Starting Chemo May 2008

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  • collector
    collector Member Posts: 193
    edited May 2008

    Hello everyone.  Otter, my name is on this list but not on the T/C list for treatment beginning 5/19.  I'd love to have it there, also.  My chemo class yesterday was too basic.  I had read/heard everything on this list or elsewhere prior to the class.  One good thing was that my husband went along.  He has not wanted to read all the stuff I'm reading and I think the class was of benefit to him.  I also went to the wig store with my hairdresser who knew I was having a weepy time of it.  She was great.  I bought one and she encouraged me to get a second one to "have fun with" but I really hated the feeling of all that HAIR!  My own hair is terrible and thin and I really doubt it will come back to its current state after chemo so I really might have to get used to that ^%$# wig.  I'm debating the Look Good Feel Better class.  I'm not the girly girl type and the thought of doing a whole makeup routine that still won't look like ME is just awful.  I haven't ruled it out but have a bad attitude about it I guess.  I guess it will be mostly my bald head with a few scarves for going to my guild gatherings where I am a little more comfortable.  Perhaps I can guilt a few of my knitting friends to knit me some caps.  Now I need to focus on my port insertion for tomorrow.  I'm treating that pretty lightly but I guess I should read over the preop stuff one more time.

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  • susansblues
    susansblues Member Posts: 88
    edited May 2008

    robink - Please add me to the May list as well. I actually started on April 14, but I'll be going for quite awihle. I'm first getting 4 cycles of AC, dose dense (I had my 3rd tx yesterday, & the 4th is scheduled for 5/27). After that, I'll get 12 weekly cycles of Taxol + Herceptin. At the end of that stretch, I'll continue on Herceptin once every 3 weeks til I've been on it for a full year. Also, after the Taxol is done, I'll get radiation (33 tx, 5 days/week for between 6 & 7 wks), & after radiation is finished, I'll go on some hormone-blocking therapy (to be determined) for 5 years.



    Best wishes to everyone here for uneventful treatments & minimal se's!

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

    Otter: I am having these great convos with my mom (and my dad) now. But it does seem like it took the safety of 30 years passing for them to acknowledge that they were scared out of their minds!

    Otter & collector: I'm not girly girl either. My plan is to (at most) wear mascara (Maybelline FullnSoft waterproof: it's easy to apply, stays put and makes me look awake) and some Burts Bees lip balm.  

      

    I look far worse when I have TRIED to wear makeup than au natural. (God's honest truth: Pre-cancer, someone mistook my eye shadow for an allergic reaction.  And don't even start me on my brief foray into self-tanner.)

    Hair-wise: I'm thinking of a mummy-type close-to-the-head scarf thang w/ sunglasses  (circa 1970s). Any pointers?  

    Collector:  Here's hoping for a completely dull and uneventful port insertion! 

    Tomatojuice (and other Wed. chemo dates): You'll be in my thoughts!

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited May 2008

    Tomatojuice,

    I am also on TCH- first treatment was 4/24 and my second treatment is 5/15. I also get Herceptin only on the in between weeks. Looks like our diagnoses are also very similar and it sounds like the side effects were too. I had a total crash after my first treatment and ended up in the hospital- hoping to avoid that this time around. Good Luck on your treatment tomorrow!

    Kristy

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  • robink
    robink Member Posts: 336
    edited May 2008

    tomatojuice, susanblues and danismom:  I added you to "the list".  Anyone needing to check it out can refer back to page 8 on this thread.

    `````````````````````````````````````````````````````

    Reading the comments about moms I wanted to tell my Mom's story.  She is 80 years old, birthed 5 children, lost my dad to cancer when I was 12 years old, worked full time to keep a roof over our head, remarried 3 years later to a bachelor willing to take on a fiesty woman and 3 teen girls still at home.  The older she got the more active she became...until...2 years ago when she was diagnosed with breast cancer.  She figured a mastecomy would take care of the problem, didn't need chemo but didn't have time to be bothered with radiation therapy.  The day she came home from the hospital she suffered a stroke and on the day she was moved to the rehab unit she had a 2nd stroke on the other side of her brain.  By the time it was over she was severly impaired on her right side and half blind in her left eye. Two years later she attempts to stay as active as possible.  Works in her garden, loves to cook, takes walks daily unless the weather is bad, travels regularly with a senior citizen group.  It broke her heart to be unable to come be with me when I had my surgeries (she lives in Ohio and I'm in Colorado) but she prays for me everyday and loves me deeply.  I miss her terribly and sometimes wish I could have run home to Mama but God keeps us connected across the miles.  Her name is Rosemary.

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited May 2008

    Hi all,

    Got home from my first A/C about four hours ago. Feel good...went and picked up a little thank you gift for my general surgeon. I've had three surgeries in six weeks, maybe he should be buying me the gift. Ha! The port yesterday went great, a little stinging but tolerable. Today's treatment has been good so far but I know it's only day one. I received Neulasta during treatment. I was also prescribed Emend for nausea and dexamethasone for my blood count, both which I take for just the next two days.



    I returned to work today, pretty exciting to say the least. I needed it though. Keeps my mind busy.



    All your stories about your brave mothers touch my heart. Enjoy as much time as you can with them. I lost my mom seven years ago at a tender age of 64. Way too early....



    I'm sending positive vibes to all.

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  • drcrisc
    drcrisc Member Posts: 836
    edited May 2008

    Rockthebald and RobinK - Thank you so much for sharing your mom's stories.  They touched me in two different ways as I have 2 young dd's and wonder too often how this has been and will affect them.  My mom is 78 and I thank God every day that she is only 5 minutes from me.  Not that we haven't had our moments, I have never needed her more than now.  I wish I could clone her and send her out to everyone who wants/needs a mom!!

    Roxi - I'm glad things went well today and I'm hoping the same fo everyone else who gets a "cocktail" this week.  Maybe they will give us little umbrellas...Smile

    I was disappointed to find out that I will probably not have my path results by the end of this week.  Apparently the lab at Stanford called my hospital and asked for another "block" (presumably of tissue).  How much can there be left, fer cryin' out loud?!  I know it means they're doing their job, but I HATE waiting.  Maybe I should move this over to the moan-n-groan board...

    I'll keep you guys posted...

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  • robink
    robink Member Posts: 336
    edited May 2008

    Cristine : waiting in limbo is sooooooo hard.  I've just prayed for peace during this time. In the meantime find things to enjoy before chemo takes the normal out of your life (temporarily)

    Robin K

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  • EyesOTex
    EyesOTex Member Posts: 194
    edited May 2008

    Christine, tell them we don't want to lose you to the June chemo group so they've got to get on the ball here!!!

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  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited May 2008

    Carla, haven't heard from you in awhile and just wanted to make sure you are doing ok? I've been worried about you. Where you able to get rid of you sore stomach?

    Roxi glad to hear you had a good first day, can't believe you went back to work the same day, wow you must be strong! Hope today is even better! 

    Collector good luck with your port today ,

    cstock39 & tomatojuice good luck with your tx today

    I'm think i might start go cybre window shopping for real hair substitutes today, see if anything turns my fancy. Most of our summer will be spent at the cabin so don't have to get to fancy, more for protection from the sun than anything. Has anyone come across something light and cool for the summer ? 

    I've been kinda lounging around the last couple days, the one time when i don't feel guilty about doing it! Feeling really quite good, so need to get up and get motivated hoping to get outside and enjoy the warm weather ahead.

    Here's one last note on Mothers, my 12 yr old daughter gave me this on Mothers day and  thought I might share.. 

    When your a child she walks before you,

    To set an example.

    When your a teenager she walks behind you

    to be there if you need her.

    When you're an adult she walks beside you

    So that as two friends you can enjoy life together...   Innocent

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited May 2008

    I found some nice sun hats at sungrubbies.com - I ordered online and they had great shipping times. My daughter plays select softball and I wanted something to protect me during the summer so I can watch her as much as possible. I ordered the "resort legionnaires hat" - all the high school girls loved the hat and wanted it and I also ordered the sun hat that you soak in water and it has a rim that absorbs the water and helps keep your head cool.

    I go for tx #2 tomorrow and Neulasta on Friday. Doc said I could use advil or tylenol if I had bone pain and could take my darvocet if it was not manageable with the OTC stuff. I was sure hoping to avoid the neulasta but I dont want another hospital admission during round 2 so I have to have it!

    Kristy

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited May 2008

    Angels, that peom from your daughter brought a tear to my eye. It's so true. I saw a few scarves and hats at chemosavvy.com but haven't ordered anything yet. I'm going wig shopping with my daughter on Saturday.



    Kristy, my onc is administering the neulasta during my treatment, maybe since I commute??? Good luck tomorrow with treatment #2. That's 2 of 4 right? Halfway there.


    Hope everyone's tx went well today. Keep us posted. We're thing about you.



    Today I had my first fill in my expnader. Oh god is it sore. They put 250cc's in during surgery and 150cc's today. I'll have two more fills of 100 each over the next two weeks. As for my SE's from my treatment yesterday, so far so good. I'm a bit tired but working 4 hours a day proably adds to it. I was a bit queezy but the meds kept everything under control. I noticed my coffee was hideious this morning. Has anyone else experienced this?



    Have a great evening...Roxi

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

    I did it. I bought a wig. $40.  The wonderful 20 something who cuts my hair @ Aveda met me in Chelsea (14th Street & 6 Ave) and we found one that "worked" in less than half an hour.  The first one she handed me. 

    She suggested I go with a longer haired wig because it should be forgiving (translation: should require minimal styling) and if it starts to look beat up, we can trim the ends. 

    She didn't charge me a dime. But I'm going to swing by the salon tomorrow to pick up a spare "head" and give her $50.   (I'm going to write to Aveda corporate headquarters, too.)

    I tell you, young people nowadays...   

    cstock & tomato and anyone else who had chemo today:  I'm beaming you non-queasy, happy post-chemo thoughts!

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  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    Love the mom stories.  They all touched me.  My own mom...well I want to be just like her when I grow up.  Unfortunately she lives 3,000 miles away in Florida.  She'd be here in the drop of a hat, if I asked.  But my mom, she is raising my 3 year old, autistic nephew and has just added the responsibility of taking care of his 1 year old brother (also developmentally delayed).  I don't know where she pulls all of her strength from.  She is amazing.

    It sounds like everyone is doing very well!  Rock...congrats on the wig!  I received mine about 1 1/2 weeks ago and its still in its packaging Undecided.  I guess I should get it washed and set on its styrofoam head soon.

    I have to read back in detail to catch up on everyone.  I scratched my cornea so haven't been able to sit at a computer for more than a minute but I've scanned through the posts as much as I can in those brief periods.

    Collector, I hope your port install went well.  You'll appreciate having it, for sure.  For those who started treatment this week/today...I hope all is good for you.

    I had my follow up blood work today (1 week post treatment).  Everything looks good and the Neulasta did its job.  While my WBC was a tad below normal, it would've been much worse without the Neulasta.

    Happy, positive thoughts to you all.

    ~Adrienne

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  • EyesOTex
    EyesOTex Member Posts: 194
    edited May 2008

    Wigs...maybe...I'll have to comtemplate the possibility...of thinking of...arranging for...getting...a wig.  Last time someone gave me 2.  They were itchy and annoying and probably didn't fit right...(I'm microcephalic), but the young lady who gave them to me was so young and healthy otherwise I felt totally ungrateful...ungracious...whatever.  She is a gem, and I'm an ingrate.  ANYWAY, last time I went with scarves, bandannas, hats, etc.  I sort of felt I deserved some kind of aknowledgement, maybe?  But now...who knows.  We'll just pplay it as it lays, and see.

    Hope, hair, and love to all

    dc

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  • drcrisc
    drcrisc Member Posts: 836
    edited May 2008

    Robin and EyesOTex - Thanks for the good thoughts.  Actually, I am thankful I'm not starting this week because my oldest dd has her last gymnastics competition for the season on Saturday and it takes a lot of energy for both of us!  And even if I'm into June, I'm not leaving you guys! Er...gals! Laughing

    Angels - love the poem and check out paulayoung.com for wigs.  They have some reasonable ones, both in style and price.  There were also some scary things - Yikes!

    Kristy - sending good thoughts your way for tomorrow! 

    Roxi - glad you're se's are not bad, but sorry your sore.  Ouch!  Frown

    Rock - so you're not so bald anymore, huh?  You never know, it may come in handy!

    Adrienne - a scratched cornea - sheesh!  As if you're not dealing with enough...

    cstock, tomatojuice and otter - hope your txs were uneventful!

    And where is Carla?!  Hope she's o.k...

    I came home early from work today because I was having severe cramping and not the "monthly" kind.  I won't go further, could be TMI!  Tongue out  But at least I got to nap for a couple of hours...

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

    Adrienne: Scratched cornea? Ow. Ow. Ow. Ow. Ow. Ow.        Ow. 

    EyesOTex:  SHOULD a "hair prosthetic" be in your future, might I (the newly self-appointed "expert" -- not!) suggest a WIG CAP. It is a soft thin cap that goes on under the wig. $2.  (Probably hotter than hell but def soft.) Other than June 9-12th, I'm doing the bald thang. I bought this wig because I'm going to DC to accept a slightly snooty award and some of the officials are follically challenged men. I'd hate to "outshine" them or risk having them think I'm poking fun. (I better make sure I don't drink. The opportunity to liven things up a bit is quite tempting...)

    Roxi:  Coffee-- me too! My beloved coffee habit has been reduced to a constipation remedy.

    DrCrisc:   The Wait. The Cramps. Aaaaargh.  I had a college roommate who collected empty jars and periodically, when life got too much for her, she would take a box of them out into the alley and heave them at a brick wall.  (Sweeping up afterward.) Just a suggestion, albeit not a very helpful one.  (I AM sorry.)

    Is it just me or does anyone else automatically feel the world is a kinder, better place whenever Otter posts?  (No pressure, Otter. Just know that you're missed.)

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  • robink
    robink Member Posts: 336
    edited May 2008

    Rock:  $40 for a wig?  no way...

    The wigs shops I've gone to are pricey.  I ordered a couple Paula Young wigs, just for fun.  Went to the American Cancer Society and they would have given me a wig but they were eithe too blonde, too long or to old lady like.

    Glad it worked out for you the way it it.

    Robin

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  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    A note on the scratched cornea thing that everyone could benefit from (well not the scratched cornea part).  If you have to go to a "regular" doctor or an urgent/emergency care facility, have someone go with you and have them go in first and let the staff know that you are a chemo patient.  This will get you seen immediately without having to wait in the main room with potential germ-city.  It saved me from having to sit for a 1 1/2 hour with the general public.

    Coffee - I'm still able to enjoy one cup.  But I did find that, since chemo, if I have a second cup...I get light headed. Cry  So for now...just the one cup, no matter how tempting.  And don't get me going on how a good glass of wine tasted....boohoo.

    ~Adrienne

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  • nmjohn
    nmjohn Member Posts: 7
    edited May 2008

    Hi everyone,

    I've been "lurking" and reading posts for a few weeks now . . . figure its time to introduce myself.  I was diagnosed, via annual mammogram, with my 2nd primary (left breast) on 3/15, fourteen years after my original diagnosis.  Based on the films,path report, etc my surgeon recommended a lumpectomy and radiation.  I elected to have a mastectomy (on 4/15), since I don't ever want to deal w/this again.  He took 6 nodes at the time of surgery - sentinal was clear, phew.  Then the full path report came back  - 3rd of 6 had 1mm cluster of cancer cells.  First, 2nd, 4th, 5th & 6th nodes were clear.  CT and bone scans were clear also. So, I'm having the first of four chemo treatments, cytoxan & taxotere, on Friday 5/16.  I'm not a newbie to chemo, last time I had ACF.  I've cut my hair, picked out a wig  . . .prepared in that regard, I guess.  Emotionally, I'm not so sure. . . I'm just so floored by all of this.  After 14 years, I really thought it was all behind me.  And the idea of chemo again - damn, it just sucks.  Like I have to tell all of you that, right?  So, enough complaining.  I got through it last time and I'll do it again.  I'm glad to have found this resource.  I hope we can help each other get through these next months (and well beyond!).  

    Thanks for being here.

    Nancy

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  • drcrisc
    drcrisc Member Posts: 836
    edited May 2008

    Rock - I have thought about that sometimes but am worried it might scare the kids!  And, yes, I miss Otter, too.  Sigh.

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

    Nancy, Damn but that is hard news. So much of what sustains me is my focus on "dealing with the here and now" and I shove the thought of the other shoe dropping down the road to the back of my mind (even though my age and prob BRCA status suggests recurrence is a possibility, if not a probability).

    But maybe there is comfort in these times in knowing that people we don't even know, who we may never even meet, care and are there for each other.  Including and especially you.

    (Be good to yourself.)

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  • collector
    collector Member Posts: 193
    edited May 2008

    My port insertion went fine and since it was early in the day I had the benefit of all those heavy duty drugs.  So after coming home I caught some naps which I definitely needed.  However, they all wore off around 6PM and I'm having a terrible weepy and hopeless feeling evening.  Also just figured out that it will be hard to sleep with port on left and still recovering lumpectomy site on right.  I sleep soundly only when on my stomach.  I ordered some bandanas today and made the appointment to have my wig styled even though I don't think I'll wear it.  It will be good for a donation at some point. 

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

    Hey, this is otter!  I'm baaaaack (from chemo camp)!

    rockthebald and Cristine, you are so sweet to say those things.  I think this discussion board has saved my sanity. (I concede that some people would argue whether I am sane, but I think I am and that's what counts.)

    I was reading a magazine today while waiting to see my onco, and it said there was a "cancer companions" support system available at my treatment center for their cancer patients.  Each patient (if he/she wished) was matched with a person who had the same type of cancer but was farther along in the recovery process.  There were no in-person visits; the options for communication were "telephone" and "e-mail".  Heck--I can find better support than that, right here on the BCO boards!

    Today was tx #3 of Taxotere/Cytoxan.  It was totally uneventful, except for the long wait to see my onco because the appts were backed up.  Everything was fine, though--blood work was excellent, scalp rash is gone, no signs of any bad stuff going on from the Taxotere.  So my onc sent me on to the infusion center.  She said to take Benadryl or Zyrtec if I developed a rash again, and be sure to call if I had any problems.  She is so upbeat and cheerful--I really can't help but be optimistic after I meet with her.

    So, my dh and I got home around 7:45 after the 2-hour drive, and I am tired but not sleepy (sounds like Decacron, doesn't it?).  I had a smoked turkey sandwich for lunch before my chemo, and saved half of it for later.  I snacked throughout the infusion, which lasted 2-1/2 hours; and my dh and I stopped on the way home and I had a chocolate malt.  My tummy is happy tonight, even if my mind is buzzing.  It is nearly 11:30 CDT, and I will probably fade out pretty soon and sleep despite the Decadron buzz.

    I hope everyone else's day went as well as mine.  Roxi, I get my Neulasta shot on the same day as my chemo, too.  It's the last thing they do before they let me leave.  The chemo nurses are so nice--they are careful to take the syringe out of the fridge and let it warm up; they said otherwise the shot stings a lot.  I've had 3 Neulasta shots and none has hurt at all.  (The aches and pains I get later are a different story, but tx #2 wasn't nearly as bad as tx #1 so I am hopeful this one will be even better.)

    The veins in my hand are holding up well. You can't even tell they've been used to infuse those nasty chemo drugs.  I asked the nurse today, how many of the infusion patients there have chemo ports or picc lines etc. ("vascular access devices") versus just using peripheral veins like me.  She said maybe 25 to 35% have vascular access devices, and the rest use veins.  She said it really depends on the doctors and the hospital--she worked somewhere else where almost everybody had a port or picc line.  About the only situation where they will want to put in a port would be if someone's veins are really, really bad.  Fortunately, mine aren't.  I think I'll make it one more time.

    nmjohn/Nancy, your situation really sucks. You should stop over at Traci's thread on the "Moving Beyond Cancer" topic.  She started one where we can just drop in and complain about something; and no one will pat you on the head and say, "Oh, hon, everything will be fine!" or "If you just think positive thoughts, it will all work out."  That isn't allowed.  Sometimes things are just bad, and we need to deal with it; but it helps to complain to women who understand.  Ironically, 'most everybody who posts there does it with such humor and tongue-in-cheek style, that it ends up being funny (sometimes not, of course).  Oh, and there is also a thread on this Chemo topic called, "Anyone Getting Just Taxotere and Cytoxan" (I think); it's very active and specific to that regimen.  That's where I hang out most of the time.

    I have still not bought a wig!  I've decided I like scarves, but some of my prettiest ones are silk and are too slippery.  Anybody know of a way to keep a slippery scarf from sliding around?  Ever use that sticky stuff they sell for keeping the neckline of a dress from moving around?  I'm wondering if something like that might work, but I also plan to finally make scarves from all the cotton fabric I bought last month.

    Oh my gosh, this is way too long!  Sorry.  Surely it's the Decadron.  :)

    Hugs to everyone...

    otter 

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  • drcrisc
    drcrisc Member Posts: 836
    edited May 2008

    Otter's baaack!!  Yaaay!!  (I sound like my 4 yo dd -Embarassed)

    Sound's like a looonngg, but o.k. day.  See?  We left the light on!

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

    Cristine, thanks!  I'm gonna turn out the light in my room now, and try to get some sleep.  I'll leave the yard light and the hall light on.

    Oh, I have to stop at Traci's thread first, to get my daily bitchy/sadness/humor fix. I see you're on PDT, so you still have a few hours to go.  I'll catch up tomorrow.

    otter

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  • craftygal
    craftygal Member Posts: 31
    edited May 2008

    Nancy,

    Sorry you had to come here but welcome!

    Where are your txs? My t/c's are at Gray Ctr. Lots of friends here but neighbors are great too. Maybe we can celebrate together when our txs are done!!

    Good day to all.

    Janice   

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

    Otter's home! Woo-hoo! 

    The Pate Chronicles (cont.)

    Robink:  Does Colorado Springs have kind of a "beatnik"/funky neighborhood? (i.e., maybe near Colorado College? Roswell? Stratmoor Hills?)  A wig place there will probably have cheaper wigs. And don't be unnerved by the piercings and pallor of the clerks.  If you tell them you have cancer, they'll most likely be really warm and helpful.  (My wig is fine.)

    drcris, re: thinking of the kids. This reminded me of a story one of my docs told me.  She asked whether I was going to get a wig and I responded with my usual 27-minute discourse ("Yeah, but ... blah blah blah.")  She paused, closed the door and then told me, "Listen, when my mom had cancer she thought it would be 'fun' to put butterfly tattoos all over her head.  To a child, however, these are very disturbing.  They didn't look like butterflies, they looked like skull fractures!  So think twice before you do anything too wacky."

    (Perhaps henna-ing the head is an option: www.chemochicks.com/bald_beatiful.htm)

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  • LorenaB
    LorenaB Member Posts: 937
    edited May 2008

    Otter and others -- I got a net under-wig cap thingy and I think it would work pretty well with a silky scarf.  Or you could use it to velcro the scarf on without actually having to stick velcro on your head!

    Oh, BTW, my hospital is pretty much the same re: veins vs. port.  I'm glad it worked out this way, since my hand veins held up pretty well through four tx.  I just needed a re-stick once.

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  • revkat
    revkat Member Posts: 763
    edited May 2008
    I started the first of April, but since we all like to follow otter around these boards Smile I dropped in here and wanted to offer this advice for those wanting to throw things (Christine, right?). I had some lovely friends who kept a box of those clay discs they use for trap shooting out by their back fence for just that purpose. Anyone in the family who was at their limit could go chuck them, and the best part? Because they're clay you don't have to sweep them up! I never tried it (I'm partial to throwing rolled up socks against the closet door) but it sounded like a good idea.
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