Purple Everywhere

Purple Everywhere
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Sunday, October 21, 2012

Cyclical Chemo

I've had five different regimens of chemo so far: MOPP at 7 years old, ADV at 40 years old, ICE and BEAM about a year ago at 42 years old, and now Adcetris at 44 years old.

With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.

So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.

Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.

Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.

Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.

Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.

Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.

3 comments:

  1. Wow. You are a very descriptive writer. What misery yet what courage and strength to keep fighting! I have some audio books. Would they help take your mind off of the symptoms at all?

    I am and have been praying for you. Thank you for sharing your perspective on such a personal war.

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  2. Hi Trisha: I am a medical transcriptionist and your site came up on a search of adcetris. In reading your info, I am not surprised that the measurements transcribed were different, but very glad you caught that for yourself! Nothing is at it seems. My partner has stage IV NHL. I appreciate your story. Ever look into Dr. Brudzinski in Texas? Peace and health, Agnes.

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  3. Hi Trisha: Oops, it's the Burzynski Clinic!

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