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Starting Chemo February 2021

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  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    LW422, I'm glad your oncologist knows, now you can put that in the rear-view mirror.

    LW422. JN5000, CAWR...Ladies.....I am here with you every bit for this hair thing....I have been struggling bad. Honestly...I had cancer in my breasts...bye...see ya...but my hair.....WOW...I just can't stand the thought of losing it. I am grateful we can all share here. NONE of us are the only one who feels this way. We need the reminder when our thoughts get heavy, and the days seem overwhelming. So pity-party-r-us we are in this together!!! I am a week or so from shedding...I think I will just shave it....but honestly not sure what I'll do until I do it.

    Maddy83f, Thank you for providing a down the road light in our tunnel!!!

    Very Grateful for you ladies!!!

    Julie

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    I'm also grateful for all of you; it makes the road we're traveling a little less lonely to share it with people who understand. I hope you all have a good week with treatment. My next Taxol is Wednesday.

  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    image

  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    My heart breaks for all of us, the hair keeps coming out, 1st chemo was February 10, 2021. I know everyone is different but for those who have not had shedding, it comes out in clumps, it can be traumatic, sorry for the picture but just wanted you to be prepared as much as possible

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    Thanks for the picture, AB45. I hope you're feeling better; how are the mouth sores? Do you have a treatment this week?

  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    LW422

    Chemo is Wednesday, same day as you. Mouth sores are better, thank you!

    Hope all is well and we all have minimal side effects.

  • HopeHeal
    HopeHeal Member Posts: 137
    edited March 2021
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    Nice to meet you all. I was just dx with IDC grade 3 with details pending further workup. Being that it's grade 3 I will probably need chemo. I am terrified since I have osteopenia and a hip issue that was successfully treated. If the chemicals destroy my hip I will need a hip replacement which is major surgery, on top of the already weakened immune system. I don't know if a surgeon will even do a hip replacement on a chemo patient, so I won't be able to walk well. And I live upstairs.

  • HopeHeal
    HopeHeal Member Posts: 137
    edited March 2021
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    Nice to meet you all. I was just dx with IDC grade 3 with details pending further workup. Being that it's grade 3 I will probably need chemo. I am terrified since I have osteopenia and a hip issue that was successfully treated. If the chemicals destroy my hip I will need a hip replacement which is major surgery, on top of the already weakened immune system. I don't know if a surgeon will even do a hip replacement on a chemo patient, so I won't be able to walk well. And I live upstairs.

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    Hello Hope; it's nice to meet you and I'm very sorry to hear of your diagnosis. I was diagnosed on January 20 and I'm still reeling, but I'm not quite as anxious as I was then. I'm sure your treatment team will take your existing conditions into consideration, so try not to worry about things in advance. (Easier said than done.) I wish the best possible outcome for you and all of us.

    Let us know what treatment plan your doctors set out, and hugs to you.

  • HopeHeal
    HopeHeal Member Posts: 137
    edited March 2021
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    Thank you LW422 for your kind words. Glad to know the doctors will consider my other conditions because my experience with them is that they don't unless I really remind them. They need to absolutely consider the whole body when recommending these tx. I take it you doing the chemo before the surgery? Hugs back and I wish you and everyone much luck.

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Hi HopeHeal.

    I was diagnosed the beginning of January, then had lumpectomy and began chemo AC+T last week. Those first weeks around the diagnosis were so hard for me. We are all here for you and will listen. I have not started to lose my hair yet, but I'm almost halfway through the first cycle so it's coming soon. It's daunting, but for me this treatment forces me to take it one day at a time. There are some good lists of supplies on this website. I got what I could just so I wouldn't need anything in the moment. That's helped ease my mind, but everyone's different. It took some weeks before I was able to actually read anything or learn more than what my doctor told me. It was too hard and I want to give myself room to handle this however I best can. Take care of yourself. This group has helped me because it helps me feel not alone with these crazy experiences.

    Thanks for the photo AB45 -- trying to let the reality of that sink in a little bit.

    For those getting chemo this week, I'm thinking about you!!

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    Hope--definitely remind your treatment team of any issues. We are our own best advocates when it comes to treatment, so don't be timid about speaking up.

    Yes, I drew the short straw of "Inflammatory Breast Cancer", so my treatment begins with chemo. I'll have Taxol, then AC, then the mastectomy, and finally radiation. So practically an entire year of fun! (And I pray that will be the end of it!)

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    JN5000--I never had a clump of hair fall out like AB45's picture; mine is more of a constant "rain" of individual hairs everywhere, so I guess even hair loss is different for each of us. I hate that I can see my pink scalp through what used to be thick hair; it really upsets me to look at myself these days so I avoid mirrors. I barely recognize myself with my "steroid puffy face" with red flushed cheeks and a boy haircut.

    AB45--I'll be thinking about you tomorrow; hope it goes easier for you this time.

    Hugs to everyone having treatment this week!

  • Navygirl2003
    Navygirl2003 Member Posts: 2
    edited March 2021
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    I just found these forums today. Will be having my third Taxol Thursday. My port decided to do a back flip this morning when I rolled over, so they get to fix that tomorrow!

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    Hello NavyGirl and welcome to the place none of us ever wanted to be. I'm also having my 3rd Taxol this week so we can compare notes on how it's going.

    How weird about your port. Mine was installed a month ago and is still very "tender" feeling, especially when the chemo nurse accesses it. That numbing cream doesn't do a thing for the pain when they push on the healing port in my experience. I hope it's not a big deal to get your port flipped back over; just one more thing to deal with.

  • CAWR
    CAWR Member Posts: 13
    edited March 2021
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    Hi all,

    Out of curiosity, since many of us are on different treatments and regimes, how much time do you have between treatments? I'm on taxotere and cytoxan (TC?) and I get treatments every 3 weeks (first was feb 9, and yesterday mar 2), and I'm in for 6 treatments in all.


  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    I'm A/C (Adriamycin and Cytoxan) every two weeks for 8 weeks (4 cycles), then Taxol once a week for 12 weeks. I hope yesterday's treatment went well, CAWR.

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    Currently I'm on Taxol; once a week for 12 weeks. Then I'll graduate to AC; once every three weeks for 12 weeks (4 dose-dense).

    I had Taxol #3 today and it went well. I notice a pattern in that I get home from treatment, eat dinner, and then have 2 or 3 episodes of diarrhea. So far that's the only SE I notice on treatment day, except for the weird taste buds thing that makes everything taste uber-salty and kind of metallic. I had a Coke earlier and it tasted like brake fluid smells.

    I didn't sleep well last night so I'm fighting to stay awake right now. I don't want to nap and then stay up all night again!

  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    Hi girls....

    Just checking in on those that had treatments this week. Praying for you all and hoping you all tolerated them well and are feeling ok.

    Julie

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    NavyGirl--thinking of you today and hope all goes well. How big of a deal was fixing your port? I'm always terrified that mine will "shift" since I'm a side sleeper and it gets kind of squished while I'm sleeping.

    AB45--did your treatment go OK yesterday? How are you?

    I woke up about 4 a.m. feeling really queasy and "sick" and with some acid reflux. I managed to prop myself up with a couple of pillows and went back to sleep; this morning I feel kind of "iffy" but not bad. I'm chugging water; anything to help mitigate SEs!

    How is everyone today?

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    JVFireball--did you decide what to do with your hair yet? I just couldn't shave mine, but I had read of other women who didn't having sore hair follicles and I didn't want anything else hurting!!

    Have you tried the prescription mouthwash? Is it nasty? I'm very finicky about stuff like that and wondered if it would gag me. Thankfully I don't have any mouth sores yet but I have a bad habit of gnawing the inside of my cheek when I'm anxious so I'm trying really hard to knock that off. I'm swishing the baking soda rinse several times a day, though. I also sucked on crushed ice during the Taxol.


  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    LW422,

    Hey there. Sorry you felt sick last night. No fun, but I am glad you are feeling a bit better. It's not prescription but I have been using Biotene Dry mouth oral rinse. It's not the best tasting but I can't disprove a negative but no mouth sores so far. A friend of mine who did before all of us swears by it.

    For the hair I have left it be. I am waiting until it starts coming out and then I plan on shaving it. But then at one time I planned on shaving it ahead of it falling out, so truth be told I will know after it happens.....LOL

    Also scheduled my COVID shot for Monday, so hoping time frame will be ok middle of cycles. Hope to get both shots before the later rounds where I am likely sicker.

    Glad tomorrow is Friday...ready to not be at work.

    Cheers

    Julie

  • Navygirl2003
    Navygirl2003 Member Posts: 2
    edited March 2021
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    So, come to find out, what I thought was it flipping was the pain of scar tissue breaking up near or attached to it when I rolled over! I feel like an idiot, but they double checked everything that it was all still properly attached.

    Tummy is a little upset this morning after my 3rd Taxol, but it may also because I had salsa and chips last night?? I've also been awake since about 0215 despite taking some melatonin. I should sleep well tonight!

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    NavyGirl--I'm glad your port was OK, and hope that you can get some sleep tonight. I had trouble going to sleep last night and was still wide-awake at 3 a.m., but I got to sleep in.

    Julie--I hope your vaccine goes smoothly without additional SEs. I think I'm going to hold out for the single-dose Johnson & Johnson vaccine. Hopefully I can get it before I start AC or I'll just wait.

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Hi all.

    I'm scheduled for first dose of Pfizer vaccine next Wednesday, the day before my second AC treatment. I'll let you know how it goes during AC. I scheduled it -- and got doc approval -- for the day before treatment so that my white blood cells are at their highest. Hopefully no SE's from the vaccine, but I'm so glad to get it -- it's kind of scary getting the WBC so low at the nadir. I'll feel better protected.

    I hope you all are doing okay!! I'm glad your port hadn't flipped, NavyGirl! I'm still not used to the darn thing!

    Jennie


  • CAWR
    CAWR Member Posts: 13
    edited March 2021
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    Hi all. Happy Saturday. I'm grateful for the weekend as well, JvFireball. Long post here about hair...

    I did make the plunge last weekend and shaved my head. Like AB45, I had been shedding giant clumps along with single hairs everywhere, and I couldn't take it anymore. My head was also extremely sore from the hair just pulling I guess. We pulled out the clippers to buzz it, and then I used an electric razor and one of those intuition razors to get it close. I took a shower and gingerly rubbed my head with a washcloth and gentle shampoo (it was so sore and dry), and doused it with argan oil after I got out. I do still have stubble, so a soft snug head cap to sleep is essential. I wash my scalp with gentle shampoo every day, and pat oil on.

    I'm not saying I love it, but I don't regret doing it. Buzz wasn't bad, the mr clean look was hard to take. But my head feels SO much better (and still does a week later), my scalp is no longer painful and irritated now that the hair is gone. So yeah, I can say it will be a challenge for most of us because it is rather shocking, but I'm getting more used to it and am learning quickly what I am liking/preferring in the the head wrap dept. I imagine it doesnt help to feel poorly at the same time as getting used to it - my 2nd treatment was tues, i shaved sat - so I've been feeling pretty bleah about it this week. If you take the plunge, expect ups and downs each day. Sometimes it's a 'heyyyyy that isn't so bad, nice scarf!' Other times it's an *expletive*. Sometimes both within the same 5 minutes.

    I do have a wig, but will likely only use it when I have zoom meetings with people who don't really know me. I'm a professor at a state university, and I'm lucky to be teaching online. My students know my diagnosis and that I'll lose my hair. My co-instructor, to whom I am eternally grateful, taught this week after my treatment, so I guess I'll figure out what I wear for my students next week. They really want me to wear a punkrock pink wig, but I don't think I have that in me. I have a couple of headscarves that I think are pretty, so I'll tackle that soon.

    We've got to give ourselves time to accept and see ourselves in this most publicly obvious component of our treatment. I'm working on it. Cheers to you all as we tackle that together.

  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    Hi All

    Sorry a little late posting an update, I shaved my head on yesterday so I am now officially bald, tough!!! I feel for all of us who are now bald, regulating body temperature is a beast for me. Wigs are hot!I had my 2nd Ac on this past Wednesday, oooo the naseau but trying to stay on top of the meds. I also have the puff face from steroids but the worst is how the steriods affect ur sleeping patterns. I know this week will be my exhaustion week, as my blood counts will take a drop. Just taking it day by day and thinking of you all! I keep thinking, one day this will be all over but right now, it feels like that is veryyyyy far away! Hang in there everyone, I am thinking of you all, this too shall pass!

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Thanks for the post AB45! Glad you got done with the second AC!! Congratulations!! Day by day is the way -- we'll make it! I'm sorry you're dealing with nausea. My second AC is this Thursday. I'm more nervous this time than I was for the first one now that I've been through it -- but at least I know I can do it. Today I messed around in the garden (with gloves) and then went onto the hammock for a while. The good moments are to be savored! No hair loss yet. I kind of wish it would just happen already, get it over with. And it'll be proof that the chemo is doing what it's supposed to do and all the difficulties are being endured for a real result.

    Onward!!

  • aviva5675
    aviva5675 Member Posts: 836
    edited March 2021
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    Started my 4 rounds of TC on Thurs. Neulasta onpro went off Fri. So far not terrible. Very bad headache and super tired, but not nauseous or in bone pain. No appetite. JJ vaccine shot tomorrow!

  • lw422
    lw422 Member Posts: 1,409
    edited March 2021
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    CAWR--good for you on the hair thing. We all have to come to grips with it for sure.

    AB45--glad you checked in. Sorry you are suffering with nausea and I hope that gets better. Sounds like we are all joining the "bald is beautiful" club. I have steroid puff-face, too. Just lovely, haha. Take care and I hope you feel better soon.

    JN5000--good luck with the 2nd AC this week. And good for you for hanging onto your hair! When it starts to go, it goes fast.

    Aviva5675--glad your TC is going OK and no horrible effects from Neulasta. Hang in there!

    Good luck to everyone this week. My 4th Taxol is Tuesday and so far, so good.