Starting Chemo March 2015

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    BB- so glad of made it through #3- I know you've been terribly nervous and I think you're right. You are getting the hang of it.....AKA...YOU GOT THIS! So proud and happy for you

    I don't have much experience yet with chemo induced neuropathy.. I've had it in connection with other issues and what you describe sounds familiar. Ask your onc, they might be able to helpwith that.

    I hope you continue to feel only mild, if any SEs. Peaceful days coming up.

    Hugs,

    Katy

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  • Supernannymom
    Supernannymom Member Posts: 50
    edited March 2015

    rleepac - absolutely beautiful!!!

    I think the insurance and copays add up, I was telling my DH that maybe this year we should save the medical receipts as we will have enough to deduct next year! I picked up my prescriptions for my first round, 6 of them, and it was almost 100.00...and apparently I will need to pick them up every other week! Ouch.

    So...I will be starting my chemo on April 2...looks like I will be starting the April Chemo thread...I will be getting my port placed next week. They said it is an outpatient surgery and even though it can be used right away, I need to return 2 weeks later to have it checked. My MO said she is going to prescribe some numbing cream to for me use before the port is accessed, anyone familiar with it?

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    SC: I think you and I are a lot alike. I feel very uncomfortable with getting a lot of attention. Everyone gives me their contact info but I am SICK of talking about ME.

    PT: Hmmm… I will ask about the supplements. I just can't imagine Vit D being bad and I know I won't be out getting any this summer. :(

    AV: Thanks for the update! That's great news!

    Bekah: Bless your heart, Sweetie. God, I am so sorry you had to endure all of that. It sounds like you have an AMAZING family and a wonderful spirit. Also, not TMI and thank you for posting that. I wouldn't have been able to remember all of that now, much less after I start chemo. I hope you get a revised plan that is easier for you to handle.

    Super: I am with you. In a holding pattern.

    I am determined to get caught up with this thread.


    Port in Friday. Still don't have my start date yet because the MO doesn't have an opening til May 8. Asked for the nurse to call me back. Never got a call. I might have to go elsewhere. I am going to work on this today.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Supernannymom - I'm glad you finally got a date for chemo and getting your port in. Yes there is a cream they can write you for that has lydocaine and something else in it. You put a dollop on the area an hour before your chemo, and cover up the area with a square of Saran or press n seal before you start chemo each time. It will numb the area, and you can ask them for the freezing spray first.

    I was pretty tender in the area for a couple of weeks, and would advise anyone to get it done asap, so by the time you start chemo, it is not an issue for you.

    Even though you will start the April group, I hope you remember you have friends here too and come back to let us know how you are doing.

    Trvler- I'll be thinking of you Friday, nothing to be nervous about there, they will take good care of you.

    And I would be quite concerned about them not having room for you until May. It may be worth looking around for an alternative.im glad you're going to work on this today. You need to get this party started

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  • knmtwins
    knmtwins Member Posts: 598
    edited March 2015

    Hi ladies - my chemo was in July of 2015, so our board isn't as active as before, so I'm coming to you guys with a question. Oncotype test. Can they do it on your core biopsy, or can it only be done on samples collected from lumpectomy or mastectomy? I didn't get one as I was tops for ER+, PR+ and Her2/new+++, so I don't know, but a friend is going through this right now, so I'm curious.

    BTW - yes chemo sucks, but some do it better than others. For me the big secret was staying in front of constipation. I never fully got it under control, but if you can keep yourself from getting it, then (if you have diarrhea) side effect, that first bout isn't as horribly painful. Talk to your MOs about what you can do, and start it the night of chemo, as the anti nausea pre meds have constipation as a side effect. From someone on the other side, whose hair is growing back, you can do this!!!!!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Knmtwins- thanks for popping in to say hey, and give us all the encouragement we sure need now at the beginning of our treatments.

    I found the following article where it does suggest they have done Oncotype dx on core needle samples with 97% success rate. It is in the third section of this article. It's possible, however, that even though it is being studied (and this article is about 5 yrs old) it may not be in wide acceptance in clinical practice yet. It would possibly follow therefore, that insurance may not pay. I would call my insurance co. directly first. If they say they would pay, you could then make a convincing argument to the MO to order the test.investor.genomichealth.com/releasedetail.cfm?ReleaseID=430185

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  • knmtwins
    knmtwins Member Posts: 598
    edited March 2015

    Jackbirdie - thanks. My roommate from school has just been diagnosed, and I wanted to be informed, even on things I haven't done. She is still waiting on HER2 status, obviously that can be a game changer. Her doctor is rushing her surgery for next week, seems odd to me, I'd think you'd want BRCA back etc. But, I wanted it all done super fast, then found out HER2+++ so had to do chemo first, so was FORCED to slow down. Best thing for me, gave me more time to research, meet with doctors, ask questions. So, for you gals, that are yucked out, as I was, that you had to leave cancer in so you could do neo-adjuvant chemo... Guess what, I had a pathological complete response. No Cancer left when I had my surgery. Oh, and for you, you will probably have another 1 or 2 MRIs. They sometimes show the 'dead' cancer cells so don't be disapointed if it isn't shrinking as much as you want. I had my last MRI the day before my BMx and it showed about a 1cm mass still there, but no, nothing was there. YEA...

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited March 2015

    Hi - I am popping in - I've been reading your thread, I am headed for chemo, but probably not until April, but I wanted to get a sense of what the different treatments are, etc., and I have a question about your post Trvler. When you say you are going to NOLA for your surgery, do you mean New Orleans? I see you live in Illinois, so I'm so confused LOL - maybe I missed why go to Louisiana vs. somewhere nearby. Toulane? Or, it's an abbreviation for something completely different.

    Anyway, I saw that you arrived there a couple days ago, so I hope all is going well.

    I'll unlurk now Smile

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  • slothabouttown
    slothabouttown Member Posts: 449
    edited March 2015

    Princess M, I wanted to let you know that I've been eating everything in sight since my first chemo March 5th. Like you, I keep telling myself that tomorrow I might not feel like eating so I'd better carpe diem, right?

    Today at work I have a presentation before our board of directors. I was hoping to keep my hair till after that, and wouldn't you know the massive "shedding" started yesterday. I was laughing with my boss about getting to a particularly important point in my presentation and then maybe just pulling out a clump of hair for emphasis! I've never been a fan of public speaking but being afraid of your hair falling out in front of an audience lends a whole new dimension to stage fright!! I still haven't felt any tingling or weird sensations so I'm hoping to make it till noon then off I go to the barber for a buzz!

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    Supernannymom-- regarding insurance. Check with your insurance provider and see what your maximum deductible is for the year. Mine is $4,400. After you hit the deductible you don't need to pay any more out of pocket-- for anything (except prescriptions). This includes labs, co-pays, office visits, etc. I hit my deductible with my mastectomy. I just had to keep reminding them whenever I go for any appointments since I haven't been billed yet and it may or may not be on their computers yet.

    DH and I joke that we need to get everything done this year -- if I need a second mastectomy, removal of ovaries, etc. This way we don't pay for anything. If we wait until January, the deductible starts again at 4K again.

    Something to look into in terms of payment. For us, our medical bills will never amount to more than the standard deduction in our taxes. I think they do it on purpose.

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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    Princessmeh-I'm sending you a private message out of respect for your privacy. We are about 15 miles from the WVA line. My daughter worked as a whitewater raft guide and lived in Fayetteville for several seasons. She still loves to go back and do stories outdoor related for the magazine she works for. Are you familiar with the Secret Sandwich Society? Loved that name but I believe they sold and went to Charlottesville. Glad you have an appetite. I do as well but my tastebuds aren't working very well and I can't taste anything. I actually gained 5 lbs in three days! Called the MO and they said to just monitor if I'm able to pee ok.

    rleepac-We have a Charming Charlie near where I work so when I go back I can't run over at lunch. It looks really classy on you. I just found out my CIGNA POS plan cover nothing in terms of wigs. I bought one believing they would. Oh well...

    BB-sounds like some neuropathy? I already have small fiber neuropathy secondary to an autoimmune disease. When I told them at chemo they gave me hand and footie iced thingies. It wasn't comfortable but haven't had a flair up.

    agness-thanks for all the resources! One of my few side effects so far has been repeated hardcore sneezing. Maybe six times in a row I won't worry too much about that one!

    Italy-thanks for the link. I called the insurance this morning and they pay nothing even with an order which I have! I guess I'll wear more scarves. If I can figure out how to drag and post a pic with Windows 8, I'll get your attention if I look like a clown or not!?  I do not like W8!

    so she did-We started chemo on the same date. Just wondered how it went for you?

    shaz-I would love to be a part of that group! How inspiring and supportive. I've always heard Australia is a great place to live!

    I'm going to try to sneak out of the house and drive to Winchester to see what Sally's has. Called and they have different kinds of scarves. Worth checking out. Also wondered if anyone else has requested a free one from a website I found as a link on breastcancer.org  This lady gives away a scarf of your choosing and they are wonderful. It does take about 4 weeks for delivery and no charge for shipping. I think I found it through Breast Cancer freebies or something like that. They also have links for free retreats which really caught my interest! The only downside was locations. lots of places I'd like to go to but the cost of flying...I'd have to attend one in driving distance. Hope everyone's doing as good as can be expected. A cold front moved in over night and just when I was planning to put away the sweaters...

    Peace be with you all-Diane


     

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  • BeatIt2015
    BeatIt2015 Member Posts: 45
    edited March 2015

    Hi,

    I'm starting TC X 4 (every 3 weeks) on Tuesday March 24, 2015. Thank you for starting and contributing to this thread, it is so very helpful.

    Hope and Hugs,

    Carol


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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    There's a way to get private messages? LOL. I am totally clueless here. Honestly, I'm not even sure which email I used to sign up for this account. I'm going to bet not my professional one (I have information-control issues)...maybe check the other email then, see if anything's popped up. Y'know, I really wish I could blame this on chemo brain, but nope, fraid not. I genuinely am this much of an airhead. Oh well, I have peeps and any day with peeps in it is an inherent good.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    very good point SC! I hit my out of pocket last year (had some other health problems) and I received a free double mastectomy for Christmas. I have a feeling I'm headed that way this year with the copays alone on the chemo + Neulasta!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Welcome Beatit2015! Im sorry we meet this way, but you have found a wonderful group here. I started TC (six rounds, 3 weeks apart, plus Neulasta), on March 6th. It will help you, though it will take quite an investment of time, to read from the beginning of this thread. You will find lots of tips, useful information and an good idea of what the very broad range of reacations and side effects could possibly be, and how to prepare for them the best you can. I have found that having go-to plans and back up plans lowers my nervousness because I have thought everything through and can reassure myself I have done everything possible to prepare

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Shaz: That's awesome about your girls weekend. Thanks for sharing that.

    Generation3: Thank you for posting that. Facing it is so scary as I am sure you remembered. I loved the tip about keeping a symptom diary. I wrote that down so I don't forget about it.

    BB: I am going to be with you on the hating Tuesdays. I finally got my start date. This Tuesday.

    Prilosec: Is it over the counter or script only?

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    SC: DON'T feel guilty. I am HAPPY you are feeling great.

    Bekah: UGH for the MIL ride. (But I did laugh just a little. I hope that's ok. ) I am lucky, I don't see my MIL terribly often but she would drive me nuts too.

    Meme: I agree about knowing what to expect. I would be in for names and locations. We could start a private FB group. That's what the NOLA ladies have.

    Italy: I also vote wig2.

    Katy: I am sorry your insurance company is doing that. I hope you can get it worked out. The stress of that is certainly not needed. I hope you can get some rest. I know that is important to you being bipolar. My mom reacted badly to steroids.


    Bekah: I as so happy you are having a good day! I read your earlier post before I left and I have been thinking of you this morning.

    Princess: I apologize if you have said already but what type of books do you write?

    Bekah: You absolutely DO look beautiful!

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    KM: I am having neoadjuvant chemo. I don't know how to spell it yet and I am too lazy to look it up. :)

    Sloth: OMG. I can't even imagine worrying about my hair falling out in a speech. Sounds like you were up to the task.

    Beatl: You and I are going to be chemo sisters. We have the same start date. How many months are you going for? I will be 5. 3 months of AC and 2 months of weekly Taxol.

    Supernanny: I hope you hang around here with us but I understand if you want to join the April group.

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    I finally got the call. My start date is Tuesday. NOW I need to figure out what I need to do kid-wise to survive this. Getting EKG today.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Trvler- Prilosec is now available in generic OTC . It's called

    "omeprazole" most grocery store chains have a house brand that's a lot cheaper..,just look for omeprazole as the active ingredient.

    I'm surprised you are getting an EKG.

    Usually before they start chemo they do an echocardiogram. One, the ekg, is a fast test where they hook you up with painless electric nodes. In and out in ten minutes. They did that for me before surgery.

    The echo is an ultrasound based test ofthe heart and can take quite a bit longer. Up to an hour or more.Just wondrin'

    Katy

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    I could have sworn she said ekg.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    wouldn't be the first time I was wrong. I'm just always interested in the differences we all get in our treatment. And if course the docs are ALL surethey're right hah

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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    I'm a romance author.

    Trvlr -- you got this! Try not to worry and enjoy your weekend! We're close-- mine is 4 rounds (every 2 weeks) of AC, then 12 weekly T, 5 months total. I am also...uh...the word that means you get it before surgery, LOL.

    You know what? I've been so good about staying hydrated, I am going to reward myself with a cup of fully leaded. I CAN'T THINK WITHOUT MY COFFEE, THIS IS ABSURD.

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  • wpmoon
    wpmoon Member Posts: 270
    edited March 2015

    For the chemo angels, I just signed up online - filled out a survey about myself s/a things I liked - hobbies, favorite color, etc. I got a super sweet care package from one angel with lotion, antibacterial, socks, and a journal. Super sweet.

    Getting the tingly scalp feeling, so pretty sure my big shed is coming within the next few days (I'm using the cold caps, so wondering just HOW MUCH i'll lose). Infusion #2 is Monday 3/23.

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    wpmoon, my second infusion is Wednesday, March 25. I had to switch from Mondays to Wednesdays for work reasons. So I think we had our first infusions on the same day, March 2.

    My hair comes out, but only if I comb it or tug on it. Otherwise, it is happy to stay very loosely attached to my head (at the moment lol). I still have approximately 3/4ths of my hair. Nobody can tell anything yet. No shedding on my pillow, etc. Really weird. It is like it is barely connected to my body. Right now I am wearing my hair in a pony tail to work, and when it starts coming out more I am going to switch to a braid until I have bald patches. Yup, I am going kicking and screaming lol.

    Keeping fingers crossed that the cold caps allow you to keep most of your hair! Since I am er/pr negative, I was afraid to try them since my kind, if it does go metatastic, goes to soft tissue like the brain, and I couldn't find out anything definitive as to whether the cold caps impacted the chemo getting into the brain area. So sucked for me!

    Ok so far, unanimous for wig 2 in my hair color. Wish I had the guts to do the blonde! I tell my kids when I am an old lady I am going to go platinum blonde like Marilyn Monroe, wear bright red lipstick, and hopefully be an embarrassment to all of them lol! I had these three great aunts (Sicilian), and they died their hair, wore bright lipstick, jewelry, etc. until they died in their late 90s. I want to be one of them when I grow up!

    PrincessofMeh, I have been drinking coffee everyday, screw that. Nobody can tell me what caused the cancer, and half the crap I read online says caffeine bad, the other half says caffeine good. What's the deal with coffee? I've seen several people post about not drinking it.

    Diana, I bought a tlcdirect.org wig as a backup/beach wig, and it is pretty cute and super inexpensive.

    http://www.tlcdirect.org/Maggie-Wig-Hair-Loss-Prod...

    If the link doesn't show, the one I got is Maggie, and it is kind of a style/length that would be pretty flattering on almost any face type. Their wigs don't have the lace inset in the front, but they are still pretty nice.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    I simply could not do this without my coffee. Like someone else said here earlier in the thread, it's at least a 40 year love affair. Come to think of it, it's the longest relationship, (except for my living brothers) I've ever had!

    I look forward every morning to my coffee. I am still appreciating the taste, but it is a little off. No matter. I can't stand to be around myself without it.

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  • Meme117
    Meme117 Member Posts: 194
    edited March 2015

    Italychick I also liked wig 2. I have mine picked out but not ordered yet. Bought a hat and scarf today plus a big yellow striped bag to be my chemo bag. I will admit I am a bag lady😄 and probably could use one in the closet but thought its a special day on Monday and I want a special bag.

    I had the echocardiogram today, piece of cake. The nurse was great, she had chemo for lymphoma years back. She stressed staying hydrated. Two nurses called asking about my port and pain status, all good but feeling like it sticks out a bit much hopefully it will calm down. We've named him Bruce. When he's being good he's named after Batman, superhero fighting cancer but if he's being a bugger(like now) he's named after the shark in finding nemo. Icing has helped but still feels so awkward.

    I received a nice package today from the PA breast cancer org, has books, brochures, a hat, 2 little knitted scarves and a few other things, great surprise, I just signed up online.

    Here's the link for http://chemoangels.wix.com/chemo-angels-1

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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    The 30-year love affair with coffee was me, LOL. Nobody told me to give it up. I just know it's dehydrating and hydration during the first 48 hours of chemo is very important (as is going into a treatment fully hydrated) so...I really should've switched back to fully leaded a day or few ago, when I knew I was over the hump, but I was doing my stubborn mind-over-matter thing. Turns out, my mind REALLY wants that coffee. Hehe.

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    I LOVE COFFEE. In fact I'm sitting in bed with a latte right now! Andrew makes me one every morning in bed. I feel very spoilt.

    I had another migraine during the night :-( But I Good now.

    Can someone explain how your health system works? I just turn up and do whatever tests the Dr's want and sign a medicare form. I never see a bill.

    IC, you're very brave. I couldn't stand the thought of it falling out I hope if lasts for a while.

    Wpmoon what's sort of chance do you have for keeping or losing your hair? I really hope that it works for you.

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    trvler I'm glad you've got your date now it's horrible being in limbo.

    Welcome beatit. I'm sure you'll find this a good place to come. The first one is scary but the actually event isn't too bad. It's just the build up to the unknown. I'm having my 2nd infusion on Tuesday.

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