November 2014 Starting Chemo Crew

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  • Jumpship
    Jumpship Member Posts: 305
    edited December 2014

    I just spoke with a BC friend who had the TC regiment two years ago. 4 rounds. I'm doing 6 rounds with the Herceptin. Anyone else doing 4 rounds? I am barely making it through this round 1. It was not in the nodes. I can' imagine doing this 5 more times. I heard #2 is a (*(*)(*)(*.

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  • WheelyGirl
    WheelyGirl Member Posts: 181
    edited December 2014

    Starting Cytoxin/Taxotere regimen December 3rd had port placed on November 25th.  Have really bad itching at port site, anyone else experience this itching?  Any other tips to minimize side effects?  Would really love to miss as little work as possible.  Have ginger capsules as well as Claritin along with prescription drugs ready to go...Also any suggestions to keep scalp as healthy as possible to promote hair growth when treatments are finished.  I have already read some amazingly helpful information on these forums.  Thanks to all for sharing your experiences with others.

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited December 2014

    Minivan... I'm doing 4 rounds TC... No herceptin tho. .l really hate you're having a hard time. based on the side effect that's bothering you, i wonder if there's different meds they can give you to help you better. I remember my chemo nurse telling me that if something is really bothering me don't try to take it, let them know because they have things to help. She even gave me a 24 hr number to dial where someone is always available. Idk, it's worth a try. I hope you feel better and the next rounds are more tolerable.

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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    Minivan, it's probably due to the grade of your tumor and your HER2+ status. They try to be as aggressive as they can to prevent a recurrence

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited December 2014

    Erica i know a little how you feel. When my hair started falling out I was mortified. I had it cut real short prior to my first treatment - I think it was slightly less dramatic because of that, but couldn't stand it, especially in the shower. I never made it to seeing the bald spots - clumps were enough for me. I had my husband buzz it off yesterday and I feel SO much better. It looks crazy and feels strange but knowing it was all going to come out anyway, it was sort of liberating to just do away with it on mynowns terms. Good luck. It's not an easy SE we all have to deal with. And can completely relate to the "roller coaster" feeling. I imagine we all can.

    Michelle welcome and, I too, had a terrible headache after my treatment. Started around day 3 & lasted 3-4 days. A terrible tightness all the way down into my jaw. My Onco nurse suspects it could be the Zofran but I really don't know. I hope they can switch me to something else ... if they are certain it was the Zofran because I barely had any nausea so I don't want to mess with the regimine too much!

    Casey i like your response to all the wine talk. I asked my Onco and she asked if I drink it now (of course!) and she said then drink it (in moderation). To be honest, I had no interest in it until week 2, but taste buds were shot so I didn't bother. Once my taste came back (mid week 3) I have enjoyed a few glasses ... esp. on Thanksgiving. 😉

    Hydration, hydration, hydration. Working on my hydration today in prep for tomorrows Round 2 (and peeing every 5 min!! ugh!). GOOD LUCK to everyone else who has a treatment tomorrow. Whether it's your 1st, 2nd, middle or LAST infusion, YOU'VE GOT THIS! It's not easy. no one easked for this in life, but it is what it is, be thankful for modern medicine (however crazy it is, it's what we have and is much better thany anything from the past) and look to the future - no matter your circumstance. And if you don't have an awesome support system at home, reach out to local services (they are out there - contact Amer. Cancer Soc) and keep coming to these boards. I have been pleasently surprised how encouraging the wonderful women are on here. When I first came on, I thought all I'd hear about was the negatives and how grim everyone's story was. Pressing on ... staying hopeful


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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited December 2014

    Minivan i'm also on TC, 4 rounds, but no Herceptin. Our SE's will prob be different. I'm sorry it been so difficult for you!! Like Erica suggested, definately contact your Onco office. There are a lot of remedies and from what I keep hearing, no one should suffer (much) from SE's. I had a horrible headache (worst complaint - pain-wise) and although I never took anything (was too afarid to put more meds in my body) and suffered through,I'm hopeful my Onco will offer something to make things go more smoothly next time. Good luck and think positive.

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited December 2014

    ugh, frustrated ... why is it when I go back to edit my spelling mistakes, they don't take when I hit "save"?! And does anyone else have a terrible time posting on here from an ipad?? It's ridiculous. Grr. Least of my problems, I know .... ! 😉


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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited December 2014

    Hi Marcela~

    I too started chemo (again) in Nov. I was still on Herceptin HER2 infusions when it came back.

    Guess I better join the FB group too!

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited December 2014

    I am Lyn Kells on FB. I would like to join the new Nov chemo page. Thanks.

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  • MarcelaBR
    MarcelaBR Member Posts: 34
    edited December 2014

    I never stopped drinking during chemo, and have had no problems with it. I'm not giving advice or saying that it is the right thing or healthy thing to do. It is just my experience. I kept my doctors and nurses aware of my drinking so we all kept a closer look on my liver situation but there was never a red flag or anything. I enjoy wine and beer and was already giving up too much, so I tried to keep as many aspects of my previous live the same as before. Just had a lovely weekend on the beach (it's summer in Brazil right now!), barbecuing and having a beer by the pool! Just getting out of the city craziness made the SE more tolerable…highly recommended!

    Kimberli43 – After my first chemo I got so dehydrated that ALL I could think about was "I cant't believe I have to do this 5 more times", but you know what? After chemo 2 I felt better…we are very adaptable, we can get used to anything! So just KNOW that you are not alone and that not it only gets better, but it will eventually ends and in a year from now it will all seem like a dream!

    enlm20Erica – I am SO sorry for how you are feeling right now. The hair situation is just the worst. If I could give you a piece of advice, just shave it. Unfortunately there is nothing you can do to save your hair now, so don't torture yourself by watching it fall one by one. It will be sad, but it will be over, and I promise you'll feel so much better after. Thinking of you! ((HUGS))

    cc3373 – I guess no one is ready for the loss of hair…but I`m living proof that it grows back, I swear! And (for me) it is truly the worst part. Think about it… after we`ve done this…we can do ANYTHING…we went through the worse thing I can imagine, so now nothing is gonna be as challenging as that!

    VintageGal1111 – Oh it really saddens me that you have to be here. It is just not fair right? What chemo are you gonna have now? Just the taxotere? I see that you are also on perjeta now…it is supposed to have really great results! It sucks, there's no other way to put it…but soon it'll be over… for me it is 3 more months of chemo, one more surgery and that's it!

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited December 2014

    Marcela~

    thank you.....

    well the taxotere almost killed me, really bad reaction to the dose (every 3 weeks). We are starting back tomorrow to weekly taxol, with some misgivings since it obviously didn't work before?! And yes Herceptin & Pergeta.

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  • MarcelaBR
    MarcelaBR Member Posts: 34
    edited December 2014

    VintageGal1111 - wow really?? Sorry about that... Do you know if they even consider carboplatin with the taxotere/taxol?

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  • thatcameragirl
    thatcameragirl Member Posts: 16
    edited December 2014

    I'm a bit teary this morning after my hair started to shed a bit in the shower and while drying. I opted for a natural curly style today so I didn't have to brush it. Just feels so real now. My friend is ready to shave it for me as soon as I'm ready, just not sure when that will be. Really not wanting the trauma of the clumps. Guess I just need to psyche myself up for it. Easier said than done! Tomorrow is my second infusion. Just happy after that I'll be half done with my AC treatment! Trying to stay positive.

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  • Michelle49
    Michelle49 Member Posts: 18
    edited December 2014

    The irony of it all for is this, as a child I literally pulled my hair constantly for anxiety relief. I forget the medical term. I had long thick straight black hair though I would have bald patches at the top or back of my head and by high school I was wearing my hair up all the time to hide it. I successfully gave it up a couple of times through my adulthood. The size changed depending on the stage of my life and every year I would resolve to be strong enough to overcome the obsessive habit. I cut and trim my own hair because I couldn't go to the salon, too embarrassing. A couple of years ago I started to have better resolve and the patch was filling in, down to about an inch across. My hair had also been thinning from stress, poor diet and possibly premenopausal so the growth is much slower . But this past summer, I did it! No more bald patch! I kept my hair really long and started to enjoy letting it down, dreaming of a day soon when I can splurge on a luxurious salon visit and have it nicely cut and dyed to hide the gray. And now I may loose it all again. Maybe the feeling of loss won't be as bad or maybe worse because I've been waiting for this full head of hair for a very long time. What's another year of waiting, probably thicker and without gray!

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  • readytorock
    readytorock Member Posts: 199
    edited December 2014

    thatcameragirl - mine started to shed last Tuesday. By Thursday, I was ready to shave it. It was such a mess falling out everywhere and taking a shower was just gross with it all coming out. I didn't actually shave until Friday and was so relieved when I did! I shaved to about 1/2 inch and I was ok, but it still continues to fall and suspect I will be totally bald in a day or so.

    I just wanted to let you know how fast mine went if that is helpful. Best of luck to you!

    I am doing my 2nd tomorrow also and will be half way done as well!! Have a good week.

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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    Midlifecrisis, I also have trouble posting from my iPod. The screen freezes and half the time, I have to stop and start over. It works better from my home computer

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  • Redhead01
    Redhead01 Member Posts: 47
    edited December 2014

    Hey Girls....saw this tip and works for me, when you get down to the precious few remaining short hairs.... "brush" your head with a sueded lint remover (theyre usually red) ....not the sticky-gel rollers.  Feels nicer and helps relieve the itchies, plus trapping them.  Wearing a hat to work today.....OK for now, but don't know how MONTHS of this will feel. 

    My #2 T/C is Thursday....gearing up too with ginger tablets 2x/day now, and will super-hydrate beginning Wed (100 oz per day....)  Really seemed to keep the SE's very managable, and am more prepared for Neulasta too.  Bring it on....means half way done!

    Also.... am Ginny Creyer on Facebook......since we need an invite.  Thank you!

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  • cc3373
    cc3373 Member Posts: 100
    edited December 2014

    Marcella, thank you for your kind words, and affirmations, you're right, very true :) I am a bit rebellious, waiting to see if it all goes or thins and if I can work with what's left, I can never seem to follow the given path, but I may end up shaving too, you never know :)

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited December 2014

    First the boobs went, now the hair, next the ovaries and uterus (due to brca2) all my poor little woman parts just gone with the wind....smh. Never thought 32 would look like this but as long as I'm here to be a mother to my twins and a wife to my husband I'm okay with it all. It's devastating at times but like you all said a year from now we'll look back and say I Did That Like A Champ!

    Midlife and Marcela I can understand what you mean by wanting it to just be done... Every step until now with bmx surgery, expander fills, chemo I've just wanted to do it and get it done... so I can see myself feeling the same way about the hair loss. It's like the sooner and quicker we go from process to process the quicker we can get back to our lives, which I'm sure we all desperately want.

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  • cc3373
    cc3373 Member Posts: 100
    edited December 2014

    Erica, hugs, I am so sorry, but you can never lose your womanhood, those were only parts, you are the women, your beautiful soul is radiant, it cannot take that from you :)

    I understand, in that I just want it to be over, I wish it were different for you, you're just so young. Wish I could give you a real hug, but for now am sending a whole bunch xoxoxo

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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    Erica, have you been on the Young Survival Coalition website and Facing Our Risk? These are great resources for young women diagnosed with breast cancer

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  • crabbycamper
    crabbycamper Member Posts: 20
    edited December 2014

    Hi All--I start chemo this week. MidLifeCris---your GOOD LUCK and YOU'VE GOT THIS caught my eye and now I'm bawling. It's all good though. Can't say enough how much I admire the strength and courage of everyone here!! I am doing AC + taxol for an isolated chest wall recurrence. Was going to just do XRT/hormonal blockade, but decided this is my last chance at cure and at the last minute (had CT planning for XRT last week, supposed to start this week) emailed my MO and said I will take your advice and do "all of the above." Am beyond terrified of chemo.

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  • Shayne36
    Shayne36 Member Posts: 15
    edited December 2014

    any sore throat pain after treatment

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  • SLCSandy
    SLCSandy Member Posts: 5
    edited December 2014


    I am new to posting but have been following your stories all month.

    Shayne36 I had a sore throat and constant cough the first week and half after treatment. I tried to drink lots of water and keep hard candies near by. Cough drops were terrible tasting for me and seemed to dry my mouth out even more.

    Erica I hurt for you! But YOU ARE A CHAMP!! You are and will be an inspiration for others.

    I have my second treatment scheduled for Wednesday, but they had to draw more blood to check kidney numbers. Hopefully they are back to normal so I can stay on schedule. I want to keep moving forward. Thanks to everyone on here for sharing your experiences. They have been invaluable to me!




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  • Captswife
    Captswife Member Posts: 14
    edited December 2014

    Hi Erica, I was also diagnosed with BRCA2 mutation. I started with Taxol, 2 weeks ago. I have my second round on Wednesday. Expecting hair loss to start then. I had left mastectomy on 9/3 -they couldn't place the expander because I didn't have enough tissue left. I will have ovaries and right breast removed, after radiation therapy. I turn 41 on Saturday. I am married with 3 children 15, 13, and 9. I still feel like this is a bad dream.

    Is anyone here ILC?

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  • cc3373
    cc3373 Member Posts: 100
    edited December 2014

    hi Captswife

    I am ILC too...

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  • cc3373
    cc3373 Member Posts: 100
    edited December 2014

    Hi Crabbycamper,

    I was terrified of chemo, and I finally just wanted to get it done... Round 1 is behind me, (November 17th), round 2 is next Monday and am feeling like I want to run again because I'm feeling better again ;)

    BUT it was not that bad, fatigue and nausea first few days, then they eased up...The fear was bigger than the reality thankfully!

    Not sure which day this week, but thinking of you and keeping you in prayer that all goes well let us know how you do :)

    Chris

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  • cc3373
    cc3373 Member Posts: 100
    edited December 2014

    Hi SLCSandy

    Hoping your numbers are all good so you can stay on schedule, me I'm hoping mine buy me another week off chemo ;) and I'll keep you in my prayers too!

    Chris

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited December 2014

    Chris you're right, they're all just parts that I can obviously live without (literally) : ) God has it all worked out so I know i shouldn't worry. Hugs to you my friend and I hope you're doing over there!

    Leslie, no I haven't been on the site but I will definitely check it out... Thanks

    Sandy, thanks so much I really appreciate the support

    Captswife, I'm sorry to hear that u too have the brca gene really does make a bad situation worse..but we can be grateful for the kids we have (I have 17 month old boy/girl twins) if this disease would have found us earlier having kids wouldn't have been possible... thru this whole thing I have my moments of grief but I also have moments of finding the silver lining and being ok with where my life is. U have to find good in bad to deal with what we all are going through. I wish you the best on your Upcoming surgeries..As far as the Expanders will you still be able to get them after some time, or are they not an option.

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  • TallyLassie
    TallyLassie Member Posts: 56
    edited December 2014

    Hi all: Been off for a few days with my second treatment yesterday. Today I shaved my head--three weeks and one day after the first chemo treatment (BTW, I have 6 rounds with C/T, Herceptin and Perjeta, two down, 4 to go). It felt right after all the fallout.

    Finally, Astarte brought up MJ! One week before my treatment started, Florida voters approved a medical marijuana initiative by 58%. Unfortunately, it took 60% for it to pass. Geez. I live in the state capital, and am dreaming of testifying in favor of a medMJ bill this spring with my bald head! It doesn't really matter to me, as I have some and it makes such a difference in tolerating the nausea. I wish that others could get it. You might be surprised at who you know out there does. My husband made me some brownies since my throat gets sore from the treatments. How I wish I could pop down to a store in Colorado and try some different strains and edibles!

    Hang in there, friends. You are all inspiring to me.

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