January 2013 chemo group

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    Arggggh!!! I just wrote a post and lost it....have to start over....



    All my children are grown and left home (I have a grandson due May 24 joy joy joy) and my husband works long hours. I don't go out much because I don't want to risk catching any of those nasty germs that are flying around. So aside from this forum, text messaging and FB I don't have much human interaction. But I DO have three wonderful little doggies to cuddle with. They weigh 4 lbs, 9 lbs, and 13 lbs, so we all snuggle on the couch together under the blankets! They are a great comfort as I kill cancer.



    I have an unusual C in that it's slow growing (Ki67 score of 5%, which means that at the time of Tx only 5% of my cells are dividing and responsive to chemotherapy....which we all know works on rapidly dividing cells). It is weakly ER+ (10%) so only 10% will respond to hormone therapy. I had surgery without clean margins, and all my doctors acknowledge that there are probably cancer cells still in there. So I'm getting ALL the therapies... But knowing that there are some cells left that won't respond to any treatment has made me very depressed since this journey started.



    My acupuncturist has been working on building my immune system to deal with all the trauma my body has gone through. Last week I shared this with her. She suggested a Chinese herbal supplement called Bing De Ling. It was developed by Ruanjin Zhao, Ph.D, L.Ac., in conjunction with H. Lee Moffitt Cancer Center in Florida to strengthen the immune system, especially while folks are undergoing chemotherapy. It is also supposed to reduce SE's. I don't know about the SE's yet but since I'm bellying up to the bar this week I'll let you know..... I am sooo happy that I've found something to go after those unresponsive cells, and it's my own body!!! My own immune system will kick butt!!! Woo Hoo! For the first time I'm optimistic about this 😃. If anyone is interested, you can get more info at www.anfala.com.



    For those who want to drink green tea, there is some made without caffeine. I drink tons of it.



    And I've always loved Home by Philip Phillips, but now that I know the lyrics...it's my very favorite song ever. Thanks Sheryl 👍. I think we should vote it our song....🎶🎶🎶



    Thanks to all of you for your support, we are truly sisters and comrades in arms. I wish each of you a week of minimal SE's.

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  • honeybair
    honeybair Member Posts: 746
    edited January 2013

    Bryona, you are such a blessing to us as well.

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  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    Hello all! I have just been diagnosed with bc and I will be starting chemo this or next week. Still waiting for detailed test results and treatment plans. I am sooo scared...

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    Bcfree, you WILL be able to do this! You are now part of a wonderful group of women warriors who have a huge wealth of experience for you to draw on. The waiting for results and treatment plans was hardest for me. Once treatment started it was a relief because I knew I was doing something to kick butt.



    In a funny way I think I've gotten stronger as a result of this. I know now that I can handle a lot more than I ever thought I could. No more time for bulls...t in my life, I'm more direct, honest, and I'm letting go of things that make me unhappy, anxious or angry. No more putting myself last, or putting myself down, if something doesn't better my life, out it goes.



    We are WOMAN!

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  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    Watta, thank you so much for sharing your experience and the encouragement. I will be strong!

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Skimommi- My BS told me to have it removed. Now this was before surgery and before we knew I was going to have chemo. This was the advice going forward thinking it was surgery and Tamoxifen. There are threads on this board that point to the Mirena as a cause or a catalysts to BC. I don't have an opinion about it yet. I loved the ease and no periods. My OB/GYN thought I could still leave it in and be fine through all the treatment. I had it removed a few weeks before surgery. The information that I found made me question it enough to NOT leave it in. I was also in the scared shitless phase of cancer.  I plan on having my tubes tied when this is all done. I am finished with having babies. I may just have the whole factory removed, the Tamoxifen will throw me into menopause anyway... And now that I am in this chemo thing and then rads and tamoxifen, I def am looking for permanent sterilization.

    Bcfree- you can do this. It seems so scary when you are given the news of cancer and chemo. Just breathe. You can do this. We are all here as proof. All ages, backgrounds, diagnosis, treatment plans, etc... This is doable (stole that word from LeeA). Stay with us here on this board. LOTS of good advice and camaraderie.

    SherylB- LOVE LOVE that someone else is trying the pet roller thingy. LOL I giggle every time I use it. seems so weird to do it but it works. Laughing is good for you.

    Rainy and 40s here today. going up to 60s on Wednesday then back down to 20s on Thursday... This my friends is Rochester weather at its finest!!

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  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    Skigirl72, thank you for the encouragement! I also find the information here very helpful and people very supportive!

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

    Hi Ladies,

    I've been lurking in the background reading all the posts for the past few weeks.  This seems like such a great bunch of gals I had to join in!  

    I started my chemo on 1/10/2012 - Cytoxan/Taxotere x6.  This treatment is part of a clinical trial that is studying TAC vs TC.  My Onc recommended TAC x6 but he was very excited I got selected for the no adria arm.  I hope their theory is right because I'd really like to keep this experience to one go around :)

    Treatment #2 is this thursday (SherylB it looks like we are on the exact same treatment on the same days!).  Treatment #1 wasn't too bad.  I'm hoping #2 goes even smoother with the additional tricks in my bag.  My hair is gone and I'm desperately holding on to my eyebrows/lashes :))  I figure i have only a few more days with those fellas.  Oh well.  This too shall pass.

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  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    My oncologist just called to tell me that my PET/CT SCAN results are clean. What a relief! It is sooo hard for me to stay positive during the diagnosis stage.

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Great news bcfree! Did anyone else get sick to stomach before going for first chemo? Thinking its nerves.

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    Ladies!  I return from a weekend at the indoor waterpark in Niagara Falls Canada...sweet.  Its snow and freezing rain OUTSIDE and 35 degrees INSIDE...beautiful.  I sat my lazy ass in a lounge chair for 48 hours and read my book in the wonderful (though highly chlorinated) equatorial heat.  It was divine.  The kids (boys- 12 & 14) disappeared for hours on end and came back exhausted when they required food...it doesn't get much better than that.  And yet...there I am, still obsessing over my boob...or scar-spots in this case.  Eyeing up women in bikinis thinking to myself "Bitch...she doesn't have to deal with f-ing bc" at just about ever women i saw...young ones, old ones, big ones, skinny ones...no one was exempt from my healthy-breast-envy.  Literally sitting there thinking to myself what a cow i was being...yet somehow unable to stop myself...it was a hot, sweaty, pity-party.  Doesn't help that i had bonescans today (come on NEGATIVE) and MRI tomorrow (GO NEGATIVES) and i start to feel uber-nervous & upset before every stupid test i have to take.  I know i have to take the tests and i know its better to know than NOT to know but the stress of the tests is brutal.  Trying to put on my big-girl panties and butch up but all this testing seriously licks balls.

    On another note, felt much better reading through the pages i missed over the weekend (went technology-free...i am truly a Luddite at heart).  You guys rock.  I am so happy to be a small part of this thread- i have told my husband all about you...and how grateful i am to have you as support and friendship and inspiration and a sounding board and an agony aunt and a group of medical guinea-pigs who guinea'd up before i did...so i can ask you guys ANYTHING and chances are someone can help me/reassure me/commisserate with me or simply give me a hug...or a metaphorical smack upside the head if i need it.  Its a big relief- knowing i have a resource of women who understand...REALLY understand...what i'm talking about...or afraid of...or bitchy about.  Thanks.

    So here's hoping all my tests come back NEGATIVE (i have been accused of being negative my whole life...this attitude sure as s*** better pay off for me!!!) and that i can regain my equalibruim once i meet with the MO Wednesday for the first time.  I saw the surgeon at the hospital today and she went and told the MO to book me in NOW...she calls me The Princess and says i deserve everything...i love my surgeon.  So MO Wed and hopefully a full frontal (pun intended) plan of attack on those motherf****** cellular insurgents...kick the s*** out of them until they stop twitching!!!  And yes, I do kiss my mom with this mouth.  So i shall keep wishing on stars and dabbing on the holy water my mom has given me (can't hurt says my non-believing self) and we shall overcome.  Onwards and upwards ladies...bring on my crack monkey.  (May i have a crack-pug to keep my crack monkey company???)  Shannon

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  • AdrienneK
    AdrienneK Member Posts: 8
    edited January 2013

    Hi Colleen & all my Sisters

    I'm just getting started with Breastcancer.org --

    In 1992 I had a mastectomy for what I thought was precancer, because only the breast removed - no chemo or radiation.  Starting several years ago I complained of back ache, all the while getting a mammogram yearly.

    Nov '11 I was x-rayed, then an MRI, & was told I am Stage IV, triple neg, bone cancer!  What!  Ixempra was started last Jan. & I took it for 9 months. Very little side effects except for some neuropathy and the usual tiredness. Funnily - I assumed I'd lose my hair & had it all shaved off. I went to American Cancer Society & picked up a decent wig & many scarves & hats, which I wore last winter but my hair came in again -- curly curly & silver.  I'm almost used to the change!

     Last Sept. after a pet scan, my doc said the Ixempra had apparently stopped working because I now have slight fluid on the lining of one lung & a spot near my heart. I was afraid of Xeloda because of all the scary side effects. By now I have had 4 rounds of Xeloda - no skin problems, nausea or hair loss etc. I find I am happy to stay indoors. Not interested in exercising, even yoga which I did for years. Not much appetite, don't care if my leg hair stays or goes! I've had 3 blood transfusions - feel much better afterwards every time.

    If I weren't so tired I know I'd be outside at this moment!  People tell me how good I look. Maybe so.  I say I fake it alot!  I have a fantastic, loving, supportive husband and two great sons and I feel very blessed.  I know my oncologist is doing the best he can to keep me alive for as long as I'm allowed!

    Good luck to us all!  AdrienneK

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

    Welcome, bcfree2013, and great news regarding the scans!

    smethot - now I must do a google image search of this big Jurassic Park sounding place from whence* you've returned.  

    *English teachers - this is probably poor usage 

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

    AdrienneK - I'm so sorry you have to be here but wow, what a great attitude you have.  I've read your post three times now.  

    It sounds like the Xeloda is agreeing with you.  I don't know anything about that particular treatment but I recently read about one that's being used (in clinical trials, I think) for Stage IV survivors and doesn't cause hair loss and has minimal (?) side effects. 

    You've been fighting this one way or the other since 1992.  What a strong woman you are.  

    Thanks for being here with us. 

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    Fallsview Indoor Waterpark in Niagara Falls Canada, LeeA.  Highly recommended to anyone within driving distance.  ANYTHING that amuses the boys and allows them to entertain themselves for the day with no whinging is a-ok in my book.  :)

    On another note, i think Dr. Oz sucks.  Just got some bs e-mail in my inbox about how i can avoid breast cancer (specifically) by avoiding cigarette smoke, car exhaust, paints, glue, BPA and household cleaners.  Kinda chaps my ass, truth be told.  I've been the greenest freaking-shannon i can be since forever...i even wear sunscreen in the winter.  I use all natural products to clean (allergies), i eat healthy, i am a good weight and bmi, i exercise and i am nice to old people, my mom and puppy dogs.  F*** i rescue worms from puddles on rainy days.  Still got damned bc.  Not in a risk group.  Followed all the rules.  Am too young for this bc bs and STILL got it.  That stupid article is on the right track- i understand that- making people think about healthier choices and better options.  But in MY reality, that article seriously chews the root.  Why did i get bc, Dr Know-It-All Oz???  Huh?  Huh???  (Damn it i feel bitchy today...)  Rant over...

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

    Shannon, you crack me up! Have you checked out the thread called STFU (Shut the F*ck Up)? I think you would get a kick out of it. I'm sick of the worrying/wondering why some of us get it, what is the common thread and whether I turn left instead of right whether it will increase my chance for recurrence. Every morning I guilt myself when I have coffee with a little sugar thinking I'm diminishing this shitty chemo treatment.

    AdrienneK, bcfree2013 and julesDenver, Ciao Bellas! That is our little saying here that says we hate that you have to be here but are glad you found us. We have some sick sense of humor sometimes, but as some of the great attitudes on here will tell you, you must find some humor to endure it all.

    AdrienneK you are some fighter lady! Keep it up and look forward to hearing many good updates from you. Have you looked into imagery healing? The only reason I bring this up is because a co-worker just emailed me this morning about it. Her brother-in-law has a couple of types of cancer. One is very rare and the other no one can identify. They just met a man with a similar case and he is 5 years in remission and swears by it. Long story short, he imagined his 'c' as being an ice cube and the chemo melting it away.

    JulesDenver, is your name literal to your location? If so, we are neighbors. Would have been on the same treatment, TAC, but unlike you I didn't draw the lucky straw of missing out on the red devil.

    Well, Shannon has been able to have a little fun. Let's pick it up girls. Anyone else have plans aside from cocktail hour and nursing the hangover?

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  • teacherjulief
    teacherjulief Member Posts: 16
    edited January 2013

    Yes, Colleen.  I start Thursday and my stomach is a mess.  I do think it is nerves.

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  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    LeeA, skimommi, teacherjulief, just to want to say hello! It's very likely that I am going to start chemo this week. My oncologist wants me to meet him tomorrow to talk about treatment plan and then get me immediately started. I told him that I want to get prepared, but then he says: There is nothing to prepare. Your hair won't fall out in three weeks....... I take it as encouragement and hope I can manage chemo side effects well.

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Jules, Yes we are on the same schedule except I am getting TC x 4 since my nodes were negative and margins clear. I did have a Ki67 of 96 so have some real agressive little bugger cells. Yep my hair is about gone. Been using the lint roller today that skimommit suggested and it works great. Didn't want to use tape because I didn't want to pull the hair out of the follicle and get it inflamed.

    As for SEs I had horrible reaction to the Neulasta especially in my lower back but I think it was because I have a lot of degenerative changes with spinal stenosis etc etc..

    I am assuming because of your name you are in Denver?? If so just wanted to share that Colorado is my DH and my favorite place in the whole world. We  used to do a lot of camping around Buena Vista and Gunnison. Would like to go back someday but waiting until I lose the love of my life, our dog Angie. She is a pit bull and Colorado is not breed friendly. We got her when she was 8 weeks and now 10 and she is just a 90 lb lap dog. Never met a more loving animal. Not a bad breed at all just some people who have done really bad things to the dogs.

    hang tough we will get through this together all of us, Sheryl

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

    Bcfree good luck to you!  Let us know what kind of chemo you will be getting.  Perhaps some of us that have gone through it once or twice can offer some advice.  There are a few things i will do differently my second time around for sure.   For those of you that are interested....i will start to take my claritan before the nuelasta shot.  I will start the mouth rinse the day before chemo.  I will also try the EVOO this time around.  I will start the colace the day before chemo.  I will take my advil every 4-6 hours for the aches and pains.  And, I am definitely trying the lemon water.  If anyone is noticing a pattern here...i did not go shopping prior to chemo for the over the counter stuff.  I appreciate all the advice I got from this site.  

    Bcfree - I can say my first treatment was fairly uneventful.  It was like i was coming down with the flu for a few days.

    Skimommi - I am in the denver area.  We are just about neighbors!  I'm still not sure if i'm happy to be avoiding the adria or not.  It is a trial which i take as...they have a hypothesis.  I can only hope they are right at this point!

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

    Oh dear, so afraid I will "think" I've been drawing a good eyebrow (when/if the time comes -knock on wood the BJ works) only for people to really see me like this:

    If this is anyone's cousin or sister my apologies now. But good grief, let her know it ain't right!

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

    bcfree2013, what chemo regimen are you on?  I'm curious about the hair remark from your MO.  When I asked my MO about hair loss (and if there was the chance mine wouldn't fall out) he said "don't bet on it."  

    Re: the nothing to prepare part - my MO is a lot like that as well.  I think he likes to play it down but he also knows I'm OCD so there's that...

    SherylB, I've had some lower back discomfort with the Neulasta shot but wasn't sure if it was the Neulasta or me not being up and moving around as much since the day of the shot (this past Thursday).  The nurse who administered the shot mentioned long bone pain but where I've felt it most is in the lower back but it hasn't been unbearable - perhaps because I've taken Claritin?  I don't know.    


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

    Welcome JulesDenver!

    ____________________________________

    Dx 10/9/2012, IDC, 2cm, Stage IIb, Grade 3, 1/3 nodes, ER+/PR+, HER2+Surgery 11/07/2012 Mastectomy (Left); Prophylactic Mastectomy (Right)Surgery 11/07/2012 Reconstruction: Tissue expander placement (Both)Surgery 12/07/2012 Reconstruction: Tissue expander placement (Right)Targeted Therapy 12/12/2012 HerceptinChemotherapy 01/02/2013 carboplatin, Taxotere

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    Just wanted to say hello to the new ladies...



    In other news, I have no news, which is just what I need for a change! I'm very sore and tired. My throat is killing me from the breathing tube, so I'm taking spoonfuls of honey. Spent the day on the couch watching daytime tv (yikes) and telling the dogs to get off the couch. They laughed at me. I swear one said, oh yeah? Get up and make me. Ah, I love those mutts.

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  • russell33
    russell33 Member Posts: 48
    edited January 2013

    Hi ladies, I have a question for any of you.  I just realized I was suppose to take 2 steroid pills this morning and two tonight.  Well, anyways I did take it this morning but only one.  Just noticed when I took the 2nd dose that it was two pills.  Do you think this will be ok or should I call the on call doctor.  Chemo is tomorrow.  You all are so knowlege able I thought maybe someone may have done the same think and had a answer.  I realize this is  very important and i should check with doctor but just thought I would ask.  Thank you for your time. Anne

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Happy Monday everyone!  Wow, lots going on today.

    Mandy, I am so glad to hear you are back home and resting - you are so strong to get through what you did!

    Oliver, thanks for the reminder about protein - I really need to ramp it up again heading into tx 2 this week, and hoping it helps keep my hair growing and strong. Sorry to hear about your son, I hope he will feel better soon and heal quickly!  

    Shannon - your posts always cheer me up; I love your straightfoward messages and saying what we'd all like to :)  I, too am a fellow 'worm saver' when it rains, running around the driveway trying to return as many as I can to the dirt...so where are they to help me when I need it?  LOL  I also appreciate your experience with the other ladies at the waterpark...right before my surgery we went on vacation to Disney World and i was obsessed with looking at everyone's breasts and jealous of them...I kept thinking if this disease is so common, why am I the only one that has it?  For all I know some of them were looking at me and thinking the same thing!  Who knows why some of us do all we can to be healthy and still get BC...I just keep thinking maybe it is helping me get through it better or faster or something - has to be some payofff, right?  

    Welcome Adrienne and Jules and bcfree...sorry you have to be here, but it's a blessing to be among this group of incredible women and together we'll get through this!

    Colleen, I hope it goes well for you!  I am gearing up for tx2 on Thursday here we go again!

    Have a great evening all!

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    Skimommi, are you ok??? I see you deleted your post minutes after you posted it.......

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  • laurreg
    laurreg Member Posts: 5
    edited January 2013

    bcfree, I started chemo 11/30. Getting 4th treatment Thursday. I went for my appointment thinking was just planning and immediately started treatment. I am also a nurse so when the infusion nurse told me the MO does that on purpose I had some professional ethical.issues, but i am very glad it happened that way. He is right, really nothing to do to prepare. Good luck. For me hasnt been too bad. Have only missed half day of work on days i get chemo and no other days. I am a school nurse and have had low wbc but still ok to work. Needed neulasta once (that sucked), but after 2 days was good again . Also still workout at least 5days/wk. Not everyone has it so good but it is possible. i am getting cmf (old chemo but coming back into vogue), so not what is usually whats talked about here . One other suggestion...if you have a really good friend now.is time to.count on her. Cant imagine this without.

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

    Anne, I did the exact same thing as you. I didn't realize it until after chemo though, and by then knew my SE's were minimal so the nurses said it was no big deal. I'd let your MO know, but they probably won't have you do anything different. Just stay on top of taking other nausea meds just in case.

    watta, yes I'm ok. I'll repost. Started to edit, but then I got caught up with work. Oh Mondays!

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Do not feel too great. Think it is from all the steroids they pumped into me. If I got anti nausea meds in IV, how long before I can take a pill if needed?

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