I started Chemotherapy, 3 months ago and I am currently on my second cycle of FOLFIRI, after 5 cycles of FOLFOX-6 (which did not have the effect I had hoped for). This post is a recap of my experience to date, and I will update it every 2 weeks:
FOLFOX Cycle 1
The first round of Chemo I found the worst. The first two days were fine (due to all the pre-med steroids they include in the chemo cocktail I assume). On Day 3 things got bad. I developed a high fever, which scared the hell out of me based on the hospital documentation on how dangerous infections with a chemo compromised immune system could be. Rather than calling the ambulance, as recommended by the hospital documentation, I called my oncologist instead. I only got as far as his secretary and described to her my condition. She called me back about ten minutes later telling me that a fever is to be expected with the chemo that I am having, and to take a panadol. Would have been nice to actually speak to the oncologist. I felt quite weak on days 3 and 4, but the fever went away after about 12 hours. Later I was told that it was most likely a sign that the chemo was working.
I was told that I may experience a diarrhea, but I found quite the opposite to be the issue, due to the leucovorin. On day 5, passing stool became a major challenge. I developed fissures in my rectum, which caused bleeding and pain, lots of pain. By day six I dreaded going to the toilet, and the closest I can describe the sensation is: imagine passing razor blades. On day 7 things started to get a little better.
Nausea is my ongoing challenge. I had constant nausea for two months before I started chemo, probably due to the extensive liver mets, so I can’t really say how much chemo contributed to this. I did not find that it got any worse, and for that I am grateful.
Then there was neuropathy due to Oxaliplatin and anything cold felt like pins and needles. This lasted for about 2 days. It was very hard to handle anything cold, and drinking cold drinks was impossible.
Developed a sore on the tip of the tongue. Rinsed my mouth with salt water after each meal there after and it cleared up 3 days later.
Lastly, the steroid, dexamethasone I found made it hard to sleep. I got maybe 2 hours sleep the first two days after chemo. Out of desperation tried sleeping pills, but found these of little help.
FOLFOX Cycle 2
Compared to the first cycle, the second was a breeze. Only main side effect I experienced was again the Oxaliplatin neuropathy in response to anything cold. I also noticed a change in taste. I found that savory foods especially like aged cheese just did not have the same flavor bite as before. My blood pressure was high after the first cycle so on this round no Avastin was given.
FOLFOX Cycle 3
Oxaliplatin neuropathy I noticed getting worse. The reaction to anything cold was stronger and the neuropathy lasted 5 days. I found wounds very slow to heal. Most likely due to the angiogenesis inhibitor Avastin which I resumed. I noticed blood clots when ever I blew my nose.
I stopped taking all anti nausea medication which I was prescribed. I found that there was no difference whether I took them or not, and without dexamethaosone, I was able to sleep better too.
My red blood cells were taking a hammering, progressively getting worse with each cycle. My white cells were relatively good, aways within normal range. I took betaglucans to boost the immune system and daily hyperthermia which may have helped the white cell counts. For red blood cells, I did some research and started drinking stinging nettle tea. This seemed to have helped and my red cell counts recovered slightly.
FOLFOX Cycle 4
Fourth cycle, and the Oxaliplatin neuropathy has gotten much worse. During the second day of chemo neuropathy was triggered not only by cold, but pressure alone is now enough to trigger the painful pins and needles sensation. The neuropathy lasted longer than ever and I could still feel its effects 8 days after chemo.
During the night of the 6th day my nose got blocked. I get that from hay fever from time to time so initially paid not much attention to this till I tried to blow my nose. A large lump of mucous and congealed blood came out, a hefty mass taking up the palm of my hand. My nose oozed blood slowly for almost 3 hours there after. Avastin at its best I figure. I am keeping eye for dark stool to make sure the same is not happening in my bowels. Luckily this experience was not repeated.
FOLFOX Cycle 5
Oxaliplatin neuropathy getting worse with each cycle it seems. This time I started to feel it in my feet when walking on cold tiles. Nothing a pair of socks can’t fix but. The Oxaliplatin effects lasted for almost 12 days this time round. At this rate, I hate to imagine the effects after the 12th cycle.
Flossing my teeth was apparently not a good idea, and I got a very bad gum infection probably as the result. By mid cycle I was lancing boils. It got better but would not heal.
Nausea is my constant friend. The only time I feel half decent is the first two days of chemo thanks to the steroid infusion. I still refuse to take any medication for it. I figure my liver has enough to cope with already.
FOLFIRI Cycle 1
CEA was rising every two weeks during the last 5 cycles. It climbed from around 600 to 2800. I was hoping that the rising CEA was due to cancer cell death, but that was not to be. New CT scans revealed no change in my tumour load. Some mets grew, a few got smaller. As a result, I was moved from FOLFOX to FOLFIRI, hoping for a better result.
The first FOLFIRI experience was little different to FOLFOX. I had hot flushes during the infusion, and I felt a higher level of nausea than usual. I was warned of diarrhea, but on the second day, got the worst constipation I have ever experienced. (I would have preffered the diarrhea). Took several hours of effort to finally clear my bowels and then things got better. On days 4 and 5 experienced mild fever.
My gum infection much better but still there. I can feel it deep in my jaw bone now. Does not hurt, but sensitive to touch.
Hair loss due to Irinotecan is kicking in. Lost maybe 50% of my hair by the end of the 14 day cycle. Time to get it shaved and beat the chemo to it.
CEA dropped by 400 to 2400. This is the first time it had dropped, hooefully that means something, but still a long way to go.
FOLFIRI Cycle 2
Very happy not to have the Oxaliplatin neuropathy, however irinotecan is bringing new challenges. First thing I noticed, a strange sensation in my mouth. Its very hard to describe the feeling, but I know its because many of the lining cells are dying. I also discovered that I virtually lost my sense of taste for anything sweet. Taste buds too apparently are taking one for the team.
Nausea is much worse than previously. It got to a point where I had to take something so took Zofran. Its supposed to work very well and very quickly, but all I got is a mild relief for maybe 15 minutes. Eating is starting to be a challenge as well, but I force myself. Can’t afford to lose the weight I worked so hard to put back on. The Ketogenic diet I put myself on is making this hard too.
My gum infection is still not healing and its been almost a month now. I can still feel it sensitive to the touch. Time to maybe see a dentist and try some antibiotics.
Days 4 and 5 also experienced a low fever. I like fever.
Finding that on days 3 and 4 of the cycle, am feeling much more tired on FOLFIRI. Hopefully that and the mild fevers are a good sign.
FOLFIRI Cycle 3 (22 Feb 2013)
My low grade fever continues. Every evening my temperature is elevated, between 37.2 to 37.5 degrees Celsius. Still struggling with a gum infection, which may be its cause, but I feel that this not likely. Seeing a Dentist early next week, the earliest time that was available that did not clash with what is now a very busy schedule.
High Dose Vitamin C IV I am starting to like. This week I got up to the full dose of 90g, which roughly works out at 1.5g per kilogram of body weight. I have it 3x per week, and every day that I have it, my nausea has been greatly reduced or eliminated. Today I actually feel normal which after 6 months of near constant nausea is an amazing feeling.
My nausea is getting stronger however, but this is more due to my liver problem than chemo. I have made the decision not to take any anti nausea medications, especially since Zofran did not seem to do much anyway. I figure my liver does not need the extra load. I am learning to live with it.
My blood counts following Round 2 were the lowest to date, but still good enough to continue with this cycle. Especially red blood cells. I got sloppy with my nettle tea consumption, so will try harder as this herb seems to help.
Avastin continues to cause havoc and blowing my nose is often quite an experience. Wounds are slow to heal, which I am seeing with a burnt elbow (don’t ask, long story involving my home made local hyperthermia device).
No other side effects to report, which is good.
FOLFIRI Cycle 4 (1 Mar 2013)
This cycle of FOLFIRI was the worst and best at the same time. During the first week, the level of nausea hit an all time high, and It took a great deal of control to fight the urge to vomit. This lasted for several days and the whole first week was a write-off. Even my vitamin C IV, which always reduced or eliminated my nausea (for a while at least) seemed less effective.
During the second week, things improved, and towards the end of the cycle, I had several days of being almost normal. This was a refreshing change from the near constant nausea of the past 7 months. I also felt that the type of nausea during the second week had more to do with the chemo rather than my ongoing liver problems, which have been the major contributing factor in the past.
I finally had a chance to see a dentist for my tooth infection that has been plaguing me for the last 6 weeks or so and I was given a broad spectrum antibiotic. This worked like a charm and the infection cleared up within 3 days. Should have done this earlier.
This cycle brought additional problems. A rather painful ulcer developed on the side of my tongue. Fortunately it cleared up within a week. As if I did not have enough problems, haemorrhoids popped up, and these don’t seem to be going away. All courtesy of Leucovorin I suspect. Seems like pain is becoming a part of my life as much as nausea. (I prefer the pain however).
During this cycle I got another blow. CT scans showed no significant tumor shrinkage. In fact most of my liver mets grew by a few millimetres. This means that just like FOLFOX, the second line FOLFIRI is not having much impact. I am committed to two more cycles, but after that I will pursue other treatment options while I am still in relatively good health.
To be continued….