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Chemo Starting August 2018

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  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    The red devil is in. My guts are churning. I pray this goes better. No zofran at home this time. Just the Sancusco patch and then going to start olanzipine tomorrow for 2 days. I started to have a panic attack driving here dreading this #2 AC. I lost another 4 pounds. I’m shocked about that. I also have an appointment to come back for hydration on Wednesday. Sending out positive vibes thatthis will work for me.

    Hope all is well with everybody else!

  • jimiwithani
    jimiwithani Member Posts: 10
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    SunnyBear and others. It's so helpful to read your woes I feel less alone. Plus I wonder at times if it is just me with all the SEs. I go for chest CT scan tomorrow for another try at port placement on Wednesday 22. Then round two of chemo on Wednesday 23. I dread it. I'm confused on what I read - Does chemo get better or worse or does it depend on the person? I didn't know if there was a typical. Sending you all good vibes, prayers or whatever your thing is for wellness Thanks for being in this group.

  • MiCyn
    MiCyn Member Posts: 29
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    Hi ladies ...I'm back, trying to catch up with all you brave souls. Your experiences give me hope, but also sadden me when I see what others are going through. I have been trying to get things done this week, preparing for next weeks chemo #2. My hair started coming out by the handfuls day 12. I was expecting it, yet shocked it happened so fast.I worked yesterday, felt good doing 'normal'. When I got home last night, I chopped it all off, but not shaved.

    Jimi...I was told by my MO, SEs tend to get worse.He is putting me on steroids longer period of time & also xanax the nights I do steroids. He also said fatigue is cumulative, so it may take longer each time to bounce back. Again, he reminded me, everyone is different. I had difficult time with SEs also. My MO reassured me we will do everything possible to control them. I had severe bone / muscle pain from Neulesta shot, despite taking clariten.My blood counts are really high/good. He said shot did its job, and as long as counts are still OK day before my next round, I won't have to get the shot next week ...just this one time though.

    Moongirl... Hope you are doing OK after round 2..glad you are getting the hydration tomorrow.

    My thoughts, prayers for us all ...Big Big hugs, Cyn

  • MiCyn
    MiCyn Member Posts: 29
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    Hughope...Sorry to hear what you are going through & how difficult it has been. I was a bit discouraged after round 1. I felt like such a wimp, especially seeing how some do OK with SEs, etc. My MO, Infusion Nurses, Social worker have all reminded me.. there are NO wimps here! We are brave & courageous for fighting the best we can. I'm holding on to that, trying to stay strong. My best to you, hope you are doing better....Hugs,Cyn

  • RimRoc
    RimRoc Member Posts: 22
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    Hi everyone,

    I think I haven't posted to this group... is there a second August 2018 chemo group?

    Anyway, I had my first infusion of taxotere and cytoxan 8 days ago. The first four days were sort of miserable with some nausea and abdominal cramping and just feeling icky. I had a Neulasta injection the day after chemo and took zyrtec (an anti-histamine) and didn't have any bone pains or anything, so it worked well (and my white counts are higher than before chemo!)

    The WEIRD thing was on Day 4, I started feeling like my head and face were on fire, like I'd had a really bad sunburn, but there was no redness. I did have some blotchy areas where I've had rosacea flares over the years but nothing really evident. My tongue and lips felt totally burned. Really continuously painful. By Day 6 I called the MO and he said it was just a reaction to the chemo, use moisturizers...not much help!!! Now, on Day 8, the pain has receded by about 50% and half the skin on my face is hard like it gets after a burn, and some of it has started to peel. I can finally tolerate food on my tongue. A nurse friend said this is an allergic reaction. Anyone experienced anything like this???

    I get it that the GI effects are recurrent with each treatment but I sure would hate to burn my face every time. Any ideas???

    Other than that, by Day 8 I've started feeling pretty good with decent energy and no stomach or bowel complaints.

    rimroc

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Hughope1 are you triple negative or will have a lumpectomy after? Usually they do chemo first in those 2 cases. I had mastectomy first and because my oncotype was 29 and grade 3 and a micromet in 1 of lymph node - I m doing TC chemo . Stay strong And make sure talk to your nurse and doc for SE !!!

    Moonrabbit- hi my neighbor

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    I want to tell about my SE after August 8-th first chemo TC. I felt normal after but on day 3 and 4 I felt like my soul left my body - felt do much druggy like person from mental institution, I swear...

    Was slow and blurry and on day 4-th at some point I had a panic attack with heart racing which I never ever had before my dx .Atavsn helped. I was managed to sit through my youngest daughter close birthday celebration with close friends and Neighbour’s but I felt yucky ...

    I took my Claritin , neuladta shot, steroid and anti- nausea on time.

    The nurse said I felt druggy because of steroid with drawhal she said it will feel better with steroids- I want to hope for that.

    Day5 felt better and drive myself for occupational therapy! Yey!

    Day6- I developed a tail bone pain -never had before but it’s gone for good!

    Let see if I did right sizing with cold caps but my hubby said do not rely on that . We shall see!!!

    Love y’all!❤️❤️

  • SarahNola
    SarahNola Member Posts: 45
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    Hi All! I have been reading on here every night since my diagnosis on 7/9. It has been so helpful and encouraging!

    I am 42 found a lump accidentally. No family history no other health issues. Needless to say I was totally shocked and it all still seems surreal. I had my port put in today and start chemo Friday. After 6 rounds of chemo I will have surgery either a lumpectomy or mastectomy. I am still struggling to decide which one but have some time to figure it out. I do the genetic marker test at the end of August so that may make the decision for me.

    I have a 9 year old daughter and 8 year old son. My husband and I told them yesterday and I expected much worse-so that is a small relief. They start school tomorrow which will be good for them to stay busy.

    I have a wonderful group of friends and family to help and support me and my family during the next few months but no one else seems to really “get it” like the people here. So thank you all from the bottom of my heart. ❤️

    I am nervous about starting chemo but also ready to get rolling and finish!

    Sending you all lots of love and light!


  • Appyfan
    Appyfan Member Posts: 55
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    RimRoc, I have a weird rash under my left arm and another spot under my left breast. It doesn’t burn, looks kind of like shingles. Nurse just told me to put Benadryl gel on it and keep and eye on it. I did have the burning sensation in my mouth, but not as bad as you.

    I bought a spray that’s supposed to be good after radiation, it’s called CV Skinlabs Rescue & Relief Spray. Maybe that would help you? I ordered it from Amazon.

  • Livlife
    Livlife Member Posts: 36
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    RimRoc what I had was itchy swollen fingers on both hands on day 4-7, I never had them before. It went away. Then I had very bad stomach cramping too I cry at night but it went away day 7. I have a calendar of all my side effects so I can tell my MO tomorrow.

    Today exactly 2 weeks from 1st chemo, my hair just started falling, it was a weird feeling. When i stroke it with my fingers, it would just come off. Tomorrow I think I’ll cut it very short, or just shave it.

    Jess- how are you feeling, I know you had your 2nd infusion yesterday.

    To everyone who’s not feeling so good, I hope it gets better. Sending positives thoughts to all.
  • MiCyn
    MiCyn Member Posts: 29
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    Rimroc...I also experienced the hot feeling you described on my face & head 4 days after chemo, except when I looked in mirror, I looked like I had a sunburn. I broke out in a rash all over my back, chest, neck. I was told it was chemo rash. I used Benadryl cream on the worst area( neck/chest). Also applied cool washcloths to face when sitting. My MO is increasing steroids this next round.

    Boston ..You described it so well. I told my DH (day 4) that I felt like I wasn't in my own body. I would sit & stare, looking around my backyard & think, I feel like an Alien. This isn't me ! Very fuzzy/ foggy minded. I was wondering if that is what was meant when you hear about chemo brain/ fog. So strange..

    Sara .. Sorry you are here, glad you found this place that has so much support & love to give. It has answered so many questions, helped calm many fears for me.

    Jess..Hope you are doing OK after 1st round.

    Hugs to ALL, Cyn

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Micyn, welcome to the club😂!!! Crazy lady club!!!

    So, staring outside on the back yard - that s me too, I couldn’t concentrate on watching even news, atavan helped me with some shakiness and like panic attack at some point.

    I have some g i issues for 2 days and taking Imodium they recommend BRAT diet as well.

    So if anyone experience SE I was told to call a nurse during business hours and she encouraged me to call on the weekend if bad SE will kick in!

    Much more love to all of you

  • Hughope1
    Hughope1 Member Posts: 116
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    Hello My group of girls, Hughope1 here!

    After going to the ER for fluids Friday night things have seemed to turn around some. Sat. & Sunday were doable. Monday forced my self back to work. I work from home and I'm in Aviation, I am a parts distributor. Made it back to work Tuesday as well, and have started being able to eat some after the first 12 pound lost. I've talked to my Surgeon and MO. They are going to adjust a few things for this next treatment on the 24th. of Aug. I am estrogen +, HER-2 positive. My hair was to my waist and starting to come out a little. I went ahead and cut it last night above my shoulders, thought it might be easier on my, I don't like it, but wanted to be in control of something. lol :):). I also order and got yesterday this stuff called Metaqil. It is a mouth wash for Chemo my MO told me about. I used it yesterday and it took the metal taste out of my mouth and made it easier to eat. The stuff is around $25.00 for 8oz. but it does not take much. I will continue to use it and let you guys know. I am back at work again today. :):). MO does not want me to wait 8 days after chemo for hydration this time, he wants me to take my chemo on the 24th on a Fri. then come back on the following Mon. or Tue. Hopefully all this will work better for me.

    Thank you for all your love and support. Your sister in this battle.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Hugehope , I knew it- you strong and can pull it together!!! Stay positive and take all meds especially for nausea on time !!! Sending good wibes!!! Hugs!!

  • Cindymb
    Cindymb Member Posts: 101
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    Hi everyone 😊

    Is a port always put in for chemo? I am doing 4 TC infusions, every 3 weeks.

    Thanks!

    Cindy

  • sunnybear
    sunnybear Member Posts: 19
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    Hugehope - So glad you have a supportive MO and got the fluids you needed. That should help next time also.Take care.

    Rimroc - I had a mild rash on my face 2 weeks after chemo. I took benadryl and it got better but lasted about 5 days. My MO said to call her if it happens again or gets worse and that it is likely an allergic reaction. They can give you steroids to help.

    Jimmiwithani - Everyone is different but I was told today that how you felt the 1st time is usually indicative of the remaining treatments but was cautioned that the fatigue is cummulative. That I can deal with more than the other SE's. Fingers crossed.

    SarahNola - Welcome. This is a great group - you are in good hands here. I was more nervous before starting chemo but after the first one was behind me it wasn't so bad. I was less stressed about the 2nd one today. Glad your kids are going back to school - that should help.

    MiCyn and Bostoniangal - That fog is something else. I had it day 3-5 last time. I couldn't focus on anything. I tried reading, watching Tv but was just too restless but it was exactly the way you described it.

    Jess - Hope you are feeling ok after your treatment on Monday.

    Just got back from 2nd treatment (1/2 way there). Feeling more tired than last time. Got the OnPro Neulasta this time so that should be easier.

    Take care. Thinking off you and hoping for minimal SEs for you all.

  • Appyfan
    Appyfan Member Posts: 55
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    Sunnybear, glad to hear you were told the first time was indicative of the other infusions. My SE’s weren’t too bad-a lot of small, weird things.

    Cindymb, I think a port depends on your MO and the condition of your veins. I didn’t have a choice because my veins in my left are terrible. They couldn’t one to get the IV in for the twilight anesthesia for my port, so I went with just a local. It really wasn’t a big deal, I wish I had known that beforehand-I would have saved myself 40 minutes of poking, the associated bruising, and wouldn’t have needed a driver. Are you getting a port?


  • Cindymb
    Cindymb Member Posts: 101
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    Appyfan,

    My MO appt and chemo class is tomorrow so I guess I'll be finding out. 😊

  • ingerp
    ingerp Member Posts: 1,514
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    Cindy—my MO preferred I try it without a port and it was fine. I did 12 weekly Taxol and will continue Herceptin every three weeks for a year. She thought it’s one more surgery, one more scar, one more reminder that it’s better to do without if possible.

  • bikelady7
    bikelady7 Member Posts: 1
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    Hi all! Scheduled for first AC on Monday (August 20) and admittedly nervous. Besides drinking a lot, is there anything I should bring with me for preventative help? Besides my husband, who is coming to my first treatment, so happy he readily agreed.

    I already have osteoporosis and some teeth/gum issues, so some of the discussions were alarming. What am I in for?

    Up until now, before and after surgery, my head was in a good space. Good diagnosis, caught very early, etc. I've been biking since week two after surgery. Why is chemo so scary?!

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Cindymb, be my guest I did first of 4 TC!!! Port I have, it’s for bad veins for chemo , it’s better for blood tests and chemo

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    welcome Sarahnolah to the club ladies in 40, I m 41 with 3 kids teens and 5 y o girls only!

    I did mastectomy on my cancered breast because I have smaller size and lumpectomy would disfigure It and beside I m afraid they will not clean the area and leave done more cancer to spread and plus require radiation . Now I have implants on both breasts . Get second opinion if you doubt .

    Welcome Biking lady as well, chemo has side effects it’s cure but it’s also harm you. We all wish to skip chemo or radiation . Good luck on Monday!!! If u have problem with teeth and gums u can have magic mouthwash if you develop sores or mix 1:1 maalox with liquid Benadryl to swish a mouth. Or water with salt or water with baking soda


  • keepmovin
    keepmovin Member Posts: 25
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    Hello to all who are on this path together. I got port installed on Monday and start Taxol and Herceptin on Friday. Once a week for 12 weeks and then Herceptin only for total of one year. Rads after Chemo. I had the chemo101 class today. Nurse talked quite a bit about neuropathy and that if I get that they may stop treatment. Anybody know about gloves and socks that can help prevent it? She thought they exist but didn't know any brand names.

    Thanks to all who are willing to share their stories. It's so helpful and appreciated!

  • Hughope1
    Hughope1 Member Posts: 116
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    I see we have some new girls here. Welcome, wish it was under different circumstances. Had 1st round of TCHP on the 3rd of Aug. (5) more to go. My chemo is every three weeks (6 hour sessions). How is the Zarxio working for some of you that are on it. I thought it might of played a part in making me so sick?

    Good luck all I will talk to you tomorrow. Need to get some rest. xoxo

  • Appyfan
    Appyfan Member Posts: 55
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    keepmovin, I used NatraCure Cold Therapy Sock on both my hands and feet. You can find them on Amazon. I bought 4 pairs and switched them when they felt like they lost coldness. Other people have used Elastogel Mitts, but it seemed to me the more recent reviews said they got warm too fast, and they were more expensive. Others have posted they used bags of frozen peas or wore a light glove and put their hands directly in ice. I did notice that my hands warmed the socks quicker than my feet, so I may try something different next infusion.

  • SarahNola
    SarahNola Member Posts: 45
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    thanks ladies for the warm welcome! It is nice not to feel so alone. I have a wonderful support group but not sure they all “get it” so I am really grateful to have found you all. ❤️

    Hughhope1 you are the first person I have come across doing my exact treatment! I start TCHP on Friday. I go every three weeks for 6 treatments total. Then surgery. I hope we can help each other through this! I am right behind you. Hope you are getting some rest tonight.


  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    I’ve been out of the loop a few days and I see that we’re with wonderful strong new women. Sorry that you’re here but glad that you’ve found us. I had my second ac on Friday and went on vacation on sunday. Still here. Most magical place to be! This second time, I am on top of the headache and constipation so I’m doing ok in that part. I’ve had to take a few anti nausea meds, unlike round 1, because I’m feeling a little woozy. Otherwise, I’m having a fun time with my kids before school starts.

    FYI: I also don’t have a port. And, like clockwork, my site reaction is back in the new iv area on day 7. But I’m prepared with hydrocortisone cream. Right now I’m having coffee and trying to stay as quiet as I can in the hotel room. I take two atavin at night to sleep but when I wake up, I’m totally awake. The dr says it’s the steroids.
  • chloe2007
    chloe2007 Member Posts: 3
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    Hi keepmovin, I had the exact treatment as you -- Taxol and Herceptin weekly for 12 weeks then Herceptin every 3 weeks for the full year. My Taxol ended in January and I'm almost done with my year of Herceptin (10/3 - yay!). Going into treatment last year, I already had neuropathy in my feet. During Taxol it did get worse and I started feeling it in my hands. I made sure my oncologist was up-to-date on what I was feeling at all times and she did stop my Taxol a couple times because of it. I usually took a week off but she said I could go up to 3 weeks between treatments. They take the neuropathy pretty seriously since it can become permanent. I did not use any of the glove/sock products. I'm happy to report that my neuropathy calmed down once the chemo stopped -- my hands went back to normal (feet are permanent from before). Good luck to you my friend -- you will do great.

  • PrettyPeacocks
    PrettyPeacocks Member Posts: 1
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    I am new to the forum.  :)

    I had Herceptin last week and Taxol will start on Tuesday next week.  I have an appointment with the Boutique for wig fitting.  

    I am not looking forward to any of this.  Not sure what to expect.  I work from home and the neuropathy part is a huge concern as I am a medical transcriptionist, so, the use of my hands/fingers is an absolute necessity.

    I appreciate all the input I have so far.  All of you ladies are such strong women and I hope that I can be just as strong.  

    🦋

  • ingerp
    ingerp Member Posts: 1,514
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    Re: neuropathy, I decided I wasn’t going to mess with the cooling things but did make a point to wear sandals to every infusion and didn’t use any blankets or anything. My thought was to keep my body cool during tx. I’m finished with Taxol (still getting Herceptin) and have had minimal neuropathy—I really only notice it occasionally on the bottom of my feet. And no pain at all, just a few numb spots