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Chemo starting December 2018

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  • mcbaker
    mcbaker Member Posts: 1,787

    Thank you Becky. We can laugh when it gets a bit more real. I bought a cheap electric shaver yesterday. It does well with leg hair and stray chin whiskers.

  • WC3
    WC3 Member Posts: 658

    cherd:

    I didn't get mouth sores with TCHP except when I accidentally bit my lip. Your mouth may become sensitive for a week or so though. I would consistently get an inflammed tastebud on the tip of my tongue from it hitting the back of my teeth. Normal toothpaste was irritating though so I used Biotene toothpaste...it can often be found away from the other toothpaste in it's own little area, and I would ice the inflammed tastebud with popsicles.

  • lilliangish
    lilliangish Member Posts: 54

    Hello She-Roes! Hope everyone is doing good.

    Nanette ~ thank you for mentioning bone and joint pain, but I am sorry you're experiencing that. It's good you shared all your feelings with the nurse. For the past three months, my lower back has felt kind of weird. MO tells me to relax, it's nothing. He is very certain about that, without running a single test. Now starting last week, I've now moved into soreness in my lower back when I sit down. Of course, I think the worst (and still do). But I'm making a list of all the OTHER reasons my back could be sore, and even though I'm not on Taxol but instead Taxotere, perhaps the chemo is making my pelvic bone sore. I'll put that on the list. I am asking my MO about this on Monday when I get my next treatment. Having a bone scan on Jan 2 that my radiologist ordered even though she also wasn't worried, and I admit I am trying hard not to be scared about seeing the results.

    JoyontheJourney ~ Welcome! For your questions about mouth care, I found BeckyJL's post very informative. Scroll up on this thread to 12/19. It seems we all kind of scramble in some way through our first treatment. Hope you're doing ok. Questions are important and keep asking (that's at least my motto).

    Flower ~ I live in San Diego, so cold doesn't have the same meaning here as the East Coast, but I'm headed to Barefoot Dreams website anyway. It was 52 degrees here last night and my head was freezing! Thank you for the recommendation.

    MarneyMay ~ I'm getting rides to treatment too. This is mostly because everyone asks how can they help me and I just don't need much. The doctor did tell me not to drive to the first couple treatments until I was sure I could do so....but this is a way my family can stay connected. Totally get the feeling of wanting peace and quiet.

    AngieinAmsterdam ~ Welcome to you too! I am having my next treatment on Christmas Eve as well. And Mammaprint confirmed chemo was necessary. Not the best news I've ever had! I'm glad you're with us and I think all of us can completely understand how hard the first treatment is emotionally. I'm sure you'll do great, but let us know.

    BeckyJL ~ I confess I giggled about the Velcro effect. I know EXACTLY what you're saying. There's still a place on my head that feels like Velcro. I was going to take your advice with the Nair, but forgot to get some at the drug store today. I have just a couple more spots to finish. The hair on my arms is now gone. I was told the hair loss starts at the top and works it's way down the body and when it grows back, it starts at the bottom. That doesn't make sense to me logically though, so perhaps that's urban legend.

    Today's hat is a soft beanie that is a camouflage pattern. I'm hiding from breast cancer today. :) I picture it looking for me, going "hey, where'd she go?" and then the chemo flanking and gunning them all down. Ha!

    Tomorrow....Decadron steroids and Monday I do this whole thing again. Ugh. "Thank you sir may I have another!" Just had an Animal House vision.

    We can do this!

  • nanette7fl
    nanette7fl Member Posts: 412

    oh Becky sorry for the giggles on my end but I loved your hair loss tale. I can only imagine how hard it was to have to go through it (mines still thinning) but I'm glad you did find humor in the journey ((hugs))

  • Gigi71
    Gigi71 Member Posts: 47

    Hi Everyone! My last surgery for this year with my left breast removed Dec 4th with expander put in and chemo port installed ready for medicine on January 3rd! Still have my drain from surgery, it has finally started slowing down. Hope to have removed this Wed!! I will start 12 weeks of Taxol then Herceptin! Taxol once a week and Herceptin once every 3 weeks for 9 months! How did Taxol affect others? My oncologist said it was very mild and I should be just fine. I know chemo affects everyone differently but any info will be much appreciated! Merry Christmas! We all have lots to be thankful for!

  • nanette7fl
    nanette7fl Member Posts: 412

    Hi Gigi and welcome. Here's to hoping your surgery continues to go so well Taxol is considered mild but if they throw in the herceptin it starts to get a little rough. (That's whay I'm on as adjuvant treatment..I get 1 of each a week). I'd say based on our collective SE here it's the nausea, body aches and tiredness that affect most. But hopefully a long termer will pipe in

  • SaraCatherine
    SaraCatherine Member Posts: 1

    I start AC on 12/26. I had a DMx 10/24 and my onco6came back at a whopping 35. I am working to prepare myself for all the SEs. Your info has been invaluable. Still, the unknown has me terrified.

  • MarnieMay
    MarnieMay Member Posts: 15

    Hope everyone has a good holiday My hair started coming out during my shower yesterday and today. I end up with quite a handful each time after washing my hair. When I thought about people losing it in clumps I expected to have bald spots, but it seems to just be about 25% thinner everywhere. My scalp hurt last week, but now that it is falling out, it doesn't hurt.

    One of the side effects i am having from Taxol is a sore upper neck into the scalp area. My neck feels stiff and sore to touch, kinda like swollen glands or bruised muscle. My oncologist didn't seem to know why. Has this happened to anyone else?

  • lilliangish
    lilliangish Member Posts: 54

    Welcome to the group SaraCatherine, but I’m sorry you’re in this same boat. Good job preparing for SEs. I found myself overprepared, because like you I was terrified. It wasn’t near as bad as I feared.

    I hope the same for you. :). Let us. Know how it goes

  • anx789
    anx789 Member Posts: 226

    Merry Christmas everybody! Tomorrow is my 2nd infusion, feeling a little bit anxious.

    Lillian, how are you feeling today? How did it go yesterday?

  • mcbaker
    mcbaker Member Posts: 1,787

    Anxious lady;

    My second, also. They will probably knock me out with benadryl again. I have decided to take plenty during the week, too.

  • santabarbarian
    santabarbarian Member Posts: 2,310

    Have any of you tried fasting or fasting mimicking prior to chemo, to reduce SEs?

  • lilliangish
    lilliangish Member Posts: 54

    Hi

    I wish I could say I was doing ok after my infusion yesterday. I woke up very early this morning shaking like a leaf, vomiting and feeling terrible! Even though I didn’t have a fever, it sounds from my oncology instructions that it’s a sign of infection. Just figured it out about an hour ago, so I took an antibiotic they had given me for this situation. Always happens on a holiday!! Feel better but not great, hopefully can stay ok until tomorrow when I can call my doctor. They have a 24 hour hotline but I don’t feel bad enough to call it now. Did this morning!

    Plus...yesterday I made the mistake of telling the nurse practitioner about my back pain, and she strongly inferred it was bone metastasis without any tests! I told her I was getting a bone scan soon and she said good because it “sure seems like something is up and progressing.” On Christmas Eve, 2 weeks before I can have the test. Sleep well Lillian! This back pain started just a couple weeks ago, and could be a lot if things. I’m kind of mad at her for doing that to me

  • Flower216
    Flower216 Member Posts: 87

    Hi!

    SaraCatherine-good luck tomorrow!

    Lillian-I'm sorry you had such a hard day...feel better soon!!!!!!!! About your nurse practitioner-first of all, she does not have 
    "people skills". She sounds like she was out of line giving you a possible diagnosis like that without seeing test results. Can you try to avoid dealing with her and talk directly to your doctor?

    Tomorrow is my second treatment. They are supposed to be three weeks apart, but due to the holiday, it was 3 1/2 weeks, which was nice to have the extra time feeling good. I try to enjoy myself, be social, but all of a sudden the black cloud comes back to haunt me and brings me back to reality. Will we ever be able to feel normal again?



  • nanette7fl
    nanette7fl Member Posts: 412

    Merry Christmas everyone

    Lillian sending you tons of hugs and prayers

  • anx789
    anx789 Member Posts: 226

    Lillian, yes, backpain could be because of a lot of things... bad posture..your bed....or stress...I had back pain weeks before my breast surgery that I thought of the worst, I had bone scan the day after my surgery and it turns out nothing. I also had a gynecologist that told me my uterus is very bad while doing uterine biopsy and turns out negative, too. So don't worry Lillian, stay positive, don't listen to this, unprofessional nurse.

    Hope you feel better, sending you hugs ❤️

    SaraCatherine, McBaker, Flower, me too will have my 2nd infusion tomorrow. Sending good vibes and prayer that we will all have an uneventful day and easy round.

  • MarnieMay
    MarnieMay Member Posts: 15

    Lillian - I agree exactly with what Flower says. That nurse should be avoided. Did the pain start with treatments, because bone joint pain is a side effect of taxotere.

  • sweetolyve
    sweetolyve Member Posts: 9

    Hello ladies!

    I'll be heading out tomorrow for my second round. I did not do any fasting this time, but I will definitely eat very light tomorrow. I'm sure that doing so last time helped tremendously with the nausea.

    But, with that said everyone is still in my prayers for quick recovery and healing.

    I'll check in later.

    Debbie...(0;

    ><>

  • BC2chick71
    BC2chick71 Member Posts: 7

    Hi Everyone,

    I start Friday TC every weeks.... I've been putting my game face on. Today I took off work and cleaned like a maniac, food prepping and buying stuff for side effects.

    Can someone tell me about the claritin? Is it the D that you have to buy behind the RX counter or the one on the shelf?

    As anyone bought headwear yet?

    I'm so thankful for this group.



  • lilliangish
    lilliangish Member Posts: 54

    hi BC2chick! Last month I took the D version of Claritin and still had some pain. Someone on another thread advised taking regular Claritin without the D...saying it worked better. Just started taking it yesterday, so I don’t know yet. The regular version was cheaper and available on Amazon! Good luck, and I bet with that game face you’ll do great. I’m having fun with hats and scarves.

    Flower, we are not only going to feel normal again someday....we are certainly going to appreciate every single day ahead of us.

    The bad news I just found out I have to see nurse Ratchett on monday since my onc is on vacation. Checking my blood counts a week after chemo. I'm going to try and get someone else. She and I are kind of done. You are right Flower. I need to stay away from her

    Today I called the triage line to tell them about the infection. I'm fine now with an antibiotic, but the guy said "oh and btw, nurse x asked if you scheduled that bone scan." I had already scheduled the bone scan before I met her! Anyway, I asked the triage guy...hey can chemo cause low back pain?

    He said, "oh yeah, taxotere and Neulasta...you bet."

    Geez.

    Anyway, rant off. I sincerely thank you guys for your help.

    Ladies with treatments today and this week, you are in my thoughts. Please check in how you’re doing!

  • BeckyJL
    BeckyJL Member Posts: 81

    BC2Chick - Not the claritin D, just plain old claritin. I was given the generic (cheaper) which is called Loratadine. I go Friday for my second round. Hoping to get ahead of the SEs this time.

    Lillian, stay strong.

    Hope all had a wonderful holiday - looking forward to the New Year!

  • KellieMarie
    KellieMarie Member Posts: 2

    Hi everyone! So glad to have this group! This entire website has been so helpful for my journey so far. This is my first time posting, although I have been using this website since diagnosed in September.

    I started TCH on Dec 18th. I am feeling much much better than I was during the first several days after the infusion. I mainly had digestive issues, nothing too terrible, and bone/body aches. I'm assuming the aches were from the Neulasta. I did take the Claritin twice daily, but still had issues. However, from what I've read, the pains could have been much, much worse.

    My main digestive issue was diarrhea. I'm actually still taking Imodium. I have a sensitive digestive system already, so I wasn't surprised. This was my main reason why I had to stay home from work for several days. The bathroom at my office is just too far away in an emergency!

    I tried fasting for 48 hours before and 24 hours after chemo to reduce side effects. Since I have nothing to personally compare this to, I have no idea how much this did or didn't help. Aside from the diarrhea and some nausea, my SEs aren't too bad so far, so I think I'll keep doing it. I may try a fasting mimicking diet next time however.

    Well if you made it this far, thanks for reading. Much love to all of you!

  • KellieMarie
    KellieMarie Member Posts: 2

    Hi everyone! So glad to have this group! This entire website has been so helpful for my journey so far. This is my first time posting, although I have been using this website since diagnosed in September.

    I started TCH on Dec 18th. I am feeling much much better than I was during the first several days after the infusion. I mainly had digestive issues, nothing too terrible, and bone/body aches. I'm assuming the aches were from the Neulasta. I did take the Claritin twice daily, but still had issues. However, from what I've read, the pains could have been much, much worse.

    My main digestive issue was diarrhea. I'm actually still taking Imodium. I have a sensitive digestive system already, so I wasn't surprised. This was my main reason why I had to stay home from work for several days. The bathroom at my office is just too far away in an emergency!

    I tried fasting for 48 hours before and 24 hours after chemo to reduce side effects. Since I have nothing to personally compare this to, I have no idea how much this did or didn't help. Aside from the diarrhea and some nausea, my SEs aren't too bad so far, so I think I'll keep doing it. I may try a fasting mimicking diet next time however.

    Well if you made it this far, thanks for reading. Much love to all of you!

  • Teri1975
    Teri1975 Member Posts: 3

    Do you mind me asking what your oncotype score was? I am trying to finalize my decision on whether or not to do chemo, but I think I am leaning towards it.

  • wanjiru73
    wanjiru73 Member Posts: 4

    Holding you up as you get into Sessions. Here in Seattle making the first Surgeon' office visit tomorrow.

    I have decided to seek 2nd and 3rd opinions, what I have is DCIS, doing as much research as possibly can.

    Good luck!

  • wanjiru73
    wanjiru73 Member Posts: 4

    Merry Christmas!!!

    Newbie in town, will let you know if and when I jump on the wheel!


    regards!

  • B74
    B74 Member Posts: 43

    Hi everyone, I'm just ducking in from the Jan 2019 group to ask a question... With the benefit of hindsight, is there anything you wish you'd done (or done more of) before starting chemo? I'm due to start in a week and feel like time is slipping through my fingers and I should somehow be making the most of the last days (for a while) of feeling healthy. Thank you.

  • MarnieMay
    MarnieMay Member Posts: 15

    Teri1975 - my oncotype was 26. My oncologist said if it had been below a 25 he might have recommended no chemo. I am glad to have the chemo though due to the her2 positive.


    Nanette- I had a nurse push the steroid too quick and my private areas burned terrible. I lifted up my bum off the chair and said slow down! lol I knew why it had happened and it wasn't scary because of your previous post. :)



  • mcbaker
    mcbaker Member Posts: 1,787

    B74-- I have had two chemos, and I still generally feel fine. Spend your time shopping, housecleaning, cooking meals and freezing them for days when it is an effort to nuke something. Go out and be among friends, remembering that you may need to isolate from large groups of people at times later on. Make arrangements to have someone come by and help you with housework later. Arrange for some enjoyable activities that are not taxing or active, such as genealogical research, knitting or crocheting (http://www.knotsoflove.org/patterns), reading, computer gaming, quilting, writing, chatting here.

  • BeckyJL
    BeckyJL Member Posts: 81

    Teri - my onco score was 29. The percentages that it knocked off my chance of cancer returning were significant enough that I thought it was worth it. I'm 51. I want to see my kids marry, I want to go to Europe with DH, I want to have loads of fun when I retire, I want to play with my grandkids (if I have any). I was in the process of losing tons (almost literally, I was down 95 lbs last week!) to get healthy for all these reasons and was loving it. The percentage reduction was between 7 and 9%. That was enough for me. I have three months of yuck, lost my hair, but if it means my odds improve even just 7%, for me, it was worth it. I see the SEs, even the bad ones, as temporary. I can endure. My reasons, my treatment, my score make this an incredibly personalized decision. I do not believe it is a one size fits all, even for someone with the exact same diagnosis and score as I had. I'd recomend, reading, talking with DR, talking with family and friends. But ultimately it is you that bears this burden. Make a decision and then go with it. Hope this helps.

    B74 - I think MCBaker nailed it. I will say, on your first follow up with the nurse practitioner, take something to write on! I had DH go with and we BOTH forgot our pads and pens. She changed some of the med amounts to combat SE and we both thought we remembered what she said - turns out we both remembered differently, lol. I ended up with some serious bone pain, gastric pain (turns out it was probably gas, taking my omeprozole solved it pretty quickly once my nurse clued me in), headaches and I survived. I felt like shit (pardon the language, but that was how it was) as if I had the worst flu of my entire life. And even so, I taught 2 full days feeling like that. I survived. I know if it is as bad this time, I'll survive. It gets better. For the majority of my three weeks after my first chemo, I felt normal, though I was constantly questioning what "normal" meant. DH would ask "You doing ok? You tired?" I'd answer "Yeah, I think so, but I am pretty tired. . . are you tired?" DH: "Yeah, I'm very tired." Me: "Perhaps me being tired is just normal? I did get up at 6 am, walk the dog, clean, bake, play games with kids . . . yeah, I think I'm just tired." It's a game we call - Is this normal or is this chemo? Hope this helps too. Check back in here and let us know how you do!

    Hope you all don't mind my long posts - it helps me process! Tomorrow is #2 for me - wish me luck!