Starting Chemo May 2008

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  • sueper13
    sueper13 Member Posts: 1,224
    edited July 2008

    Okay, I'm back...rock. here's my face.  Thanks for askin'.  Love the poem.  Lots to catch up on here, but I have to work at 6 a.m. and am EXHAUSTED just from traveling today.  Don't remember who said it, Kristy I think, but I miss my privacy too.  Saw lots of family in TN, went over for a family reunion and I heard this too many times to count "You look beautiful"..I'm thinking, I must look really bad and they all feel sorry for me...add the chemo belly to the bald head and beautiful is NOT the first word that comes to mind.  Stayed with my Aunt Charlotte who nurtured me and pampered me and let me use her whirlpool bathtub every day...and made me home-grown tomato sandwiches and breakfast of biscuits and gravy and all good southern foods..it was really nice.  Gotta go get my clothes ready for work tomorrow and go to sleep in my own bed..I'll catch up tomorrow, but love you all.  Cheers and good wishes for an easy day for those doing chemo tomorrow--I'm going on Thursday.  Where are we going?  May I suggest the mountains in Montana where it is in the 60's instead of the 100's like it is here?

    Love,

    Sue 

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  • ellenoire
    ellenoire Member Posts: 674
    edited July 2008
    I am going to post this everywhere, so people can have a laugh. This is my creative thing for the night.

    ‘Twas the night before chemo and all through the house
    Not a creature was stirring not even a mouse
    The steroids I set by the bedside with care
    Praying that sleep might happen near there.

    The night before chemo I like things all clean
    From low energy ‘n-sore legs the house is a scene!
    The kitchen is messy, the laundry a heap
    When the steroids kick in, I'll clean and I'll sweep!

    Tomorrow is Taxol I think with a shudder,
    So glad that this drug is better than the others
    The nausea! The mouth sores! The headaches! Oh my!
    With Taxol I just need a wheelchair to get by

    My stomach is yucky, all tied up in knots
    I'll never get used to the pills and the shots
    The doctors, they mean well but what do they know?
    They should try it sometime, now that'd be some show!

    Here's sennacot and flax seeds and bran flakes for you
    I do hope this mixture will allow you to poo
    If not then drink water and go to bed in tears
    There're lots of chemo patients been doin' this for years!

    On barfyness, on tiredness, on painful fingernails
    No side effect can take the wind from my sails
    I'm bald and I'm fat, but what do I care?
    I look in the mirror and it's ME standing there

    This cancer it scares me but the end is in sight
    Treatment's soon over and all will be right
    I hope so, I pray so, I dream it will be
    ‘cause chemo is a nightmare I don't care to repeat!

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

    Nope, Sue, I"m pretty sure they said "you look beautiful" because -- if your avatar is any indication -- you look beautiful!  I'm so glad you're home.  A stream in the mountains of Montana works for me!

    Adrienne == my #s have been low and dropping, even with the Neulasta. And please refresh my (really bad, and I can't blame chemo) memory:  Did you get a shot and then proceeded with chemo the same day, or did you have to come back?

    Eddie --- Your gameboard metaphor is ON POINT. That's the way I felt way back in teh day when I was trying to get a follow up ultrasound and mamm. I could NOT get anybody to see me... Like I was stuck in jail in Monopoly, trying to roll doubles.   I hand it to you for remaining in what seem to be good spirits. But feel free to let it all hang out, too!  (We're tough. We can handle it!)  

    Back to indexing... I'm so very glad you guys are here. 

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  • familyroks
    familyroks Member Posts: 575
    edited July 2008

    Rock - The Neulasta is for the WBC...I don't think it would have any impact on your RBC (or maybe its HGB...I think that is the one)#'s...but what do I know?  The shot I got to boost my RBC/HGB was Aranesp and they did it right before they started my Taxol tx.  I think it takes 2 weeks to actually start doing its job.  I guess I'll find out tomorrow if its working.

    If yours are low, it would definitely zap you of your energy.  My Onc treats the low HGB as soon as it drops below 11.

    And yeah...Montana does sound heavenly.

    ~Adrienne

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited July 2008

    Ellenoire,

    What a great gift for us....love the poem. You are all so creative. Okay, I just might have to shave the rest of my pathetic head this week. It's been a cushion under the wig but you all so inspire me.

     Good luck in Montana! Here's to cool mountain breezes. 

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  • ewesterman
    ewesterman Member Posts: 417
    edited July 2008

    Sue,

    I was supposed to go with you but shingles snagged me. Montana would be beautiful. Save it for me  . . okay? No..go ahead. Go to White Fish. You'll love it. Good luck Thursday and you are beautiful but not because of chemo belly or baldness. You are just beautiful. You have a lovely smile and you are funny too. 

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  • ewesterman
    ewesterman Member Posts: 417
    edited July 2008

    Ellenoire,

    Great poem. Do you pronounce your name like Eleanor or is it Ellenwar? Inquiring minds want to know. I scratched one of those shingles. OWIEEE... 

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  • drcrisc
    drcrisc Member Posts: 836
    edited July 2008

    Rock - See?  I knew it...B-O-R-E-D.  "Does it hurt?" - Not anymore.  "Is it uncomfortable?" - Only if something hits it wrong.  And, yes, could I have a few more meds, please?  (Just jokin').  And the song is an Italian song (I know because...I happen to be Italian, well, half).  And I have a CD called "Italian Dinner Party Music" with it on there.  Why?  Because I turned 40 last year and we had an Italian-themed party!  The song is "Funicili Funicula" (be careful how you say it) and dad's family used to sing it all the time.  I think I may need to put it on...

    Gracie - Let's hear it for the Keflex club!  Woo-hoo!!

    Angels - So sorry about your (and Linda's!) Taxotere woes - I'm two txs behind you!  Cry

    Eddie - "LOSE a turn"!!  Yes!!  I know exactly what you mean - I felt that way the week my platelets were off and we had to "reschedule".  I pick up my counts tomorrow, so I'll know if it's a go before Thursday. 

    Sue - Never been to Montana, but I have a childhood friend who lives there.  Sounds perfectly lovely...and it's been in the upper 90's here, too.  And so happy to see your face again!  I know it's more than just you and me on Thursday, but I was bad this week and didn't get a list out.  I'll try next time. 

    Ellenoire - Marvelous poem!  Have you (or anyone) ever read the book "Alexander and the Terrible, Horrible, No Good, Very Bad Day"?  It is a children's book, but I used to read it in college.  Maybe sometime we can go to Austrailia (if you've read the book, you know what that means.  If you haven't, I'll explain later.).  Besides, it is very appropriate for chemo. 

    So, I changed my avatar, but it's so tiny you can't see them very well.  It's my 2 dd's and Mickey.  I haven't had time to figure out the Photobucket thing, and my dh is taking the computer in tomorrow for a "tune up".  I will try to check in tomorrow while I'm at work, but that's been kinda dicey lately.  So for those traveling to the bar tomorrow, in the Italian tradition, salud!

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  • SharonF
    SharonF Member Posts: 38
    edited July 2008

    Oh my gosh, I had to jump in here.  I have been so out of it this round, that I can only read a little at a time before heading back to the couch.  You all have been SOOO chatty the last few days!  Anyway, I think that Rock has found her niche with the charm bracelet thing!  I would buy all of those charms in a heartbeat and would have so much fun explaining them to anyone who asks!!!  I'm totally serious about that!  I couldn't quit laughing.  It would get more use than the pink ribbon bc umbrella that my family got me (it's the thought that counts, right)?  BTW, LOVED the May 2008 poem, too!

    I'm so sorry for what everyone's going through...conjunctivitis folliculitis, constipation, diarrhea, HFS, herpes, shingles, elephants, etc.  At least I've just got major fatigue and bone pain, so I won't complain (too much).

    Have a decent day. Love you all,

    Sharon

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  • SharonF
    SharonF Member Posts: 38
    edited July 2008

    I guess I need to figure out this avatar thingy and post a picture of my peach fuzz, I never did shave it all off, and what little's left there I'm keeping!  Roxi, do it with me, will ya?

    Sharon

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited July 2008

    Sue,

    Montana sounds good for Thursday- its the full monty chemo day for me so I will hang out in Montana for a while that day- at least it is treatment 5 and I can console myself that there is only one more!

    We took a regular pic- not a digital- I will try to get the dd to take a digital and get it posted- I look like a freaked out feline- never have lost all my hair so Im fuzzy. The pepper of the salt and pepper did fall out, the salt stuck around and started growing around tx 4, now the pepper is coming back so I have little tiny black hairs and longer white hairs - quite the site and I will try to get it online!

    I go for my blood donation and onc visit today in prep for chemo tomorrow! 

     Kristy 

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    Note to self..... next time I have drippy nose going on don't read any of Ellenoire's poems.... the snorting laugh makes for a mess to clean up afterwards.

     LOVED the poem btw!!!!

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    p.s. I've lost 16 pounds so far woooohoooooo!

    I told my doc out of all of this I wanted to lose some weight and my hair be thicker than it was before.... one down......

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2008

    Well, I am on day three after first Chemo.. DD A/C  .  Day 1 and two I felt like I was on speed .. today.. Slower.. I took sleeping pills last night and finally slept 12 hrs... I feel the nausea today.. today smells are not my friend... and one mouth sore..

    Waiting to see if I respond bad to the Neulasta shot I received yesterday...

    Hoping you all are doing on...

    Love and peace

    Laura

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

    Hi, Laura, hang in there . . . what do they have you on for nausea?  Consider calling your onc/nurse, describing what you're feeling, and perhaps they can adjust your meds.  I suffered through nausea my first round unnecessarily.  If what they have you on now isn't working, there are LOTS of alternatives. 

    For mouth sores, try rinsing with salt water.

    Linda

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  • Jeano77
    Jeano77 Member Posts: 237
    edited July 2008

    Rock & Adrienne:  Hope you are feeling okay after chemo today.  I should have received treatment today, but no rooms available so they bumped me to tomorrow.  It will be Taxol #1 for me - awaiting the arrival of the utter butter.  Rock, not sure why, but day 14 was always a big fatigue day for me during AC. 

    Eddie:  Get better soon, hoping we can get you back on track with us!

    Wishing everyone a wonderful day.  Jean

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited July 2008

    Laura,

    Hang in there- I didnt have any bad effects from Neulasta other than hospitalization the first round when I didnt get it! I had terrible bone aches Round 1 from taxotere but only mild aches since then which could be taxotere or neulasta- I walk a lot all during the 21 day cycle and that seems to help with the leg aches.

    Saw my onc today and thought I would get an answer to whether I will have rads after chemo- still not decided but she is going to research and talk to the Radiation oncologist- the wonderful intramammart gland discovered during my pathology and the fact that I didnt have the axillary node dissection makes it a rather complicated decision. Maybe by my next visit I will find out.

    MUGA results at 3 moth follow up were good-YIPPEE. My initial MUGA was 63% and this week was 62% so basiclaly the same and well above the threshhold for continuing with Herceptin.I was SO relieved to get those results.

    Doc said my hair should not be growing back yet- but it is and about 40% never fell out in the first place. The nurse assured me it was OK and that they had seen this before with TCH- most people lose it all but it is less harsh than the AC which is almost a guarantee of complete hair loss! I should buzz the long white hairs to match the shorter black hairs but Im not going to cut off any of my fuzz - I will just be a Texas peach for a while!

    They are going to try to retest my tumor tissue the ER receptor- mine came back 1% positive which is basically a negative BUT there is a question of whether I would want to go on tamoxifen given ANY positive receptors- she is going to try to get it retested in a very high quality lab since tamoxifen is 5 years and more possible side effects.

    When I asked my onc about plastic surgeon referrals I fully expected to get the "well they are all good doctors and highly competent" and was quite surprised and happy to get a single name without a moment of hesitation. I have another name from a friend who had a body lift so I have at least two to research and my breast surgeon said he would give me a name too! I opted for delayed recon and wont start until after chemo and after rads if that happens- but I would like to start researching and getting info now!

     OK its obvious IM on steroids today but I really got a lot of info at todays visits- OH and my hemoglobin, potassium are well within normal range and my ANC is 5700 (Thanks Neulasta)- I guess I can thank the dietary interventions for the potassium and hemoglobin since that is all I do and everyone told me it woudnt work- HA!

    Kristy 

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

    Sable -- 16 lbs? I have no idea what that must feel like! But if it makes you happy and you had it to spare, then I'm happy too.  16 lbs?!  SIXTEEN?!

    Laura -- first chemo is often the most worrisome because everything is so darned new.  When I had A/C on Wednesday, I often "crashed" on Sat and Sun and then rebounded and felt fine for the rest of the time.  Eating lots of fiber (fruit, oatmeal, nuts) and drinking lots of water will help stave off constipation if you're taking Emend.  Good luck!

     Jean -- I'm sure you know this but just want to throw it out there:  I was afraid of Taxol #1 but in reality, allergic reactions are not all that common.  And I have generally found Taxol much better than A/C.  I don't feel stoned on Taxol or drugged up or queasy.  Everybody's different, but given a choice, I prefer Taxol to A/C.

    Jeano and Co:  So Taxol #2 infusion was uneventful except that Dr. T. has decided to have me take Taxol every week for awhile given that my feet are kind of a mess.  She says they don't look like a Taxol mess but she wants to play it safe.  I'm not wild about the possibility of having to finish chemo later (I was supposed to be done Aug 8th) but it IS preferable to having to switch drugs or having my feet go crazy again.  Also, she's taking me off Neulasta just in case it is the source of the problem. 

    I was so bummed about the possibility of not being done "on schedule" but honest to God, I thought of Eddie and Cris and how well you guys have coped with your delays and it helped me get perspective.  As the onco nurse said, "Hey, you're still 'jetting.'" by which she meant "You are still able to continue with treatment."  And that's true.  How it must feel to be a woman who is told, "We're going to stop chemo because your body needs a break" or "No more chemo because it isn't doing any good at all..."  Yet we have met those women on these threads and they manage. They handle it with their characteristic grace.  So after a few sneaky tears in the library, I was fine. But I did think of you guys and it helped.

    My RBCs were low --  any suggestions for how I might bump 'em up??

    Adrienne -- are you taking a nap, perchance? (I just slept for 3 hours.) I hope it went well for you guys. 

    I gotta get back to work  
    Thanks guys! xoxox

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited July 2008

    Rock,

    I have been eating more red meat than I usually do and also adding dried beans- actually made a soup from beef stock, ground been, dried beans and a lot of veggies- its very iron rich and I usually eat it the week after chemo- made a huge batch before round 2 and froze it in little bowls. OK though short if having to cook, might find some good soup places and be able to buy some soups that would be iron rich. My exercise guy says walking helps the RBC also and I do walk a lot. Two Flintstone chewables a day- morning and night- and they have iron in them. People told me the diet stuff woudnt help but I havent been really low since Round 1 when I crashed on all my blood levels so I would disagree. I think I looked online to find a list of iron rich foods to see which ones I like the most and went from there!

    I wish I was nearby- I would cook for you!

    Kristy 

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  • ellenoire
    ellenoire Member Posts: 674
    edited July 2008

    Lots to say to everyone, i am just home after my last chemo and a greasy dinner( my craving, a stupid choice) and only about  3 hours sleep.

    I will write more later.

     Cheers y'all.

    Noelle

     P.S. My name is Noelle, my company name and internet handle is ellenoire-pronounced ell -e- nwar. 3 syllables technically . 

     Mix up the letters in my name and you get the first 6 letters of ellenoire. Loosely translated it means "she is black" in french which I am 'cause my daddy is. Go to www.ellenoire.com, to see me with hair, what I do and sell, and the company name with the proper french accents on it.  

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  • sueper13
    sueper13 Member Posts: 1,224
    edited July 2008

    Well, hello to all those who had chemo today and good wishes.  I am going tomorrow, and will enjoy the fifty-ish temperatures while looking off the back porch of a lodge with a view of the Grand Tetons of Montana (technically the biggest portion of them is in Wyoming, but you can definitely see them from Montana)...am now soliciting input as to what type of imaginary adult beverage I shall have in my hand during said mountain viewing...

    Rock, sorry you got news that made you cry in the library.  That makes me sad,  I wish I had been there to give you a hug and maybe even cry with you. I can definitely empathize, I am soooo focused on being finished with chemo three weeks from tomorrow that it would be very hard to adjust to a different date..but you're right about keeping it in perspective, and you did good.  Sorry too that you are still having feet issues. BTW, face in your avatar now, please....

    Off to eat dinner.

    Love you guys, and I missed you. 

    Love,

    Sue 

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  • familyroks
    familyroks Member Posts: 575
    edited July 2008

    Back after 5 hours at the Onc office and some errands afterwards.  Uneventful but good day.  Napped a bit during tx, from the Benadryl.  WBC are down a little but not enough to warrant any special treatment and the Onc doesn't think it will really drop much more before I finish treatment.  HGB stayed the same.  At least they didn't drop anymore...so that is good.  Got another shot of Aranesp to help that along.

    Rock, I'm sorry that your end date has to move.  I'm sure, like me, you have that date clearly marked.  But you're right...at least you're tx will continue and that is good news!  I was told, by my Onc, that there is nothing that YOU can do to boost your RBC.

    Jean - Taxol was SOOOOOOOOOOOOO much better for me!  I had some bone pain in my legs that lasted about two days, on days 4 & 5 following tx).  Were better if I was up and moving around and wasn't really bad enough for me to complain too much.  I didn't have any fatigue, no weird taste in my mouth, no fogginess, normal appetite.  Its been amazingly wonderful these last two weeks.  I sure hope today's tx and the next two follow this same path.

    For those heading to Montana tomorrow..............I hope you have uneventful days or if they are eventful, it hope its because it was a great day.

    Ellenoire - is that "last" treatment the very LAST on your schedule?!  If so....WOOHOO to you and congrats!

    ~Adrienne

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  • drcrisc
    drcrisc Member Posts: 836
    edited July 2008

    Kristy - See if your onc can get your pathology done at Vanderbilt.  They specialize in bc pathology.  And I like the iron-rich soup!

    Rock - I'm with Kristy.  My RBC's are/have been on the low side and I was able to bring them up with just red meat and broccoli in 2 days.  I ate it for 2 or 3 meals (along with other stuff).  In fact, they are slightly low today, so guess what I'm having for dinner?!  Other than that, my counts look good - WBC's good and platelets are up, so it's tx #3 for me tomorrow, too.  And so sorry, my friend, that you got bad news.  Anything that bumps us is difficult right now, even little ones.  But what did she mean by weekly and how will that help your feet?

    Noelle - Love the name thing!  Very cool...hope you're feeling well after tx.  And Adrienne and Rock, too. 

    Sue and Kristy - Okay, I'm ready to hit those Grand Tetons (I just like how that sounds - teehee).  My older dd is coming with me for a little while in the morning to see what happens to mom.  Then she's off to swim with her friends!  I think she'll be fascinated by the whole process. 

    I am computer-less at home now, so I don't know when I'll be able to check in again.  Hopefully, at least over the weekend.  Sending good thoughts to everyone...

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  • hunkydory
    hunkydory Member Posts: 1,241
    edited July 2008

    Sue, a suggestion comes to mind for your adult beverage.  The "Silver Bullet" aka Coors light fits well within your abilitly to almost taste the "Rockies"  While not a full bodied beer, but a lighter low calorie beer, a cold BOTTLE of it would certainly present nicely for the blood draw portion of your chemo.  Cheers, HunkyD  

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  • familyroks
    familyroks Member Posts: 575
    edited July 2008

    I wish that broccoli worked for me that way!  I eat it almost every night.  So much so that it should be growing ut of my ears!

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

    Did someone say Montana?

    Can I come, too?  I have some maps.

    otter 

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  • ranD
    ranD Member Posts: 373
    edited July 2008

    Otter Nice, you can come with me tomorrow and take pictures!

    Rock:  Know exactly how you feel, I had all my tx on the calendar and when they canceled last week's I cried because now I would be done on 9/11 (kinda symbolic) instead of 9/4, like the week really made that much difference....lol...but it p+ssed me off to have to cross out and move the next 5 treatments.  Sorry you have to wait longer, but maybe the SEs will be minimal and it will all work out.

    Kristy: YIPPEE as well!!!

    BTW, Had a beer yesterday and it sounded so good but tasted so nasty. I forced myself to finish it.......someone had to.......

    randie

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  • Jeano77
    Jeano77 Member Posts: 237
    edited July 2008

    Rock & Adrienne:  Thanks for the encouraging words about the first Taxol treatment, it really helped settle me before heading to bed. 

    Rock:  Like others, my RBC was falling with every appt and the onc stated that there was nothing I could do about it.  I simply added red meat to my diet between AC #3 and 4 and the RBC held steady.  I did the same again this last cycle, hoping they have held again but will not know until tomorrow.  Also sorry about the your end date being bumped, that is worthy of tears.  Glad you are holding strong knowing you are still flying (loved that the nurse stated it that way).  I just had a phone conversation with a friend who recently went through this (on January chemo boards).  Someone in her group was moved to Taxol on a weekly basis (feet issues) and had NO issues with hands/feet once moved to the weekly tx.  Shorter tx, less Taxol per tx, fewer side effects.  Thought I would pass that along.

    Sue:  I am up for a Coors with you tomorrow on the porch, great pictures Otter. 

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  • ranD
    ranD Member Posts: 373
    edited July 2008

    Oops, here is an honest to goodness praise....thanks to the skipped chemo, I had a ner-normal week of shuttling kids back and forth, making dinner and even takking them to the movies. 

    We went to see "Journey to the Center of the Earth"(took my 12 yo dd, 10 yo dd, her 11 yo fridn and my 5 yo ds, they loved it, couldn't stop talking about it) and now I want out next tx to be the grape-vined covered hills of Mt. Vesvius......we can sit outside, drink some vino, eat some fresh mozzerella, tomato and basil sandwiches, order some gelato during the infusions....anybody want to meet me there????

    Otter any pics of Italy????????

    getting my passport ready.....randie

    PS  3 weeks ago my RBC was 10.9, my onc said if it droped below 10, I was getting a shot. I spent the last 2 weeks eating red meat and lots of iron-rich Chex....remonds me to have a bowl right now....I will know my counts tomorrow when I see my onc, hope it worked.

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  • ellenoire
    ellenoire Member Posts: 674
    edited July 2008

    yes, that was my last tx. I was an April starter as I said, but seem to find solace here with the May girls. I start a year of Herceptin in August, I get almost a month with no docs or hospitals. I am happy to be done but it has not hit me yet. All week I have been feeling like I was getting ready to leave all my friends back at summer camp early for another place. I am glad to be finished with 'camp chemo'. I will be waiting for y'all in 'camp recovery' for as long as it takes.

    I am off to the tylenol with codeine bottle with the hope of a great night sleep. I plan to sleep and garden my way through the weekend. Y'all can come over an sit in the shade while I play in the dirt in my teeny tiny yard, behind my teeny tiny house, in my teeny tiny town. I will be thinking about Montana though. Those pics are amazing! 

     Rock, what part of NYC do you live in?

     Cheers, N

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