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💛March 2026 Chemo Check-In: You don't have to do this alone!💛

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Comments

  • amerli
    amerli Posts: 50

    @avened the not knowing is the worst. The mind is a powerful thing and I have to admit that my mind has been taking me to some pretty dark places. I so appreciate you paying it forward. The collective knowledge on this site has been a wealth of information.


    I forgot to mention that the oncology pharmacist said there are studies that show acupuncture to be helpful for neuropathy so I have my first acupuncture appointment today at my pcp’s office. It’s an integrative med place and I cleared it with my MO beforehand. Sending you good thoughts for Thursday.

  • avened
    avened Posts: 15

    Cycle 2, Day 2. Seems a little milder than Cycle 1. Still tired today since the steroids are interfering with my sleep. Ended up taking essentially Benadryl to get to sleep. Did get clearance from my psychiatrist that I can take Cbd for sleep. (Marijuana and CBD seem to have a similar side effect to grapefruit and my anti anxiety medication has the grapefruit warning.) Mild dry mouth and by dinner time the tinny taste is back, so I’ll be on plastic reusable utensils again for the next week. No nausea yet but I am taking all my premeds to stay on top of it. The only new thing is my face started feeling flushed today but I have some refrigerator face masks and put one on to calm it down.

  • amerli
    amerli Posts: 50

    @avened I hope the flushed face calms down and that you are able to get some rest. How long do you have to take the steroids for?


    @pupsrule983 and @moo64_rou88 you’re also on TC, how is it going for you?

    @caitlin67 did the headaches subside?

    Wishing everyone a gentle weekend.

  • pupsrule983
    pupsrule983 Posts: 8

    hi @amerli - change in course for me a rare complication stopping the infusions - stay strong all.
    But not hit is totally gone 14 days after 1st infusion shedded out into clumps. Also did get that scratchy tingly feeling that everyone spoke about


    hang in there!

  • amerli
    amerli Posts: 50

    Oh @pupsrule983 I am sorry you had a complication. That sounds tough. If you are able please let us know how you are doing and if we can support you in any way.

  • avened
    avened Posts: 15

    cycle 2, Day 6 update.
    1. I forgot to share that during the taxotere infusion I did have a complication. It didn’t seem significant to me but the response from the care team was immediate and comprehensive. The nurse had told me to report any change in how I felt at all. So when my stomach started to feel weird - not nauseous, not pain, just different - and I told her, she rushed in. Plus the NP and another nurse. Stopped the infusion, pushed Benadryl, Pepcid and something else via IV. Waited 15 on a fluid push for everything to take effect. Ended up needing another 10 min since the Benadryl was the last drug given. Stomach weirdness (which a few min in added a feeling like I had a small rock in my stomach) abated, we resumed taxotere and no other complications happened. For Cycle 3, they are going to push a stronger dose of Benadryl but the expectation is that the complication only happens on cycle 2. Not 3 or 4.

    2. As for this cycle, just very sleepy and foggy with the usual ‘moving through molasses’ impacts. Plus the face and scalp flushing. Using cold packs to help with the flush. Sleeping when I can. Hoping more sleep will mean the brain fog moves through quicker.

    I know it gets better. Which is both better and worse. Better because I know it ends. Worse because it isn’t better yet. I am super appreciative though as I know it could be way worse.
    Starting to feel a little dread at the thought that I have to do this whole thing again two more times. Which feels silly since the complications really have been mild for me.

    How is everyone else doing?

  • amerli
    amerli Posts: 50

    @avened Wow, I am glad you had the presence of mind to report the stomach weirdness especially because it is not on the list of symptoms we are told to look out for during infusion. I hope you are feeling better and good on you for getting as much rest as you can.

    Today is cycle 2 day 1 for me. No initial reaction at the infusion but too soon for me to report anything else. Now I am just waiting to see what this cycle will bring and trying not to have too many expectations either way. I will keep y’all posted.

  • amerli
    amerli Posts: 50

    Cycle 2, day 6. I finally got an answer to the question: do side effects change cycle to cycle or do they stay the same? I’ve seen such conflicting answers on here. My MO says “it depends.” Some side effects like nausea and GI troubles follow the same pattern. Constipation on day 4? Check. Other side effects are more linked to a specific thing happening in your body at a specific time and so may be new or cumulative eg RBCs take a bigger hit so shortness of breath might develop on exertion.

    Day 6 is smack in the middle of my crummy period so I have that flu-y feeling. My biggest SE so far has been oral thrush. It seems far less common than mouth sores, so I have not found any remedies on here for that. It is unpleasant and uncomfortable and I wish it would go away! The other big struggle is the mental component. I feel demoralized and the thought of doing this 4 more times feels impossible right now. And then what if it’s all for nothing? It’s all really quite a struggle and since I have to put on a brave face for my little family, I guess this is the only place I have to share with people who are going through it too. I hope everyone is having an easy weekend.

  • avened
    avened Posts: 15

    TC Cycle 3, Day 6. The chemo tired and brain fog have hit me a bit harder this time. Same with the nausea. I wasn’t adhering as closely to the recommended guidelines (hydration, diet, etc) in the week before my 3rd infusion and I think that may be a part of why this cycle is harder. Glad I only have 1 more to go after this cycle completes. Will definitely go back to following the exact plan from before. How’s everyone else?

  • amerli
    amerli Posts: 50

    TC Cycle 3 Day 1. I didn’t think I had chemo brain but I mixed up my premeds and took a double dose of Zofran instead of the steroids I was supposed to take. Yikes! My MO said I will live (phew) but I had to get IV steroids before the infusion to make up for the dose I missed. From now on I will have a responsible adult with me before I take any meds lol.

    Infusion day went ok. No immediate allergic reaction, just a lot of throat clearing during the Taxotere push. The nurses gave me warm tea.

    So far my labs are not too bad and we’re not sure if my pale tongue and inner cheeks are from anemia or from the effects of the drugs on my oral mucosa or thrush or something else so I guess I’ll just keep rolling with it. I use the Magic Mouthwash and it helps marginally so I’ll take it.

    I have to admit to a feeling of dread going into the next few days. How bad is it going to get? Will something new and unexpected pop up? I’m going to focus on rest rest rest and staying distracted.

    @avened I hope you turn a corner and start to feel better soon. Drink as much fluids as you can, it’ll help. You’ll be done before you know it! I still have 3 more to go, weep.

    It’s been real quiet on here lately. How are you all doing? @pupsrule983 @moo64_rou88 @caitlin67 Did I miss anyone else?

  • avened
    avened Posts: 15

    Ready for my last infusion tomorrow. Happy for this round to be nearing its end. Still a bunch of this journey to go but happy to close the book soon on this one. How are you all doing?

  • amerli
    amerli Posts: 50

    @avened Congrats on your last infusion! How are you feeling physically and mentally? I have my fourth coming up in a few days. Dreading it but soldiering on.

  • avened
    avened Posts: 15

    @amerli I understand that dread. I’m hoping this infusion cycle goes better than my last. Nothing super significant in round 3 but it just hit me harder. I wasn’t as careful about my eating and hydration habits (and I exerted myself more than I had been) at the end of cycle 2, so I think 3 hit me harder. So far, just tired and some nausea but my taste buds were not back to normal yet, so my appetite is off. Being tired and dealing with the nausea - I expected to have happen on day 3. And bland foods like rice and oatmeal will just have to be my mainstays for at least 2 meals. Hoping I can handle some peanut butter or beans just to get my protein in. How are you doing?

  • amerli
    amerli Posts: 50

    @avened You’re in the home stretch of crappy days and then your body can start to recover as the drugs leave your system for good. Focusing on bland foods and protein in the meantime is definitely the way to go, along with hydration. You are listening to your body and doing all the things…kudos to you!

    I am doing ok physically. SE’s have been manageable. I am trying to stay active when I can. I tried to start strength training again but the resulting back pain has sent my mind to dark places so I think I will stick to walking and the occasional soccer game with my kid. Mentally, I am exhausted and wondering how I will get through 3 more rounds of this. Right now I am caught in a vicious cycle of anxiety fueling lack of sleep fueling anxiety etc.

    What comes next for you, @avened? Do you have to do radiation? Hormone blockers? Or is your MO releasing you back into the wild?

  • avened
    avened Posts: 15

    @amerli radiation and hormone blockers should be up next. Still don’t have normal taste buds back yet and I’ve added lower leg and ankle edema as a new side effect this time. Glad I can keep my legs elevated when I need to but I’m hoping it ends soon.

    @amerli i know the lack of sleep/anxiety well. You might want to talk to your care team. They provided me with some options to help me get to sleep. I was especially appreciative on those nights I have steroids in my system (which just fuel the anxiety for me). You are doing great, so just keep doing what you can. Enjoy those walks and occasional soccer games. You will be back to strength training before you know it. How was infusion #4?

  • amerli
    amerli Posts: 50

    @avened it sucks when new side effects show up but I am hopeful that they will resolve soon for you. Infusion 4 went ok. I am definitely feeling the cumulative fatigue and the poor sleep isn’t helping. I will follow your cue and ask for some options to help with sleep.

  • avened
    avened Posts: 15

    @amerli how are you doing?

  • amerli
    amerli Posts: 50

    @avened I am doing ok, thank you for checking in. I did the 6 infusions. Side effects have been manageable so far. I am left with the achey legs and some joint pain in the fingers but otherwise I’m doing ok.

    I don’t have any more treatments, just scans every 6 months. So now I am trying to figure out how to pick up the pieces of my life. The fear of recurrence is hard and I don’t know what the future holds. But I suppose I never did before and all I can do is focus on now because that is what I have.

    How are you doing, @avened? Did your leg edema subside? Have you started radiation? I am sending you good thoughts.

  • avened
    avened Posts: 15

    Glad your treatment is done. That has to be a huge relief. I understand the fear. Don’t be afraid to talk about it with someone who understands. I know we don’t want to add more worry to our loved ones but holding it all inside makes the fear stronger in my opinion. For me, I’ve had to find a balance because I don’t want it to be the only thing I talk about but I won’t hide away my worries either. So far, my care team has been a great resource. I’ve been able to talk the most about the worry and concern with others at various stages of their treatment. That helps.

    The edema is gone for me and now I’m just achey and am trying to build back up my endurance. Wild how quickly I get tired but it’s getting better. It’s a chance to help myself get stronger.

    Radiation has not started yet but will soon. I’ve had my prep appointments and get to do my ‘dry run’ next week. So I’ll start the following week and go every weekday for six weeks.

    Then scans? I think.

    I’ve started on the Lupron already to keep the hormones suppressed and I should start the Kisqali and anastrozole in mid August. 3 years of Lupron injections and Kisqali. 10 years of anastrozole.

  • amerli
    amerli Posts: 50

    That is great advice to talk through the fears. I hope radiation goes smoothly for you and that the hormone blocking meds have minimal to no side effects.