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Starting chemo January 2018

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Comments

  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited February 2018

    Thank you, lmurphy, did you wait until it was thinned out to buzz it?

  • erob321
    erob321 Member Posts: 59
    edited February 2018

    I’m back home finally! Going to shower and relax for the rest of the day! Hopefully no more fever

  • murfy
    murfy Member Posts: 259
    edited February 2018

    Princess, my DH buzzed it the day before chemo #1 so I could get used to it before shedding began. It is now 3 weeks later and already ready for its next buzz!

    Erob, indeed, there is no place like home to relax and heal! Best of luck to you. <3

  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    PrincessButtercup my hair is coming out today like crazy too. going to buzz it tonight. have invited a couple of girlfriends to watch:))

  • insideout2
    insideout2 Member Posts: 108
    edited February 2018

    I am struggling with my appetite and feeling nausea. Feeling fatigue and light headed.

    I hope this gets better.

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    I had my second round of TC on Thursday. Felt like crap yesterday, very tired and nauseous, and was sure that the SE will be much worse this time around, since I didn’t remember feeling so bad in the first couple of days after round one (I think I just forgot that it was bad. But I got up feeling pretty good today (Day 3). Even the Neulasta aches are gone. Hopefully this is it for side effects this time around.

    Hang in there, everyone!

    XO

  • Eschindler
    Eschindler Member Posts: 29
    edited February 2018

    On Day 5 of my first AC + T and carbo. I feel an upset stomach and nausea much more than when I did TC in 2015.

    I’m making an effort to eat, and that’s helping, but still lots of diarrhea. Also, my insurance won’t cover neulasta, so I’m on Granix. Wondering how that’s affecting hall of this....


  • murfy
    murfy Member Posts: 259
    edited February 2018

    4 pints Ben&Jerry...check

    Cherry jello... check

    Mac N Cheese fixins...check

    Guess I'm ready for tomorrow!

    Eschindler, I received Granix for 3 days 1 week after chemo. Took Claritin and lots of Tylenol and took care of the bone pain. Good luck!

  • Olesya
    Olesya Member Posts: 109
    edited February 2018


    My new hairdo, inspired by Hunger Games movie.

    Will keep it for a couple of days, then will buzz off completely. Hair is coming out pretty quickly!

    Had a great night with my friends with a bit of wine. A couple of my girls cut off their 10 in ponytails to donate for wigs.

    image

  • Deaelle
    Deaelle Member Posts: 43
    edited February 2018

    Insideout2 - when I was having all my IBS symptoms and couldn't eat, and was very depleted I discovered bone broth. The health food store carries it in powdered form. A cup has something like 10 - 15gm of protein, WAY more than regular broth. It really helped give me a bit of energy.

    Imurphy - good luck in the morning with your next round! You sound ready.

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    Good luck today, Laura! It's much easier when you know what to expect.

    Olesya, that is a really cool haircut!!!! Girl power right there :) It may last a while too. I find the hair on the top on my head fell at a slower rate than the rest.

    My husband ended up buzzing the rest of my hair last night. At this point, the shedding was so bad I had no regrets whatsoever. I wore my wig mist day yesterday and I quite like it. I think I finally got the hang of it.

    Sending good vibes and healing thoughts to all.




  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited February 2018

    Good morning, all. Today is the day for hair buzzing! lmurphy, love your food list! Olesya, love your new do!

  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    Went on a shopping spree to the Dollar store: they have a wonderful selection of scarf -had lots of fun playing with them today. also cannot wait to go to the Look Good Feel Better workshop in a couple of weeks!

    good luck to the ladies who are going through their next round!

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited February 2018

    I'll add my cheers to the list. We got this.


    Second chemo (AC) coming up on Thursday. I still have all my hair and feel pretty good, but am not counting on either of those things lasting. That's the real lesson of all this tribulation, that impermanence is the only constant, right?

    No wigs or reconstruction for me. I'll be a bald boobless cancer survivor and proud of it!

  • SarahSC
    SarahSC Member Posts: 20
    edited February 2018

    TeriAnne-thank you for rec Claritin. It really helped. I am happy your buzz cut went well. I’m hoping to save my hair with cold capping but it is a lot of work.

    Olesya-I have been drinking lots of water and I’m finally starting to feel better. This is 6 days post chemo treatment. Water is starting to taste a little better. The salt water rinses took care of mouth sores so thank u

    Shlomit-congrats on being able to go to work. I am a dental hygienist and so my MO rec not going back until I recover from last chemo

    Amelia01-I didn’t realize my immune system will be worse at 14 days out :( I was hoping that last week before second round I could do some normal things like go to a movie or out to dinner

    Okkate75-sorry to hear you have the flu. Hope you feel better soon

    Insideout2-sorry to hear about your appetite and nausea. That is one thing that didn’t happen to me. Instead of losing some weight I am gaining. Losing a few pounds was the only thing I was looking forward to but I guess I wouldn’t want nausea. Hope you feel better

    Imurphy- all that food sounded wonderful. Is that what you take during chemo session? Sounds like my kind of combo :)

    I felt a little bit better the last 2 days but I took a long walk on Saturday and probably over did it. My body was really achy and that night I had the chills and my temp was 99.4. It wasn’t high enough to tell my MO but it made me nervous. The last 3 nights I have been having night sweats and having hard time sleeping. I hope this isn’t going to be the norm

    Sounds like everyone is shaving head. I am trying to save hair by cold capping but do not know if it will work. It is a lot of work and sometimes I wonder if it’s worth it. I have really long hair and my hair takes forever to grow so I wanted to at least tr

  • SarahSC
    SarahSC Member Posts: 20
    edited February 2018

    ok so 2 hours ago I felt the best I have felt since first round of chemo which was 6 days ago. All of the sudden my legs (muscle and joints) are hurting the worst they have ever hurt. I’m literally moaning. Is anyone else experiencing this. Not sure if this Is normal

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    I am experiencing the same, @SarahSC, on Day 4 after the second infusion. Even though I felt pretty good yesterday and this morning, I got this sharp pain in my legs at around 2pm today. I had to take a Tylenol 3, it was that bad. I remember last time I got these throughout the first week after the Neulasta (and maybe up until Day 9-10, don’t remember exactly). Unpleasant but I’m not concerned. It went away eventually

    Btw - if cold capping was available to me, I would have done it too. It’s no fun losing my hair, even if we try to make the best out of it. But it doesn’t seem to be done here in Canada as much (or maybe I don’t know where to get the cold cap).

    Does anyone have muscle spasms? My eyes are twitching, and recently, my biceps started to as well. It’s not painful or anything, just very annoying. Not sure if it’s the chemo or something else.



  • okkate75
    okkate75 Member Posts: 75
    edited February 2018

    @Roxy13 The eyelid twitches! Glad I'm not alone. They aren't the biggest deal by any stretch of the imagination, but so annoying.


  • Deaelle
    Deaelle Member Posts: 43
    edited February 2018

    Roxy13 - There is a company based in Winnipeg that can supply you with the Paxman cold cap system, which is the standard of care used in Europe i gather. (I'm not sure what is used in the states). Company name is Cold Comfort. I talked to the woman and was all ready to go, but changed my mind at the last minute. It is not cheap, but that's not why I cancelled. Anyway, easy to find online if you want more info.

    I have had some muscle spasms but i think it was more like the muscle was twitchy. My thing right now

    is lowgrade numbness or tingling in legs and feet. This seems to be a constant state of affairs at the moment - feels like I am always 'cold', except it is not cold really. Starting to drive me around the bend! Makes it hard to sleep at night.

    Magnesium might help with the spasms. And potassium from food sources, like a banana a day.

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    Thank you, ladies. I think I will ask my MO about the twitching. It makes me feel like the evil queen. I’m also fairly self-conscious when I talk to people and make eye contact. I will report back if I hear anything, which I doubt.

    Thanks for the cold cap reco, Deaelle. It’s too late now, I already lost my hair. At least with the wig I get some money back from the insurance companies. Sour grapes, I know :)

  • Deaelle
    Deaelle Member Posts: 43
    edited February 2018

    No, not sour grapes. Roxy13. It is just too bad that patients aren't informed about options!! I had heard of the cold cap just by chance, so thought to ask my surgeon about it. It was him who told me about this company. But if I hadn't asked I'm sure I wouldn't have known anything.

    In the end I'm going to lose me hair too. In fact, today it started. I am so sad about this, but trying to put a happy face on it.

  • SarahSC
    SarahSC Member Posts: 20
    edited February 2018

    Roxy13-it’s good to hear that it went away for u by day 10, so I won’t be alarmed. My lower back was spasming but nothing else. Gotta love chemo!! My MO said my eye twitching was stress related. I don’t know why I would have any stress these days ;)

    Deaelle-so agree with the body temp situation. I am freezing on the outside but my insides feel like a pizza oven. I haven’t slept in 3 nights because of it. My poor husband was constantly opening and shutting windows and turning heat up and down. I finally told him to put the temp where he likes it because my body was not going to make up its min

  • Deaelle
    Deaelle Member Posts: 43
    edited February 2018

    SarahSC : And dont get me started on the hot flashes haha. Geez. The fun never stops. :) i keep a foldup handheld fan with me at all times now, even by the bed.

    My husband and I sleep in the same bed, but have separate bedding - avoids a whole ton of hassle with the hot/cold thing I have discovered.

  • insideout2
    insideout2 Member Posts: 108
    edited February 2018

    Hello Everyone,

    Roxy13- I haven't had spasms. Has your MO recommended anything?

    Deaelle and SarahSC- My temperature changes too. I just keep a heating pad and ice chips near.

    I read how some take medicine to get in front of the SE. I think I waited too long to start certain meds. I did take Tylenol 3 yesterday and stayed in front of the nausea medication.

    I have been using the baking soda rinse. It makes a difference. I have used ice packs on my feet to address numbness after treatment and It worked.

    I plan to make the broth recommend. My appetite was better than the day before. I have tried to be move each day. I think on certain days I pushed so hard to have a normal day and my body was not ready for what I wanted to do. I believe this impacted my appetite too.

    Yesterday I took my time and placed effort into listening to my body. I walked indoors and worked from home, but stopped when I felt I needed to. I took medicine before discomfort kicked in. I ate cereal because it sounded good and liked it. I thought Honey Bunches and Oats was the best thing ever. I haven't eaten cereal in years... lol. I took multiple naps also. I feel so much better.

    I decided not to cold cap since I have 4 days of chemo each cycle. I would have to ice darn near overnight. Day 1 I take one of my chemo treatments home until day 4.

    I won't try to be the old me today. I will just be the best me for today.

    We will all get through this.

    _________________________________________

    My Laughable Moment.

    This experience has been crazy. I had to laugh at myself when I thought back to my Neulasta patch experience. I was so worked up anticipating it. I probably used all my energy waiting for it to beep. Oh and when it did, I was terrible....lol. I forgot about the 45 minute release and the clicks it would make. I didn't remember any instructions until it beeped it was done and okay for me to remove it.

    I am crying laughing at myself. I watched a video on it and still forgot. I had everyone near me listening to the darn clicks..lol. My nerves were a mess. I definitely walked during the release, my nerves were out of control. After getting so worked up, it was nothing to take it off...lol. I am laughing so I think I am going to wake my family up. 😅

    Please forgive my humor, but sometimes I think it is okay to laugh at myself.




  • krose53
    krose53 Member Posts: 74
    edited February 2018

    So, I had my first TC chemo 15 days ago. My hair is really falling out. I had already cut it from long to short.. I'm trying to hang on until Thursday. Having a little head shaving party. Actually, my amazing sisters planed it. We are getting our make up done and then lunch. Then heading to my niece's house. She is a hair stylist and will shave all 3 of our heads. My daughter, a photographer, is doing a photo shoot. This should be pretty hilarious. I'm looking forward to it. Totally sick of looking like ahuman hair ball.

  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    Insideout2 - laugh is sometimes the best medicine:))

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    I probably lost interest in birthdays by the time I hit 40. Sure, I wanted them to be acknowledged and not forgotten (mostly not by my husband!) but there was always an aspect of getting older that was depressing - maybe not so much the number on candles on the cake but the associated physical aspects of aging (wrinkles, grey hair, flab...). So I sloughed them off.

    This year is different. Having a birthday during this fresh diagnosis and whirlwind of doctors and emotions and fear of mortality and all the connected web of cancer is a different feeling.

    I want birthdays. I want many many more. and I want to one day at 88 look back on 48 and see it as just a tiny fraction of what was and will become a long life full of love, good times, achievements...

    I find myself hoping at least to get another 10. Is that too much to ask for? Can I get 20? Will I be so fortunate to get 40 more? I don’t know and would be afraid to know.

    So in the meantime, I embrace this birthday and I will enjoy it and be thankful to have it and grateful to feel so physically good today. I hoe there are many many more to come.

    And in defiance of everything—— even not being out and about in the cold rain while people sniffed all around, I went out with some of my closest girlfriends and savored every bite of a juicy burger that was washed down with a lovely IPA and a big slice of chocolate cake that my good friend made for me.

    Passing on good spirits to everyone!

    Xx


    image

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    the greasy ragged hair look is my new normal. Too afraid to wash it and have it all go down the drain!

  • murfy
    murfy Member Posts: 259
    edited February 2018

    What!? You, Ms Amelia, look WONDERFUL! Happy birthday and many, MANY more!! <3



  • garifalia
    garifalia Member Posts: 21
    edited February 2018

    Hi, I’ve been away for awhile so I don’t know if anyone talked about this. After my 2nd TC my scalp became very irritated with small pimples all over. Not sure if it’s a reaction to chemo or just irritation from hats & scarves. I put Aloe Vera on it for somerelief but it doesn’t go away. I check in with my MO on Thursday. Overall 2nd chemo hit me much harder but I’m feeling better now 2 weeks out.

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