January 2013 chemo group

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Jubby, just some thougts magic mouthwash ask doctor also may need valtrex for cold sores/herpes. Talk to doc I am on valtrex and doing baking soda salt water rinse 3 x per day

    Sheryl

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    I am heading out for my third A/C treatment in a few minutes.  Taxol begins probably in March.  I intend to confirm that today, though.

    Skimommi  -  You and I get to celebrate Valentine's Day by having our last date with the 'Red Devil', and the good news is that they can never give us this crap again! You can only have one fling with the 'Devil' in your life, thank goodness. 

    Soteria - I am so thrilled you are on your last date with the Red Devil!  I am green with envy..and probably a few more things in the next 48 hours.

    Smethot - Welcome to the club:  The A/C every two weeks followed by T is a very normal pattern in this abnormal world. 

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  • tangles
    tangles Member Posts: 508
    edited January 2013

    I thought I might ask this question on the Jan board for some that might have been down the road already. I had a Port put in on Monday and Tuesday I noticed discomfort but wed and today it seems to hurt to take a deep breath and yawn ect.... Maybe I just didnt notice it the first day becaue of the pain on the site? I also have tissue expanders maybe they are shifting? I just dont like this discomfort in my chest when I breath in deep. Could something be wrong or is this normal.

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Zorina, that's great news re: the acne!  I'm almost afraid to type the words for fear of jinxing things but my skin seems to be clearing as well. 

    If our skin problems are caused by the microscopic mite demodex folliculorum then I wonder if the chemo doesn't kill them off.  Additionally, I recall having read that chemo has anti-inflammatory effects but I don't have an immediate link to back that up. 

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    LeeA- there might be something to the anti-inflammatory thing. I have a angry knee due to all the years I beat the crap out of it on the mountain (I totally know why competition bump skiers end their career at 30). I used to take anti-inflammatory drugs, supplements and such daily for years. I haven't taken anything since December and I have had ZERO pain/issues with that knee. I am almost back to my usual activities and it's felt fine. HMMMM....

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Skigirl, prior to chemo I was taking 500-1000 mg of curcumin with bioperine for a persistent lower back/hip pain that I've had on and off for years.  Actually, I started taking it in early August when I made the decision to delay my biopsy.  I had read that curcumin can create cell death in breast cancer cells.  The interesting side effect was that one day I realized I was no longer having the lower back/hip pain.

    Prior to the BMX I was told to stop all anti-inflammatories so I stopped taking the curcumin.  Within 4 or 5 days the hip pain was back - just like it had been on and off for years. 

    I started it up again when allowed by the BS and sure enough - the pain went away.

    Now, since chemo, I've taken all anti-inflammatories off the table and was fully expecting the same old nagging ache to return but it really hasn't. 

    I will definitely be going back on the curcumin within two weeks of finishing chemo because it's the one supplement that I know helps keep the hip pain at bay.  At the same time, I'm hoping this trend continues (hip feeling okay and skin clearing up) during chemo.

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    ...ok...no shaving...no (or even less) acne and anti-inflammatory for old injuries?  I'LL TAKE IT!  Might as well get some benefits (aside from cellular insurgent destruction).  Can it make me taller and thinner, too?  maybe walk my dogs and feed my cats?  :)

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    The morning I started chemo, as I was showering and still had hair, I told myself that this chemo stuff is something I must have needed my entire life - something that had been missing since childhood (note: I play a lot of little mind games to get myself through the rough patches). 

    The next week I relayed this thought process to my oncologist and he put his chin in his hand and thought for a moment and then burst out laughing and said "as in a 'chemo deficiency?'"  

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  • Leamitch7
    Leamitch7 Member Posts: 12
    edited January 2013

    Watta: I also drive 1 1/2 hour to Boston for treatment. Makes for a long day but, doable.



    I don't have a port, I can be a hard stick. Every week the nurses ask when I'm getting one. And every week my MO says no. She feels I may not finish my 12 taxol and doesn't want me get the port then have to remove it right away.



    I had severe limited motion of my right arm after bmx and reconstruction. After my first trip to the bar I regained full use. I wondered if it was the anti-inflammatories.

    Off to the bar tomorrow for #5 then I'm returning to work Tues for the first time since 10/30/12 excited and nervous. Employer is being difficult, why does every have to be so hard?

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Yup, LOVE the clear skin, no knee pain, no shaving and the granny/mustache hairs have disappeared!! YAY!

    Tangles- My port was sore for a few days. Tough to sleep on that side, arm movement, etc... It took about a week and a half before I realized I didn't notice it. I would say keep your eyes out for anything infection oriented-reddness, swelling, fever, pain that cannot be dulled with tylenol, etc... A call to your surgeon would not be a bad idea. Mine told me that I would feel like I got hit with a baseball bat for a few days after. He was dead on. It hurt. Now, I've had it in for 4 weeks and I have no issues with it. Hope that helps. When do you start chemo?

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    Leamitch7, long shot.....but do you go to Faulkner hospital for treatments? I have two more tc treatments there, if so maybe we could meet.



    My DH came home from work to fix lunch for me, I love him so ❤

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  • tangles
    tangles Member Posts: 508
    edited January 2013

    suppose to start Chemo tomorrow

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  • Italflamingo
    Italflamingo Member Posts: 9
    edited January 2013

    Hey everyone. So it's been a week since my 3rd a/c dose. I'm fricken tired. Is anybody else feeling this way? I thought I would be bouncing back by now.

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    I've got ten days till AC three, sounds like I'm in for a bit of a ride. Oh we'll. short term pain long term gain!



    Ski girl I take lysine for mouth ulcers too, I know it's a cold sore antidote but I read somewhere it works for ulcers too and I've always had bad ulcers (cankers). I've only had one on chemo and it's way down the back of my throat, ugh. But one is good for me.



    I've been struggling with cancer humour, everyone is so damn serious and it seems like having no hair is a licence for everyone to run up to me and tell me about someone they knew who had chemo and tell me to drink baking soda. I found this funny page here about how to tell your family you have cancer. I think it's hilarious, I hope some of you get a laugh. Don't look if you're easily offended.

    http://cancerisnotfunny.com/top10worstwaytobreakthenews.html

    This is my favourite #4: "Alright everybody, raise your hand if you DON'T have cancer."
    (raising your hand at first, then slowly dropping it as everyone watches)



    Xx holly

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Hello my friends,

    Well I bellied up to the chemo bar today for tx #2. Lab work great and tolerated without any problems. Now I just feel tired but wired from steroids and can't sleep. I guess I will sleep when my body decides I need to.

    Take care, Sheryl

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  • Nicole503
    Nicole503 Member Posts: 295
    edited January 2013

    Hello ladies -

    I love how chatty and vibrant you all are!  I mostly post on the December boards and have noticed that as we all progress through treatment, we are a little less sparkly but just as caring, compassionate and strong.  

    MandyNJ  You have my prayers and all the stregth I have to give for your new port procedure on Monday.  I can feel strength in your words and your resolve.  May you feel love and caring supporting that strength in you.

    Jubby I had to start magic mouthwash (Kaiser calls it oncology mouthwash) today after my entire GI tract feels like it went down after AC #3.  Kaiser mixes up their own version that has some lidocane (anesthetic), Benadryl (anti-inflammatory) and Maalox (coat the tissues).  What I will tell you is that it completely numbs your mouth and into your throat and it does provide immediate relief if you have sores or, in my case, a super sensitive and ouchy tongue.  I also got a prescription for Nystatin since my super sensitve, ouchy tongue has also adopted a light white coat for winter time fun.

    Zorine & Italflamingo ~ My 3rd AC has been by far my hardest.  I am also a week out and my energy level is poor.  I went to work on Tuesday and felt like I was scratching and clawing my way towards a clear head and enough energy to simply do my desk job.  Yesterday I had the worst GI symptoms ever and ended up throwing up for the first time since starting chemo (not because I was nauseous, simply because the acid reflux just spiralled to vomitting).  Today was the first time I had to call a chemo nurse for help with side effects and I almost cried when I got that compassionate caring voice on the other end of the phone.  All that to say, take good care of yourselves through #3.  In my experience, it is a harder climb than #1 or #2.  The hopeful news is that one of our December sisters who has done all 4 turns on the AC carousel said that for her, 4 was easier than 3.  Perhaps if we all learn how to take really good care of ourselves through #3, that will bear true for us too!

    Be well everyone.

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Catching up -- slow brain. Here are comments for posts that are 5 hours old. I'm going to buzz off my hair and get my Neulasta shot, but I'll be back later with more innane comments and embarrassing pics. Woohoo!

    CJohnson, ciao bella! That’s our way of saying,we hate that you have to be here, but  we’re glad you’ve found our little online family.

    Shannon, I’m not like the other bellas who become crack monkeys because of their steroid high. I’m a crack monkey by nature. I’m naturally so wired and outrageous that I once had a boyfriend in college who, after a few weeks of dating, told me that he’d thought I was shooting up the day we met. Not a long-term relationship, clearly! It’s only chemo that drags me down. And  I haven’t taught  yet, but my students will definitely notice, since I’m usually bouncing off the walls.

    Mandy, a word in support of the port (not that you need it, but it makes me feel  useful.) I’ve historically been easy for technicians to stick. Last week when I went in for labs, the tech missed on the first try and struggled/fished on the second. I figured it was unusual, but it happens every once in a while. But then, when I was at the ER this weekend, they brought in their best tech (at least, that’s what they said), and he missed on both arms, even with a bunch of (ow!) fishing. The nurse took over and went for my hand instead, and blew one vein before finally getting one to work. That one swelled and bruised up so badly that I  still feel the bruise today.  So, we’re thinking that one round of AC was enough to make my veins really cranky! Imagine going through that for chemo treatment. No thank you! You’re doing the right thing, and you’re a rock, baby. You’ll rock this, too.

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Tangles- did they give you numbing cream to put on your port? two hours before and cover with plastic wrap and it will dull the pinch when they access you. All of this is overwhelming and it totally sucks. It really does make you feel better to be in a place with people who are going through the same thing. Chemo sucks but it is totally doable. Read back a bit on some of these pages and you will see how we all are doing. I am 6 days out from TX#2 and other than being tired and getting over a cold, I feel ok. Good luck tomorrow.

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Ablydec- I left a message for my MO about the neulasta question you had. Hoping I hear back from them by tomorrow.

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Thanks for the words of encouragement and advice, Nicole! I hope things perk up a bit for you in the coming days.

    They almost cancelled my third AC today because the WBC counts were really low.  As I waited for the doctor,  I was fighting against tears.  Yes, I wanted chemo...how crazy is that?  Anyway, the Dr. came out and asked me how determined I was to have chemo today, and I told her VERY.  Dr remembered that my goal is to complete chemo before my 50th birthday in May, and now all the nurses know.  I am thrilled she remembered my determination.  So, she let me have chemo. 

    So, here I sit...feeling odd wth steroids, tired from the day and wondering how much this one is going to kick my butt.  But, I still have this very satisfying feeling for having completed my third AC. Neulasta and fluids tomorrow, and they will run my counts again on Monday.  Crossing my fingers that it bounces back. 

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  • teacherjulief
    teacherjulief Member Posts: 16
    edited January 2013

    Zorilla, I am glad you got #3 done today and that the doctor remembered why it was so important to you. I did get through treatment #1 today. Not nearly as bad as I anticipated. Sitting here wondering what is going to happen. Got my hair cut shorter this afternoon. I get my neulasta shot tomorrow before school.

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Re: Cancer humor.  Check out the live performance of the comedianne Tig Notaro's announcement of breast cancer,  you will be both entertained and humbled.  Right before the show she was told she had BC, and she walked on stage and announced it to all. Audience reaction was all over the place,  but her courage was amazing.  You can hear an excerpt here (Thank goodness for NPR!!) It's in Act One

    http://www.thisamericanlife.org/radio-archives/episode/476/what-doesnt-kill-you

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    OK...got my bar date!  Feb 7th is my first chemo...yeah?!?!?!  I can't believe i'm excited about chemo...deranged much?  I'm working on the sooner begun, sooner done premise- let's get this show on the road!  My last chemo is scheduled for just before our big May holiday here in Canada- Victoria Day- aka May 2-4 (after beer)- a celebration of the great Queen Victoria's birthday...long live the monarchy (gotta love being a part of the commonwealth).  Bring on my chemo!!!  Pic placement on Monday...does anyone else have a pic???

    Bryona- sounds like we may have been separated at birth...i, too, am cracked-out by nature...just can't seem to help myself.  I told my boss about the steroids with chemo and he was horrified as to what i would be like on steriods...i believe "peel you off the ceiling" was mentioned.  Then he asked if i'd be working from home.  Bring on the crack pug...and i really hope you're feeling more up to psycho soon.

    Mandy- hope you're making it...rooting for you.

    Debbie (Skigirl72)- you have a really well shaped head...i'm jealous...i'm gonna look like a stepped-on mango...

    And Holly- i am sooooo with you.  Why is everyone so damned glum???  I'm making chemo jokes and getting gasps of horror instead of laughs...what the hell is wrong with people?  Always look on the bright side of life and all that?  Weeping isn't going to help me at all and it sure as s*** isn't gonna change the situation- why not make the best of things?  Laugh, have a good time, be irreverant...its all better than playing me a dirge...thanks!

    Good luck to all of you who are up for another round, all of you who feel down and all of you who aren't feeling tip top.  Better days ahead, comrades.  :)  Shannon

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    This week has absolutely wreaked havoc on my taste buds and appetite. The appetite I don't mind quite as much because I have enough residual fuel in my belly to last a while. Did I mention I've been gaining all the weight back that I worked so hard to lose this summer, pre-"C"? Anyway, I'm not experiencing the metal taste. It is just an awful, ever lasting after taste. There is no rhyme as to what will taste good or not, so there have been a couple of things that sounded good only to have been spit out immediately into the trash. Tums didn't work, can't stand drinking water or anything else for that matter right now because of the taste in my mouth, can't stand the after taste of the salt/baking soda rinses, gag on the EVOO rinse too. But today I found my new BFF. I stopped at the store desperate to find hard candies or something that would get rid of this taste. I loaded up on sugar free werther's, popsicles and gum. What now seems like an obvious fix now is truly working. I've been chewing gum all day and the problem has subsided. Okay, so it could be timing because I'm now one-week post party, but I'll give the gum my gratitude. Lunch was still a little off, so I know my tastebuds haven't fully rebounded. It is just good to not sit here tasting ick all day long.

    Zorina I think I will make red devil food cupcakes to celebrate V-day! LOL Your referral made me think of the line from Batman where the joker asks "Do you dance with the devil in the pale of the moonlight?"  Of course you are going to be determined to get it done. Who in the hell wants this to stretch on any longer? That is torture of itself!

    Alright Shannon, you can two-time us, but just don't leave us. Your posts crack me up and brighten my day. I am a typical Aquarius, very reserved and low-key. But I love when people can pull out the humor and not be so damned serious about all of this. I try what I can. When I told a couple of my family members about the big "C" I told them I had been thinking about getting a boob job and would they think I should stick to a D or go with a C? Then let them know I finally get the boob lift I always wanted, just had to get cancer to have the insurance company cover the costs.

    To the baldies out there, do you still "wash" your head everyday? I feel so funny lathering up. I mean, come on how dirty can the top of my head get? And I still wrap it in a towel when I get out of the shower. Using a hand towel now, but nonetheless I can't get past that habit - just doesn't feel right.

    kiwikid you can now address those that tell you to drink baking soda that studies have also found that doing it will kill your liver.

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    I cannot imagine being able to do a performance after just being notified of a breast cancer diagnosis.  I'm definitely going to have to listen to that later this evening, Zorina - thanks for posting it. 

    ---

    My last chemo was eight days ago and I've been out and about most of today and yesterday and started feeling more like myself on Tuesday (day 6).  Now, just about everything tastes good and that's not necessarily a good thing.  

    Here's a hair observation.  I've either buzzed off or pulled out most of my hair - and then there's are the hairs that just took it upon themselves to fall out on their own.  I'd say I'm about 99% bald and luckily, bald enough to have gotten rid of that sunburnt, bat to the head feeling that some of us get during the hair falling out process.  I no longer have the scalp pain but have about an inch of dark hair (VERY sparse) all over my head.  It occurred to me that the amount of hair that I have left (without having the scalp pain) is about the length of the root grow out I had since my last highlighting August 31.  My idle thoughts are: is the "fresh" unprocessed hair what's hanging on and was it the older hair that was either processed  or just old that was making the scalp pain worse... I don't know.  The hair thing remains a subject of perverse fascination for me.  I found myself admiring a waiter's buzz/crew cut the other night.  Surveying the texture, his hairline, etc.  I would almost go as far as to say I coveted this young man's hair. 

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Good luck, Tangles, and welcome. 

    Do you know what regimen you'll be on?  I see you're Her2+.  Will you be starting on Herceptin?  

    If you're triple positive (ER+/PR+/HER2+) you might want to check out the triple positive thread. 

    --

    Watta, that was really nice of your husband!

    --

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  • VirginiaJ
    VirginiaJ Member Posts: 13
    edited February 2013

    I love Debra's idea of treating ourselves tomorrow.  I hope that everyone does so and shares with us.  Have had a good day today -- beautiful day in North Louisiana and no nasty SEs making me feel bad.

    Mandy -- try to stay calm on Monday.  No way anyone is going let the port be a problem again for you.  You will be really glad that you have it when you start chemo.

    LeeA -- once again you have cracked me up -- your perverse fascination with hair had me giggling 

    Zorina -- you also tickled me with your desire to find a squirrelly looking wig like your uncle used to wear -- if you do find one, please post a photo.  I'm pulling for you to finish chemo before your 50th in May.    

    CJohnson -- good luck with your first chemo on Monday.  We've all got your back.

    Teacherjuli -- hope you're doing well tonight after your chemo.

    Wishing everyone a sense of humor and minimal SEs!

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    As to head washing, husband is bald (partial choice, partical crap-genetics) and YES! a resounding YES!  It must be washed.  He's equal opportunity for both shampoo and soap...but if he doesn't wash his head, it gets this rancid, gamey smell.  Not outright yucky, more mildly oogy...and unpleasant.  And shiney.  And greasy.  And generally nasty-eeeuuuuwww.  I'm fine with using my ph-neutral glycerine soap on my squashed mango-head...i can't see wasting the head & shoulders...does h & s have an exipry date???   Not gonna get used for a while...

    Hubby also has really cute nightcaps that i've been told i am allowed to steal.  We'll be like the Night Before Freaking Christmas..mama in her kerchief and i in my cap...too cute for a postcard- the bald nightcapped couple.  (now i'm just freaking myself out...)

    Pressing Shannon Question-  Wig visit Wed Feb 6th and chemo Thurs Feb 7th...when should i cut my hair, pls, oh-egg-headed godesses?  I had REALLY long hair for 20+ years (down past my bum) and gradually got shorter as i grew braver in my 30's.  Now at 40, i was punk-rock do in the summer and the grow-out for that is long bangs (to my chin) and maybe 2" everywhere else.  Its gotta go...i know that...but when?  I'd like to get a shorter cut, lose the bangs (sigh) & start wearing my wig (and hats) but soon?  MO said hair goes at 3 weeks, you all say 2 weeks so i basically have to put on my big-girl panties and cut it sometime before Feb 21.  Don't know if i'm brave enough for the clippers (although the choice will soon be out of my hands) but i was thinking maybe a Susan Powter kinda spikey do?  Fit my wig over it, still have hair for around the house and its only a quick step to the no-guard, convict-cut from there.  And then...eggdom.  Opinions?  Advice?  I shall try not to shed tears over my lost locks...meh...its hair...it grows back...but man am i going to look like a complete tool.  Wonky head & bald...not a good combo.  But hey, its all for a good cause...ME!  And if it kills any f***ing lingering cellular insurgents?  So worthwhile that i look like a Walmart veggie bin-reject.  Sure.  (sigh)  Your comments appreciated as always...Shannon

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  • Bryona
    Bryona Member Posts: 214
    edited February 2013

    Kiwi, I figure that if I'm willing to laugh about it, the people around should be taking it as a sign. Sometimes they do. Sometimes they're just too confused to figure out how to react. I like to think the latter group did not get the literary education they needed, which would have improved their vocabulary, their familiarity with people who are different from them, and their ability to recognize satire. They're literacy-impared. Awww...

    tangles,ciao bella. I had some discomfort with my port when I turned my head or yawned, but the pain was up by the catheter incision, not at the port itself. I know lots of us have had all kinds of discomfort with the thing, but it does generally resolve (I don't notice mine at all anymore, and I've had it 6 weeks). Having said that, I'm a big fan of playing things safe, especially since we've had a couple of sisters in this group have serious troubles with their ports. If you're noticing difficulty breathing deeply, I say call your surgeon, and be assertive. You deserve to be well-cared for. And good luck tomorrow with your first visit to the Happy Hour Chemo Bar. Cin cin!

    Leamitch, good luck at work tomorrow! And tell your boss to be very careful. After all, you have a whole host of bella sisters here, and I'm guessing I'm not the only one with some unresolved anger at cancer and the universe, and I'd be happy to spend some time causing your boss pain. But I'm kinda tired today, so maybe the boss will just have to sit still while I embarrass and shame from a comfortable chair. Would that do?

    Nicole, hugs to you for the rough round three, sister. And you're so right -- it does get more difficult to be silly and upbeat here. I love everyone for trying. That's one of the things I resent most about all of this: it's stolen my enthusiasm and silliness, and those are my core traits. But I hold onto them whenever I can, and I hold onto this crazy bunch when I can't.

    Shannon, the one oddity of my particular brand of crack-monkeytude is that I react unexpectedly to some substances. For example, I have to drink decaf coffee during the day because caffeine makes me sleepy. Maybe that's why I'm not getting a steroid high, either! Wouldn't it be just my luck if my chemo fog is made worse by my depressive response to decadron. There will be forceful complaints to the management, I tells ya. Strongly worded demands. And such. After my nap. :)

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    skimommi and kiwikid,

    We actually prescribe 1/8 tsp of baking soda in water three times per day for our dialysis pts whose blood level of sodium bicarb is low. And if that doesn't work we then put them on sodium bicarb tabs of 650 mg three times per day. Don't know if there is any truth to it being harmful for us regular folks. However, I rinse and spit the baking soda/salt/water rinse.

    Someone is always looking for the negative in pretty much everything if something happended to one person who probably did things wrong.

    Sheryl

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