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Starting Chemo September 2021

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  • mindthief
    mindthief Member Posts: 62
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    Spades - hope you’re feeling ok. I found round 2 easier in every way except for fatigue, which is still lingering for me now a full week in. I buzzed my hair last weekend but it’s actually still hanging in, although thinning, now 22 days from first treatment. I don’t know if it will all just fall out one day or keep slowly shedding.

    NicolinaBella - welcome to the group! I hope you’re tolerating treatment 1 okay. I also got period a day before my first one which seemed especially cruel!

    MeandJax - nice to see you checking in. Did your MO have any ideas for the headache? Mine said it’s usually a side effect of zofran, if you’re on that for nausea. She did suggest flushing my sinuses before the next treatment since a lot of the pain was in my face/eye area and I also have seasonal allergies right now.

    DebbieM - you and hubbie look so sweet :) I love the Christmas tree too!

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Spades--First day post treatment #3 so still in a good phase, although I feel slightly "off" and don't think I'd drive right now. I did ask the onco and the nurse about having 3-4 days of severe fatigue first time and 6-7 day the second and they both said it's cumulative so expect it to be even longer this time. Great. The Neulasta is keeping my WBC very high, which is good because my family needs to fly to get here and daughter is coming for last AC then staying for first T treatment. Hair is just starting to shed, my hair turned a beautiful white before I turned 50 so It's hard to see the little whiskers in the sink but I wore a black shirt and noticed some. I hope it comes back the same! Are you doing the Taxol in 6 weeks or 12? My onco suggested 12 (weekly) as it's a little easier on the body. Curious if you heard the same and chose not to or something different, and why?

  • mindthief
    mindthief Member Posts: 62
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    Hummingbird - I think Spades might be doing the exact protocol I’m doing, which is 4 taxol treatments two weeks apart. That seems to be standard in Canada, especially for younger women. I’m not sure why but it’s a good question for my MO.

  • AMG2
    AMG2 Member Posts: 90
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    The acne! After 5 weeks of hating what was going on with the red bumps on my face and chest (I am way too old for acne!!!) and scrubbing them, applying topical antibiotic, cleaning them with alcohol wipes, all to no avail, I think I've finally found something that works, at least for me: A&D ointment. Totally counterintuitive- I thought it would further clog pores, but my forehead, chin and chest have been clear and smooth for 2 days now. Hope this helps someone else, too.

  • spades2525
    spades2525 Member Posts: 47
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    hummingbird- mindthief is right, we are on the same regime..after these 4 rounds of AC, I’ll do 4 rounds of taxol every two weeks. Admittedly I didn’t ask a lot of questions at the time about this plan, but I think I will go back to her with questions about how or if my dx of lobular bc changes anything about how they plan out treatment.

    It certainly is hard to wrap our heads around the cumulative effects of chemo, especially the fatigue,

    AMG2, thank you for the acne tip, I’ll keep that in mind when I am on taxol!

    I’m doing well on day 2 after round 2 because of that steroid shot. I take full advantage of the extra little boost. But yesterday I slept for like 4 hours after I got home from treatment.

    My scalp is also sore but no signs of thinning or loss yet… slow process I guess. I just want to get it over with!

  • txlorelei
    txlorelei Member Posts: 68
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    Hummingbird, my MO put me on 12 weekly Taxol instead of dose dense to reduce the chance of neuropathy. I stilldid end up with some fingertip tingling even with the cold mittens.

    I also had my 3rd AC yesterday. After the prior treatments, I felt the worst on days 3 to 5 - fatigue plus extremely low appetite. I’m avoiding anti-nausea meds because they gave me horrible constipation after AC #1.

    My hair started growing back near the end of Taxol but it’s been falling out again over the last 2 weeks. I’m now mostly bald with some stubborn stragglers.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    OK, thanks for the info. My Taxol will be every week for 12 weeks so maybe US does a longer round 2. Good info, Lorelei, and it sounds like you got Taxol first, then AC. Always good to compare notes and remember everyone is different! Our diagnosis are similar, though. Trying to be productive these couple days until the fatigue sets in.....

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi all, its Day 4 after Chemo 2 and so far so good. The only real side effect yet is that my taste went earlier than before - as of this evening. But no runs or nausea yet like last time. Lots of energy so far - although I remember Day 4 was kind of the start of the fatigue last time around. Cautiously optimistic for a good day ahead. Started the white blood cell shots yesterday for the next 4 days. I am getting used to my new buzzed haircut finally and can actually look in the mirror without grimacing so much. I know it will be back eventually. Hope everyone has a good Sunday!!!

  • sarah_78
    sarah_78 Member Posts: 119
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    Ladies,

    anyone able to control "the runs" with imodium?

    this is 9th day after chemo, on the 4th day big D started and it never stopped. One day I tried 4 Imodium but didn't make a difference. I have abdominal cramps before the runs and it is making me miserable, not sure if I can pull it off like this for another 17 weeks.

    I'd like to try Imodium again but it is written not to get it more than 2 days.

    Any tips are appreciated.

    Much love everyone, hope you are hanging in there.

  • ab45
    ab45 Member Posts: 153
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    Hi September Chemo...

    I wanted to pop in, I am 4 months post Chemo..My regimen was Ac/Taxol. It was tough but you can do it...A few helpful hints for those on this regimen..after infusion, baking soda rinses, drink at least 64oz of water daily, more if you can..try to exercise..you may experience constipation so check into a natural laxative like senokot..After removal of neulsta shot, I would feel so weak, so if you can, add some protein to your diet. You got this....

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    thank you for the encouragement, AB45

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi Sarah_78 - I had the same issue last cycle. I was taking up to 7 imodium and getting no relief. I contacted my doc and asked for Lomotil which was listed as another alternative- today I got the runs early and took 2 of them and havent had a problem since. Maybe get your doc to call that prescription in for you. I was going nuts on the imodium. You just have to be careful not to take more than the dose for any longer than necessary as it can cause the reverse effect. 2 seems to have done the job for me. Best of luck. That's no fun at all.

  • AMG2
    AMG2 Member Posts: 90
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    Hi Sarah_78, the one thing that worked for me was a probiotic. I just took an over the counter one a few days in a row, and it did the trick. I hope you get some relief soon, that is no fun and makes you feel even more run down.

  • mindthief
    mindthief Member Posts: 62
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    But if a hard question here but is anyone struggling with anxiety about whether their chemo is actually working? My worry has been building up this past week, and now is out of control since I noticed a spot on the skin near my breast and am terrified it’s a skin met. I guess hearing so many times how aggressive my cancer is has given me this deep dread that everything I’m doing is already too late. Can anyone relate at all

  • oldladyblue
    oldladyblue Member Posts: 302
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    of course, of course mindthief! The worry is there every moment. I've been unable to sleep well most nights due to worry when I am awake and bad dreams when I am asleep. I've been beating myself up because my surgery was Jul 27 and I am not starting chemo till Friday. (i.e. thoughts of "is it too late already to stop any mets?") Of course, I keep telling myself to stop worrying, but I guess all of us will be living with this anxiety going forward, for years.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Hey Mindthief, hang in there, I had the same thoughts, especially after shaving my head and then my hair not falling out. I have a round "bump" on my head and was certain it was brain cancer but the MO says not to worry. But now, as of yesterday, my little stubble hairs are coming out like crazy so it is confirmed working. Remember, I'm a week ahead of you!

    Deep breaths, get outside, say the prayers.....

  • spades2525
    spades2525 Member Posts: 47
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    oh mindthief , I’m right there with you! Anxiety about whether or not this is working or whether it was started too late or whether it’s the right treatment is all is so overwhelming most days. I have read a very up-to-date article on lobular breast cancer, and it mentions being less receptive to chemotherapy, and instead recommends more immediate endocrine therapy. I plan to chat with my oncologist about this but I’m already in the thick of it so hopefully this does something for me. I’ll be eager to go onto the next treatment plan so that I feel like we are covering all the bases. The fear of the dreaded mets is so real.hang in there… you are definitely not al

  • mindthief
    mindthief Member Posts: 62
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    Thanks guys. It helps toknow I’m not the only one. I had several extended crying sessions today and feel a bit better actually letting it out. It’s hard to be “strong” all the time.

  • sarah_78
    sarah_78 Member Posts: 119
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    mindthief: "It's hard to be "strong" all the time." Exactly... You have to let it go from time to time. I did cry a few times during the last couple of days, feels much better :-) Also remember: it is so unlikely that something progresses while on chemo. Also high grade cancer means it is more sensitive to chemo. Hang in there.

    I just freaked out myself when I saw a lot of red blood in my stool :-( Hope this doesn't open a can of worms. Had been taking immodium (about twice daily) and had watery stool but only once a day. Now just an hour ago there was a lot of blood *sigh*. No known hemorrhoid either, but a burning sensation. First was about to admit myself to hospital tonight out of panic, but stopped, will tell doctor tomorrow and see what he thinks.

    Just need a day or two of break from all this. Sad

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Sarah_78 super sorry to hear about your issue. Let us know what your doctor suggests. I hope it resolves quickly for you. Sending good thoughts.



  • mindthief
    mindthief Member Posts: 62
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    Sarah_78 - yikes! That sounds awful. I do remember someone (the chemo nurse maybe?) mentioning bleeding hemorrhoids as one of the possible side effects. Hopefully you got some reassurance and advice from your MO by now.

    How is everyone else holding up?

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Morning All,

    In the depths of round 3 today and getting some bone pain today. I've been sleeping 10-12 hours each night and taking a nap or two during the day. Does anyone else have a strange feeling that their body is not connected to the ground? When I walk, it almost feels as if my feet are a pace or two behind. So weird, like a delay.....just want this to be over!

  • spades2525
    spades2525 Member Posts: 47
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    Sarah I hope you are doing ok and have some reassuring answers!

    Hummingbird, I am in the thick of round 2 and am also sleeping so much and when I’m awake my brain is not working well and my body feels like jello.. like my legs won’t hold me.

    I felt so proud of how much water I drank after the first round. But this round, although I have terrible dry mouth the metallic taste makes water difficult to drink. A little tip a friend gave me is to freeze cubes of Pedialyte. Sucking on those so much easier than trying to drink the Pedialyte or drink the water.

    Hoping I start to turn a corner tomorrow!

  • txlorelei
    txlorelei Member Posts: 68
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    I’m another one whose walk feels “off” for several days post chemo. I feel a bit lightheaded and spacy so I make sure to hold the handrails while on the stairs.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi all, I am Day 8 of Cycle 8 and have the sleepies as well. 2 naps each day which is so unusual for me. My taste is gone as well and even water tastes horrible, which I usually love. I've switched to 7up and Ginger Ale which does better for me right now. Also noticed my lips and fingertips are very dry and sensitive. Been using vaseline on my lips and aquafor on my hands. I start back at work (from home) tomorrow for 2 weeks on, one week of (during chemo) so hope I can manage without my naps!!!!!

  • sarah_78
    sarah_78 Member Posts: 119
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    1 week before 2nd cycle here, energy is back, big D is gone. That with blood was a one time thing, doctor thought it was because of me being such a consistent member of Team D, ugh. They will check it out though to make sure.

    Didn't get growth factor but lymphocytes bounced back to 2.4 today (It was as low as 0.4 during nadir). But I gave up on refusing Neulasta because had to spend whole week in hospital, getting checked after it fell to 0.4. Had to give blood 3 times, 2 doctor appointments. Also my blood pressure is too high and had to be prescribed medication today. Hope it does the trick.

    Until then enjoying the last good days and looking forward to get another of the cycles done hopefully next Friday.

    @Spades2525: I got some apple flavored water, those I can drink better than plain water, mix them with water to get less sugar. Also what helped was XyliMelts from Tiffany's tips, especially when I am sleeping, that keeps the dry mouth at bay, which is also important to protect the teeth. They slick on your gums and last all night.

    @Debbie: Can you nap while working at home too, like nap and go on working afterwards? Hope they are a bit flexible on that. I will be giving 2 lectures next week and had been working on and off, I think it should be doable if you just do it in your pace and not stress yourself. It also gives a feeling of normalcy we all need. My hands are also terribly dry, I am drenching them in cream at night before I sleep, wake up with nicely moisturised hands :-)

    @TXLorelei: is your blood pressure too low? Hope you feel better soon.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Sarah_78 - very good news for you!!!! Happy to hear. I still have the runs, since Day 4 of Cycle 2, now on Day 9. My doc has put me on a liquid diet for a day to try and settle things down. She also wants me to drink Pedialyte. Taking Lomotil as well. More blood work tomorrow to check electrolytes etc. I am SOOO ready for the Big D to be over with. Also still no taste but hopefully soon.

    Yes, I could probably factor a nap into my day if needed as my work is super flexible and understanding. So far I am doing good without one.

    Happy weekend to everyone!

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Anyone else getting nosebleeds? It's not that often but way more than I ever had in my life.

  • sarah_78
    sarah_78 Member Posts: 119
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    Dear Debbie,

    I didn't get nose bleed, It might be due to what they prescribed me to keep my nasal mucous skin hydrated. It is called "Bepanthen Eye and Nose Ointment", I apply it inside my nose before I go to bed and massage to get it up. Try it, maybe works with you too. It should also work with eyes but not sure how to apply it on my eye, hence my eyes are a little red since yesterday. I will ask for drops for that one.

  • mindthief
    mindthief Member Posts: 62
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    Debbie - No nosebleeds for me (yet) but I have a new crop of symptoms coming up all the time — the start of hand and foot syndrome, constant bladder irritation, and just found out my RBC count is falling already. If it’s not one thing it’s another! I’m sorry you’re still dealing with diarrhea as well. That’s a long time.

    Sarah78 - glad you’re feeling better!

    Spades2525 - I had a lot of trouble with water this past cycle as well. It’s annoying because I usually drink nothing but water. I’ve been drinking more herbal tea and sometimes cranberry juice when I’m desperate.

    I’m on day 2 of cycle 3. So far so good. I had to do a phone consult with my MO this time since she had cold symptoms, so unfortunately couldn’t check the spot onmy breast but she said it’s highly unlikely to be skin mets and sounds more like hyperpigmentation which can happen with chemo (so there’s an FYI for everyone). She’s going to check it when I’m back in two weeks but I feel a lot better after talking to her. The one nice thing about now being a “sick” person is that you’re never long from seeing your doctor!