Anyone Starting Chemo Jan. 2010?

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  • Emme
    Emme Member Posts: 205
    edited January 2010

    Hi ladies!

    I hope you doing mind if I joing this group...I post a some in the holiday chemo group but I didn't have my first treatment til 12/31.  I was diagnosed on 11/18, and thought I was going to be starting chemo the first week of December.  I then decided to enroll in a clinical trial.  That pushed everything back, and I had to have an additional biopsy for the study. I have to tell you all that whle I was waiting for my start date...I scared myself silly reading the postings...until I took a vacation from the site for a week or so.  I am back...and thankfully so. 

    I am having my chemo before and after surgery.  This first round I am haivng weekly taxol infusions, with daily oral tykerb.  I have had two infusions so far...and expect my hair will fall out ( or begin to) by the end of this week.  I too have gotten some cute turbans from tlc....I picked up a wig too.  I am not sure if the wig will work for me right now because I have a rash from the tykerb and it is painful...but that too shall subside....

    I wanted to share that Laurie Erikson from franceluxe.com offers a beautiful scarf or "it's a wrap"  for free, just for the asking, to anyone who has a medical hair loss.  These scarves and wraps are beautiful and made of silk.  I emailed Laurie last week...and she is sending me one.  It is called the good wishes program.  I am so excited, I can't wait for my wrap to arrive.  It takes about 4 weeks so don't wait to order.  She asked me to pass the information on to everyone when she emailed me back. 

    I am trying to think of anything else that I read here that might be helpful....OOHHHH  there is a list of things you might need for chemo...items to keep on hand ...that was very helpful.  especially the Biotene rinse and mouth paste...they keep your mouth moist, which reduces drymouth and tongue irritation.

    Bless all of you...

    Em

    Sooo,

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  • bbd
    bbd Member Posts: 53
    edited January 2010

    Chasinghope-

    Click on the name of the member you wish to send a private message. In the right corner of the individual's profile page, there is a tab to send a private message. Pretty easy.

    Barbara

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  • bbd
    bbd Member Posts: 53
    edited January 2010

    Issymom-

    Like you, I am having a hard time finding a wig that fights my big head. I didn't know that there was an option to make a wig out of my hair and have already cut my heart short. I have been to two shops but couldn't find any to fit. I ordered some from the TLC web site as they said the wigs were large. I have about 10 days before I will start losing my hair. I am starting to get anxious.

    Barbara

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  • pagowens
    pagowens Member Posts: 194
    edited January 2010

    Hi 11tyBillion,

    Good story!  Thanks for the laugh and the reminder that its always how you look at things, rather than the things themselves.

    I'm not too sure what my chemo drugs will be right now.  I got enrolled today in a Type 3 clinical trial (where you get an additional drug -- or not -- to your regularly scheduled therapy). I won't know if I am in the placebo group (20%), or the 24 week (8 rounds) group 40% or the extended therapy group (the remaining 40%) until week 21.  The drugs I was given information on are for my "regular" therapy are first 4 treatments:  Cytoxan, Decadron (steroid), Doxorubicin (Andriamycin)); and then 4 weeks Taxol plus I have Taxotere in there somewhere (not sure) plus either the placebo or the research drug (which I don't have current paperwork and so I can't remember the name except that it's been used in successfully stopping remission in colon cancer) throughout.  After all that, I do 6 weeks daily radiation (re the lumpectomy) and then oral hormone therapy (ER+ PR+)  for 5 years.  I do not get herceptin because I am HERS2 negative.  Because I was "accepted" into the research group, I'm not going for my first chemo tomorrow.  It's been pushed to next Tuesday.  So, I've had to rearrange my schedule again.

    I've learned we must be FLEXIBLE in this journey.  I can do that!

    Pat

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  • pagowens
    pagowens Member Posts: 194
    edited January 2010

    HI All,

    LOL I didn't mean stopping remission, I meant stopping recurrance.  Lord!

    Pat

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  • pastapesto
    pastapesto Member Posts: 42
    edited January 2010

    Count me in too.  Starting Taxotere and Cytoxan on Jan 28th, 4 cycles at 3-week intervals.  Not confirmed till I get my Oncotype result back, but the Oncologist said that's what it will probably be. 

    Good news:  my boss just asked for volunteers to work from home for the next 3 months!   If I can work at all, this will make it much easier!

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  • KAJDerby
    KAJDerby Member Posts: 310
    edited January 2010

    pastapesto - my dad lives in Minneapolis!  I grew up in Oakdale.

    I got my port today and in Japan they do not sedate you.  No problem.  It didn't bother me at all and the anesthesiologist had fun practicing his english.  He was only there in case there was a problem.  The worst part of the whole thing for me was getting the IV in.  I have terrible veins and I am always poked a minimum of 4 times!  Yeah for the port.  I also took someone's advice and drew my bra straps on my chest.  My doctor had never seen this, breast cancer is not real common here in Okinawa.  He was quite happy to work around it.

     I have a friend who is a recovery room nurse and she gave me some great advice.  After the port is put in, don't get your heart rate up, keeps the blood from circulating the anesthesia away.  When you get home, ice it.  Keeps the anasthesia in the tissue longer. 

    Now on to chemo next Wednesday!!

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  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited January 2010

    11tybillion:  I LOVE the story.  Boy did that put a smile on my face.  I'm sure I won't have that positive of an outlook, but it'll be a goal of mine to try.

    GraceOkinawa:  Glad your port went well.  I think I'll start next Wed. now too.  I'm still not sure what regimen I'll be on, but it looks like I might be sticking with ACT after all.  That means I'll just start 2 weeks later and finish 2 weeks later.  I'm so ready to start this thing.  It's making me crazy sitting around waiting.

    PastaPesto: I am hoping to work from home too.  I figure that will be a huge help when the kids are at school and I'm just feeling blah.  I can cover a lot of stuff in my pjs.  I wish we all had that much flexibility with work.

    Pagowens:  I hear you about having to be flexible.  I keep learning that lesson.  I just feel so much better when I feel like I've organized things and have some control.  But, that is just not how this process works.  I'm glad you got into the trial. 

    I received my "It's a Wrap" scarf yesterday in the mail and it is beautiful.  Not only that, but the card that came with it made me cry.  That company is amazing and I hope they get recognized for how sweet, generous and above all CARING they seem to be.  It felt like I received a big hug from a group of strangers in Washington state. 

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  • mslrg
    mslrg Member Posts: 293
    edited January 2010

    Hello Sisters! I'm new to this site, but have been diagnosed since September 11th--an ominous date! Anyway, I had a double mastetomy on Oct. 21 and had tissue expanders put in during that surgery. The saline shots for  the expanders have been BRUTAL!!! If I could so this all over again, I would seriously think twice about the reconstruction. The pain is relentless! I wanted to get a DIEP, but I'm too fat so the PS refused. I  began TC chemo X4 on Friday, Jan 8th, and had an allergic reation to the taxotere. I am weaktoday and in bed. My onc has decided to let me get an IV port inserted, so I'm scheduled for that procedure on the 25th. My next infusion is on the 29th.

    About me: Wife of a wonderful man, Bill, mom of 2 boys--one autistic. I'm an elementary school principal in California, and miss my work. I'm glad this site is here so I can share and learn with all of you. Tomorrow evening, I'm going to an informational meeting about the Susa G. Komen 3 day/60 mile walk in San Francisco in October. If I can do that, it'll be one big fat middle finger up in the face of cancer! Peace!

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  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited January 2010

    By the way, I mentioned that my best friend was in town to help me through the initial chemo treatments (which we're still waiting for).  She's a blogger and she posted this about France Luxe wraps today on her blog:

    http://thewordwire.com/2010/01/12/good-wishes-returned-heartfelt-thanks-to-france-luxe.aspx 

    Emme:  the scarf in the picture is like the one I received and it couldn't be easier to use or softer.  It's practically fool proof. 

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  • mslrg
    mslrg Member Posts: 293
    edited January 2010

    OK Ladies, question for you: When is the "Nadir"period supposed to set in? I feel like I was run over by a steam roller today! My energy is zero and I've been in bed all day long! I need to pick up insurance forms from my onco office, but there's no way I can get in my car and drive it. If I ever get a shower and change into a clean night gown today, that will be an accomplishment! I am so exhausted! The onco nurse asked me if I remebered how fatigued I was when I had newborns. She then told me to multiply that by 100 and chemo fatigue would be even worse than that. SHe is right!

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  • VegasDiva
    VegasDiva Member Posts: 109
    edited January 2010

    11tybillion - Loved the story. 

    mslrg - "What is the "Nadir"period?"   I felt like I had a lead blanket over me for 3.5 days after the first treatment.  I just laid on the couch watching tv.  The poor dog got like a 5 min walk.  I had a really stiff neck, aches and a little bone pain.  2 Advils cleared up the achey stuff.  Still very fatigued.  By the 5th day I felt fine and am just getting better each day.  A very slight metallic taste, but it is certainly not detering me from eating!  Wink 

    I went back to work the 12th day after treatment and was fine. I'm having anxiety attacks about my hair.  I'm expecting it to go at any minute.  The day that happens I'm sure I will have to work from home.  There is no way I would be able to face everyone after the immediate trauma.  I think I'll need a day to cry.

    I tried my wig on last night just to get ready and see if I can put it on and style it.  OMG, it was a horror show.  I felt like a freak and thought "what was I thinking when I bought this??!!???!"  I wonder if people will think I am a weirdo if I wear a hat to work with some bangs sticking out?

    I practically get nautious in the shower when I wash my hair.  I'm so afraid I am going to look down and see ALL my hair clogging the drain.  Does anyone else have these crazy thoughts?

    friscosmom - where did you go on your cruise?  I also had one scheduled for the week my doc wanted to do my surgery.  She let me put it off one week so I could go.  I got home on a Sunday night and went into the hospital Monday morning.  I will say it did keep my mind off it all week.  I went from NYC to San Juan on the Caribbean Princess.

    Any other cruisers out there??

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  • pagowens
    pagowens Member Posts: 194
    edited January 2010

    HI Vegas Diva,

    Your Nadir period is when your white blood cell counts drop to their lowest point.  Each of the materials given to me by my onc provided information on the Nadir.  Most of them showed a Nadir 10 days after the treatment.  She also explained to me that the Neulasta shots make the Nadir happen more quickly and shorter so that your window of potential infection is smaller and you blood cells recover more quickly.

    I have found that I have to look up lots of stuff because I don't yet speak fluent BC.  I sometimes struggle with the abbreviations on this website because I don't know what a lot of them mean.  For example, I've been struggling to figure out what my treatment is and have been listing all the drugs my onc gave me to look over.  Today I talked with the onc nurse and asked her to interpret.  Apparently I'm on the A/C (4 weeks) and Taxol (4 weeks) regimen I've seen written up many times.  I had no clue it was my treatment plan too.  More BC lingo.  The additional research drug that I will either get (or not if in the placebo group) is Avastin, which I've also seen in various postings.  I was going by the drug name "bevacizumab" - try to say that three times fast.  The saddest part is that I figure in a couple more months I'll be speaking/writing fluent BC-ese.  Not the language I'd have preferred learning.

    I also bought a wig and got my hair cut in the same style.  My hairdresser said that all wigs need to be tweaked and that she would shave me and tweak the wig to make it fit better and look better.  I'm counting on her to help make me look almost normal once I get to that point.  My new "do" has gotten lots of complements, so I'm hoping that the shock of going from long hair to a short bob is over by the time the new do falls out and I switch to the wig for work.  You should talk with a hairdresser about tweaking you wig to help you feel more comfortable in it.

    I've also been learning about all these new tests I've been subjected to , like the Mugga Scan - which tests the squeeze function of your heart.  I scored a 73 which the nurse told me was great and the other great news is that my sugar level is only 73, my CBC is fabulous and I'm a very healthy person --- except that I have cancer.  That's kinda surreal.

    I was supposed to start chemo today and now have to wait till next Tuesday.  I'm okay with that - gives me one more week for the stiches from the lumpectomy and port to heal and the bruises to fade. 

    I think I'm finally coming to grips with this stuff and accepting it.  I told the nurse today I'll be living with this cancer the rest of my life (hopefully long life).  I don't think I could have articulated that a week ago.  You have all helped me very much.  Thanks for being in this boat.

    Pat

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  • pagowens
    pagowens Member Posts: 194
    edited January 2010

    Georgiabirdgirl,

    What a great friend and what a warm and sincere blog.  I did send an email to the same company when I saw your post.  I'd love to have such a beautiful scarf!

    It's amazing what people do when they hear about the struggle.  My husband's aunt has a whole prayer group going in Texas (we live in New Jersey) for my health.  I got a call yesterday from from ex-husband's sister, who is a retired nurse.  She told me she'd be happy to come and provide nursing help or any other help when I need her.  Geez, I hadn't talked to her in a decade!  People's gestures and outreach are truly inspiring.

    Pat

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  • Issymom
    Issymom Member Posts: 264
    edited January 2010

    My first chemo this morning.  It went OK and I felt good enough to go out to lunch with my husband.  About 2 hours later I really started to feel crappy.  Nausea has set in and now the top of my tongue hurts.  I guess I was expecting the best and didn't get it but fortunately I don't have the worst of it.

    Cancer sucks and it sucks that I have to make myself sick to get better.

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  • chasinghope
    chasinghope Member Posts: 126
    edited July 2010
    Issymom, sorry to hear that the first session made you feel crappy. Next year this will be but a faint memory. We have to all hit this hard!!!! Make sure you tell your onc about your side effects so she can help you through it. Ativan has worked for me, takes the egde off, but I'm only 5 days out of my first chemo with AC. HANG IN THERE!!!!!  (((((((gentle hug)))))))
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  • alkum22
    alkum22 Member Posts: 8
    edited January 2010

    Well I survived my 1st treatment today. Felt tired, was able to eat some dinner, but now feeling the nausea setting in. Took a zofran & just waiting. I hate vomit. I am a nurse & that is my least favorite thing!  Had a hard time find a good vein, but finally sucess. I really don't want a port placed, but i guess I will if I have to. we'll see how round 2 goes.

    I also emailed Laurie about the free scaves & head wraps, her email was so wonderful.

    Thank you again for all the great support & information.

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  • bikerchick1
    bikerchick1 Member Posts: 10
    edited January 2010

    Please add me to the list! 

    I was diagnosed on Nov 9, 2009  with Stage 2, Grade 3, ER+/PR-, HER2 + and had a left mastectomy on Dec 4 with a tissue expander.  Was up and around and back to work part time 2 weeks later.  Looking back now the surgery and recovery was better than I thought - I'm hoping that chemo is the same but not holding my breath. 

    I start chemo on Jan 15, 2010 and am having A/C x 4 and T/H x 4 and then Herceptin x 13 - every 3 weeks.  I'm getting the first chemo through my arm and then having my port put in next Tuesday as they couldn't get me scheduled before Friday.  I'm in Canada and so very thankful for our health care system.  There's nothing I have to worry about - except having and fighting cancer :)

    I went out and bought a wig on the weekend in anticipation of my hair falling out - that I'm really not looking forward to but I guess it is part of the journey. Been reading the chemo tips and so appreciate those threads.  I have two grandsons that I want to live to see grow up so I gotta fight this hard!

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  • KAJDerby
    KAJDerby Member Posts: 310
    edited January 2010

    Vegasdiva - I loved our first and only cruise a couple of years ago.  Was planning to go after my surgery, but the pathology and the possibility of stage IV made my doctor's decision for chemo seem reasonable.  Planning to go next Summer!!!

    Had my port yesterday and was awake for the whole thing.  I was quite happy to do it that way.  "Happy Juice" makes me very sick, so I was happy to have a week where I don't have to throw up!  The post about port placement helped.  Also, somewhere maybe here, I read about marking your bra lines, which I did. Doctor chuckled as he had never seen that here in Okinawa.  He was happy to oblige me.  The nurse prepping me started washing the spot when the surgeon left and when he came back in there was some rapid Japanese going on.  He caught it in time and they were still able to see the marks.

    Next Wednesday starts my chemo and I have my chemo bag and supplies all prepared thanks to this web site!!!  It has been amazing.  What I haven't been able to find her, my MIL picked up in Florida and mailed to me!  Because of all the info here I have been able to do a lot of planning and preparing ahead of time.

    11tybillion - thank you for listing everyone.  It will make it easier. 

    Thank you to everyone who is posting their experiences!  It really helps!!

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  • cammy2
    cammy2 Member Posts: 42
    edited January 2010

    Thanks 11tybillion for the list- it really is helpful to compare experiences to chemo courses. Our treatments are almost identical although our dx are quite different. 

    Pageowens- Pat when you mentioned not being up on all the BC-ese - I kept reading all of these women saying they were TN - and I was thinking "wow - there sure is a lot of BC in Tennessee." DUH! And I can't even blame it on Chemo brain  - because I don't start until Friday!

    I am going to have my wig styled next week.  A great friend of mine who is one year out of her BC treatments gave me her wig - our color is very similar.  Style isn't great on me - but she gave me the A-OK to have it cut however I want.  It is a great help since my insurance won't cover one and hers did.  But even better than sharing her wig, she is sharing her stories and time! She is coming with me to my first Chemo.  What a blessing!

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  • KAJDerby
    KAJDerby Member Posts: 310
    edited January 2010

    cammy2 - I just received my wig from a friend who is 2 years out from chemo for bc.  So sweet of people to share.  As you, I have to have it styled for me.  I will be having the same treatment except I will have the herceptin added with the taxol.

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  • VegasDiva
    VegasDiva Member Posts: 109
    edited January 2010

    cammy2: I had to laugh when I read your post.  I'm not up on the BCese either and I thought the exact same thing - wow there is a lot of breat cancer in Tennessee!!  LOL

    pagowens:  the sad part is I did have my wig "tweaked" for me.  I am just sooooooo self conscious in it.  I'm hoping once I have to start wearing it I will just become used to it. From the back and sides it does look exactly like my hair, I just don't like it from the front.

    Anyone who is having nausea, please check with your doc.  That is the one thing I was terrified of and she promised me I wouldn't have any and luckily I didn't.  I took some pre-med the night before, had the decadron during, and took 2 more post-med the night of.

    georgiabirdgirl: the head scarf you picked out is my second choice that I emailed Laurie.  Thanks to those of you who posted the site.  I can't wait to get mine.  It looks like it will be so smooth and soft on your head.

    Stay strong my Sistas!

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  • ckm3ofhearts
    ckm3ofhearts Member Posts: 8
    edited January 2010

    Hey Jan sistas!  I had my first treatment on Monday the 11th of T/C. I felt okay that night with a little warmth and flushing in my face and torso from the steroid. Then a headache set in which is still here on day 3! I went for my Neulasta shot yesterday and they said the headache is probably from the anti nausea med before chemo and they will tweak it next time to try to eliminate that darned headache. I had some hip pain last night and weird taste in my mouth, but have been eating okay.

     I picked out a wig yesterday also, it will be ready for me to pick up next week. I'm not sure about all of this, but hopefully it will look okay. I went to the website with those beautiful scarves and I've heard from a couple of you all on here, that you emailed someone and ordered them? I called the 800 # and ordered mine. Is this the same? How long did it take for you to get yours? They look so beautiful, what a decision I had to make!

    This is my day 3 after chemo, I'm somehow waiting for a huge feeling of fatigue, but just speed cleaned my house once the kids just left for the bus. It's a weird feeling just "waiting" for something like that.

     Good luck to everyone this week.

    Oh, for the list. I started treatment on Jan 11th. 1st T/C of 4 doses. Then I'll do 5 yrs Tamoxifen. :)

    I had bilateral mastectomy on Dec 4th with 1st stage reconstruction with 2 fills so far. Where is everyone from? I'm in Iowa.

    ~Carolyn

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited January 2010

    You go, nkrun!! You sound amazing!!

    Ty, started one with my stats but everyone stayed over here. If you want to do it since everyone is over here that is totally fine! I already have my stats in the other roll call for STARTING JAN 2010. I was trying to think of a way to do a frown or smiling face for our good and bad days! Thanks for the offer.

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited January 2010

    ITA, georgiabird! All of the memembers signed mine. They are wonderful. Which one did you get? I got a pink/purply striped one. It is sooo silky!!

     WELCOME, Mslrg!!

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  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited January 2010

    mom2B- I got a beautiful green paisley one. I love it.

    I just did a head count and found that so far it looks like there are over 40 people in this forum starting chemo this month.  WOW!  I know we all have different diagnoses and regimens, but we're all fighting the same disease.  It's empowering to feel part of a group all digging in our heels and battling cancer together.

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  • 11tyBillion
    11tyBillion Member Posts: 96
    edited January 2010

    I got the beautiful paisley silk scarf as well!  Those scarves are gorgeous!  I need to get my behind together and put soething about FranceLuxe in my blog!

     I have a question ... I still feel as though i need a tablet or two a day of my compazine, and I am now 7-8 days out ... is this normal?  Once we got the sleep under control, I started feeling tons better, but the low grade nausea keeps creeping in...

    Thank you much for explaining the Nadir to me ... I think that was what I have been going through the past 2 days (days 5-6 were really harsh for me).

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2010

    Ms. LRG -- I would highly recommend participating in the 3-Day if you are up to it.  It is one of the most inspirational events.  I have been a walker and a training leader, so will be happy to answer any questions you have.  I credit the 3-Day with getting me back into treatment soon enough to hopefully give me a good chance at managing Stage IV.  I participate in the San Diego 3-Day which is in November.  I had started having some problems with my groin area in late Sept. and was walking more slowly.  The pain wasn't huge, but it was definitely causing problems with training.  Would've completely ignored it until after the holidays were it not for the upcoming 3-Day.  Mentioned it to my onc when I saw her in early Nov. and she ordered an MRI which showed a fractured pelvic bone and mets. 

    I don't know how much you know about the actual event, but there are vans/buses to transport people between locations if you are injured or having a problem. I needed to avail myself of the bus this year rather than walking the whole 60 miles.  However, that was inspiring itself.  I met women who participate year after year knowing that they can't walk the whole thing, but doing what they can. 

    VegasDiva -- I love to cruise.  My husband and I normally do at least one cruise a year.  Our most recent one was in October to Greece, Egypt, Israel, Turkey, Albania, Croatia and Italy.  We have one scheduled in May to the Canadian Maritimes and New England.

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  • gramoflexus
    gramoflexus Member Posts: 52
    edited January 2010

    I think i joined this group I started Chemo Jan 9th ac/  4 weeks then taxol 4 weeks . my guestiion is this , Is how you except the Chemo the first time any indication how you will feel on the other treatments ? I have been blessed not to have nausea but have had some days of very low energy . Changing into new clothes is a chore . Then days like yesterday I can say i felt a little more like myself.

    I'm not sure who posted about saline and her tissue expanders but you really need to talk to your doc . I have a tissue expander and will be starting the filling up next week . my doc said that it is his practice to take it slow  Like 50 cc He mentioned other than feeling a little pressure there should be no pain . I hate to hear your in pain. Fondly Linda

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  • leta17
    leta17 Member Posts: 120
    edited January 2010

    Hi, I am 41, a wife, parent of a 10 and 8 yr old, work outside the home, with no family history of breast or any other type of cancer and I was diagnosed with Breast Cancer in October of last year after I felt a tiny lump.  In November I had a lumpectomy removing a 1.4cm grade 1 tumor.  My Sentinal node at the time of surgury was negative, but then after further disection, it came back with a 1mm deposit.  So I headed back to surgery and they removed another 7 nodes all were negative.  My BRCA scores were all negative.  HER2-. and my OncoTypeDX was a 10.  I thought that my OncoTypeDX score was low enough to avoid Chemo, but after seeing 2 Oncologists they both recommended Chemo b/c of my age, the 1mm deposit on my node and b/c OncaTypeDX does not have a long history for node+ women.  I am waiting on my port date, likely Mon./Tues. next week and then I will start Chemo Wed./Thurs. next week.  I still need to decide and I have till Monday whether to do TAC or just TC....Leaning toward TC but many of the blogs out there say that this is given over 4 treatments and my dr. is saying 6??  So I need to ask them about this.  I picked out my wig and will get that in two weeks and have it further styled.

    This has been a roller coaster as all of you have experienced, and I am  freaking out over the port and posible side affects but hopefully the time will pass quickly!

     I wish you all the best on each of your different paths of treatment!

    Leta

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