April 2015 Chemo Crew... Starting in April? Please join us!

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  • gingeel
    gingeel Member Posts: 102
    edited June 2015

    KBee, Yes, I'm up for Taxol #1 on Tuesday.

    Sorry your son broke his foot. My son broke his wrist a year ago like 2 weeks before his show (he's a drummer), and well, we dealt with it. Kids are so resilient! His cast was off in a month!

    Sex, something I've touched on before......we haven't had sex once since I've started chemo. But, it's ok. He feels too weird and so do I, that it just hasn't come up, so to speak. We hold hands in bed and hug a lot, and peck each other, but chemo has sort of spoiled the mood for romance, ya know.

    Spent all day outdoors for my daughter's picnic, and I'm pooped. Long day.

  • ThePrincess
    ThePrincess Member Posts: 424
    edited June 2015

    KBeee! How on earth? I hope it's better than you expect!!

  • sheshe3
    sheshe3 Member Posts: 70
    edited June 2015

    Whew! Chemo #4 and the major se's in my rearviewmirror . Had nausea, major diarrhea, and my worst fatigue yet. Got exhausted and out of breath going from one room to another! Feeling stronger today the D is gone and my appetite is slowly returning. As far as weight gain, mine has fluctuated down and back up every cycle by about 6-7 lbs... I got my second mugs scan today, will probably have results back tomorrow. Would like to k ow before Friday surgery. I don't and never did the towel wrap, but I have to say, I can't pass a mirror w/o looking at my bald head and feeling the velvet fuzz😉 A couple nights ago I dreamed that I had grown a nice thick cap of hair back and was so happy that I could start wearing ball caps and have a showing hairline. So sad to wake up and find myself still bald😭 Sex??? Did someone say sex??? Well actually, I've had it once and even though I used lube it was quite painful and the irritation lasted through part of the next day. As some of you have already said, there was no desire on my part and certainly no pleasure since it hurt. My husband is very understanding and is just biding his time until "normalcy" returns...

    Happy Birthday Lynne and belated Happy Birthday to you Fran!

    Kbeee! So sorry to read about your son breaking the bones in his foot. And right at the beginning of summer too!

  • sheshe3
    sheshe3 Member Posts: 70
    edited June 2015

    Ksusan, congrats on your promotion!

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    Oh no Kbeee! Hope he gets a walking cast!

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited June 2015

    congratulations! Ksusan - you deserve a double promotion and double pay.

    Littleblue - you crack me up. OMG the mooning diagram.

    Yeah for those finishing up AC or TC, and cheering on those still going through chemo.

    Kbeee - Sorry about your son. Hope he heals quickly without too much pain.

    Addie - hang in there.

    Happy. Happy birthday Lynne and Fran! 💐🎉🎂

    Saw my GI about my butt problem...got some topical stuff and praying it works. Sniff. Sex? Forget it...I got bigger issues to deal with like my poor butt. My husband is so empathetic, funny, and supportive, though. Onward! BTW, I do sometimes look at a brush and almost reach for it, forgetting that I am bald.

  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    any of you brca+ ladies members of the BRCA Sisterhood groups on Facebook? I am and it's an excellent group to be a member of. I highly recommend.

  • allicat1214
    allicat1214 Member Posts: 84
    edited June 2015

    KBee: So sorry about your son.

    Lynne & Fran: Happy Birthday!

    KsuSusan: Congrats on your promotion!

    Sheshe: Congrats on your final chemo! Good luck with surgery Friday.

    My hair was shoulder length curly and thick for most of my adult life. I bought a shoulder length wig and then a short wig and actually like the shorter one better as it is cooler. Haven't done the towel around my head thing, but I'm actually enjoying that getting ready to walk out the house is less than 30 minutes from shower to leaving! That never happened before with my long hair!

    image

    Right column: 1. Before chemo 2. With my daughter who shaved my head between 1st & 2nd treatments 3. With my son at his master's graduation right before 3rd treatment

    Left column: With short wig last weekend, right before last treatment this Friday.

    One thing I have realized whether bald, long hair, or wigs.....it's all STILL ME!

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited June 2015

    Allicat - gosh, I love the short styled wig on you! And you have the prettiest eyes/smile - who needs hair with eyes/a smile like that?

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    Allicat, you look great bald, long haired or short haired! How in the world do you handle a wig in the head of New Orleans? I'm dying in the air conditioning here!

    Addie, beautiful wreath!

    Hope everyone is feeling good today...wishing good luck to anyone in the chair or suffering from SEs...

    Well, my eyelashes have started shedding...guess that means the taxol is kicking in?

  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Last dose dense A/C ended about 2 hours ago - then out to lunch to handle my raging hunger.  YAHOO!!  I think I'm bringing up the last of the A/C ladies. Blood levels, including WBCs, RBCs and platelets all rebounded well into the normal range (first time since A/C1 - for both round 2 and 3 I had chemo with below normal WBCs).  The doctor reduced this last A/C dose by a percentage to hopefully give me fewer side effects and help me move into Taxol in a better blood position.  Also prescribed MuGard for mouth sores and since it's expensive they gave me a bottle to try before I get it filled. 

    I'm feeling pretty positive right now, and when Day 3 rolls around and I start feeing l like crap, hopefully it will be for the last time with this particular set of SEs.

    I hope everyone handling their last A/C round this week is doing well.  Now on to Taxol.

  • ThePrincess
    ThePrincess Member Posts: 424
    edited June 2015

    Ok - I start Taxol/Herceptin/Perjeta next week - am getting so anxious I could give myself a stroke. The fear of the unknown grab bag of side effects (worst grab bag EVER, hahah KBeee) - is driving me INSANE.

    Already contemplating how many i can take before I quit, which I KNOW Is a terrible attitude! HELP!

  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Hey, Princess, I contemplate how many I can take before I quit every single session.  I think we all do; but generally we keep turning up as long as we aren't experiencing such severe SEs that doctors require us to quit.  I just finished A/C today and I'm already doing the mental "Are 4 taxols really any better than 3...maybe I can stop after 3".   

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    Congrats Gkodad!

    Princess, don't freak out! You can do this! Its not as yucky as AC, at all. We all just plodding forward, one day at a time. My worst day so far has been day 4 when I'm guessing the steroids wear off...just flu feeling and body aches and weepy. But still, it was better than the AC crash!

    I still get underboob sweat even though i don't have any boobs :( I'm so sick of feeling like an alien...

  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    Theprincess I have severe anxiety just thinking about stating taxol on Tuesday- eeekkkkk

    Littleblueflowers I sweat between my playdoh looking boobs- yes that's the way I describe them to people. Two blobs of flesh colored playdoh slapped onto my chest- uneven and all that fun stuff. They are so gross looking. When I raise my arms I can see ripples in the expanders and feel them also. And alien is an awesome way to describe how I feel. Here's to hoping that my mother ship doesn't call me home for many many years or any of us for that matter

  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    Kbee, so sorry about your son's foot and his trip! I hope that he is not in too much pain and heals quickly. Isn't cross country in the fall? How do you even break your foot in cross country?

  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    Is anyone taking L-Glutemine? How are you getting it down? I want to start tomorrow in advance of first Taxol.

  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Today, they suggested L-glutamine and B6 for Taxol, but no dosage...I should have asked but I didn't.  I know it's been discussed - any recommendations?

    Anybody else used MuGard for mouth sores?  Just found out my insurance probably won't cover it, BUT MuGard will send 6 bottles free if your insurance declines, and will do a co-pay coupon that limits you to $40 a bottle if your insurance pays poorly.   I'm going to see how it works before I do anything else.  It's possible they will just keep giving me the free bottles at chemo.


     

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited June 2015

    Lovlilynne, I tried it once and it was hard. Still looking for ideas myself. For me, it was like drinking a glass of chalk. Not looking forward to trying to drink it regularly.

  • ankledolphin
    ankledolphin Member Posts: 99
    edited June 2015

    is anyone experiences sharp pains running down your arms....
    i sent an email to the breast center where I go, and they either email or call you back...and the NP called me...

    I mentioned it last week to my MO but now since treatment 4, they are more annoying and my finger nails hurt more - which the NP said unless they are lifting, not much can be done, but soak in peroxide solution to avoid infections...but the arm pain is what she was concerned over, and how they may have to reduce the chemo they give me, and I said, MO already reduce it due to liver enzymes a little out of whack....the only other thing she said to maybe get them to stop is stopping chemo, but i have 2 more out of my main 6 and I hope the herceptin is the cause of this pain since i need 6-9 more of that!

    So far they dont want me taking anything extra...so i haven't even been taking my vitamin..

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    Addie, the mothership doesn't want us back...if they did, we'd be dead now rather than suffering through all this treatment! Its just sucky to have to fake everything every damn day...hair, eyebrows, lashes, energy, boobs...for a while it was fun playing spy, but yeesshhh...i've never worn this much makeup just to look human in my whole life!

    Ankledolphin, I haven't experienced pains in my arms, but I do get weird collapsing feelings in my thighs when I try to jog...kind of like the muscle can't complete the movement into the next step, if that makes sense. Gawwwwwwwd I hope its not the tree man getting us!

    My MO is not letting me take L-Glutamine, but he is all about B vitamins...weird...

    I have no focus at work today..can you tell??

  • ksusan
    ksusan Member Posts: 4,505
    edited June 2015

    1 teaspoon of L-glutamine dissolved in about 6 oz water, first swished in the mouth then swallowed at one glass after every meal. It doesn't taste like anything to me, but I assume you could add a little iced tea or something.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    For the L-glutamine My MO said 10g 3x a day for 3 days. Heather, I had seen that you tried it and couldn't get it down. I Googled it, and read you are not supposed to have anything too acidic with it. I think I will try ice tea.

  • GingerChi
    GingerChi Member Posts: 252
    edited June 2015

    L-glutamine also comes in capsule form.... did your MO's specify to use the powder? I'm going to ask my MO if she'll allow it and the B vitamins at my appt tomorrow.

    Kbee, so sorry to hear about your son, hope the injury is not as bad as they first thought!! Poor guy!!!

    Congrats on finishing up AC gkodad!!!! YAY for you!!! :))

    Princess: I start Taxol + Herceptin next week too! I'm nervous but on the other hand am ready to get this show on the road!!! My insurance wouldn't approve Perjeta since there were no lymph nodes involved.....my MO went back twice for approval and it was denied both times.

    Allison, your pictures are all great...but the short wig looks sooo cute on you! Love it! My wig is similar to your longer one....I haven't been wearing it too much due to our 90 degree temps lately!


  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    Random stuff:

    Things I never thought I would say: (getting in car to go to work) "Oops, I forgot my hair."

    My co-worker, who lost her mother to stage 4 BC, and her husband to brain cancer, "You look great! You are my hero! Have you lost weight?" I think she is comparing me to her mother and DH - and fortunately I do not look as sick as they.

    Had lunch with my ex-work spouse. I wanted to tell him what was going on before I went out on LOA. He asks if I have heard how "they" have figured out how to use your immune system against cancer cells, have I looked into that? My first "alternative treatment comment".

    Adds to the playlist:

    "Since I Held You" by the Cars - an ode to our sex lives ("It's been such a long time . . .")

    "Freewill" by Rush

    There are those who think that life has nothing left to chance
    A host of holy horrors to direct our aimless dance

    A planet of play things
    We dance on the strings
    Of powers we cannot perceive
    'The stars aren't aligned
    Or the gods are malign...'
    Blame is better to give than receive

    You can choose a ready guide in some celestial voice
    If you choose not to decide, you still have made a choice
    You can choose from phantom fears and kindness that can kill
    I will choose a path that's clear
    I will choose freewill

    There are those who think
    That they were dealt a losing hand
    The cards were stacked against them
    They weren't born in Lotusland

    All preordained
    A prisoner in chains
    A victim of venomous fate
    Kicked in the face
    You can't pray for a place
    In heaven's unearthly estate

    You can choose a ready guide in some celestial voice
    If you choose not to decide, you still have made a choice
    You can choose from phantom fears and kindness that can kill
    I will choose a path that's clear
    I will choose freewill

    Each of us
    A cell of awareness
    Imperfect and incomplete
    Genetic blends
    With uncertain ends
    On a fortune hunt that's far too fleet

  • GingerChi
    GingerChi Member Posts: 252
    edited June 2015

    Oooh, I see why the L-glutamine powder... the pills/capsules come in a much lower dosage.

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    I use to mix it in fruit juice and hardly noticed the taste. One thing I noticed near the end of my tub was that it was imported from Japan- I took it 2 years ago, right after the tsunami (radiation contamination) and wondered how safe a product it was.

    I'm sorry I havnt been posting but I read. Getting wiped from chemo but I'm now half way through!

    KBee I'm sorry about your sons foot, hopefully it isn't as bad as feared.

    Allicat your short wig looks absolutely fabulous! I want that style!

    I'm sorry for everyone suffering SE, it will be worth it though, keep looking for the light at the end of the tunnel!

    Thoughts and hugs to all!

  • Karen30
    Karen30 Member Posts: 135
    edited June 2015

    I add the L Glutamine to a skinny cow coffee drink in the am and to a little juice at night - don't even taste it. First taxol tomorrow- haven't recovered from GI issues caused by last AC yet- seeing colorectal doc tomorrow- we will see- decadron started this am

  • ksusan
    ksusan Member Posts: 4,505
    edited June 2015

    #6: I am grateful to be able to tolerate wearing a tank top that felt too irritating to stand a few weeks ago.

  • StacyMc329
    StacyMc329 Member Posts: 48
    edited June 2015

    taxol #2 seems better than #1... Just the back hip and knee pain like before but I took Claritin and I think that helped some. I'm pretty happy MO said I can get my port out as soon as I finish chemo.. I thought it wouldn't come out so quick... ? Is that the norm Hope you all have a good weekend:)

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