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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.

Caroline

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.

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?

Caroline

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.

Caroline