My first TC experience was not bad
I know everyone is different, and that each cycle can "hit" differently, but I just wanted to share my experience with my first round for anyone who is about to embark on a TC regimen like mine to maybe provide hope. I don't want to minimize anyone's bad experience, but also want others to know that not every cycle is necessarily a worst-case-scenario situation.
I'm 44yo in good general health (prior to CA diagnosis) with stage 1 high grade IDC and extensive dcis. I'm doing 4 rounds of TC each round 3 weeks apart.
My first infusion was 6 days ago.
day prior to infusion: took dexamethasone twice this day as a pre treatment. Had labs drawn. My glucose was crazy high (—I'm not diabetic and have never had blood sugar this high so I'm sure it was from the steroids) and my white count and neutrophils were a little high, too. But I felt fine. I didn't feel speedy or angry or emotional or have trouble sleeping from the steroids.
Infusion day: went by quickly as we were always busy with changing manual cold caps and I felt nothing/no side effects or reactions as meds infused into my port. Went home and continued cold capping x 3.5 hrs. Had normal appetite, slept well.
1 day post infusion: felt a little tired, took it easy but still got out for my daily 1 hr walk. Other than feeling a bit tired had no symptoms. Took steroids this day too as directed but no other meds for nausea or anything throughout day. That evening my Neulasta on-pro did its thing and administered my dose of Neulasta. I got a tiny bit itchy along my jaw and face and arm where the injection happened about 30 min after the injection finished. No hives or rash or shortness of breath etc. And it was pretty mild, but I was hyperaware to look for any symptoms of reaction so I noticed it. If I hadn't just had the injection I might have hardly noticed the itchiness, but it made me a bit nervous so I took a zyrtec (couldn't find claritin even through I swore I had some!) and took some doxylamine (another antihistamine) I got my benadryl out just in case but I didn't take it because benadryl has the opposite effect on me from most people, it doesn't make me tired it makes me feel kind of anxious and gives me insomnia and so as it was already evening I didn't want to mess with my sleep unless I HAD TO. Within an hour of taking zyrtec/doxylamine the itching stopped. I plan to discuss this with my oncologist tomorrow at my appointment. Ate normally that night. slept well.
2 days post infusion: felt tired and kind of spacy-headed, like I was high on cold medicine or something. Still got out and walked. I was burping more than normal and My gut felt sluggish. I took a stool softener and miralax that night. No nausea. did take one chewable tums for indigestion type feeling/burping. seemed to help. Took a nap for about an hour during the day after going out to get groceries. Normal activities like groceries seemed to make me tired easily. Ate normally. Slept ok but did feel like either my ears were a bit achy or my jaw was a bit achy, maybe from neulasta?
3 days post infusion: my worst day and it wasn't bad. Just felt really tired. Only walked about 45 minutes because it was tiring, felt really spacey-headed, like I wasn't firing on all cylinders, took a nap, ate but had less of an appetite and things tasted bland. My mouth felt really dry. Still feeling constipated. but no longer having indigestion/burping. Took more miralax and added a senna pill that night. Went to bed early (like 7:30) because I was tired. Slept poorly, woke to pee often and at night my jaw achyness was back and now when I woke to pee my ribs and back were achy too. Nothing terrible, the kind of thing I would have taken ibuprofen for if I were allowed to but my onc team told me to avoid ibuprofen, so I took tylenol, which I think helped some. Tossed and turned for 15-20 min every time I woke up to pee before being able to fall back asleep because hard to get comfortable, but eventually would fall asleep.
4 days post infusion: starting to feel better, able to walk over an hour today without getting tired. Appetite better, mouth still tastes funny, not metallic but just kind of dry/dehydrated tasting. Able to go to the bathroom but still feel bloated/sluggish in gut. Took more miralax. no nap today, but did take it easy most of the day. At night again feeling mild jaw achyness and ribs aching. took tylenol again in the middle of the night. Slept ok.
5 days post infusion: Woke feeling pretty good. energy! Walked over an hour with a friend at a quick pace, ran errands, still feeling a little spacey but not quite as bad as the 2 days prior. Completed a plumbing project which required lying under my bathroom sink and using tools at weird angles… that took me almost 3 hours! Tenacity! :) Felt good to accomplish something. Good appetite at night. Mouth still tasted dry/funky but not horrible. Still no nausea, no more indigestion. Still feeling bloated. Got prunes and prune juice at store. Ate a few prunes. I may have taken miralax, I don't remember. Back and hips really uncomfortable at night making sleep difficult. Don't know if I can blame that entirely on the chemo/neulasta or on my foolish plumbing adventure. Took tylenol again but this night still had trouble sleeping even with the tylenol because of feeling so achy.
6 days post infusion (today). Maybe overdid it with the bowel stuff. Now had several urgent trips to the bathroom this am, but overall nothing crazy and now feel better in my gut. Have same energy as yesterday .Walked over an hour at quick pace with a friend this am and am meeting another friend for another walk this afternoon. Appetite seems normal so far. mouth still tastes really dry/funky. Back continues to ache some during the day, but not as bad as it was last night.
Definitely feel like I'm on the mend, hopeful that I won't have any big set backs. Not going to get my hopes up that my next infusion will go as smoothly, but really this cycle was so much easier than I feared. Never took any nausea meds/never felt nauseated. The constipation honestly could have partially been because I was eating too much. I kept telling myself "might as well eat now while you feel like it because you're probably going to get sick"… and then I never got that sick. Will be more careful about what and how much I eat during next cycle.
Open to any specific questions if there are things I didn't cover and you're curious!
Comments
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Thanks for sharing this! I am currently in the decision making process of chemo vs no chemo, 4-6 cycles of TC was recommended to me. Just great to see stories of others doing treatment and living life relatively normally. Looking forward to more updates and hope you're still doing well.
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Yes, @lonelypilgrim, we'd love to hear how you've faired with your 2nd and 3rd cycle? We find this type of first-hand reporting so helpful for newbies like @pinkpommom!
Also welcome, pink!! Please let us know if there's anything we can help with.
—The Mods
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