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Neuroendocrine Cancer Community


My Experiences With CAPTEM Chemotherapy and 10 Tips

I was diagnosed with Lung Neuroendocrine cancer in February 2021. This was my second cancer diagnosis in less than five years. It all started with an incidental finding after a surveillance MRI scan in October 2020 following my breast cancer diagnosis and treatment in 2016.

I was told I had a small nodule in my right lung which was probably a breast oligometastasis (the intermediate stage between locally confined disease and widespread distant metastases).

After a long-winded process during the COVID pandemic, I eventually had a biopsy which confirmed the nodule’s true neuroendocrine nature.  Following two major surgeries in 2021, in total I had my right lower lobe and a wedge of my right middle lobe removed. I was then told the bad news that the lung nodule was an ‘Atypical Carcinoid’ and I had positive lymph nodes after both surgeries with evidence of extra-nodal spread into the lymphatic system. My neuroendocrine cancer therefore had a very high risk of recurrence.

Following recovery from surgery, my oncologist gave me the option to take CAPTEM (Capecitabine / Temozolomide) chemotherapy. I am a Scientific Researcher by background, so naturally I began to do my own research.

There are no set guidelines for what to do in nodal positive Atypical Carcinoid / Neuroendocrine lung primary disease, only recommendations. After careful consideration, I decided to start a 6-cycle course of CAPTEM. Each cycle lasted 4 weeks and involved 2 weeks of tablets followed by 2 weeks off.

For the first 9 days one takes Capecitabine only, but the remaining 5 days (Days 10 to 14) Temozolomide is taken in conjunction. It was a rollercoaster for me and what follows are some tips and experiences which perhaps may help someone else:

  1. Writing a medication timetable

I had a lot of tablets to take, and these needed to be taken at precise times of the day. Some had to be taken with food, some without. Some tablets needed to be taken at precise times before other tablets. It was all a lot to remember. I therefore wrote a chemotherapy medication chart, a timetable of all the tablets. I wrote every single tablet I had to take and precisely at what time. Every time I took a tablet, I crossed it out with a highlighter so I could clearly see what I had taken and not get mistaken. I also set my smart watch to vibrate every time I had to take a tablet. In addition, I also kept a meticulous diary of my symptoms and how I was feeling each day so that I could relate events back to both my oncologist and clinical nursing team at the end of each cycle. It is important to do this as one easily forgets things. You can Google medication charts and download a template, but I drew my own up on the computer. The chart allowed me to manoeuvre life events around chemotherapy and I could clearly see what dates could be affected by my treatment and therefore plan accordingly.

  1. Curbing nausea with anti-constipation tablets (yes, really…)

Having previously had breast cancer chemotherapy, I thought the side effects and experiences would be similar and was secretly hoping the CAPTEM side effects would be less severe as this was a tablet regimen unlike my IV (intravenous) breast chemo. How wrong I was. No person is the same and everyone reacts differently but for me, my main problem was severely debilitating nausea. I have read that CAPTEM is generally extremely well tolerated by the majority of patients so please don’t regard me as the norm. Some patients have taken CAPTEM for years and only experienced a bit of tiredness. However, for those like me, prone to nausea it really was tough. In fact, my nausea was so severe that on one occasion I vomited 18 times in a day.

Nausea from CAPTEM generally peaks on the Temozolomide days. It is imperative to take Ondansetron (prescribed by your team) 30mins to 1hr before your Temozolomide even if you don’t suffer regularly from nausea. Most people only take Ondansetron once a day, but I took it twice; once in the morning and once before my evening Temozolomide. I decided to take my Temozolomide before bedtime so that I would sleep through the worse of the side effects. In addition, I was given various other anti-nausea medications the team could think of, which helped to some extent but did not eradicate the problem. In particular, I had a strong metallic smell that was omnipresent all times of the day and wouldn’t disappear. Prochlorperazine that one places under the lip helped a lot. The key was to spread all the anti-nausea tablets throughout the day every few hours and my medication chart was invaluable in the planning of this.

The first cycle was the worst in terms of nausea. The second, third and fourth were bad but my body was slowly adapting to the treatment. However, a surprising finding on my fifth cycle was that by increasing the anti-constipation medication, this drastically helped with the nausea and was a game changer. By liberating my bowels more frequently the nausea diminished. It was still there but it was marginally better. I wish I had been prescribed the extra medication earlier. So, if after your first cycle you are extremely nauseous…up the anti-constipation drugs accordingly (check with your team, of course).

Another trick to help with nausea was I avoided extensive mobile phone use as the bright screen and focusing on the device made me more dizzy. I sent voice messages instead of typing them. A life saver for nausea were chewy wine gum sweets and I carried them everywhere with me. Maynards were the best 😊. I also used chemotherapy / pregnancy sour drops (I used Queasy Drops which you can buy online) and very strong mints. I dug out my wrist sea sickness Sea-Bands and used those too. Everything together helped.

  1. Eating healthily but also what I felt like having

Regarding what I ate, I did not take vitamin supplements. I tried my best to eat a varied and healthy diet. However, when nausea was so debilitating, I also ate whatever my body felt like even if the food was deemed unhealthy. Anything was better than nothing. In my case this meant cutting down on coffee but upping the amount of cake! I stayed well hydrated but interestingly I noticed that during peak times of vomiting sometimes drinking too much actually stimulated retching particularly if I was constipated.

  1. Resting and exercising lots concomitantly

Another side effect of CAPTEM was extreme exhaustion particularly around the Temozolomide days. Here the best thing to do was to take many rests and naps during the day but at the same time to try to walk and move as much as possible. This sounds paradoxical but I guess my advice is to listen to your body and act accordingly for that moment. My exercise levels dropped drastically but I was extremely keen to keep my walking up. During the first cycles I made a point of walking in the local parks and hills. By the sixth cycle even going up the flight of stairs in my home a couple of times was beneficial. Moving little and often helped enormously together with making sure to take as many rests as possible. By the sixth cycle I was mostly sofa bound during Days 10-14 (the Temozolomide days) but it felt good to simply lie down and let my body work together with the chemotherapy.

  1. Taking care of mouth and skin

One side effect I did not have as much as I anticipated, was mouth sores. This was mild in my case. I did develop some strange feelings and sensations in my mouth, but I kept my mouth oral hygiene in tip top condition by brushing teeth regularly and using gentle mouth wash. What I did experience was a strange ridge (!) that formed in the inside of my cheeks, but this disappeared on my rest days at the end of every cycle. I was also told that I could develop hand and foot syndrome, but I did not develop this. However, I did regularly moisturise my hands with Udderly Smooth udder cream (containing urea) and this seemed to curb any redness or dryness.

  1. Being gentle with your hair

I was told that I wouldn’t lose my hair as with my breast chemotherapy, but that I could possibly see some thinning. In my case I did notice considerable thinning on the top of my scalp, but I doubt anyone else did unless I pointed it out to them. I avoided washing my hair too many times a week and therefore over drying it with a hair dryer. I don’t usually go to the hairdresser, but I suspect the less harsh hair treatments one has during CAPTEM the better. Now, a few months after my sixth cycle, I can see some slow hair regrowth and my scalp has a slightly thicker head of hair.

  1. Monitoring heart rate and if needed blood oxygen saturation and pressure levels

As the CAPTEM cycles progressed I developed irregular heartbeats and breathlessness. My smartwatch was again a life saver. I had bought it to measure my oxygen levels following lung surgery but the heart rate monitor feature on my watch was a simple and easy way for me to log and record my heart rates with rest/activity which again I could relate back to my team. I also had a finger pulse ox monitor since the COVID pandemic (one can buy them cheaply on Amazon) and a blood pressure machine at home. While these gadgets are by no means indispensable and do not replace your official hospital readings, when my heartbeat was irregular I could give actual numerical values to my medical team to help with any discussion.

  1. Using your hands as much as possible to alleviate peripheral neuropathy

This is a strange one. Some patients can develop peripheral neuropathy with CAPTEM. In my case this manifested itself as severe pins and needles in my fingers and hands but as the cycles progressed it also radiated throughout the entire length of my arms. At its peak I had the feeling of always wanting to shake my arms! This sensation waxed and waned but was generally present at a low-level intensity throughout my treatment. I am a keen crocheter and bizarrely I discovered that using my hands and fingers daily as much as possible gave some relief (plus crochet gave me extra added mental health benefits). Thus, keep using your hands as much as you can and keep moving in general.

  1. Signing up to support chat groups

Undergoing chemotherapy is a very scary and lonely process. I soon realised I was not alone. I signed up to several support Facebook groups: “Neuroendocrine Cancer UK Support”, “Neuroendocrine Cancer – Ronny Allan’s Group” and in particular “NETs Patients and CAPTEM”. The latter is primarily US based but there are several UK nationals like myself posting advice and questions on CAPTEM use. Another extremely helpful chat group I joined was specific to lung primaries and was the US based “Lovable Lungnoids” so it may be worth having a search to see if there is a support group specific to your primary site. CAPTEM might be mentioned in the chat threads there too.

  1. Taking one day at a time

As the cycles progressed the side effects of the chemotherapy in my case were certainly worsening especially the fatigue. My biggest tip is to not ponder and worry about when the cycles and chemotherapy will end. Instead, I constantly focused on the day I was in. I guess I was “in the moment” all the time. And I did the best I could to reach bedtime and then be in the best fit state I could be for the following day. Reaching the end of each day was all I focused on. Six gruelling cycles then slowly moved along and came to an end.

I hope the above is helpful to anyone about to embark on CAPTEM treatment. I do not know if CAPTEM chemotherapy has worked in my case to prevent recurrence. Only time will tell. However, should I need treatment again in the future, the tips above will certainly be invaluable to me, and I will now know what to expect a bit more.

Patricia Novelli

Atypical Neuroendocrine Lung Primary