High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus

Final Results From All My Chemotherapy & Radiotherapy Treatments

Below are the final results of how various chemotherapy and radiotherapy treatments took care of my cancer in terms of what problems they removed, what conditions/sinuses they restored, what problems they left behind and what problems they gave me as side effects for example.

Chemotherapy Treatments - CYCLE #1

The Chemo - Cycle #1 - In days 1 to 2 of Cycle #1 I did not feel any pains or improvements. It was not until day 3 and onwards that I noticed very slight but significant improvements such as improved eyesight and less frequent headaches. My right nostril was also getting a few hours of airflow over days 4 to 7.

Energy Levels - Although tiredness was still a problem up until day 7, I did manage to get some cycling and walking done on days 4 to 7; struggling with fitness and energy levels on the first couple of those days. It was not until the 18th day and onwards of Cycle #1 that I felt my fitness and energy levels back to around 90%.

Bone Aches - With regards to the daily injections of Filgrastim (the medicine that helps to regenerate white blood cells) and the crippling bone aches and pains they gave me: Although those crippling aches and pains would only come on after taking Filgrastim for at least 7 days, they did linger mildly for another three days or so thereafter; lasting hours at a time, to the point I could hardly walk or stand.

Chemotherapy Treatments - CYCLE #2

The Chemo - Cycle #2 was more or less the same as Cycle #1 without the tiredness. In fact, Cycle #2 kept me awake for its first two weeks. The Filgrastim injections still crippled me by day 7 though and lasted for hours, days later.

Energy Levels - My energy levels improved slightly, with my exercise routines (cycling, treadmill and walking) becoming more frequent. And even though my cycling for example became more frequent, I still did not have 100% energy to cycle fast or push down on the pedals. So I could cycle (make the bicycle move), but at the same time did not get any real benefits from doing so; such as producing sweat, improving my circulation, building or maintaining muscle or losing or maintaining weight. Hence why I often asked myself "Why are you cycling?", especially when on a bad day I only had around 50% cycling energy.

The Tumor - My eyesight became much better because it would appear, at this point without another ct scan, that my eyeball was moving back into its correct socket position. I still got double vision, disorientation and so on, but on a much lesser scale. My reading prescription would also change on a daily basis whereby sometimes my reading glasses would work and sometimes they would give me blurred reading.

Chemotherapy Treatments - CYCLE #3

The Chemo - Cycle #3 was more or less the same as Cycle #2, but with even more days of sleeplessness. On some days I would only get 4 to 6 hours sleep out of a full 24 hours. And even those 4 to 6 hours of sleep would be broken, usually only getting 2 hours of light sleep at a time.

Energy Levels - By Cycle #3 I had worked out what each chemotherapy drug did and what affect each had on my mind and body in terms of energy levels, fitness, diet, tiredness, weakness and timings; so I was in a much better position to judge when and what to do in terms of house chores, shopping, hospital visits, travel and so on.

Appetite - Fortunately throughout Cycles #1 to #3 I managed to keep my appetite very well, eating and drinking what I wanted whenever I wanted; keeping my diabetes diet in mind all the time.

The Tumor - A part from feeling less symptoms and getting less problems, sinus and face wise, Cycle #3 and onwards was all about forgetting the tumor in terms of whether or not it was growing, shrinking or staying the same size; mainly because my physical face problems (i.e. the lump under my eye) had disappeared. So I just let the chemo drugs do what they had to do and took my pain killers as/when needed.

Chemotherapy (With Radiotherapy) Treatments - CYCLE #4

The Chemo - Cycle #4 was more or less the same as Cycle #3, but with more days where I could sleep for 3-6 hours at a time. I think this was more to do with my mind and body getting used to the drugs and less stress (accepting the reality of a possible 'bad news' outcome).

Energy Levels - By Cycle #4 I was not exercising as much, on purpose, because I wanted and needed to rest my body during the radiotherapy days. Radiotherapy was really zapping my energy each day, so I had to be extremely careful with exercise. So although I could still do 30 minutes on my treadmill every 2-3 days, I purposely stopped cycling in order to walk more. That is how I compensated for my lack of cycling.

Appetite - Unfortunately throughout my radiotherapy treatments my appetite changed drastically whereby I was forced to eat smaller meals due to ulcers and soreness forming on and around the throat and tongue areas of my mouth. Fortunately I was able to eat 4-6 smaller meals per day and therefore keep up my weight, energy, nutrition and protein levels. It was not easy though. I had to pick foods and drinks that were not citrus based, not crunchy (spikey/sharpe edged), not spicy and not bitter or sweet; among other specific criterias. I also had to blend my food, put food into a soup or have really soft food.

The Tumor - A part from getting an excruciatingly sore throat and mouth in general, I did develop a red blotchy face (skin problem) during Cycle #4; which I was warned about and given moisturising cream for. I also received a variety of pain killers, creams and gels for my throat/mouth problems. As each day of photon beam x-ray treatment hit my neck, I felt symptoms within 1 hour of getting of the radiation (photon beam x-ray) machine.

Chemotherapy (With Radiotherapy) Treatments - CYCLE #5

The Chemo - Cycle #5 was more or less the same as Cycle #4. Nothing really changed in terms of sleep, diet and so on.

Energy Levels - By Cycle #5 I was rarely doing exercise (not even 30 minutes on the treadmill) purely because of the way the chemotherapy/radiotherapy treatments, on top of pain killers, would zap my energy levels; to the point I could not be bothered to exercise. The staying in bed was more comfortable! Towards the end I was sleeping in the afternoons and evenings aswell as in the night time.

Appetite - I struggled with food simply because I was getting bored of eating the same old, specific/diet-related, food due to lack of appetite; which the radiotherapy in particular brought on. In the end I was just forcing myself to eat 4 times a day on smaller meals. Just enough to keep up my neutrient, vitamin and energy levels up.

The Tumor - With the ever increasing sore throat, I did not give a sh@@ about the tumor! Sorry to say, but the whole chemoradiation thing wears you out to the point you no longer give a sh@@! I did not give up though, even thouh the aches and pains of my sore throat and rashed, itchy, neck felt like they would never repair. Ironically I felt it would be the side effects that would kill me off and not the tumour!

After Chemoradiation Treatments - ROAD TO RECOVERY

After completing my chemotherapy and radiotherapy treatments (chemoradiation), my oncologist wanted to book me in for another chemotherapy cycle straight away. She must of thought I was superman or something! Hence why I had to tell her "I need at least three weeks to temporarily recover from all the radiotherapy treatments", which she agreed to whereby we both decided I would start the additional chemotherapy treatment three weeks later.

She was saying she does not normally offer chemotherapy after radiotherapy, mainly because most patients are too weak for more, but in my case she said she wanted to make sure the breadcrumbs of my tumour (if any still existed) were cleaned up, therefore preventing a secondary cancer.

After Chemoradiation Treatments - SWEATING BUCKETS

Apart from my mouth (throat/tongue) still be painful and sore with ulcers, etc: The main side effect I suffered from after radiotherapy was a constant sweating during the night, during daytime sleeps and during meals. Although I would drink around two litres of water while eating for example, to sooth my throat/tongue pains/sores, I was seating out many more litres; too many, to the point I had to ask my oncologist "Is that normal?".

Cancer Bed Sweats

A night of sweating profusely means a change of pillow case every day

After Chemoradiation Treatments - WEIGHT LOSS

Another main side effect after radiotherapy was weight loss, which many cancer patients get after completing weeks/months of chemoradiation (chemotherapy and radiotherapy combined). Even though I was still able to eat 3-4 times a day, I would still lose weight by the Kg. In the first week after radiotherapy, for example, I lost 3Kg. Over the following weeks I managed to maintain a weight of between 86.7 Kg and 88.1 Kg.

After Chemoradiation Treatments - ALWAYS SLEEPING

Being able to sleep between 7 and 12 hours a day was actually a nice side effect! Especially after weeks of not getting enough sleep. I got that nice, lazy, feeling of not wanting to get out of bed; knowing I didn't have to!

Over the first recovery weeks I gained a bit more energy, enough to walk to the shops and not feel tired overall. This was possible because I was initially forcing myself to eat more, therefore giving me a little more energy as each week passed.

After Chemoradiation Treatments - FEELING COLD

Feeling cold and having goose pimples, even when I was in a centrally heated room and warm bed, was a strange side effect. I used to use two blankets instead of one and still never sweated inside those blankets; even with the radiators on high.

After Chemoradiation Treatments - THE FINAL VERDICT

So with all possible chemoradiation treatments completed, what was the oncologist's final verdict on my tumour and life expectancy?