Category: Side Effects

Body changes over time

This page will identify changes over time to physical attributes like my weight.

Weight Changes

  • Jul 29, 2019: As stated in other posts, I’ve been trying to bulk up prior to commencing treatments. That’s been fairly successful. It’s weird, though, to see how much my weight varies. I’m sure the variability reflects the time of day at which I took my weight, how much I’ve eaten prior to weighing, and how much water I’ve sweated off through outdoor activities.
  • Aug 23, 2019: Bulking up is over. Now I’m just trying to keep my weight up.
  • Aug 31, 2019: As you can see, my weight’s bouncing around like crazy. Part of the reason is that some days I weigh when I’m wearing my jeans, and some days I’m wearing lighter-weight shorts.
  • Sep 9, 2019:Weight continues to fall. Food tastes bad, cancer suppresses appetite, while tissue is being re-generated. But, I’m still above my normal weight, and I’ve only 4 doses left, so I’m hopeful this weight loss trend won’t last long.
May 22, 2019: Diagnosis Day
August 1, 2019: First Radiation Treatment
September 13, 2019: Last Radiation Treatment

Other Changes

Bulking up 2

I’ve got base of tongue cancer (T3 N1 MO).  I start treatment in a week and a half.  Expecting that I’m likely to lose 20-40 lbs, I’ve been trying to bulk up as much as possible, focusing on adding muscle mass, rather than fat, ‘cuz your body prefers to get energy from muscle when it’s undergoing chemoradiation.  To that end, I’ve started eating more (a lot more!) and exercising more (again, a lot more!).  I’m focusing on building up my big muscles (quads, glutes, lats), because that’s the easiest place to put on more muscle relatively quickly.  If I look misshapen, it doesn’t matter; in three weeks, when I start to lose my appetite, I won’t be going to the gym anymore, and my muscles will start to atrophy, hopefully back to where they started a month ago.  So, 13 km bike ride followed by an hour in the gym.  Exhausting, especially at age 64.

I went to https://www.calculators.org/health/weight-gain.php to figure out how many calories I’d need to eat to attain the weight I wanted in a given period of time.  Then, with My Fitness Pal (available on Google Play, or at https://www.myfitnesspal.com/), I’ve been able to see how many calories I’m eating for each meal, and how many more I need to eat to hit my target.  I’ve gotta say, I’ve never eaten so much in such a short time, and it’s not as fun as I’d like it to be.  But I REALLY don’t want a feeding tube, so I chow down.

Another benefit of My Fitness Pal is that it tells you how many nutrients you’re getting, including things like potassium, Vitamin C, sodium (yikes, there’s a lot in the things I eat!).  As I’m going along, I’m starting to make better choices about my calorie, fat, protein, and nutrient sources.  The bread we’ve been buying has an astonishing amount of sodium in it.  I’ve got a really good protein powder, but it too contains more salt than I’d like, given the quantity I’m eating.  My wife, though, has found a dry cottage cheese that’s high in protein and very low in sodium. 

Drug Side Effects

Chemotherapy drugs

Cisplatin

  • nausea, often with vomiting
    • The MO would attempt to reduce nausea by having me take anti-nausea medication prior to taking the Cisplatin. The anti-nausea drugs themselves have side effects.
  • diarrhea
  • mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract
  • damage to bone marrow leading to
    • reduction in number of red blood cells resulting in fatigue
    • reduction in number of white blood cells resulting in reduced ability to fight infection
    • reduction in number of platelets resulting in increased bruising
  • kidney damage resulting from platinum damage to cells
  • hearing loss
  • hair loss from the Cisplatin is rare
  • tinnitus is the perception of noise or ringing in the ears
  • neuropathy is the loss of feeling in fingers, hands, and feet, and can sometimes become permanent
  • weight loss that compromises health
  • increased susceptibility to auto-immune diseases

Top

Chemotherapy anti-nausea drugs

  • aprepitant: tiredness, hiccups, nausea, vomiting, heartburn, stomach pain, diarrhea, constipation, loss of appetite, hair loss, headache, dizziness, mild skin rash, ringing in your ears, sleep problems (insomnia)
  • dexamethasone: vision changes, swelling, rapid weight gain, sleep problems (insomnia), mood changes, acne, dry skin, thinning skin, bruising or discoloration, slow wound healing, increased sweating, headache, dizziness, spinning sensation, nausea, stomach pain, bloating, muscle weakness, changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist)
  • diphenhydramine: drowsiness, dizziness, headache, irritability, stomach upset, blurred vision, decreased coordination, dry mouth/nose/throat
  • lorazepam: dizziness, drowsiness, weakness, slurred speech, lack of balance or coordination, memory problems, feeling unsteady, severe drowsiness, thoughts of suicide or hurting yourself, unusual changes in mood or behavior, confusion, aggression, hallucinations, worsened sleep problems, sudden restless feeling or excitement, muscle weakness, drooping eyelids, trouble swallowing, vision changes, upper stomach pain, dark urine, jaundice
  • ondansetron: diarrhea, headache, fever, lightheadedness, dizziness, weakness, tiredness, drowsiness, constipation, rash, blurred vision, muscle spasm
  • prochlorperazine: dizziness, drowsiness, anxiety, insomnia, strange dreams, dry mouth, stuffy nose, blurred vision, constipation, breast swelling or discharge, missed menstrual periods, weight gain, swelling in hands or feet, impotence, trouble having an orgasm, mild itching, skin rash, headache, low blood pressure

First meeting with SLP

I met Courtney, my Speech Language Pathologist (SLP), today (July 4, 2019) to review what I could/should be doing now to reduce oral side effects resulting from radiation and chemo therapies.

Before getting into that, though, we talked about things like:

  • getting a humidifer might, or might not, help
  • the use/non-use of nebulizers
  • swallowing problems are a major side effect of radiation therapy for head and neck cancer, can unfortunately be life-long, and can certainly last beyond 2-3 months post-treatment
  • saliva problems and changes in taste can be the longest surviving problems. Some people never regain these facilities entirely.
  • if I need answers to specific questions about non-SLP issues, such as symptom relief, I should talk to Dr. Terry Meadows, a General Practitioner in Oncology (GPO) on staff with the Victoria Cancer Clinic

Courtney provided me with a handout that outlines the side effects of radiation in regards to swallowing, opening my mouth, and speaking, and that briefly describes how to reduce my risk of having swallowing or mouth opening problems.

(Note: I lifted some of the phrases in the following directly from the above-noted handout.)

Relevant Side Effects

  • mucositis: inflammation of the mucous membranes resulting in pain when swallowing
  • xerostomia: lack of saliva due to radiation damage to the salivary glands
  • dysphagia: swallowing difficulties
  • taste changes
  • swelling
  • atrophy: weakening of the tongue, jaw, and neck muscles responsible for swallowing
  • fibrosis: the scarring and stiffening of tissues in the field of radiation, resulting in the swallowing and mouth-opening muscles not moving easily. It can take 3-12 months, or even years, before fibrosis raises its head.

Ways to reduce risk

  • Perform excellent oral care through daily flossing, careful brushing, using oral rinses, and caring for good-fitting dentures. Courtney provided me with a sample CuraProx 5460 toothbrush (highly regarded on UK blogs).
  • Continue eating and drinking as long as possible
  • Perform swallowing exercises before, during, and after treatment to reduce short-term and long-term swallowing problems

Key Takeaways

  • The baking soda rinse is effective in reducing mucositis
  • Products containing Xylitol, like Xylitol Gum, Xylitol Pastilles, and Xylimelts, as well as Biotene products like Dry Mouth Moisturizing Mouthwash, Dry Mouth Moisturizing Spray, and Oralbalance Moisturizing Gel are effective in reducing xerostomia
  • Atrophy and fibrosis are long-term side effects that can significantly affect my QoL
  • Both can be significantly reduced through early, frequent, regular, and on-going exercises
  • “Use it or lose it!” applies to one’s swallowing function. Patients who move quickly to soft foods and then to liquids and then to feeding tubes take much longer to regain their ability to swallow than people who keep eating and swallowing as much as they can as long as they can.
  • “Buffing up” jaw muscles, neck muscles, and the tongue protects those muscles from the weakening/stiffening that can occur later in treatment. I’m already finding that my tongue weakens as I eat crunchy foods like coarse, raw vegetable salads, so I’m eager to start these exercises.
    Exercises that I should perform at least 3 times daily are as follows. Exercises should never push into the pain realm.
    • Shaker Exercise Parts 1 and 2
    • Chin Tuck Against Resistance (CTAR) Parts 1 and 2 if the Shaker exercise causes other structural/musculature problems
    • Mendelsohn Exercise
    • Effortful Swallow
    • Tongue Stretches
    • Jaw Stretches. I may need to practise these forever to ward off fibrosis.

Diagnosis Side Effects

Fine Needle Aspiration (FNA) Biopsy (level II lymph node)

I had two FNA biopsies.

  • The first (March 1, 2019) was done by a relatively young doctor in a hospital setting. She applied a topical freeze to my lump before inserting the aspiration needle. Nonetheless, the feeling of having material removed from the lump is uncomfortable. Not, for me, painful, but uncomfortable. There were no lingering side effects.
  • The second (March 22, 2019) was done by my ENT in his office. He eschewed the topical freeze and said, just before he inserted the biopsy needle, “This is going to hurt.” He wasn’t far off. His method was more probing than that done in the hospital. It still wasn’t “painful”, but it was very uncomfortable. Well, maybe it was painful. The lymph node was still sore the next day. But no other side effects.

Open Biopsy (Primary Site: Base of tongue)

My Experience

My open biopsy (May 22, 2019) occurred under complete sedation monitored by an anesthesiologist in a hospital operating room. Recovery took place in the Recovery and Post-op Day Surgery areas, under the watchful eyes of apparently very experienced post-op nurses. I had no difficulties walking out of the hospital into my wife’s waiting car about 1 hour after waking up from surgery. Most of the post-op time was in a semi-reclining position. No further side effects other than the predicted soreness. My surgeon had prescribed Tramaset, a combination of two pain relievers – tramadol (an opioid analgesic) and acetaminophen, as a painkiller, but all I took was three T3’s. (My approach with painkillers is to apply as necessary and when necessary.) Your mileage may differ, but I hope not.

Andy Krauska’s Experience

For some, like Andy Krauska, biopsies do have side effects. He and I appear to be of similar age, and appear to have similar symptoms and timing. A notable difference between one of his biopsies (Andy’s Cancer Journey: Biopsy – Back of Throat) and mine is in the use of painkillers; he took the prescribed acetaminophen and hydrocodone. The following comes from an email that Andy sent me.

The biopsy surgeon did not prepare me at all for the gag flex and vomiting.  I almost called 911  as I couldn’t breath for several moments and was thinking, “you gotta be kidding me, I’m going to die choking on my own vomit!”  The gagging and vomiting repeated even while the doctor was on the phone and saying only “keep drinking water.”  What she should have said before the surgery and in writing was: You need to sit up in your bed with your head tilted slightly back to get the uvula back in your throat so it doesn’t touch the tongue, that’s what’s triggering the gag reflex and vomiting.  It may take 4-6 days for the uvula elongation and the tongue swelling to go down.  To help that process, you can suck on crushed ice, rinse hourly with salt (1/4 tsp), water (8 ounces) and baking soda (1/4 tsp) solution. Also, be aware that you will have ulcerations in your mouth on the inside of the lips and under the tongue and on the uvula, they will appear white.  They are normal and will go away over the next week; they are caused the surgery and are normal side-effects.  Besides the rinsing every hour, you can get an over the counter rinse called Gly-oxide and use it 2-3 times a day topically or as a rinse. Sleeping in a sitting position will also help reduce the swelling of the tongue.

Andy Krauska, June 29, 2019

Bulking up

My team at the Victoria Cancer Clinic includes a dietitian. I’ve called her a couple of times now to inquire about “bulking up”. This is the process of putting on mass now that my body will later burn up later when I’m not able to eat as much as I need.

Everything I’ve read (thanks all you bloggers out there) indicates that I’ll lose 20-40 lbs. My dietitian thinks that I should put on 10-15 lbs, based on me being 6’1″ and 169 lbs. She also confirmed something that Dr. Pite (the clinic’s dentist) said: although our bodies normally go to our body fat to get needed energy when we start a diet, our bodies go first to muscle mass when we’re in radiation treatment. So, it’s good to put on weight in advance of treatment, but it’s best if that we put on muscle mass rather than fat.

My wife picked up a great big jar of 100% natural whey protein powder from Costco. It’s vanilla flavoured, and tastes just fine when blended (I use a Magic Bullet) with milk.

My dietitian had me check to confirm that the powder does not contain any antioxidants. It turns out that, although antioxidants are really good things to eat, and that although they do fight the growth of cancer, our consumption of them is counter-productive when undergoing cancer treatments. That’s because antioxidants fight the processes that result in cells being damaged (a good thing, normally), but when we’re undergoing treatment, our treatments are actively trying to damage cancer cells. By consuming significant amounts of antioxidants during treatment, we fight the treatments’ effects.

That being said, the amount of antioxidants that are normally found in the food we eat isn’t sufficient to significantly counteract radiation and chem therapies. So, eat well, eat antioxidants, but don’t take the large doses of antioxidants that are found in many protein powders.

My dietitian says that, under normal circumstances, a male my size should be eating around 77 gm of protein a day. But, in advance of treatment, I should be eating about 110-115 gm per day. According to what I remember her saying, the human body can absorb about 80% of whey-based proteins, but only 40-60% of plant-based proteins. So, for the money, whey-based proteins are a better source for those of us trying to bulk up.

But protein ingestion isn’t enough; one needs to exercise in order to have the body store protein as muscle mass rather than fat. The more protein we eat, the more exercise we need. For the past couple of months I’ve been riding my bike about 12.5 km each morning, and my legs are showing improvement for that. I’ve also, as of today (Thursday June 27), registered myself at the Oak Bay Recreation Centre to get three one-on-one sessions with a personal trainer. It appears from an email that I got that I’ll be assigned to a trainer who is a practising, and winning, body-builder herself. I’m hoping that she can help me add about 20 lbs of muscle over the next 6-8 weeks (i.e. before I can no longer eat and become too fatigued to work out anymore). I’m expecting that some of that 20 lbs will come from existing fat.

Unfortunately, I won’t be able to start training immediately. I’m going up to Kelowna to visit my aging parents this coming Canada Day weekend, and I’m having two molars removed on Wednesday July 3. After the extractions, I’ll have to keep my exertions low, so I don’t pop any clots. With luck, soon.

Fingers crossed.