Starting Chemo May 2008

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  • revkat
    revkat Member Posts: 763
    edited June 2008

    You May women are amazing! I took my hat off in the car today and drove through LA traffic almost hoping for some reaction, but you know, I'm not sure that anyone else noticed. Maybe it's like middle school -- we think everyone is looking at us, but really they're all worrying that everyone is looking at them.

    Rock on.

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  • katiesmommy
    katiesmommy Member Posts: 3
    edited June 2008

    I had my first treatment of cytoxan and taxotere on May 19.  I had started tamoxifen in March.  The day of chemo wasn't bad, thank god for benadryl.  The day after, I felt like I was high, that was the steroids.  The 2nd day after, SUCKED.  I felt bad-tired, nauseated, and just blah.  ever since then has been good.  I was told that my hair would thin, but it has started falling out.  It started on Thursday, and needless to say, I wasn't ready for it. I thought since I didn't have to have the adria that my hair wouldn't fall out, boy was I wrong.  Needless to say, i have to go wig shopping tomorrow.  I've cried since wednesday, but you know what, the cliches are true, "it's only hair, and YES, it will grow back."  I guess the chemo poison doesn't know the good from the bad, oh well.

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  • otter
    otter Member Posts: 6,099
    edited June 2008

    katiesmommy, someone fooled you if you were told your hair would just "thin" on Taxotere & Cytoxan.

    I am also on TC, and my onco guaranteed that I would lose my hair.  My dh says she said "all your hair," but I guess I blocked that part out.  Anyway, I didn't shave my head, but I have almost no hair left anyway--I'm guessing maybe just a very fine fringe on the sides, but the top is completely bald.  My head is not shiny-bald because of the thin fuzz.

    And that's not all, of course.  As others have said, I lost hair everywhere.  I still have a little bit left on my arms, and I haven't lost my brows or eyelashes yet, but there is still time for them to go in the next few weeks.

    I'm sorry, but don't like that phrase, "It's only hair."  Mostly that statement seems to come from people who haven't gone through chemo and have not lost their hair.  There is even a book about BC that's called, "It's Not About the Hair."  Ironically, the woman who wrote that book was given a chemo cocktail (CMF) that did not make her hair fall out.  So for her, of course, it wasn't about the hair at all.  She never had to deal with baldness as a visible indication that she had cancer.

    Sorry.  My hair loss occurred in mid-April and it really doesn't bother me as much as it sounds.  I looked through on-line catalogs for wigs again today, and they still all look like dead raccoons.*

    otter

    [Note added in edit:  *Except for Rock the Bald's wig, of course.  Hers looks fabulous!] 

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  • Gracie713
    Gracie713 Member Posts: 302
    edited June 2008

    Roxi---you can take me off the Wed. list for this week, I go for #2 on the 18th.  My tx are every 3 weeks. 

    I'll let you all know how the LGFB class here goes.  I usually only wore make up to work, and then it wasn't much.  Hubby always calls it my "war paint". 

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  • ewesterman
    ewesterman Member Posts: 417
    edited June 2008

    RobinK,

    So we are on off weeks...I go to my third A/C on  June 19...Rockthebald, thanks for looking. Surprised It is day one so not all the way blad yet...scraggly still. My friend, Faith, came over and put a scarf on me. I feel like a religious Jew. I am a Jew so there is a stigma that goes with this, but most people who are not Jewish have no"religious Jew" stigma. PLUS, if I wear a wig, it'll be even worse...I think I can like the scarf thing...but the cotton cap and baseball cap work well too. Tomorrow, I am taking a day to transition back to work. A massage in the morning and free (yahoo) cancer yoga in the afternoon. I wish each of you a week of calm and cool (for those in the hot climates) and of sun (for those of us who saw approximately 45 seconds of sun this week --) To those suffering SE today, know that each day brings a different picture. It is an honor for me to be online connecting with you. I appreciate each of you as I get to know you. 

    gm2Kierei, Hang in there woman. You are ahead of me in A/C and your next margins will be clean. No vomiting for me either. Woo hoo! revkat, the air feels good on the head. I can't wait to swim in coldwater. Dana, I am thinking about you. Write when you wish...not just when things are good. 

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  • ewesterman
    ewesterman Member Posts: 417
    edited June 2008

    Ah, Gracie,

    I see from your post you go in (once more) the day before I. You are my leader. We have an off week. Woo hoo! 

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  • drcrisc
    drcrisc Member Posts: 836
    edited June 2008

    Roxi - Thanks for taking on the list this week!  Smile  But I'm on for next Thursday, not this one.  Gotta have my 10 good days left!!

    Rock - Thanks.  What started out very shaky, ended up really well.  Have fun in DC!  I think at the end you should repeat the "Sex in the City" scene and rip off your wig!  Dare you!!

    Eddie - LOVE the pictures!!  Keep whatever you want as your avatar!

    Linda - 2 things about eyebrows.  You can order them (seriously!) from headcovers.com or the girl at my LGFB class told me that Longs (a drugstore in CA) has "templates" that you can put over where your eyebrows should be to help with shape, etc.  You might find it online.  And if you take an eyebrow brush and brush lightly over them after, they don't look so "penciled in". 

    Dana - So sorry to hear you're still struggling with those pesky s/e's.  And port clogs???  That's supposed to make it easier, not harder!  Did it not get the memo?  That's a good question about Carbo and Cisplatin.  It's hard for me to sort out because I get Cytoxan also.  Although I think my weird taste issues were from the Carbo - it wasn't the metallic thing.  And I had very mild, brief nausea most of last week (days 4 through 8).  I will send the no s/e thoughts to you...sending...sending...sending...

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  • drcrisc
    drcrisc Member Posts: 836
    edited June 2008

    Welcome to gm2Kierei - glad you breezed through and I hope it continues that way.

    Welcome also to katiesmommy - I am a "Katie's mommy", too!  She's the one who just had the birthday party (real birthday is Tuesday).  I also had my 1st tx on May 19 with Cytoxan and Carboplatin.  Our reactions sound very similar with the third day (day 1 is chemo day) being the worst.  It took me pretty much a week to feel completely like myself again.   

    Or maybe not I'm not quite myself...I have a question.  Has anyone had breakthrough periods/spotting?  I started spotting yesterday morning and I just finished my last period about a week before that.  What's up?!  My onc, like most of you have mentioned, said I would most likely slip into early menopause so I was at least looking forward to a period-less summer as a benefit, but noooooo...now I'm having them more frequently?  And then I get worried about what it "means" - could be nothing or some horrendous other thing!  Aaacckk.  And help.  Please.

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  • EyesOTex
    EyesOTex Member Posts: 194
    edited June 2008

    Cristine, were you menopausal before you started chemo?  I was thinking not?  This could be just final "letting go" of tissues as all the estrogen goes away (I don't think each period lets go of ALL of it, and you may have had some build up before the CC had a chance to fully kick in, like some hair growth, tiny but there), but I definitely think it is worth mentioning to your doctor.  I was pretty much into menopause when I started TAC, had no periods then, was given Norplant or something like it for hot flashes (I'm triple neg) and then had breakthrough bleeding a coupla/three months later.  Uterine biopsy was ok but scared me.  Get it checked out; even if there's no other cancer in your family triple neg can be associated with ovarian cancer (bloating, fullness, painful period?)  So, no, don't go screaming into the street this morning, but give the onc and your gyn a call and a head's up, please!

    I can't remember....well, as gsg says, I can't remember Jack, but aside from that, can't remember if I said I'm dragging this mess out to everyother week now if the counts allow.  Apparently since I'm not on that TAC study that gave me Neulasta and/or Procrit before, I just wait and see how bad the counts get now????  And see if I want to fork over for the Neulasta and/or Procrit... So my next Friday dip will be on June 19.  That will be my first tx of round 3; in other words only four more total txs for me from today if I'm lucky.  I hate the delay because I could still feel the lumps but now they ARE feeling a little smaller, I think... 

    Then I guess scans and a month off and then I think it is Xeloda?  Anyone using this?  Anyone staying around that long?  I noticed some of these trheads are quite long.

    I have a problem in that I forget what I've written at the top, scroll up, an dthen for get it before I get back down here!!! suffice to say I love you all and hope you are feeeling WELL,  BRAVE, BALDLY HAPPY, and your kids are coping well.  My 3 y/o grandson hasn't seen me yet with no hair and his parents aren't really preparing him so I don't know how that will go.  The 13 month old thinks it's very diffferent but likes to put one finger on it and giggle.  he he.

    love to all from my steriod glaze

    dana

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  • rock
    rock Member Posts: 1,486
    edited June 2008

    I will try to catch up with posts when I get to DC. (Leaving soon.)

    Briefly . . .

    Scar tissue can cause "cording". I try to massage mine using a little antibiotic ointment (after the scar had healed) to reduce the cording and lumpiness. (Search the site for "scar massage" -- I'm pretty sure I've posted on this somewhere before.)

    Right now, there are NYC firefighters in my buildings tromping up and down the stairs.   I went out to the hallway in my bald glory with my white t-shirt and red monkey pajama pants and asked them, "Anything I should know?"

    I feel like I have achieved a new level of bald nirvana. 

    Otter: You're right. My wig does not look like a dead racoon draped on my head. More like a dead ferret. And it's about as comfortable, too.  

    Dana-- your picture does me a world of good. Knowing that this sounds unforgivably cheesy and Hallmark-y, there is something about the smiles of women with breast cancer that makes me smile too.  And in a real way, not just a "I am smiling to make someone else feel better" way.

    I am missing you guys already.  

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  • EyesOTex
    EyesOTex Member Posts: 194
    edited June 2008

    Rock DC!  Thanks for not mentioning my bunny teeth, and have FUN if you can.  We'll miss you!

    Dana

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  • MsKarin
    MsKarin Member Posts: 647
    edited June 2008

    gm2kieri,

    Yes I have the same thing. My surgery was 5/2. Taken from this site: This may be hematoma-an accumulation of blood in the wound-or seroma, an accumulation of clear fluid in the wound. Both tend to resolve slowly over time.

    My surgeon ordered an ultra sound which showed mine was hematoma the size of a plum to lime. He stuck a needle in to try to drain (didn't hurt) only small amount came out, he massaged more out but still have alot left in me. Just as stated above rest will slowly be absorbed back into the body after time.

    The good news is that I have a few months left before you can see my lopsidedness, lol. Right now I still look even.

    Enjoy the day, Karin

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  • SallyS
    SallyS Member Posts: 4
    edited June 2008

    I'm starting chemo in 2 days, so I'd love to join the group. I'll be having adriamycin and cytoxin, followed by taxol, and then radiation. My husband and I are planning a haircutting session for that night. What fun!

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited June 2008

    Christine,

    My chemo brain is giving me a hard time. I tried the list but wow how do you keep up with it? I tried but you are the master....I'm off to work and tx #3. Have a great day all.



    Sally, welcome and I have you on this week. Good luck.



    Monday - Roxi #3

    Tuesday - SharonF (#3) and Janice (#?)

    Wednesday - Lenny (#3), Becky (#2), Sally #1

    Thursday - Angels (#3), 2Grace (#2), Kristy (Herceptin) and Randie (#?)

    Friday - Dana (#?)

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited June 2008

    Katiesmommy,

    When is your next treatment. We need to get you on the list. Keri, added you to Wednesday, right? Christine....HELP!!!!



    Monday - Roxi (#3)

    Tuesday - SharonF (#3) and Janice (#?)

    Wednesday - Keri (#3), Lenny (#3), Becky (#2), Sally (#1)

    Thursday - Angels (#3), 2Grace (#2), Kristy (Herceptin) and RanD (#2)

    Friday - Dana (#?)



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  • ranD
    ranD Member Posts: 373
    edited June 2008

    Roxi: It will be #2 for me. Sorry this is the first time I have been online since Friday.  I started running a 100.9 temp thru most of the weekend....I got it down by sat nite...but it was kind of scary since the day before I felt like myself....this a.m. I feel a little seasick, but the night sweats are really getting annoying.

    Rock: way to go rock DC

    Dana:  Love the picture, I'll put my up once my hair is gone.  Day #11 and now I fid myself doing a tug with my 5 yo every morning!!lol...so far, its still there and actaully I am shedding less then i did b4 tx...go figure!

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  • lewing
    lewing Member Posts: 1,288
    edited June 2008

    Funny how many of us have daughters named Katie!  

    Eddie, I can identify with your whole "religious Jew" issue.  (I'm not Jewish, but my boyfriend's family are secular Jews.)  Anyhow, the first time I put on a headscarf, I couldn't get over how Orthodox I looked.  As long as I'm not around observant Jews, I'm totally comfortable with the look -- but put me in an environment where other women are covering their hair, and instead of feeling as though I blend in, I feel really, really weird.   I had to buy a yahrzeit candle the other day, and actually went out of my way to avoid going to a kosher market. 

    Go figure.  Perhaps I'm afraid someone will point at me and exclaim, "She's not modest!  She's -- gasp -- bald!"

    Linda

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  • familyroks
    familyroks Member Posts: 575
    edited June 2008

    Good morning all.

    First I'd like to say to all in the horrendous heat...I hope you are able to find relief from those awful temps.  After finally catching up on the news, I won't even consider complaining about cooler than normal temps.  I'll be thinking of you all.

    Rock - have a great trip!

    Roxi - You've done a great job on the list.  I don't know how you guys keep track.  Good luck today on tx #3!

    Sally - Welcome.  There are a great group of women here who can offer support, wisdom and humor.  You might want to check out rockthebald's post on tips for getting through chemo.  Invaluable information in that thread.  I'll bump it up as soon as I'm done here (unless its already been done!)

    Cris - I had my normal period, as expected on May 17.  Then lo and behold, I started again (and still going...grrrr) on June 4.  I've always been a every 28 day kinda gal.  I too was looking forward to possibly no cycle.  The nurses assured me that I'll get my wish when I start the 5 year hormone therapy after chemo.

    Randi - my hair did the same thing.  I've always been a big shedder.  I couldn't understand why my shedding stopped when I started chemo.  In the back of my mind I was thinking..."Wow, could I be so lucky not to lose my hair?".  Silly me.

    Stay safe and cool today.

    ~Adrienne

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  • familyroks
    familyroks Member Posts: 575
    edited June 2008

    Eddie - I love your photos.  Thanks for sharing.  I must say...Marty looked a little toooooo happy with those clippers in his hands!

    ~Adrienne

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  • ranD
    ranD Member Posts: 373
    edited June 2008

    Eddie,

    Great pics, but my 16 yo ds who is on his way to beach camp for the week made me promise not to do anything crazy til he gets back....hmmmmmmmm

    Adrienne as far as a period, I haven't had one since I was diagnosed...lol...and I was regular all the time...so far keeping my fingers crossed and hoping for a summer w/o pads.........

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited June 2008

    Hi Everyone,

    I also have a Katie (well Kathryn legally but we call her Katie).

    I had tx 4 June 5 and I am starting to rebound- several days of foggy and feeling drained, taxotere also seems to cloud my vision literally- so I didnt drive until today. I am working half day today and hopefully back fulltime tomorrow- thats how it worked out last time. Seems to be less Neulasta pain this time probably due to all the walking I was doing pre-chemo this round- I felt great the week before treatment.

    My next chemo is June 26- Im every 21 days but I stay in the Thursday club for Herceptin every week. Two chemos in June thanks to the calendar but Im half way there now- 3 down and 3 to go!

    Welcome to our new members- we were a busy board this weekend and I barely skimmed to get caught up after being out of it for several days!

    I still have about 40% of my hair- I cant believe it. Of course, I buzzed it off and wonder if that is the reason it is hanging on- I thought it would be completely gone by now AND some of the buzz is actually growing- THAT looks totally awful!

    Im going to the LGFB class next week in Shreveport, Louisiana- we are taking a couple of days there - hubby in the casino, me and youngest boy going to Science Place, me and my  Katie going to the spa (her 18th birthday is next Friday the 13th)- hopefully I will do well on this little outing and we might have another short trip this summer. I have treatments every Thursday so its hard to do much or get very far from home!

    Everyone hang in there - we are making progress!!!!

    Kristy

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  • robink
    robink Member Posts: 336
    edited June 2008

    Look Good Feel Better:

    hummmmmmmmmmmmmm

    There was a nice spread, fresh fruit, chesses,crackers, dessert bars, water and joice.  Yummmmmmmmmm.

    A nice mix of complimentary cosmetics in the bag.  Maybe I'll wear a few of the items.  The foundation was so dark it was quite unnatural.  No problem!  I brought my own makeup bag!  I can't say I learned anything new except that I am happy with my current routine (minimal) and will continue what I've been doing.

    I was the youngest attendee (52 yrs old).  Several of the older ladies came in with a minimal working knowledge of how to apply makeup and looked suberb when the session was over.  Those same ladies also received wigs and it did wonders for their out look.

    What did me the most good besides the interaction with everyone was seeing how important it was for the volunteers to want to help those of us in the room AND seeing the smiles emerge from the ladies who were transformed by this event.

    If you have not gone but want to give it a shot - go for it but take your own makeup if you have sensitive skin or are picky.  You just might have a good time.  And if not, maybe you'll be some tasty snacks!

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  • Gracie713
    Gracie713 Member Posts: 302
    edited June 2008

    The LGFB class here was okay.  There were 4 of us there, one other was close to my age, the other 2 ladies were late 50's, early 60's.  They really looked good when it was all over and they had picked out their wigs.  The cosmetics in our bag were really good--brands that I probably wouldn't buy because of price.  Snacks were sparse--granola bars and peanut butter or cheese crackers and bottled water.  But I am guessing that budget is kinda minimal this month due to the survivor dinner they are having tomorrow night and the Relay for Life on Friday.  Didn't really learn anything new, but had a good time interacting with the others.

    Hair loss starting, south of the border.  Not a shock but still kinda freaky.  I guess that there are some things that still are, no matter how well prepared you are for it. 

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  • MsKarin
    MsKarin Member Posts: 647
    edited June 2008

    Gracie,

    Today my hair started falling out also. Woke up to only a few on my pillow. Later scratching itch about 10 or more fell out. Then at onco office, scratched head and twenty or more hairs fell onto my pants. Everytime I scratch the itching head they fall. Pray I'm blessed and only itch and not hurt.

    P.S. - When others said day 12 they weren't kidding.

    Enjoy the day, Karin

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  • familyroks
    familyroks Member Posts: 575
    edited June 2008

    Robin -   Wow! You guys were fed?   So glad that you had a good time at LGFB and that you were able to experience how others were able to benefit from the whole thing.

    I'm thinking I need to send some comments to our local chapter because I think everyone should walk away feeling that way.

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  • clg47
    clg47 Member Posts: 6
    edited June 2008

    Hi All,

    I've only posted once before, mostly just lurking out here and reading all of your great posts.  Is wonderful listening to such upbeat, positive gals.  Is very inspirational and informative.  Many thanks for your help on this not so fun journey.

    Today was #4 treatment of dose dense AC, so on to Taxotere weekly for 12 weeks starting on June 23.  Overall, have felt ok (not great but ok) on AC and wondering how different I'll feel on Taxotere.  Any input on this would be greatly appreciated.

    I can really relate to the "tropical" locations you guys are hitting for your treatments.  We had to cancel a 3 week trip to Hawaii in July using our timeshare.  What a drag!  I live in the Phoenix area so getting out of dodge in July is so wonderful.  The triple digits definitely start to get to you about the July timeframe.   My wonderful husband decided that since we had to cancel Hawaii he would take me on a Carribean cruise in December.  What a sweetheart!  I am so lucky to have such a wonderful hubby in my life.  Is great to have a wonderful trip to look forward to after all the S**T is over with.

    Thanks again for all your great posts.  Wishing you all as safe of a journey as possible during this "trip"  we're on!

    Christi

    Dx 1/31/08, IDC, 1.4 cm, Stage IIa, Grade 3, 2/4 nodes, ER+/PR-, HER2-

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  • Debbiem425
    Debbiem425 Member Posts: 103
    edited June 2008

    Hi everyone

    I have only posted a couple of times - I also have mostly been lurking.  I have CT #2 on Thursday, that is if it is not postponed.  I have been having a problem around both incisions.  My skin is all red and the scar line is not the nice think pink line I used to have, it is a bit infected looking, below the skin.  My oncologist thinks it is nothing.  My ps thinks it's a big problem but he is perplexed about exactly what is happening.  He has me on two antibiotics, instructions to take it easy and he is afraid if it isn't under control soon I could loose my implants.  I saw him twice last week and since he is on vacation I am seeing his partner on Wednesday. My ps was supposed to call my oncologist last Friday to see if they could postpone this weeks chemo but they never called me with an outcome.  I am hoping it clears enough to just get on with it.

    I went to work today for the first time in a week and the first time I wore my wig there.  Very few coworkers know I am going through chemo.  I got a lot of compliments on my highlighting!  LOL  I did feel a little "stiff" like as if I was trying to keep my head still.  I guess comfort will come in time.

    I finally looked on line at the Feel Good Feel Better classes and there was one tonight at my hospital - guess I should have looked sooner.  There is another one at a different local hospital in a couple of weeks so I will call them tomorrow.  I hope they feed us - haha - my appetite has not suffered through this, I feel like all I do is eat!  I just made brownies. 

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  • otter
    otter Member Posts: 6,099
    edited June 2008

    Karin, my scalp never did hurt.  It itched, but I didn't have that tight, pulling feeling (like a too-tight pony tail) some women have described.

    I don't know why there are such differences in the way this affects us, even if we're getting the same chemo like you and I are.

    Today is day 6 of Taxotere/Cytoxan round #4 and this is the mildest round I've had.  I don't know why I feel so good this time.  My mouth and tongue are a little sore this evening, as are my fingernails, but that's it.  I felt so good that I made a road trip to WalMart today--that's definitely a first for day 6, which I usually spent curled up in my recliner.

    WalMart was good.  I found some more soft cotton fabric for 2 more scarves, and I bought lots of thread and even a McCalls pattern for headcovers.  I had been looking for eyebrow powder but had not found anything except pencil,.  But, there in the Maybelline display at WalMart, I found "ultra brow brush-on powder" and even a brow "kit" that includes a stencil, a brow pencil, and a brow comb.  Everything I need to patch my thinning eyebrows!

    otter

    otter 

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  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited June 2008

    There are a few new people to the board so welcome great place to come for support , just wish we were all here for another reason..

    It's day 12 of my tx #2, been feeling quite good this time around just my blood counts have been causing me grief. Even after 5 shots of neupogen my blood counts today were really quite low.

    WBC - 0.07

    Platelets - 47

    Neutriphil count - 0.12

    So they have me on neupogen for 3 more days to see if this will boost it up. My onc phoned me today to check up on me and he said that this is probably my lowest or Nadir and things should climb. My doctor also phones after every blood test at home so I count my blessings to have such caring people who are looking after me! 

    I have to go see my onc on Monday next week after a test to see if I will be able to do chemo that week, he's not that hopefull. I guess i shouldn't have written all my dates on the calendar with pen. I so don't want to prolong this longer than i have too!! 

    Otter so glad this is an easier round for you, maybe your body knows this is it and it's giving you a break! Do you have radiation after or is this really the finish line for you?

    Debbiem425 hoping for you that things go as planned and you can keep you schedule !

    Good luck to those with tx this week and those dealing with se's hope you can get them under control.Innocent

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  • ewesterman
    ewesterman Member Posts: 417
    edited June 2008

    Women,

    You take off a few hours and the lines are jamming. First off, that guy shaving my head is our friend, Larry...not my husband, Marty. Marty was taking the photos. The other guy with lots of hair is our son, Max. Enough about that. On to yoga...that was very successful...probably more than the lgfb classes although I guess there are lots of tips out there for all of us. I do NOT have a daughter named Katie, but I like the name very much. I am not sure, if after my first four doses of A/C, I go to taxotere or taxol which is kind of scary not to know. Washington DC?  Cool.

    Linda, thanks for understanding that whole scarf thing. It's kind of weird, but I really feel that way. Scarves will be fine as long as I don't head into any religious neighborhoods.

    Adrienne, I am starting to think our weather is good as these women are getting hot, hot, hot.

    About periods, I am telling you that I am a regular 28-day girl too and not even really pre-menopausal, but I DID get my period (as a gift methinks) the DAY chemo started at chemo. Did I have a tampon? Uh uh. Did THEY have tampons? No siree. Did my sister-in-law run across the street to the drugstore? Uh huh. Will I get my next period on the 19th at my third and next dose of A/C? Stay tuned to fine out. Take care all of you and I am thinking of each of you. Dana, you are currently balder than I. I am still scraggly and the duct tape is not working though it is pulling my hair out. Ciao 

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