So it's been slightly over 1 week since my first ABVD treatment:
Initially I
had virtually no side effects, and I never had the most common side
effect: nausea (whooo-hoo! Although I'm
sure I'll eventually have it as the side effects of ABVD
are cumulative), I did eventually get some nasty side effects later on.
- Nausea: I wouldn't exactly describe what I have as nausea, it's not really even uncomfortable, and it’s always just kind of “there.” It's a weird "feeling full" feeling even when I'm I haven't eaten anything. I have not been taking my anti-nausea meds though because of this (yet). For the Newly Diagnosed: You need to maintain your weight! Eat more calories and protein, and try to exercise a little on the week you feel good. Some people actually gain weight while on ABVD… so, uh, exercise. Seriously though: eat anything you want, as long as you can keep it down. When else in your adult life are you going to get to eat ice cream for most of your meals?
- Jaw Pain: After about 3 days, I got this. It’s a side effect of the V in ABVD. It feels like I've been gnawing on a bit of wood all day, and my jaw was terribly sore. It lasted for about 4 days, although only the first 2 were “terrible.” Plain ibuprofen or acetaminophen helped… but not by much. Luckily, for most people (everyone is different) it usually only happens after the first treatment… BUT not always.
- Salivary Gland Pain: HOLY HELL. This was the worst. It started also about 3 days after ABVD, and lasted about 4 ½ days. It’s a uncommon side effect of treatment, which was probably brought on as my lymph nodes that were affected were on the side of my neck near my jaw. It felt like virtually anything I put into my mouth- electrified my salivary glands in my mouth- ALL of them, and lasted between 5-10 seconds (which in reality feels like 10 minutes). It slowly faded after about 3 days. I was told as my enlarged lymph nodes are shrinking- this PROBABLY won't happen again Newly Diagnosed: If you have this, try eating cold things- ice cream, smoothies with a couple of ice cubes dropped in the blender- it helps.
- Bone Pain: This is a side effect of the nulasta. Everyone gets this shot, because ABVD lowers your white blood cell count, and nulasta raises it. One side effect is bone pain, as there's more activity in your bone marrow, particularly in the larger bones- femurs and pelvis. Per their super cheesy “woman running though a field of sunny flowers for no reason” commercials, where some guy mutters out the side effects rapidly for 30 seconds- they mention “mild bone pain.” MILD MY ASS, it felt like an elephant was stomping on my pelvis for 3 straight days. Newly Diagnosed: Take Claritin the night before you have to get this shot, seriously somehow it works (or any other sort of histamine). If you have continued pain: take ibuprofen for this- it made the pain completely go away for me, well for 6-8 hours anyway. Acetaminophen will do nothing. It can cause headaches in people- I think I may have had that, but I chalk it up to skipping having coffee on a couple of days (I’m a horrible coffee fiend). Also for the Newly Diagnosed: Unfortunately… if you have this side effect, you’ll get it most every time you have this shot- which would be the day after EVERY treatment. Luckily it’s easy to negate the pain. If you find that ibuprofen and histamines AREN'T working- tell your Doctor or Oncology Nurses (for ANY intolerable pain you have during treatment), they will give you something stronger (which will probably be a narcotic of some sort). Let your Oncology team know EVERYTHING about how you’re feeling.
- Medical Port Stuff: Remember when I first had my port accessed? I sure as hell do. I asked for analgesic cream to apply to the port (apply 1 hour before getting stuck) so I wouldn't feel like my nurse was running me through with a lance. I had a routine blood draw yesterday, and asked to have it done on the port to see how the cream worked. My oncology nurse Mia, agreed to use the port instead of an arm vein to do the blood draw, whenever the port is accessed- the nurse has to suit up with mask, gloves, swab down the port area etc, vs the an arm vein which would take like 5 seconds- my nurse is a good sport and humored me. They do the whole suiting up because an infection in the port area would be very bad. The nurse stuck me… and I felt nothing. Yay! I wasn't sure if it would work, as I felt no numbness or anything like that, but indeed it did work.
My friend Tom in California sent me this photo. His wife is French, so she had never had a Twinkie
before (?!), so he went out and bought a box while he still could, and shared
one with their roommate:
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