March 2012 chemo

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  • Buddhahead
    Buddhahead Member Posts: 66
    edited May 2012

    Indigo - no not yet but the MO keeps talking about xgeva. I'll talk to him Monday about the X-rays and the bone strengthener. I wonder if they want me to have the surgery before they start me on that. ?? He is recommending tamoxifen for a year.

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  • hopeful123
    hopeful123 Member Posts: 191
    edited May 2012

    I know we keep writing about how annoying it is when people don't understand what we are going through, but on the flip side I wanted to write about my past experience. My DS 's classmate's mom told me about four years ago that she had advanced colon cancer. I told the usual things of how sorry I was and that she should let me know if she needed any help. I used to see her drop him off everyday and assumed everything was fine until I heard one day from the school that she had died. I was so shocked and felt so bad that I hadn't done much. Her son was'nt close to my son, but still, I just assumed that people having cancer could be stabilized and stayed alive for many years. I think of her a lot these days and feel really bad. We all live in a bubble and assume things are fine until it hits us. Anyway I just wanted to get this off my chest.

    Lynn- I also had prophylatic BMX. No question in mind mind. When they told me I had grade 3 possible her2+ at the time of biopsy it was just DCIS but all indications being that there was most likely invasive I said take them both off. They even did even did multiple images and biopsy and told me the other was fine but I said no thank you I don't need it. Never once thought back. I just want this thing gone and hope to not have to see it again.......

    Hope you are able to take care of the back issues.



    Good luck to very one getting ready for Tx tomorrow.

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  • MichelleMassey
    MichelleMassey Member Posts: 213
    edited May 2012

    Hi all! Haven't been on much. My daughter came to stay for a couple of weeks since her man of 4 years broke up with her. Watching her with a broken heart seems worse than having cancer. I have my first weekly taxol tomorrow morning and am a little nervous. Hope everyone had a great weekend!

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  • Januaryice
    Januaryice Member Posts: 120
    edited May 2012

    Triplem- so sorry about your daughter. My mom always told me that a great mom always feels more hurt for their children. She as will you get though this hard time in your lives.

    I'll be thinking of you tomorrow. Please let me know how you make out. I start my first on Thursday and am also very nervious!

    Prayers that you will have no SE at all.

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  • Januaryice
    Januaryice Member Posts: 120
    edited May 2012

    Needless to say very nervious about starting Taxol on Thursday. Has anyone kept track of the average SE's that our group has had???? I know each of us will react differently but just curious.

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  • MichelleMassey
    MichelleMassey Member Posts: 213
    edited May 2012

    January-thank you and yes I will let you know. I remember how scared I was to start AC! It just seems like Taxol is really weird on the SE. Although everyone at my docs says its so much easier. Praying it's true!

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  • Sissydi
    Sissydi Member Posts: 516
    edited May 2012

    Tripem and Januaryice.....starting Taxol today! Sitting in chair now with my first Herceptin running! I too, am very nervous about the Taxol! After the A/C regime, I am a little battle shy! Had to take decadron at 9 and 3 am......needless to say, I didn't sleep a wink, I am fully expecting to be drooling when I get my Benadryl drip! It's interesting: my schedule today is Herceptin now, wait an hour, study drug, maybe, then wait an hour....Taxol for two hours, then wait an hour...I'm seeing that day one of Taxol is the long one.....sent hubby home since I'll be here 6 hours. So here we go!

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  • Buddhahead
    Buddhahead Member Posts: 66
    edited May 2012

    Best o f everything to you Sissy. I had TAC so can't single out which side effects were from what. I had taxotere. Hope all goes smoothly for you though.

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  • KCB
    KCB Member Posts: 365
    edited May 2012

    Hi Ladies: my next treatment (a week tomorrow)I'll be starting taxotere. I'm also nervous about starting a new drug; been reading up and found some very worrying SEs... Seems like maybe fewer severe long term concerns on Taxol, and I'm thinking about talking to my MO this week about considering a switch. Read that some women have experienced permanent hair loss on Taxotere. And permanent (or very long term) bone and muscle pain...so I am quietly freaking.

    Any thoughts?

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  • kltb04
    kltb04 Member Posts: 1,051
    edited May 2012

    I will post again when I can get caught up but I am soooooo relieved. MO says the lump is cartilage. And she has so overreacted to everything I have brought to her attention that the fact that she just said no big deal brings me immense relief.



    She also said from just looking at me that my posture is slightly off and that could be making matters worse. Said to stick with the anti inflammatories and get on the Celexa she prescribed last time. (I never did) and if I am not so anxious I would probably not be aware of it. Getting #4 of A/C now. Oh and she also said that by feel she thinks the lump itself is better but wants me to go to BS for a formal evaluation ( I assume u/s).



    More later.

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    Good morning ladies! It's day 4 after my first Taxol and I feel like I'm 90...ugh! The bone/joint/muscle pain caught up to me Saturday night. I spent yesterday mostly in bed. Got up long enough to make chocolate chip cookies with my 9 yr old son, because I had promised him we would and I absolutely REFUSE to let this stupid cancer stop me from doing things like that with my kids. And, since I'm not having any nausea with the Taxol, the cookies tasted sooo good. As a matter of fact, I'm thinking of changing my screen name to "livesfordessert" or something similar lol, since I CONSTANTLY crave sweets. And dairy, and I've never liked dairy. It's crazy. It's almost like I crave it just because I know I shouldn't eat it. Anyway, other than the pain, it was a pretty good weekend. I sang for a youth event Saturday afternoon (before the pain started). They had a silent auction too, to raise money for a mission trip, and apparently I was hungry when I was bidding. I put my name on several things just to help them out and left a check with a friend in case I won anything. Wound up with a $20 Logan's gift card, a $20 Chili's gift card, a $10 Gigi's Cupcakes gift card, a certificate for six free Gigi's Cupcakes, and four movie passes. So we'll eat, see movies, and have cupcakes. Sounds like a couple of good weekend outings to me.

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  • onvacation
    onvacation Member Posts: 1,344
    edited May 2012

    kltb - Oh so happy for you!  Glad it is ok!  Cancer makes us worry.  Now you can take a deep breath.

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    kltb: Happy for the cartilage diagnosis. My onc put me on Celexa too. I thought it wasn't helping so I let myself run out of it a couple of weeks ago - really bad idea. Apparently it was working lots better than I thought it was.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2012
    lanagraves - Have finished 2 DD Taxols.  The bone/muscle pain was horrible after first infusion...eve of day 3 to the worst of worst day 6.  After the second infusion, i just pushed the hydrocodone the first sign of pain. It helped tremendously.  Still had aches and that feeling like I ran a marathon the following week, but I was no longer in fetal position.
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  • MichelleMassey
    MichelleMassey Member Posts: 213
    edited May 2012

    1st day of Taxol sucked. Real weak, heart palpitations, and just felt nasty. Will let you guys know how today goes. So far I'm feeling okay. Oh yah, another thing I experienced yesterday was a nasty taste while it was infusing. Yuk!!!

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    With ya on the nasty taste during infusion, triplem. Today is Day 5 and the pain seems to be getting better finally. Still feel like a 90 year old trying to get up or sit down, and when I walk.

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  • Sissydi
    Sissydi Member Posts: 516
    edited May 2012

    Taxol infusion went well for me yesterday. The only time I had a horrible taste in my mouth was when they flushed my port with saline :(..... But today is day 2, and I'm feeling good! No digestive issues, this is much different for me than that horrible A/C. My onc nurse told me to expect some bone pain around day 3, and fatigue of course, and possibly a rash, but overall, the experience was so much better than my A/C infusions. Now I'm hoping to start seeing some fuzz appear on my head after about 3 weeks....got the magnifier out!

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    Sissydi: Me too on the fuzz. It's weird though. The chemo nurse told me Taxol causes hair loss and I see posts on here about it too; yet I know three ladies personally whose hair has started to grow back on Taxol. Anybody know what the deal is with that?

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  • fedfan
    fedfan Member Posts: 44
    edited May 2012

    Lanagraves: I know what you mean about the "90 year old." My day's 3, 4, 5 are the worst. The rest of the time is just a lot of fatigue and mild aches and pains. One thing I also get is a swollen throat and neck. Like my glands are swollen. I've never had toncilitis, but it seems to mimic those symptoms. It's hard to swallow, and I look like a bull frog. So I'm in pain and look funny too...great! A bald, red-faced bull frog! 

    I have two more Taxol treatments, and now that I know what to expect, I'm dreading the next two. Good luck to Lanagraves and everyone else facing Taxol Hell. 

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    I had some tonsil swelling and sore throat on the third and fourth day. Since this was my first Taxol, I just thought my allergies were acting up, but maybe it was related to the Taxol.

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  • onvacation
    onvacation Member Posts: 1,344
    edited May 2012

    I think my hair is growing a bit - and I am almost ready for #4 out of 6.  My stubble is not all stubble any more!  Trying not to get excited about it growing thinking it could just as easy fall out next treatment!  Not like I'm not still bald, but seeing growth made me happy!

    Hope everyone has a good day with minimal side effects!

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  • Sissydi
    Sissydi Member Posts: 516
    edited May 2012

    Most ladies I've read about have their hair start coming back on Taxol. I think the hair loss they might be referring to is eyebrow and eyelashes. My onc says I should start seeing some fuzz in another three weeks time!

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    I hope so...I absolutely hate these wigs and caps. I'm about to start going around bald and scaring everyone lol!

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2012

    Does the hair come back for those on weekly Taxol, or DD biweekly, or both?

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    I'm not sure. I hear conflicting reports about it. Some say you lose it; some say it starts to grow back. The 3 women I know that it began to grow back were doing 4 dose dense Taxol. I hope it's true that it will start to come back cuz I'm ready!

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  • kltb04
    kltb04 Member Posts: 1,051
    edited May 2012

    KCB - I had actually heard that taxotere was easier on the system than taxol - not as harsh.  I hadn't heard about the long term affects. I am getting taxotere x 4 starting my next go round in 3 weeks.

    RE: hair growth...I have heard on either of the "tax" drugs that hair growth starts up again but that lashes and brows go.  I dread the loss of my lashes.

    I came home and absolutely crashed yesterday after 4th A/C...today I woke up terribly nauseous but Compazine knocked it out.  Nuelasta today so I am expecting to be down again starting tomorrow afternoon.  Did some shopping with oldest DD for summer clothes and then home and made no bake cookies for end of year teacher gifts.   

    Speaking of Nuelasta, one of the chemo nurses told me today that you sometimes didn't get N with taxotere/taxol - are those of you getting taxol getting Nuelasta?

    Ok, that was short and sweet but I can't concentrate for anything today....

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  • lanagraves
    lanagraves Member Posts: 596
    edited May 2012

    I am still getting Neulasta with Taxol, and know several other ladies at my cancer center are as well. But I am getting dose dense Taxol, not weekly. I think the weekly ladies do not get Neulasta.

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  • Sissydi
    Sissydi Member Posts: 516
    edited May 2012

    True...I'm doing weekly Taxol, and was told if my counts get real low, I might need Nuepegon, but probably not.

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  • lostinmo
    lostinmo Member Posts: 922
    edited May 2012

    hello all

     It's been busy around here.  Friday I went shopping with an old friend who kids are the same age as my DS.  Her kids were going to her sisters for an end of the school bbq and invited mine along.  He took one look at the two teenager girls in the car and jumped in.  I am so NOT READY for this.  LOL  He ended us spending the whole weekend there hanging out with my friends son who is his age. Came home Sunday night and took off again last night to go camping with this boy and grandparents.  Actually I'm glad his getting to get away and have fun with kids his age and not worry about me.So with him gone I got to go through stuff and get rid of a lot of things we don't use or need.  Very productive weekend.

    I'm with everyone on the hair growth!  I'm sick of hats and scarves. If the hair on my head would grow I'd be soo happy, on the other hand my legs could stay bald forever and I wouldn't object.

    Start DDTaxol on Friday and I'm nervous.  For everyone that's already started keep us posted so we know what to expect. 

    Crap, was going to type something else, but I seem to have forgotten what it was.  Oh well.  Everyone have a great evening. 

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  • KCB
    KCB Member Posts: 365
    edited May 2012

    Re: neulasta, yes I am supposed to keep getting neulasta when

    I move to taxotere next week.

    Enjoying my feel-good week, except I seem to have the beginnings of a cold... Not surprising since both kids have had one recently. Still a little unfair to get a cold on my good week. If this blows up into something, can J still go ahead and do chemo next week?

    Weird SE for today: swollen and painful vein in my right arm, the arm they inject into. Went to see my MO today and she said it's just an inflammation, treat with icepacks and Tylenol. BUT,she Sadi if the inflammation hasn't subsided by next week she wants me tk get a a PICC and/or inject into be left arm. Now I was told pretty clearly never tk use that arm for anything: injections blood pressure needles... But she says as long as the arm isn't puffy at the moment it is safe to use. I am so sick and tired of hearing two totally opposing things from different experts... In this case, two that work literally next door to eachother! How am I supposed to know who to listen to...

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