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Chemo starting December 2018

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  • mcbaker
    mcbaker Member Posts: 1,833
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    My MO is Muslim, so he had no significant reservations about scheduling the beginning of my chemo right around Christmas. My reasons for going along with it: I live alone, and no family in the area, no special activities, and I got my presents sent. Fear of waiting two weeks. More interest in the religious aspects than the secular festivities. Gratitudes are that I live alone, thus less chances of catching colds and flu and suchlike. Gratitude that despite the fact that I have minimal income, I am living comfortably. Gratitude that I am able to save up enough money that I can take a vacation from chemo in Feb to go down home and visit son and other family. Gratitude that I have enough hobbies and interests to keep busy. Gratitude towards the medical treatment I am receiving allowing me to live a normal lifespan of 85 years. The sermon at church yesterday was about this, with me in mind. Now, all I have to do is get through this week with port installation tomorrow, and first infusion on Wednesday.


  • nanette7fl
    nanette7fl Member Posts: 412
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    MC and Becky My oh my thank you both for such uplifting posts....Helping me put things more into perspective. It's going to be a rough week here as the costs of chemo and so many doctors copay's for the past 2 1/2 months were beginning to bum me out. We have 5 children and 8 grandchildren and I LOVE celebrating......anything (birthdays, holidays, anniversaries...) and now with it 7 days before Christmas I was getting really down. I have no presents NONE and it's killing me. For the first time in I don't know how many years my tree will not have presents under it from Nams & Papa, or Mom & Dad. Then I read your posts and I know that 'my' children will understand but my DH 2 children will not and I also know which 4 of the 8 will be okay with just visiting Nams & Papa on Christmas Day because they love us and really our grandchildren do NOT go without during the year. If I find out they need/want something I get it.

    I needed your posts to put me back "into perspective. This holiday is spiritual more than worldly for me and that's the way it should be as far as I'm concerned..

    So thank you both from the bottom of my heart!

  • nanette7fl
    nanette7fl Member Posts: 412
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    Flowers!!!! Welcome honey. I know you'll love this group.......THEY'RE JUST GREAT!!!

  • misha13
    misha13 Member Posts: 71
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    Jumping on to your chemo thread just to give a little hope since many of you seem to be at the start: I am now three weeks PFC or post final chemo and want you to know you will get through this!

    I had four AC’s and twelve Taxols starting in July. I kept searching this site for how long until I would feel better and could never find it, hence the reason for my post! 7-8 days after and I started feeling better. My energy returned and I stopped being winded by simple housework. 2 weeks later and the metallic taste stopped, and I no longer had to take Pepcid every day for my stomach . I could eat a full meal again and it tasted good!! My face has color to it and my skin isn’t so dry and flaky now.

    I know it seems like the side effects will last forever, and chemo will last forever,but they won’t! Your hair will begin growing again during Taxol, and you will get through this!

  • mcbaker
    mcbaker Member Posts: 1,833
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    It is nearly seven o' here. My transportation leaves at between 6:00 and 6:40 in the morning. Probably closer to 6:40. I go to patient education in the morning, 7:45 check-in time. Immediately after a three-hour class, I report for port placement. I am depressed as hell, which often happens with me in the evening. If I had someone to talk with, I would probably be blubbering my eyes out. As it is, I will take a shower as soon as I finish this post, and go to bed, and sleep it off. It will be better in the morning, it always is.

    She called to make sure I was going to show, and I called back, saying I am committed, I can't turn back. I think they have me profiled!!! Shocked I threatened to run away as they were attaching the leads on to me before surgery, but they talked me out of it.

  • mcbaker
    mcbaker Member Posts: 1,833
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    It is nearly seven o' here. My transportation leaves at between 6:00 and 6:40 in the morning. Probably closer to 6:40. I go to patient education in the morning, 7:45 check-in time. Immediately after a three-hour class, I report for port placement. I am depressed as hell, which often happens with me in the evening. If I had someone to talk with, I would probably be blubbering my eyes out. As it is, I will take a shower as soon as I finish this post, and go to bed, and sleep it off. It will be better in the morning, it always is.

    She called to make sure I was going to show, and I called back, saying I am committed, I can't turn back. I think they have me profiled!!! Shocked I threatened to run away as they were attaching the leads on to me before surgery, but they talked me out of it.

  • phlorada
    phlorada Member Posts: 9
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    Hello Everyone!

    OK after the false start last week, I start chemo Wednesday. 12 week s of Taxol in clincal study then AC.

    MCBaker, I want to run away too but we are all in it together. Nights ARE the hardest!

    Nannett7fl…I understand what you are feeling regarding Christmas. I feel I will be upsetting everyone by being "sick" at Christmas or loosing my hair but that's just my feelings not what they are feeling. Your family loves you!

    How did it go Ocperegrina…?

    Quick question, did anyone take the anti-nausea medicine proactively rather than waiting to be nauseous as instructed by my nurse?

    I know a few have gotten their hair cut short, any ideas on when ( or if) you will shave it? I have short hair and now I considering shaving it…

    To be honest the anxiety of the first chemo is killing me, the night sweats, the unexpected is it worst then your expected?

  • Flower216
    Flower216 Member Posts: 87
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    Nanette....thank you!!!!!!!!

    phlorada...First of all ...good luck on Wednesday!!  I had my first chemo on Nov 30th, my scalp starting tingling on Dec 12th and I was starting to shed, I cut my longish hair very short on Dec 14-but decided not to shave my head. Most of my hair has since fallen out in clumps, but what I did not expect was that my scalp felt so sensitive and I was very uncomfortable. I do wonder if I did shave it, would it have been easier to handle? I spoke to a friend who went through chemo last year, and she had no sensitivity/pain when she lost her hair. Everyone is so different!

  • BeckyJL
    BeckyJL Member Posts: 81
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    Phlorada,

    I'm on a different regimen than you so can't speak to how it's going to go for you. My first treatment went fine. It was the Neulasta that kicked my butt - but i forgot to take the Claritin. I'm hoping that next time, I won't forget, and it will be smoother.

    As for the hair. I got mine cut short the day of my first treatment - 11 days ago. My hair has not started falling out yet, but the hair on my legs (which usually grows faster than kudzu) has stopped growing and the hair on my head seems more brittle, lifeless and thinner. Could be my imagination. Once I see large amounts coming off, I'm shaving the rest of it ASAP. My worry is looking mangy/clumpy so I just want it gone. Frankly, I wish it would just go ahead and fall out so I could move on to the next step. I hate waiting.

    I wish I could take your worry away. I wish I could take MY worry away. But for now, I just breathe and try to think about things I have control over. Don't know if that will help.

    Oh, and one other thing I found helpful. I was advised to bring a blanket with me because where I get chemo is known for being on the cold side. DH suggested I bring one of our electric throws, which I did. And I was very happy I had it.

    Keep us posted on how it goes.

  • phlorada
    phlorada Member Posts: 9
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    Thank you, BeckyJL and Flower216 ! A bit of firsthand experience is wonderful and makes the unknown a bit less intimidating! I have read that your head is very sensitive. Everyone I have spoke to recommends a sleeping cap…still undecided about that.. Have you bought a wig or wrap? I am still stalling on that too!

    BeckyJL…I am always cold so the electric blanket is a GREAT idea!!!

    Thank you!

  • lilliangish
    lilliangish Member Posts: 54
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    Becky, so sorry about the nose bleeds. That must have been more than you needed to deal with!

    Nanette, I understand about your dad...it's my 75 year old dad that I worry most about. He is very worried about me and I hate to see it.

    Hair: we used an electric shaver and just shaved most of it off when I noticed too many bald patches on my head. Then, in the shower, with lots of soap, I used a razor get a closer shave. One more time tomorrow should finish the job. I just need to this to be over with and done so I can move on. Like Becky said, I didn't want to be mangy and clumpy. My scalp felt a little funny the first night, but now, it's just dry. Putting lots of lotion on it. And my scarves are making me feel like "Rhoda" - Mary Tyler Moore's best friend in that 70's show. I almost wore boots today, but decided that wouldn't be good for keeping my feet safe from neuropathy. Rhoda would have worn boots. Anyhoo....I've slept in a night cap a few nights but last night my head was hot after wearing the Rhoda scarf all night at the holiday party...so I slept without anything on my head. So, I guess last night I was Bruce Willis. :)

    My 17 and 20 year old daughters are doing fine with the hair loss. I know if I freak out, they will too, so for them....my motto is this is no big deal. It's just hair and it will grow back.

    Good luck to those getting started - you'll do great I'm sure!

  • phlorada
    phlorada Member Posts: 9
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    HI Everyone!!!

    Tomorrow is the day....

    I thought I read an alternative to the baking soda/salt mouth rinse...in my nervousness, I can't find it!

    Is there an alternative or should I stick with that..any suggestions as when to start?

    Thank you!!!

  • BeckyJL
    BeckyJL Member Posts: 81
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    Phlorada that was me with the mouth stuff!

    I talked with one of my best friends, who is also my dentist (a very good dentist too!). She told me the baking soda/salt mixture is too harsh and abrasive for our teeth. During chemo, she recomends the following products:

    G U M toothbrush - it's the softest toothbrush I've ever used!

    Colgate PreviDent 5000 - it says it's for dry mouth but she says you can use it like toothpaste during chemo. You might need to get this from your dentist, not sure it it's sold over the counter.

    Colgate sensitive toothpaste - I'm using both this and the PreviDent. My sensitive gums (felt like they were being torn up when I brushed) went away within 2 days really after I started this.

    Biotene dry mouth rinse - for after brushing or whenever

    I've been using all of the above.

    She also gave me some biotene oral balance dry mouth moisturizing gel. I wasn't a fan of this so am not using it. But she said some of her patients going through chemo found this soothing.

    Finally she gave me these hard candy like things, ACT dry mouth. Haven't tried them yet.

    I would highly recommend calling your own dentist and just saying 'Hey, I'm starting chemo and am concerned about mouth sores, teeth issues and anything else that might occur. What should I be doing? " and see what they say. I'm finding places like to give us free stuff because they feel sorry for us, so, honestly, I'm taking advantage of that. I kinda feel sorry for me too, lol.

    My gums/mouth didn't start to feel sensitive/sore until a few days after chemo. But I wonder if that could've been averted had I had this stuff from the start.

    I've attached a picture of the stuff in case that helps.

    Final advice - if you're getting the Neulasta shot -TAKE YOUR CLARITIN starting the same day as chemo! That has to do with possible bone pain, not mouth issues.

    You've got this, you're going to be fine. We'll be thinking about you tomorrow. Eat your favorite foods today and enjoy the day!

    image

  • nanette7fl
    nanette7fl Member Posts: 412
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    BeckyJL thanks for reposting the info 8)

    I use 'generics' on my mouth....CVS brand sensedine toothpaste and Wal-mart brand biotene mouthwash. I too dislike the biotene and generic versions of the gels. I really don't like gooey in my mouth. All of these were recommended pre-cancer as I have dry mouth due to some of my meds and being a diabetic. GuM toothbrushes.... I swear by them!! They really do make the softest soft toothbrushes on the market.

  • OCperegrina
    OCperegrina Member Posts: 10
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    Hi ladies,

    Thanks so much for the updates, especially those uplifting messages about gratitude a few days ago, which were much needed. I hope everyone is managing well enough.

    Day 3 for me was not too bad, but day 4 and 5 were pretty dark. Lots of pain - joint and body soreness that never seems to end, achy back/pelvis (bone pain, I'm guessing - I have been taking Claritin to offset), and low energy/exhaustion, like a terrible flu - combined with some really awful mental stuff (sadness / depression / anxiety / hopelessness) that I wasn't expecting to hit so hard and feel so real and intense. I was somewhat prepared for physical side effects, but hadn't really calculated or planned for the hormone/serotonin/whatever the else the chemo does to imbalance my mental state. At my husband's urging, I reached out to my MO/PA to check in, and it sounds like what I'm experiencing is not unusual at all, and we added .25mg anti anxiety and slightly higher dose pain meds to treat the bone pain. It was much harder than I thought to call for help. It feels very vulnerable to call someone that has met me for less than an hour and tearfully tell them my problems and fears and doubts and concerns and pain levels, but I'm glad I did. Ultimately, it was a relief to talk to her and get validation that what's happening is normal and temporary and manageable and has an end in sight.

    As my husband said, it seemed like some of my "sparkle" came back yesterday (Day 6). We also tested a "only input that delights you" rule for the day. So, happy TV (Mrs. Maisel), full fat ice cream straight from the container, everything crackers and cream cheese, and no googling side effects of medication/trying to figure out what was going on on my own. I also made a specific point to talk to a friend extensively about her life and work situations, so I felt like for a brief moment, that I was outside this bubble and engaged in the real world. I sometimes feel like I have nothing to offer friends other than a conversation about cancer and chemotherapy side effects. It was nice to be pre-cancer me for a brief moment. I got a good night of sleep last night, and am hopefully maybe today (Day 7) will be an upswing day.

    How is everyone else doing on their SEs? No changes in my hair status yet. The plan is to shave the short hair when it starts to fall out. Sounds like electric trimmer, then razor? @LillianGish, was it hard to shave your own head with a razor in the shower? No worries of nicks or cuts? I tried some wigs on that my sister sent me and they seem kind of ridiculous (as a glam wig will naturally seem when you are perpetually in pajamas without makeup or jewelry), but we will cross that bridge when it comes. Recommendations on youtube or websites for scarf tying videos? Has anyone from this cohort taken "Look Good, Feel Better"?

    @Cherd - the worksheet from the ACS for side effect tracking has been very very helpful to note what's going on, and what I've taken to counteract SEs. I keep it on a clipboard and update the prior day every morning, which is a nice little reflective routine. It also really helped me frame my conversation with the MO/PA in an efficient manner. THANK YOU!

    I got my first note from the Chemo Angels program I signed up for. It's not the kind of thing I would normally do, and wasn't sure what to expect, but it's kind of nice to know a kind stranger is thinking of you from somewhere across the country and wishing you well. I will take all the little acts of kindness that come my way these days. It's one of the many free services I found on the breastcancerfreebies website. I also got my free queasy drops sample in the mail, and was pleasantly surprised that they seemed to help. I've been taking the nausea medication semi-proactively, pretty much anytime I feel as much of a flutter in my stomach, which has kept most of it at bay.

    Hope everyone is managing well enough. One foot in front of the other, and we will all eventually get to the end of this very long journey.

  • mcbaker
    mcbaker Member Posts: 1,833
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    Waiting for my ride home. Doctor told me of a woman with the same BC who had initially declined treatment, and now has liver mets. HER+ is nasty and fast and not worth gambling with. They went real slow, and did lots of pre-meds to reduce chances of allergic reaction. I was exhausted and slept quite a bit. So my anxieties were not worth BP of 150/80. Chances of further loss of hearing 1%. He called my plan of treatment "chemo lite". She had trouble scheduling appointments, so I told her to just go ahead and do it, I will check with patient portal and confirm or red-flag. I am retired and have few daytime commitments that they don't know about.

  • Flower216
    Flower216 Member Posts: 87
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    I am soooo disappointed. I heard wonderful reviews of the American Cancer Society's "Look good Feel better" program. The meeting near my home in December was right after my chemo treatment and I couldn't go. I have been checking their website for the January listings and nothing has been posted. So earlier this week I sent them an email asking when the January  classes will be posted. I woman wrote back, a friendly but disappointing reply!!!  She said, 

    "Thank you for your email, which comes during a very busy time of transition for the Look Good Feel Better (LGFB) program.  One of our program collaborators is leaving the program at
    the end of 2018, and we are busy restructuring and rolling out an updated program platform for 2019.  What this entails is basically on-boarding hospital workshop locations one at a time, and unfortunately, there
    are no group LGFB workshops being offered until around March of 2019.  I am truly sorry for this inconvenience."

    She also said that in the meantime we can register for a online virtual LGFB workshop. I'm sure this workshop is wonderful...but its not the same. Sorry...I don't mean to complain..but I was disappointed!!


  • nanette7fl
    nanette7fl Member Posts: 412
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    Flowers216 Hmmmm you made me curious.... so I went to their website and guess what I found!!! It's all online now......I agree with you how very disappointing as I was really looking forward to a live event........sigh

  • sweetolyve
    sweetolyve Member Posts: 9
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    Hello,

    Everyone in my oncologist office stressed repeatedly that I should not wait to take the anti-nausea meds. They also said it's hard to get it to work if I wait and begin throwing up. I also keep mint essential oil nearby to sniff when the nausea gets too strong for the anti-nausea meds. Just a deep whiff or two helps repel that feeling of nausea. I did follow their advice and literally only needed it for about 4 days.

    Hope this helps.

    Debbie...(0:

    ><>

  • sweetolyve
    sweetolyve Member Posts: 9
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    Hello everyone,

    I just wanted to pop in and share an update on myself. My second visit with my oncologist went very well. Although I complained about my treatment being way too strong, he kindly stressed the need for it. Also, he said if I get that down again after my next treatment to call asap so they can get me in and fix me up.

    My hair started falling out today. I thought it would bother me, but not really as much. It already falls out due to hypothyroidism.

    Also, I bought the book, The Longevity Diet, to study the fasting mimicking diet. That is some very interesting stuff in there if anyone cares to read it. It helps protect healthy cells from cancer treatment while forcing cancer cells to be better exposed to chemotherapy, if I got that correct.

    Well, that's about it for me. I'm feeling great, have lots of energy since the side effects of chemo/neulasta have worn off, and I'll be sewing and making jelly today.

    I hope all of y'all have a very wonderful Christmas.

    God bless you all.

    Debbie...(0;

    ><>

  • Christine1975
    Christine1975 Member Posts: 23
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    Good morning, beautiful chemo warriors! Day 7 here and doing well! I have worked my normal schedule this week and now I'm on Winter Break until January 7th! Hooray!!! My next chemo is January 4th. I am an education consultant for a community college and am very blessed that my schedule can be flexible and I've felt healthy enough to work so far. I work about 25 hours per week. I'm not sure what the remaining 5 treatments will bring, but I'm keeping my fingers crossed I continue to feel as well as I have this first round.

    I've enjoyed reading your updates and so glad we have each other to lean on during this journey. How is everyone doing today? For those that celebrate Christmas, are you feeling ready? Anyone have big plans? We will host my in-laws here on Christmas Eve, then travel to my parents' house on Christmas Day (about an hour and a half drive, so not bad at all.)

    I have all my shopping/wrapping/baking/deliveries done but just need to finish up stocking stuffers. I think I'll try to finish that today, then relax. We have 3 sons (ages 18, 16, and 12) and they really didn't ask for much at all this year. I bought them some various clothes, gift cards, video games, etc. Of course, socks! Around our house, everyone always gets socks for Christmas! My older 2 boys have jobs and usually just spend their own money when they want something. I miss the days when they were little and there was all the excitement of toys and Santa Claus! It's still fun, but just different now.

    Do any of you wear the surgical masks when you are in crowded places? I started doing it earlier this week, even though it feels kind of weird at first, I'd rather risk looking weird than getting sick. There's a lot of junk going around here right now with cold and flu season, so I figure we can't be too careful. I ordered a 100 pack on Amazon and plan to use them throughout my treatments.

    My hair is getting pretty thin/dried out the past couple days. I am getting it shaved on Sunday. I figured it would be less traumatic that way than having it falling out during Christmas. I'd rather just get it done and over with, does that make sense? I've got some cute hats ready to go; no wig yet. Not sure if I'll use one or not. I've heard they're quite itchy, so I'm still on the fence.

    Well, I will sign off for now. Please know I think of all of you each day and hope & pray you are all doing well with minimum side effects! I feel so blessed to have this forum and am sending you all big hugs!!!!

    Take care,

    Christine

  • BeckyJL
    BeckyJL Member Posts: 81
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    I'm happy to hear people doing ok.

    Christine - physically I'm feeling rather normal now. Hopefully you will too. Got a lot of my baking done - but can't really taste any of it. Makes staying on my diet that much easier (silver lining and all).

    Sweet - glad to hear you have energy! It makes all the rest of this stuff easier to handle if you can feel upbeat even a little, at least for me.

    Flower - ditto on the Look Good, Feel better. But the nurse I talked to called me to come into the hospital anyway for a one on one with her and the remainder of the free swag they still had to give away. I got a lot of makeup, some of which I'll use and some facial moisturizer which I'm using a lot of right now. She was nice, but the whole thing was kind of depressing. I cried when I returned to my car. The message I was hearing (not the one they intended I'm sure) is "You're going to look awful, so let's figure out how to cover that up." It felt rather like trying to put lipstick on a pig. Still . . . free stuff is nice.

    I'm two weeks post my first chemo and hair really started to drop last night. So, I'm getting it all shaved off this afternoon. I think I'm a smart, logical, practical, non-sentimental type of person. So something as superficial and temporary as hair loss shouldn't bother me, right? But it does. I can't seem to logic my way around this grief emotion which makes absolutely no sense to me. It actually offends me that I'm upset about this, if that makes any sense.

    My son, who graduated in May from college and is working his "real" job now down in Florida (we're in Michigan) asked if I wanted him to shave his head in support of me. He even volunteered his younger sister (Junior in college) to shave her head too, without, of course actually talking with her about it first. He said "Dad's pretty much already with you there." (DH is almost completely bald already.) Made me smile. I think that's taking the adage "Misery loves company" a bit too far.

    Lastly, got a book I think I'm going to love. It's Lin Manuel Miranda's "GMorning, Gnight." First thing I read in the moring, and last thing I read before I go to sleep. Whimsically real, thoughtful and not too sappy.

    Hope you all have a great day!



  • anx789
    anx789 Member Posts: 241
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    Good morning beautiful ladies,

    My hair start falling at day 14, today is day 16 for me and I haven't shaved my head off. I am trying to hang on to my hair as long as I can and hoping I will still have most of it on Christmas eve. When my hair start falling it freaks me out, specially in the shower. I rushed to finish all my Christmas shopping yesterday as I am scared that my hair will start falling in public. I haven't shopped for a wig as I am not sure if I will be wearing a wig, I only got a free wig from American Cancer Society near my house, it looks okay as long as I wear it with a hat or beanie.

    Have great day ladies!

  • lilliangish
    lilliangish Member Posts: 54
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    Hi everyone. Thank you for all your posts. They make me feel less alone in going through this experience.

    McBaker ~ I am always mystified why people decline breast cancer treatment. This disease is SCARY! I'm getting the treatment and I'm still frightened out of my mind most of the time.

    Flower ~ Sorry about the disappointment with that ACS program. :(

    Sweetolyve ~ My colleagues at work just gave me an essential oil diffuser for Christmas, and you just inspired me to hook it up. I bet it will be a nice addition to my bedtime routine. Glad you're nausea us better. I will also get that book!

    Christine ~ I am in awe of anyone working while going through chemo. You are very strong to do so! And yeah, I got the whole hair thing over quickly. Shaved it as soon as I could. Now that it's gone, I'm doing ok with it. It's my new reality.

    Becky ~ it's ok to be upset about losing hair! Anxiouslady, same! We've never had to do this, and if I have shed a few tears in the process.....so be it! I'm no monument to bravery! But we're doing it. It's about survival! And yes, I've gotten lots of makeup and hats, which I've appreciated....but I bet men going through chemo don't get these kinds of things to look better.

    Still, I choose optimism. I will always try to do so...warning to everyone here. The glass is usually half-full for me. :) In fact, it's usually all full.....half liquid and half air. My hair is gone and so I went to my company Christmas party rocking a beautiful headscarf and earrings. My friend did my make up. I wanted to show everyone I was ok and that I wasn't dying. I can't tell you what a great day it was. So many people were so glad to see me ok and told me they were rooting for me. And maybe they were just being nice, but several people said I looked beautiful. You don't need hair to be beautiful.

  • nanette7fl
    nanette7fl Member Posts: 412
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    Christine1976..... yes after seeing that my WBC has dropped 2.9 points since I started chemo I really am considering wearing face masks in public. I found some rather nice ideas for washable ones in Japan & China online and I'm in the progress of making a pattern for them. My Psychiatrist thought that was a great idea as I have literally TONS of fabric to choose from and I'm thinking of making some subtle and some on the loud side Dr A suggested that the masks should be 'fun' and I totally agree 8) With my first batch I'm going to donate about 30 of them to my Cancer Center and also to the Cancer Center at my local hospital. They'll all come with a lovely little tag stating the cost of future ones ($2.00/ea to cover some basic supplies I'll run out of eventually)

    Sweetoylve.... I agree with your Dr's about the anti-nausea meds. I was bull headed the 1st week and eventually learned that in order for me to eat I have to take a pill (I start with the Zofran or the O" pill)and then IF I need something within 1-2 hrs post eating I take the Compazine or the "P" pill. This way I'm not suffering and waiting for the nausea to subside so I can feel better. Also since I started doing it this way I'm in a much better 'mood' when DH comes in a night from work and I don't complain about being nauseated.... He worries ENOUGH as it is

    LillianGish.... I totally agree with your attitude...... I love being optimistic and I think it really helps a lot!!

    So I went for my 3rd weekly infusion today and when my lovely nurse asked me 'How are you feeling?' I was pretty honest with her and told her that I've either got bone pain or muscle pain and i DON'T like it one little bit. She looked so sad and sorry and said it's probably the Taxol acting on me. Later on as we were finishing up I said 'Well I guess it's about time for my hair to start falling out and she said 'Honey you're on a low dose of taxol that's why you come weekly. Normally it's the 'girls' who come every 3 weeks who experience the going bald issue. Are you experiencing anything that would make you think you're going to lose your hair? I told her yes. I showered this morning and in the car on the way over I was picking at my hair trying to get it to 'stand' up some and I had about 3-6 hairs in my hand every time....then I showed her.Odd how that didn't start until the shower.

    Do you all agree with tmy nurse's opinion? I told her about some of you and she was surprised. I reminded her of how long my hair was before chemo and how I had it cut the weekend before I started. I used to have hairs all over the house and it was common then for me to have to unload my hair brush then....since the short cut I've NOT see ANY hairs coming out especially when doing my hair with the mousse and curling iron. So YES I have reason to be concerned 8(

    Any how I need to go take my night meds and brush up my hair while I still can.

    I have a thought...I'm going to the salon to the nice young lady who did my 'transformation' haircut. We had discussed 'that' time and I told her she'd know it was time to take it all off when I showed up with NAIR in my hand.... I remember her laughing and the shop owner, who I've known for over 15 years and she said the NAIR was the best way because of what it does to the ends of the hair shaft and could prevent issues later....Like I said just a thought

    Love and ((( hugs))) to you all. We ARE BEAUTIFUL because beauty comes from the inside!!



  • JoyontheJourney
    JoyontheJourney Member Posts: 1
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    Hi, everyone. I'm late to joining the forum, but I've been reading, thinking, and praying for you all.

    I was diagnosed in November as Stage IIB, triple negative, with no lymph node involvement. But diagnostically, my MO has classified me Stage IIIB. I got my port Dec. 11 and started chemo on Dec. 12 (AC, every two weeks, with Neuroplast booster), and everything hit me so hard that I couldn't even think to ask for help with the side effects like headaches, etc. I followed all the directions I'd been given, so it was hard but I managed. Day 6 I started to feel better and realized I should have been calling the doctor for help with the headaches, acid indigestion, insomnia--couldn't sleep more than 2-3 hours a night, bone pain, etc. I've made a list for the doctor for when I go back for chemo on Dec. 26.

    I have loads of questions--even though I've been reading all over the forum--but I just wanted to start out by saying hi, and thanks to each of you for being here and sharing so honestly so I don't feel alone. I've got tons of support from friends and family, but no one who really knows what it's like. I'm expecting my hair to fall out any day, and not looking forward to that, although I got a couple of cute, soft hats.

    I'm developing some mouth tenderness today, and I suspect I made my baking soda solution too strong (to kill the nasty taste) or if it's from the chemo, or both. I guess I should go out and get Biotene for dry mouth? Any recommendations?

  • Flower216
    Flower216 Member Posts: 87
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    Hi Joy! NIce to meet you but sorry it had to be here. This is a great board!!!!!!! I also go for my second treatment on dec 26...so I am thrilled to have a week of feeling like myself. I did not get mouth tenderness but got dry mouth and Biotene was very helpful. I also had a hard time sleeping and my MO is cutting my steroids in half-hope that helps!  My hair is gone, I am having fun trying different hats. I don't know where u live, I am in NJ, and for the cold days I bought Barefoot Dreams beanie hats ( a little pricey but worth it). Wow, they are so soft and stylish...put it on with a scarf and no one who sees you will think "cancer".  Feel good!


  • MarnieMay
    MarnieMay Member Posts: 15
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    I had my 3rd weekly Taxol yesterday. First time driving myself the hour home and had a rough time being sleepy in the car. I want to have peace and quiet at my treatments, but also want someone to drive me home. Can you tell I am a bit grumpy lately? Hair is thinning and brittle and nice triangle missing from my bangs area, not ready to shave it yet though so I have been wearing my caps. Love the slouchy snood cap from headcovers unlimited. It was $20 on amazon. Think I am gonna save for a few more colors. When I got home yesterday I felt really bad and took an hour nap. It helped but then I barely slept a wink last night. My biggest issues have been joint pain, raw nose sometimes bloody and newest is a fungal rash in my bikini area. Gavapentin did not help the joint pains and made me feel fuzzy. I appreciate reading how everyone's treatments are affecting them and I like reading about the hair timelines. I just started reading the weekly taxol group. I only on page three, but it is now my second favorite group. :)

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120
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    Hi everyone,

    I’ve been reading previous chemotherapy threads and have learned so much from everyone. I wasn’t sure when I would be ready to post until now. Needed to hear 2nd opinion, which was today, before I knew for sure chemotherapy and regimen was confirmed. I’ve already had lumpectomy with immediate reconstruction (LD flap), followed by radiotherapy treatments. Mammaprint results indicated chemotherapy was necessary; hence here I am. My 1st treatment will be this Monday, Christmas Eve. I’ve read, researched, and prepared myself on what to expect, but hadn’t felt anxious until just now as I’m writing this. (Taking in deep breath).

    I know we will all get through this. Some tough days, and some good days. In a way, feels like I’m back in college and we’re attending university. Sharing our stories reminds me of my freshmen dorm days. December group is our class. I’ve read August (diagnosed late August) to November to get a sense of what to expect. It’s been so helpful. So, to all the upper class (wo)men, please chime in once a while and let us know how you’re doing. And to all my fellow classmates, we’re all in this together.

  • BeckyJL
    BeckyJL Member Posts: 81
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    Hi all, hope everyone is doing ok!

    MarnieMay I bought 3 slouchy snoods too, love them!

    So for the hair update. My first chemo was Dec. 7th. Noticed significant hair loss on the 19th when I would run my fingers through my (short) hair. Thursday morning shower it seemed even a bit more so I called my hairdresser and went in that afternoon to have her clip it all off. I was surprised, but she said they didn't have the ability to shave it clean, I'd need to do that at home (she was incredibly nice about the whole thing and didn't even charge me - one more score of free stuff for the cancer pity!). So I went home. A friend came by and gifted me with a homemade crocheted winter hat. Very cute. Tried to put it on and .... stuck! My bristly head was like velcro. We laughed like maniacs. Later, putting on and taking off shirts they would stick to my velcro head. Tried to use the astringent given to me in my chemo relief box, the cotton ball stuck to my head. It was annoying (funny , but annoying). So today I had DH shave my head. We used my regular razor (new blade) and my shaving cream. It was weird. Didn't hurt, though I kept expecting it to and flinching, which then scared DH. After, got in the shower and touched it up some more, mostly by feel. Still have a couple of spots we're trying to figure out how to get to, like right by my ears. I was too chicken to use Nair, but that sounds more appealing now.

    Good news - hats and shirts and cotton balls no longer stick to my head!

    What a strange, strange journey we are on . . .