSKCC, and based on their responses and our meeting with the doctors at MGH, we decided to try the drug.
I already mentioned in another post that I also contacted Dr. Javle at MD Anderson, and he said his enthusiasm for Cabozantinib was “moderate to mild.”
Even despite these lukewarm to cold responses, my mom decided to try the clinical trial, mostly because we were told from the beginning that given the rarity of cc, there was no chemotherapy specifically designed for it and that at this point, what my mom needed was systematic treatment, which would have been chemotherapy and now possibly this drug. Do I feel 100% certain that this is right choice? I’m thankful no one’s asked me that question. And I still wonder if radioembolization first then the clinical trial would have been better. But as all of you can probably concur, we make the best choices we can given the information we have and given the circumstances.
Also, most importantly, I have to keep reminding myself that the decision to choose the clinical trial over other treatment options was ultimately my mom’s. I think Lainy responded to one of my previous posts and said in her characteristically empathetic way that she was glad she didn’t have to make these choices. I felt exactly the same way with my mom when she was told that her next course of treatment would be another chemotherapy after the first line didn’t work. I’ve been doing the research but it has been up to her to make a series of difficult choices based on that research. I think she’s at peace with the clinical trial, especially given the ease of just taking three pills once a day.
Thank you for all the well wishes for her on the trial. I will share them with my mom, and I will keep you posted on her progress.
Oh, and my mom’s other supplemental treatment option was to get her nerves neurolized (?) to help with the pain caused by the tumor. This treatment option was offered by Dr. Kahaleh at Cornell Medical College in NYC, another bright ray of sunshine offering hope. He even offered to do the treatment the day before we left for Boston for the trial! My mom didn’t feel up for it, so we decided to save it for another time.
I so wish I had an answer for your question. Like LisaS, all I’ve got is a virtual hug. I’m also sorry to hear about your Florida trip. How did your treatment go today?
My mom has an acupuncturist in Warren, NJ (very close to Basking Ridge) whom she likes a lot, whom I also highly recommended (I have chronic shoulder pains from my work of sitting in front of the computer all day, and after a week of treatment from him while I was in NJ, I’ve been feeling much better). Email me through the forum if you’re interested. I could give him a call and see if he thinks acupuncture could help with the swelling.
Sending you positive thoughts for relief,