Triple Positive TCHP Diary, starting August 1

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HeartShapedBox
HeartShapedBox Member Posts: 172

After I exhibited initial mental resistance to the idea of chemo, my MO proposed an "easy" chemo, aiming for 3 months/ 4 cycles of TCHP, with an add'l 2 being optional "frosting" IF I wasn't struggling with side effects. In his opinion the last 2 cycles of the typical 6 have a high degree of side effects for the added value they offer, and he had repeatedly stressed the importance of keeping me low-side-effect, and keeping symptoms managed effectively. 

My very first chemo today, cycle 1 day 1, Thurs Aug 1. They started me off with a saline flush, an injection of Palonosetron and a 30 min IV of Aprepitant (both anti-nausea). I KNEW they worked wonders after I watched a woman across from me puke non-stop for an extended time, without having any reaction (observing/smelling that sort of thing at close distance would make me nauseous/pukey on a GOOD day!!) An hour of loading dose Perjeta came next, followed by an hour sitting doing nothing (observation for reaction). Next was a loading dose of Herceptin for 90 mins, which gave me a headache and made me feel like my stomach was filling up with hot water, like weird heartburn. Then I got an hour of Taxotere, and 30 mins of Carboplatin, during which I sucked and chewed on ice the entire time to help prevent mouth soreness. I'd contemplated icing my hands and feet as well to prevent neuropathy, but felt too self-conscious to do so after not seeing ANYONE around doing any kind of icing at all. Perhaps I'll regret that and start on cycle 2! I did drink a liter of water while there (besides all the ice), which was annoying for having to get up and pee repeatedly, but I'm a firm believer in staying hydrated and flushing this crap out of me as much as possible (as well as being proactive about symptom prevention). The chemo drips made me super tired and kind of "low". 

After chemo they flushed my port and placed a heparin lock, and applied a Neulasta wearable injector to the back of my arm. When all was said and done, it was about 8 hours in chemo. When I got home I took some pepcid hoping to alleviate the heartburn, ate dinner with no problems, took my steroids, took a claritin to prevent Neulasta bone pain, drank a bunch of water and promptly crashed out- I couldn't even keep my eyes open. Woke up later and had enough energy (steroids kicking in?) to log this, so I took a benedryl for added chemo-allergy prevention and to combat any steroid buzz tonight (I wanted to stay up all night cleaning the house last night!). Feeling good except for the fatigue; from what I've read on here, I'm expecting side effects to kick in around day 3 or 4, at which point I'll update! 

Comments

  • IAmACat
    IAmACat Member Posts: 108
    edited August 2019

    Hi triple positive, TCHP, left-breast sister! One of the most useful things I did for Neulasta pain, which I hope you don't get, was to take Claritin a few days before, during and after. I had debilitating back pain my first cycle, but no pain after taking Claritin for the cycles since.

  • HeartShapedBox
    HeartShapedBox Member Posts: 172
    edited August 2019

    Yes, thank you! I'm taking Claritin preventatively! My "chemo coach" recommended it

  • WC3
    WC3 Member Posts: 1,540
    edited August 2019

    My infusions didn't really get more difficult in any sequential manner and my 5th infusion was easier than my 4th. I recovered the slowest from the 6th though...I like to think my MO gave me a good one for the road.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2019

    I had TC (no HP) and my SEs did not get worse in latter chemos-- just more pooped and anemic and less of a "bounce back" to normal.

    My MO said that the SEs of the first chemo tend to hold steady and remain similar for all your chemos. That was true for me.

  • IAmACat
    IAmACat Member Posts: 108
    edited August 2019

    Hello HeartShapedBox, how are you doing?

  • HeartShapedBox
    HeartShapedBox Member Posts: 172
    edited August 2019

    I'm doing GREAT- now that I'm in my 3rd week (at day 18 now). I feel almost like myself!

    In some ways this first chemo cycle has been easier than I feared, and in other ways more hellish than I imagined. The first couple days (on steroids) I was exhausted but felt OK and had a good appetite. Then there was about a week where I felt absolutely AWFUL. For me, the most disturbing symptoms were G.I. tract from one end to the other, mucous membranes pain and bleeding, and fatigue/brain fog.

    I had round the clock feelings of severe heartburn/indigestion that was beyond uncomfortable despite extreme dietary changes, daily pepcid AC and alka seltzer. It was a constant day and night grinding, acidic, gurgling pain. There was one low-point night (day 6/7) where the stomach ache did get bad enough to turn to nausea and I puked up my anti nausea meds twice trying to get it managed, but otherwise nausea wasn't an issue for me. BAD diarrhea, -painfully so. Tried to find a balance with immodium, but it was either diarrhea or nothing until my first semi-solid BM yesterday (whoo hoo! 😂) I managed to stay hydrated enough to not need I.V. hydration; I logged my water/pedialyte intake to make sure I was getting at least 80 oz a day.

    I did suck on ice chips during chemo, but my mouth got super sore starting on day 3 (the salt/baking soda mouth rinse helps, and a super soft toothbrush, mild natural toothpaste). No actual sores tho, just redness and pain. I started to get neuropathy in my hands and feet at the same time, but immediately started mega dosing on L-glutamine (10 g powder mixed in a drink 3x a day) which quickly nipped it in the bud. It's also supposed to help protect & heal mouth & G.I. tract, and I found it worked best when taken an hour before meals and swished around the mouth before swallowing.

    Besides this, side effects were just annoying. All my moist bits were dry, red, irritated, - eyes, nose, mouth, vag, rectum. Things that helped: moisturizing eye drops, Alba "Un-petroleum jelly" applied in my nose with a q-tip REALLY helped and stopped the bloody nose (although it still drips like a leaky faucet), coconut oil for my lady bits, desitin for my poor diarrhea shredded ass, lotions and oils and creams for my dry dry skin. I just started losing my hair a couple days ago.

    When the neulasta kicked in (I had the wear-home injector that gives the full dose at once 27 hrs after chemo), the bone pain was pretty intense for me for a week, despite daily Claritin. Bad, like writhing around in bed from back pain a few times, couldnt sleep, couldn't get relief, NSAIDs didn't touch it, they only seemed to tear my stomach up.

    After that really terrible week, SEs continued but steadily improved to day 15, and then I started feeling actually "better". I did manage to at least go on a mile long dog walk 1-2x daily except for my worst pukey day, and started being able to add light yoga and stretching the second week, and by week 3 I was back to gardening again. I have to agree, trying to stay active really does help you feel better and have more energy, even though it can feel SO counterintuitive!

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