Side Effects
The possible side effects from the chemo and radiation, and their incidence, were summarized very well in the JANUS Trial consent. I've included that in the lower section of this page. In the upper section, I'll try to give a week by week update on my side effects.
RADIATION:
Week 1: Just some dry eyes and mild acid reflux. The acid reflux may even be unrelated.
Week 2: Dry eyes - I picked up some Visine that I use just once a day. Muscle tightness - very mild, it just feels like they need a good stretch, but the feeling persists. I should probably work out more.
Week 3: Every day I'm sloughellin'. As the radiation takes effect, the tumor (and inner lining of my rectum) begin to slough off. This is then typically removed from my body as a shart. So, I can't trust a fart - it may leave a mucousy stain in my underwear. If you've ever been a little sick and when you sit on the toilet, a lot of what comes out looks like a you stepped on a clear jellyfish - this is what I get about ten times a day. I hope it means the radiation is working, but it is very annoying. To go along with that, I have much more frequent bowel movements with very little heads up before I'm sprinting to the bathroom. It's not exactly diarrhea, as has been explained by my doctors, because it is not soft and liquidy, but it is definitely something. I literally find myself on the toilet about 15-20 times a day. In fact, I had so much irriation from wiping all day that I thought I was getting burned by the radiation, but no, it was just sourass from using single ply in public restrooms all day. Yes, I make sure to stay hydrated.
Week 4: I still have the sloughing and sudden urges. Over the counter Imodium definitely helps a lot. The acid reflux has persisted a little and is most likely related to the oral chemo. I've also noted that my taste has changed. This is very mild and I only noticed it because I no longer like flavored carbonated water, like La Croix, which I typically drink daily. Spicy foods and alcohol have also become much less palatable. I pretty much stopped drinking at the very beginning of my treatment, but have had a drink here or there since. As of week 4, any alcoholic drink hasn't been enjoyable and has exacerbated my acid reflux. I can't think of any other specific foods right now, but I'll start taking note when I run across them. UPDATE - more foods I no longer like are protein bars, breakfast cereals, pasta sauce, ...
Week 5: I have the same side effects as week 4, but actually much less. In terms of symptoms, this was a really good week. The sloughing has mostly subsided.
Week 6: Final week of treatments. I've noticed some slight redness and dryness in my pelvic area, like a mild sunburn. I also have a split in the skin of my buttcrack. If you have ever had dry skin and its has split between your fingers or toes, its just like that - except in my buttcrack. I've also become aware of a couple symptoms that have been probably been slowly building up over the last couple of weeks and weren't previously mentioned. First, there is a slight burning when I pee, but no more than the feeling when I'm really dehydrated. Also, my balls are much more sensitive than before. Any father of small children will attest to almost daily trauma to that area from tiny elbows, knees, feet, foreheads, etc. and I've noticed that it hurts a lot more than usual. Again, nothing terrible though.
Week 7: First week post radiation. I've noticed a significant improvement in my symptoms already, which has prompted a serious scientific/medical question. Pertaining to daily activity, what is "energy"? I currently work with patients who have Congestive Heart Failure (CHF) and when they are effectively treated, they often make statements like, "I knew I was getting better when I was sitting in my chair last week and just decided I wanted to go for a walk" or "I just noticed that I was wanting to work in my garden again". We think of energy as something that is provided by the food we eat, but often times the more we eat the less energy/motivation we have. This energy/motivation is obviously a combination of mental and health factors, but what is going on inside of our bodies? This week I started feeling better and noticed that I wanted to go rock climbing with my kids and wanted to work out. In the last couple months I have taken the kids to the rock gym, but don't climb myself and had stopped my daily workouts. I didn't really chalk this up to a lack of energy, but more like that feeling of skipping leg day. This week, however, I mostly feel exactly the same and havent changed my diet at all, but just feel like doing stuff. So there I was fresh off radiation treatments and climbing a wall with my kids and doing burpees with my wife's workout group. I want to figure out how to harness this motivation feeling. If you know of any respectable research in the area, please send it to me. Also, at the end of week 7 I had my first day with a normal bathroom cycle which was amazing!
Week 8: Second week of no treatments. This is the most normal I have felt in a long time. The only side effect that I've noticed is a lingering itchyness on my o-ring. It looks like I got through ratiation almost complety unscathed, which had been everyone's biggest concern. So far the gamble is paying off!
Week 9: First round of chemo. I've covered the day-to-day symptoms in the Timeline section of my webpage so I'll focus on the general, week-long symptoms on this page. This first week I actually felt great with lots of energy due to the dexamethazone on Tues-Wed. I did have the pins-and-needles feeling in my hands and toes and sensitivity to cold through Thursday. My taste has definitely been afftected too - most food tastes pretty lousy. On Thursday and through the weekend, I may have felt a little ill, but not enough to worth mentioning here.
Week 10: First Off-Week. I generally felt good all week. No side effects to report.
Week 11: Second round of chemo. This round was rougher than the first. I generally felt tired and queezy, but not full on nausea. During this week, I also noticed my hair starting to fall out and my vision declining. I've aged 10 years in one week, haha.
Week 12: Second Off-Week. More hair loss, but nothing major yet, just a lot more hair on my hands and in the sink when I style it. I'm not sleeping very well, but that may be unrelated. Vision, taste, general stomach off-feeling are all the same. Of note, throughout chemo (so far), I have not had any diarrhea, constipation, loss of apetite (even though food doesn't taste good, I'm still a fat pig), and even the mouth sores have subsided.
From The Janus Trial Consent
Possible Side Effects of Radiation Therapy
COMMON, SOME MAY BE SERIOUS
In 100 people receiving radiation therapy, 20 to 100 may have:
- Reddening, tanning, or peeling of the skin
- Mild pain
- Hair loss
- Tiredness
- Diarrhea, nausea
- Anemia, which may require transfusion
- Infection, especially when white blood cell count is low
OCCASIONAL, SOME MAY BE SERIOUS
In 100 people receiving radiation therapy, 4 to 20 may have:
- Thickening and numbness of the skin
- Sores or ulcers on the skin or near the cancer location
- Permanent hair loss
- Bleeding from the skin
- Sores in mouth which may cause difficulty swallowing
RARE, AND SERIOUS
In 100 people receiving radiation therapy, 3 or fewer may have:
- Damage to internal organs
- Abnormal opening in internal organs which may cause pain and bleeding
Possible Side Effects of Capecitabine
COMMON, SOME MAY BE SERIOUS
In 100 people receiving Capecitabine, more than 20 and up to 100 may have:
- Infection, especially when white blood cell count is low
- Bruising, bleeding
- Anemia which may require blood transfusions
- Diarrhea, loss of appetite, nausea, vomiting
- Sores in mouth which may cause difficulty swallowing
- Swelling of the body
- Pain
- Feeling of "pins and needles" in arms and legs
- Tiredness
- Fever
- Blisters on the skin
- Hand-foot syndrome (palmar-plantar erythrodysesthesia) which may cause redness, pain or peeling of palms and soles
OCCASIONAL, SOME MAY BE SERIOUS
In 100 people receiving Capecitabine, from 4 to 20 may have:
- Abnormal heartbeat which may cause fainting
- Constipation
- Blurred vision, dry or itchy eyes
- Muscle spasms, body aches
- Depression, dizziness
- Restlessness, irritability, difficulty sleeping
- Swelling of face, fingers and lower legs
- Difficulty with balancing
RARE, AND SERIOUS
In 100 people receiving Capecitabine, 3 or fewer may have:
- Damage to the heart which may cause chest pain, shortness of breath, swelling of ankles, and tiredness
- Internal bleeding which may cause blood in vomit or black tarry stools
- Allergic reaction which may cause rash, low blood pressure, wheezing, shortness of breath, swelling of the face or throat
- Stevens-Johnson syndrome which may cause severe skin rash with blisters and peeling which can involve mouth and other parts of the body
- Difficulty speaking, walking or seeing
Possible Side Effects of FOLFIRINOX (Leucovorin, 5-Fluorouracil, Irinotecan, Oxaliplatin)
COMMON, SOME MAY BE SERIOUS
In 100 people receiving FOLFIRINOX (Leucovorin, 5-Fluorouracil, Irinotecan, and Oxaliplatin), more than 20 and up to 100 may have:
- Cholingeric syndrome, which may cause increased sweating, flushed skin, watering eyes, stuffy nose, drooling
- Cough, shortness of breath
- Infection, possibly in the blood, especially when white blood cell count is low
- Anemia which may require a blood transfusion
- Bruising, bleeding
- Severe diarrhea, nausea, vomiting, constipation, loss of appetite, weight loss
- Sores in mouth which may cause difficulty swallowing
- Swelling and redness at the site of medication injection
- Numbness, pain and tingling of the arms, legs, fingers, and/or toes
- Tingling or a loss of feeling in your hands, feet, nose, or tightness in throat or jaw, or difficulty swallowing or breathing which may be made worse by exposure to cold (may occur more than 14 days after administration of the drug)
- Difficulty walking, using your hands, opening mouth, talking, with balance and hearing, smelling, eating, sleeping, emptying the bladder (may occur more than 14 days after administration of the drug)
- Hand-foot syndrome (palmar-plantar erythrodysesthesia) redness, pain or peeling of palms and soles
- Rash, increased risk of sunburn, itching, blisters on the skin, dry skin
- Fever, pain
- Tiredness, weakness, dizziness
- Hair loss
OCCASIONAL, SOME MAY BE SERIOUS
In 100 people receiving FOLFIRINOX (Leucovorin, 5-Fluorouracil, Irinotecan, Oxaliplatin), from 4 to 20 may have:
- Chest pain
- Abnormal heartbeat which may cause fainting
- Stroke, which may cause paralysis, weakness, headache
- Blockage of the airway which may cause shortness of breath, cough, wheezing
- Swelling of the body which may cause shortness of breath
- Low blood pressure which may cause feeling faint
- Altered mental status, confusion, disorientation, intense feelings of joy, difficulty walking and balancing, coma
- Scarring of the lungs
- Allergic reaction which may cause rash, low blood pressure, wheezing, shortness of breath, swelling of the face or throat
- Bleeding from multiple sites including vaginal bleeding, bleeding of the testis, or bleeding of the brain
- Internal bleeding which may cause black tarry stool, blood in vomit or urine, or coughing up blood
- Blood clot which may cause swelling, pain, shortness of breath
- Liver damage which may cause yellowing of eyes and skin
- Visual disturbances, abnormal eye movement, discomfort from light, watering eyes Hearing loss
- Sores in stomach which may cause belly pain
- Heartburn, passing gas, abdominal swelling
- Damage to the muscles which may cause muscle pain, dark red urine
- Muscle weakness
- Inability to move shoulder or turn head
- Dehydration
- Difficulty sleeping or drowsiness
- Headache, chills
- Stuffy nose
- Change in skin or nails
- Change in taste, voice
RARE, AND SERIOUS
In 100 people receiving FOLFIRINOX (Leucovorin, 5-Fluorouracil, Irinotecan, Oxaliplatin), 3 or fewer may have:
- Heart attack or heart failure, which may cause shortness of breath, swelling of ankles, and tiredness
- Brain damage, Posterior Reversible Encephalopathy Syndrome, which may cause headache, seizure, blindness
- Kidney damage which may require dialysis
- Stevens-Johnson syndrome which may cause severe skin rash with blisters and peeling which can involve the mouth and other parts of the body
Possible Side Effects of FOLFOX (Leucovorin, 5-Fluorouracil, Oxaliplatin)
COMMON, SOME MAY BE SERIOUS
In 100 people receiving FOLFOX (Leucovorin, 5-Fluorouracil, Oxaliplatin), more than 20 and up to 100 may have:
- Infection, possibly in the blood, especially when white blood cell count is low
- Bruising, bleeding
- Anemia which may require a blood transfusion
- Diarrhea, nausea, vomiting, constipation, loss of appetite
- Sores in mouth which may cause difficulty swallowing
- Swelling and redness at the site of the medication injection
- Numbness, pain and tingling of the arms, legs, fingers, and/or toes
- Tingling or a loss of feeling in your hands, feet, nose, or tightness in throat or jaw, or difficulty swallowing or breathing which may be made worse by exposure to cold (may occur more than 14 days after administration of the drug)
- Difficulty walking, using your hands, opening mouth, talking, with balance and hearing, smelling, eating, sleeping, emptying the bladder (may occur more than 14 days after administration of the drug)
- Hand-foot syndrome (palmar-plantar erythrodysesthesia) redness, pain or peeling of palms and soles
- Rash, increased risk of sunburn, itching, blisters on the skin, dry skin
- Tiredness
- Pain
- Fever, cough
OCCASIONAL, SOME MAY BE SERIOUS
In 100 people receiving FOLFOX (Leucovorin, 5-Fluorouracil, Oxaliplatin), from 4 to 20 may have:
- Chest pain
- Abnormal heartbeat which may cause fainting
- Stroke, which may cause paralysis, weakness, headache
- Blockage of the airway which may cause shortness of breath, cough, wheezing
- Swelling of the body which may cause shortness of breath
- Altered mental status, confusion, disorientation, intense feelings of joy, difficulty walking and balancing, coma
- Allergic reaction which may cause rash, low blood pressure, wheezing, shortness of breath, swelling of the face or throat
- Bleeding from multiple sites including vaginal bleeding, bleeding of the testis, or bleeding of the brain
- Internal bleeding which may cause black tarry stool, blood in vomit or urine, or coughing up blood
- Blood clot which may cause swelling, pain, shortness of breath
- Liver damage which may cause yellowing of eyes and skin
- Visual disturbances, abnormal eye movement, discomfort from light, and watering eyes
- Hearing loss
- Sores in stomach which may cause belly pain
- Damage to the muscles which may cause muscle pain, dark red urine
- Muscle weakness
OCCASIONAL, SOME MAY BE SERIOUS
In 100 people receiving FOLFOX (Leucovorin, 5-Fluorouracil, Oxaliplatin), from 4 to 20 may have:
Inability to move shoulder or turn head
- Weight loss, dehydration
- Dizziness, headache
- Changes in taste, voice
- Change in skin or nails
- Hair loss
RARE, AND SERIOUS
In 100 people receiving FOLFOX (Leucovorin, 5-Fluorouracil, Oxaliplatin), 3 or fewer may have:
- Heart attack or heart failure, which may cause shortness of breath, swelling of ankles, and tiredness
- Brain damage, Posterior Reversible Encephalopathy Syndrome, which may cause headache, seizure, blindness
- Scarring of the lungs
- Stevens-Johnson syndrome which may cause severe skin rash with blisters and peeling which can involve the mouth and other parts of the body
Possible Side Effects of Oxaliplatin
COMMON, SOME MAY BE SERIOUS
In 100 people receiving Oxaliplatin, more than 20 and up to 100 may have:
- Infection, possibly in the blood, especially when white blood cell count is low
- Bruising, bleeding
- Anemia which may require blood transfusions
- Diarrhea, nausea, vomiting, constipation, loss of appetite
- Numbness, pain and tingling of the arms, legs, fingers, and/or toes
- Tingling or a loss of feeling in your hands, feet, nose, or tightness in throat or jaw, or difficulty swallowing or breathing which may be made worse by exposure to cold (may occur more than 14 days after administration of the drug)
- Difficulty walking, using your hands, opening mouth, talking, with balance and hearing, smelling, eating, sleeping, emptying the bladder (may occur more than 14 days after administration of the drug)
- Tiredness
- Pain
- Fever, cough
OCCASIONAL, SOME MAY BE SERIOUS
In 100 people receiving Oxaliplatin, from 4 to 20 may have:
- Abnormal heartbeat or change in heart rhythm which may cause fainting Swelling of the body which may cause shortness of breath
- Allergic reaction which may cause rash, low blood pressure, wheezing, shortness of breath, swelling of the face or throat
- Bleeding from multiple sites including vaginal bleeding, bleeding of the testis, or bleeding of the brain
- Internal bleeding which may cause black tarry stool, blood in vomit or urine, or coughing up blood
- Liver damage which may cause yellowing of eyes and skin
- Hearing loss
- Sores in throat or mouth which may cause difficulty swallowing
- Changes in taste, voice
- Damage to the muscles which may cause muscle pain, dark red urine
- Muscle weakness
- Inability to move shoulder or turn head
- Abnormal body movement including the eye and eyelid
- Dizziness, headache
- Weight loss, dehydration
- Hair loss
RARE, AND SERIOUS
In 100 people receiving Oxaliplatin, 3 or fewer may have:
- Brain damage, Posterior Reversible Encephalopathy Syndrome, which may cause headache, seizure, blindness
- Scarring of the lungs
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