October 2013 Chemotherapy

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  • TeamKim
    TeamKim Member Posts: 568
    edited October 2013


    Gia444, Heathcliff & Flowergirl, welcome to the club! If we ca answer any questions for you, just ask, and know that we are all in this together, which makes it just a smidge easier. Heathcliff, glad your first treatment was relatively uneventful. What chemo regimen are you on?


    Relocated -- channelling the positive thoughts for you, welcome to the thread.


    Travelmom, glad day 1 went OK. Sounds like there was drama in the other room, but I hope it didn't upset your calm. Wish I could request a private room, but my infusion will be in the infusion center at the back of my MO's office -- six recliners and a nurses station -- color coded poles for hanging the cocktails. No massage, no view, bring your own blanket and Popsicles! I will just close my eyes and imagine I am at Vintagegal's infusion center!


    Wren, I know you are wanting to get started and the wait has been frustrating. Here's hoping the healing is on track and the new schedule holds up.


    I have been thinking of all of the Wednesday girls today -- sending calm, soothing vibes your way! Hope you all are OK....

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  • gia444
    gia444 Member Posts: 68
    edited October 2013


    Wren, No it was not from complications, just how it was set up. Tomorrow I go for a Muga Scan to make sure my heart can handle the chemo.


    Thank you TeamKim for the welcome. Everyone is so helpful and I have learnt a lot in what to expect.

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  • heathcliff4
    heathcliff4 Member Posts: 10
    edited October 2013


    Hi Teamkim,


    I will be doing 4rounds of AC and 12 weeks of TH, followed by 9 monthly infusions of Herceptin. I will say, I am having back pain from the Neulasta. Wondering if anyone else has and if they have tried Claratin or Benedryl?

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  • SuckitBC
    SuckitBC Member Posts: 34
    edited October 2013


    Check in from another Wednesday girl. I was feeling pretty good until I woke up an hour ago from a nap. Stomach is a bit queasy, I feel very stoned and I have a slight headache. I was given Emend and Aloxi in my infusion and MO said to take Zofram with dinner (6:30) which I did. My prescription bottle says take it every 8 hrs. Is it crazy for me to wake up & take it at the 8 hour mark at 2:30am? And do you guys take it right at 8hrs or sooner? I'm really trying to avoid nausea here!


    Also, I just wanted to throw this out there. I will be taking Claritin tom. morning before my afternoon Neulasta. There were some women getting their transfusions next to me today that had never heard of that and were debating whether to take it. I have a family friend who is a head Oncologist @ Sloan Kettering in NYC and he felt very strongly about patients taking it for the Neulasta bone pain. Since Claritin is very benign, I think it's worth it to try it, but of course that's just my opinion.


    Thanks in advance for your thoughts!

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  • lgkgde13
    lgkgde13 Member Posts: 164
    edited October 2013


    Just words of encouragement for those that just started or are starting. I am 7 days post treatment 1 of AC and feeling great this week. Last week was very fatigued til sun but what a difference on Monday and on! It is giving me strength to take on 2 next week. My kids (7 and 8) are keeping me busy :).


    I feel like my old self :)

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    Thank you so much for bringing your experiences here. It doesn't sound too bad so far and makes such a huge difference for those of us not starting yet. I hope it continues to go well for you.


    Sleep well Wed girls and everyone else. xo

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  • flowergirl1
    flowergirl1 Member Posts: 54
    edited October 2013


    Thanks everyone for being so kind and supportive. My husband took me out to eat at my favorite restuarant for supper tonight.


    Travlmom...I live in Starkville, MS. Where did you live?


    Crystal

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited October 2013


    Thank you. Chemo went well on Tuesday, neulasta shot yesterday. When my MO asked about the last shot & bone pain I told her about the Claritan. she'd never heard of using it. She said she was going to look that up! LOL


    Today just some hair shedding & face flushing. Knocking of wood that side effects don't get worse, so far so good & the two bad days last time were the germs I caught from family & NOT side effects.


    Hope you Wednesday gals are ok today.

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited October 2013


    I am taking the Calritan, can't hurt. (LOL pun)


    Though my MO had never heard of it to help the bone pain from the shot. She was fine with me taking it & said she'd look it up. I told her to come here! You all are a wealth of info!

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited October 2013


    We have the same treatment schedule. Try the Claritan, I have had no bone pain issues so I'm all for it!

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  • Bellyboo
    Bellyboo Member Posts: 5
    edited October 2013


    Another Wednesday girl reporting in: infusion went well; no immediate SE's. I did notice at dinner that I had a hard time swallowing. If I kept the food/liquid in my mouth for 2-3 seconds then swallowed it was ok, but trying to swallow as i was drinking was hard. Anyone else experience this?


    Heathcliff4- I take Claritin 24 hours before my Nulasta shot and for 3 days following it. Seems to work for me.


    I was given a few suggestions that might help some of you so I am passing them on. There is a web site


    http://www.brianjosephs.com that sells a moisturizing shampoo for hair loss. I use it every other time I shower at the beginning and let it sit on my scalp until I am done washing so I get all the moisturizing possible.


    I also bought the eyebrow/eyelash gel. The reviews were great. I started it the night before my first infusion and use it every night since. Directions say to use it 60 days past your treatment for maximum results.


    I was told to use Udderly Smooth with Urea for dry skin. You can purchase this at drugstore.com. I went to several pharmacy's and they do sell the udderly smooth but not with urea. I use it twice a day and so far no dry skin.


    Hope these suggestions help. I know they work form me.


    Thank you everyone who sent positive thoughts to the Wednesday girls. I do believe i felt them!! :)

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  • oconnor2450
    oconnor2450 Member Posts: 58
    edited October 2013


    Hi, reporting here on the any SE's from new treatment; Perjeta, Herceptin & Abraxane, 1st treatment last Friday. No pre-meds. They gave me some benedryl in the Herceptin infusion.


    Was a little foggy, with a headache& few body aches, like a mild flu and tired on Saturday, but not bad enough to keep me home, I walked downtown to the Farmer's Market. Not much appetite but eating stuff anyway. By Sunday night I felt like myself pre chemo, so of course I thought I was and.....went to a crazy yoga class on Tuesday, then ran 3 miles, cleaned the house , ran kids around, same deal on Wednesday.....Well, of course by Wednesday night I crashed big time...my body was so tired and that made me very anxious, I mean I had a full blown anxiety attack ( no one knew because I was alone in my room, cept the poor dog) LESSON: Just baby yourself, if you feel great, feel great and go for a little walk, read a nice book etc... I dont know, everyone is so different, I somehow thought, hey, this isnt bad, I can go like I usually do, gangbusters...uh...not so fast. Anyway, very little nausea, just tired.


    Next infusion tomorrow, just the 30 minute Abraxane. ( Perjeta & Herceptin ev 21 days)


    Hang in there everyone! xoxo

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited October 2013


    What eyebrow/eyelash gel do you guys use? I don't want to lose my eyebrows. I go for my port on Monday and start on 10/24. I'm 12 weeks past surgery starting. I'm not as freaked about it as the oncologist office seems to be. It was a fluke I had my mammogram in June instead of Oct anyway...so I feel like I'm still ahead of the game. And I feel like chemo is either going to work or it's not so I'm not going to be really anxiety ridden about it. I am dreading the port more than the chemo. You ladies have done so much to help allay many of my fears. I'm so thankful that I found this thread. Thank you to all of you that so generously share your experiences. It is a lifesaver to those of us coming up.

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    sounds like everyone did ok. Thank you all for posting how it went. It is so helpful for us not there yet.


    Relocatedta do you mind saying why your chemo is so far past surgery date. Mine is as well and i worry about that. Mine was delayed because of infection.

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  • Kellee318
    Kellee318 Member Posts: 20
    edited October 2013


    Good morning all. I had trouble sleeping and got up around 3 am. I've been dozing a lot today. My queasy tummy is better but I don't have a big appetite. I ate a half of a toasted bagel at 5 and a Greek yogurt around 9. This is definitely going to be an interesting journey, and different for each of us. So glad to have you all here for support. I hope it's a good day for you all.

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  • lgkgde13
    lgkgde13 Member Posts: 164
    edited October 2013


    Belly Boo - i did have trouble swallowing a bit too but didn't last more than one day....

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  • lgkgde13
    lgkgde13 Member Posts: 164
    edited October 2013


    thankful for everyone checking in with us and letting us know how you are doing.....remember to listen to your body and take it easy and don't be too hard on yourselves....i was a little hard on myself for laying around but looking back it is just what my body needed for that week and this week was a 180 for me.....praying for everyone :)


    FYI - I either had reaction from Neulasta or Claritan not really sure which one but my guess would be Neulasta so not sure if my MO will give me it or not...she did tell me not to take the Claritan anymore just in case...

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  • MsJean63
    MsJean63 Member Posts: 42
    edited February 2014


    I wanted to wish the Wednesday Gals a special good luck, but didn't have the energy to post. I spent 6 hours at the hospital getting the port put in, 2 hours in pre-op, 2 hours in the OR (surgery only took 40 minutes), 2 hours in post-op. Came home and crashed, took Tylenol 3 left over from surgery, and iced the port site. Can't believe the Dr. Didn't give me pain meds, told me to take tyenol. Amazing thing with our bodies, surgery site doesn't hurt anymore, the pain in the port is overshadowing it :-)


    Cotinued Thursday morning: spent 5 hours at the MO yesterday, blood work, meet Dr. finally 2 1/2 hours of pre-chemo and chemo. There was another newbie in the chair next to me. She didn't have a port and the chemo was burning up her arm to her chest, when she was done she had a mild freak out (she didn't have anyone with her) and they had to call the Dr in. The nurse was trying to give me quality tim mooe while she was pushing and adriamycian, but had to stop several times to deal with the newbie. When I was done, I got up and was perfectly fine, nurse was happy that I had a good experience on my first day. Time for Mac and cheese my neighbor made me. Then off to hospital for port check and MO for neulesta shot. I can now honestly say, first time not so bad at least for me. Take a friend and think positive thoughts.


    Hope everyone is doing well


    P.S. took a claritin, the nurse advocate told me to and that the Dr doesn't tell the patients. I asked the Dr. and she sort of rolled her eyes. Another friend swore by L-glutamine and the Dr. said no to that one. Drink plenty of water, I have a one gallon jug, so I can keep track of it. MO nurse said on adriamycan if you pee red you aren't drinking enough water. I peed red when I first got home,but have been good ever since. My port is no longer hurting.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    vintage - here is the clinical trial link for Claritin and Neulasta:


    http://clinicaltrials.gov/show/NCT01311336

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  • travlmom
    travlmom Member Posts: 90
    edited October 2013


    MsJean - I hear you on the port pain - I am a week post op and it took until Tuesday to have the pain wain. But so glad I got it - even though they had to try 3 times to access it.


    Glad to hear your first treatment went well too.


    Off to Neulasta shot in an hour.

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  • flowergirl1
    flowergirl1 Member Posts: 54
    edited October 2013


    Relocated getting my port was not bad at all. It was sore for a few days but not terrible. Mine is on the left side so my seat belt rubs it so I going to have to find a way to fix that. The day that I got my port they had trouble getting my IV started so I am very thankful to have it. Praying all goes well for you too.

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  • kittykate78
    kittykate78 Member Posts: 23
    edited October 2013


    Hey ladies! I know that a lot of you are nervous about the port, so I just wanted to let you know that I am so thankful for mine. The "surgery" wasn't awful, but it wasn't a breeze either. I was pretty sore and it felt weird to sleep on my right side for about a week (my port is on my left) Ironically, the little incision on my collar bone where they accessed the vein was more painful than the one where they slide the port in. I guess cause it's right on my bone. For me, the most annoying part was the bandages I couldn't take off for 4 days. Soooo itchy! But, I am now 3 weeks out and I often forget it's there. The incisions aren't healing as well as I'd like but that's to be expected on chemo apparently. The reason I kinda love it is simple - chemo and blood draws are a cinch. I literally do not feel the chemo at all. My mom had BC for 5 years (pasted away in '83) and my dad says he wishes they had ports back then because her arms really suffered. I guess it depends on the kind of chemo you're getting, but my onc insisted and I'm glad I did it. I know the surgery is scary and the last thing you want is a semi permanent bump under your skin, but it's really small and once healed, it doesn't hurt at all. I hope that helps a little!


    Here is a pic of mine before they put it in - lol the nurse let me hold it! I was surprised at how cute it is :)






    image


    Here is what it looks like now:


    image

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    Wow, endless information here. Thank you so much kitykate for posting the photo. You look great BTW. :-)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    There are a couple of websites that sell products that help cushion the port irritation from the seatbelt. Here are some links:


    http://www.thebreastbuddy.com/


    http://sisters4hope.com/

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  • flowergirl1
    flowergirl1 Member Posts: 54
    edited October 2013


    Thank you so much SpecialK. I felt sure there was something out there to help.


    Crystal

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  • MsJean63
    MsJean63 Member Posts: 42
    edited February 2014


    Seat belt cushion ask at your MO office. I got one from the neulesta rep.

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited October 2013


    wrenn- I had to have a seconf surgery 3 weeks afte r my first one-some issues with no bloodflow-and my dr doesn't release for chemo until 6weeks after surgery. Then 3 weeks ago I got an infection. Dony be worried about starting late. Some people don't find their tumors until they're huge and they still get chemo that works.


    Flowergirl-thank you so much. I am trying not to be so anxious about the port. As long as its no worse than the BMX and I got through that

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    relocated, Just shows how different each MO is. Mine likes to do surgery 2 weeks post op for triple negative and pushed mine to 8 weeks reluctantly. I thought that was his limit but now they tell me 3 months is their limit. I hope you are all healed. Infections (or any delay or complications) are so frustrating.


    To all the lovely ladies coming to share chemo stories thank you again. whew we are lucky.

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  • travlmom
    travlmom Member Posts: 90
    edited October 2013


    kittykate - your port looks much smaller than mine. I am really glad I got mine no matter the size.


    I went for my neulasta shot today - I took the claratin this morning and will take it daily for 5 days as recommended here. I take it for occasional seasonal allergies so not a big issue there.


    I know I read on one of these threads some where about making scarfs/head wraps out of jersey cloth but now I cannot find it. UGH - why did I not write down the directions when I found it.


    I started a blog to keep my family up to date on this process and to document my journey for myself.

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited October 2013


    Wrenn-They're all scared of triple negative. I'm doing the chemo because my family really thinks I should but I really feel like it comes back or it doesn't. I can't believe a few weeks in either direction makes that much of a difference in whether or not it works. So I'm not freaking out about being a few weeks behind schedule. I plan on still having cancer out of me and my life and having this year as a bad memory that ill look back on 20 years from now.

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