NETs growing despite 3 months of capecitabine and temozolomide

@tomrennie
Oh gosh. Side effects.

What is the typical dosage for capecitabine? I heard 3 pills in morning and 3 in evening but I am not sure if mg per pill or per day. And how long are you on this drug? Still waiting to hear from specialty pharmacy since we had a snow blizzard in northeast.

@briana311
I think dosage is dependent of weight and possibly other factors. They told me they needed to do a detailed calculation. I don’t recall my dosage.

@djchambers
They also said they can change dosage based on side effects.

The IV capecitabine I’m going to start is going to be lower dosage but it’s paired with another drug to make it more likely to be effective.

There’s also another combo where it’s a higher dosage but given less frequently. But that’s not what they recommend for me n

@briana311 I took three 500mg tablets in the morning and two at night. A cycle is two weeks on and two weeks off. I also took temozolomide from day 10 through 14 for the first 13 cycles. After about the seventh cycle, the capecitabine was lowered to two in the morning and two at night. The doctor thought it was working well and wanted to see if the lower daily dosage would be just as effective and easier on my body. It was fortunately. I still take two in the morning and two at night. That seems to be the magic dosage for me. I will be on it until it stops working or until something better comes along.

I am originally from Philadelphia. My family has been sharing pictures of the blizzard. I live in the Arizona desert now.

@tomrennie
thank you all, so helpful. The pharmacy called her and as of now the dosage is three 500 mg in morning and three 500 mg at night. Just capecitabine for now and see how that goes. She is 118-120 lbs so I am a bit nervous reading and hearing about side effects esp since she tolerated the FolFox pretty well (tired, constipation, thinning hair).

@briana311 Here is a link that gives you a lot of info on capecitabine from Mayo's website:
https://www.mayoclinic.org/drugs-supplements/capecitabine-oral-route/description/drg-20062501
I want to point out two things:
- Capecitabine is used for multiple cancer types. It has effectively controlled my NETs pancreatic cancer and squamous cell skin cancer.
- There are dosage formulas provided in the link. There seems to be a different recommended dosage for the different types and locations of cancer.

I have read a lot of posts and comments on Mayo Connect from patients with NETs, pancreatic cancer, colon cancer, rectal cancer, squamous cell carcinomas on various body parts, and breast cancer. I have learned two main things during my years of living on capecitabine that most others seem to confirm during their capecitabine journeys:
- The daily dosage milligram amount directly impacts the number of and severity of side effects.
- The length of time between cycles directly impacts the number of and severity of side effects.

The information varies, depending on your sources, on how long it takes capecitabine to leave your system. The most common belief is seven days. I feel the most "crappy", the technical term my oncologist and I use to describe when I am most impacted by side effects, during the last three days of a 14 day cycle and the three days after. But, I have also set off an airport body scan 10 days after completing a cycle. The scan lights up exactly where most of my cancer is on my pancreas, liver, and pelvic bones. My point is that the body needs time to recover between cycles.

There is a lot to look through and process. I am am trying to simplify something very complicated from my experiences. I have learned though, fighting cancer is like trying to eat an elephant. You can only do it one bite at a time. But, you have to have the desire to eat the entire elephant and the patience to do it. It takes a lot of time. Your thoughts?

@tomrennie
Thank you so much, this was so helpful. She is starting on Capecitabine on Monday. 14 days on and 7 days off. 🙏

@briana311 I am glad. Is your relative seeing a NET specialist?

@tomrennie Can I ask you when you were diagnosed, what grade and where NET originated ( just re-read above and you stated pNET so started in Pancreas) and has it metastasized? You mentioned you were on CAPTEM for 13 rounds was this the first treatment? Also you state reduced dosage of capecitabine did you start at a higher level and Dr reduced due to side effects? What is your dosage? You are on 2.5 years what are side effects? My relative took 1 round of capecitabine 3000mg/day (after 12 rounds of Folfox) and side effects have been difficult — mouth sores, hand foot syndrome and rash on chest ( both of these have improved a little), abdominal cramps with nausea/vomiting and diarrhea, 8-9 lbs weight loss in 6 days, neuropathy in hands and feet (probably from Folfox although I don’t know if Capecitabine is making it worse since it keeps progressing vs getting better). Seeing Dr tomorrow, I doubt they will want to continue with this drug but maybe a lower dose would help or another regimen? What was the dosage when you were on CapTem (for both drugs)? I do not believe these are functional NETs so no real hormonal issues which a lot of the treatments work toward alleviating. Thank you

@briana311
I was diagnosed two years ago. The primary was near my small intestine. The biopsy showed it a lower grade, but after surgery, it was determined to be a grade 3 well differentiated. This fall I was diagnosed with a reoccurrence. as a tumor near where the original site was as well as one in the liver. A liver biopsy confirmed again that it’s grade 3 well-differentiated.

I did three rounds of capicitaben and temlizide. I had a lot of G.I. symptoms, severe pain in my esophagus and colon spasms. Because of low blood counts, low platelets, first cycle low white blood count second cycle they reduced the democide in those cycles.

Now I’m on second cycle of fol fox. The neuropathy in my hands has been my primary complaint, although I have pain in my joints in particularly my jaw and thumbs.

I’ve just discovered from a bone scan that I have osteopenia. Previously, I had excellent bone health.