April 2013 Chemo Group

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  • daffyc
    daffyc Member Posts: 50
    edited April 2013

    Just wanted to share what I'm doing to keep track of meds, SE's, etc..  I'm sure there are more up to date ways to do this, but it seems to be working so far.

    I have a smaller notebook, maybe 4X6 or 5X7 in size.  I use one page for each day.  I track my water/liquids, mouth rinse (salt, baking soda combo), brush teeth/rinse (biotene), any exercise, bm's.  These are more to remind me and make sure I'm doing what I need to do.

    On the bottom half of the sheet I write down my meds for the day and then check off as I take them (this really helps for the 2 days after chemo when I take a few extra things-emend, steroid, claritan).  For things like compazine or ativan that aren't on a schedule, I write down the times I take them so I don't have to remember.  

    I also write down the Neulasta shot and what side it was on (I'm supposed to alternate sides each cycle).  

    On the back side of the page I write down any notes on how I was feeling, fatigued or when my energy started to come back, etc...

    Not only has it been helping me stay on top of things, hopefully it will help when I go in for my appt and next round of chemo in a couple days.  

    Oh and my dr office gave me a printout of my premeds and at home meds (one sheet).  I have a copy on the fridge and one in my purse for quick reference.

    What else are you all doing to keep organized?  If you can't tell, I like organization LOL!

  • jc254
    jc254 Member Posts: 439
    edited April 2013

    Take regular Claritin, not Claritin D, the day of your shot and for 4-5 days afterwards.  This was the advice of my oncologist.  She didn't volunteer the Claritin information but when I asked (thanks to reading these threads) she said "Oh yeah, that's a good idea".  I'm just using the Target generic brand and it seems to be working.  I'm getting strange pains that travel throughout my body randomly- thigh to elbow to ankle etc- but I can't say it's awful, just strange and annoying.  Who knows what it would feel like without the Claritin?

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Thought I better post this while I remember - are any still working (or not) experiencing so called "chemo-brain"? I for one am a mess cognitively. I am having trouble remembering stupid things, focusing, and with short/long term memory. I am only 43 - cannot be "senior" moments yet, can it? Usually, I am very on-top of things, so this is driving me nuts. Even remembering a grocery list, is challenging. Think there is anything to this phenomenon, or more likely just the overall stress of having cancer?

                                                                                               (((Heather)))

  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    I've had a few moments that seem foggy...but, I'm working...directed the 5, 6 and about to direct the 11pm show...I play games on Facebook A LOT....the memeory games.....know it's probably a BIG waste of time..but keeps my mind going......

    ((hugs))

  • jc254
    jc254 Member Posts: 439
    edited April 2013

    I went back to work today.  Chemo brain hasn't been a problem so far but I'm an emotional mess and dreading going back tomorrow.

  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited April 2013

    Daffyc, I like to be organized, I like the notebook....I did something like that when I had my babies, wrote down my eating, drinking,their eating , drinking , diapers etc....



    I will also need to see side effects on a calendar, I LOVE my month at a glance pocket calendar in general, but for sure there is no room on it for all this! Lol. Definitely don't need to be carrying a desk calendar,I will work on a happy medium.



    Thank you JC...I definitely will mark down the Claritan regime.



    For the no memory people, I have the worlds worst memory,and that was prior to 3 kids! I cannot imagine post chemo!



    Anyhow, I found this link making "fun" of having cancer....there are. Lot of jokes referring to "chemo brain". .. Take a peek for a few good laughs, ive read the first 50 pages and i dont thinknibe seen a joke repeated! http://community.breastcancer.org/forum/67/topic/755825?page=60#idx_1771

    Pat



  • BeHereNow
    BeHereNow Member Posts: 222
    edited April 2013

    I don't seem to have chemo-brain, I don't think (although it could be a real phenomenon). it feels more like stress and information overload today.



    I've been super fatigued the past two days. Hope it lets up!



    Wishing you all well.



    XO



    Katie

  • kirklandgal
    kirklandgal Member Posts: 63
    edited April 2013

    I was wondering if anyone else had a strange pattern of hair loss.  Over the last two days I lost almost all the hair on top of my head while the sides and back have only lost a little and still look normal.  I am planning on buzzing it tomorrow since I obviously can't go out without a hat now anyway.  My main concern with this pattern is the dreaded risk of permanent hair loss that is sometimes seen with Taxotere.  Is this pattern of hair loss abnormal?  Or are others like this?

  • Jen987
    Jen987 Member Posts: 145
    edited April 2013

    Kirklandgal: My hair is the same way. I only buzzed my hair down to a number 2 on the shears, I haven't actually shaved it. The top is almost gone but the sides and back are still there. Weird isn't it? I'm not sure if it will all fall out eventually.

  • runnermom1956
    runnermom1956 Member Posts: 47
    edited April 2013

    Hi Ladies

    Well today is my first of 4.. TC    I am nervouse(the unknown) and anxious to get it going and over with. I found the list of helpful items from the moderators post so i went to Walgreens and bought 130 bucks worth of stuff! Over prepared!

    Anyone who want to share their first day's experience is welcomed..I hate not being "in control" lol

    I will post when I get home. I hope you all have a lovely day.

    runnermom

  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    jc254 so glad you gave yourself that extra day off. My chemo was on a Tuesday, felt a little tired Wednesday, then exhausted Thursday, I only drive 35 minute commute. I had no business driving! It felt I was sleep driving. Gosh, nest round of chemo I'm playing it smarter!

    Shaving the ol noggin.

    Why is it everyone seems to be trying to talk me out if it?

    They all say oh wait, your hair might not fall out. Hello friends and family it will come out.

    I'm not ok with doing it, I'm anxious about doing it. However, you do whatcha gotta do.

    So....I am having a PARTY! 10 of my bestest girlfriends and family. Eat, laugh, possibly a drink or two to help me emotionally, wink wink. Lots! Of photos and silly faces! I love to make silly faces!

    Gosh? Wonder if my 6 year old nephew should come? He knows I'm "sick" but he doesn't know what's what. Maybe I need to call him or Skype him and explain

    Amyone? Tips on explaining cancer and chemo to a 6 yr. old?

    Well gals, chins up! I know it's hard, but we are the strongest women!

    God Bless you all

  • jc254
    jc254 Member Posts: 439
    edited April 2013

    Runnersmom, I had my first of 4 TC's five days ago.  First met with my oncologist who went over the results of my bloodwork. Then downstairs to the infusion room.  I had about 40 minutes of premedications (benedryl and antinausea meds) and then they started the actual chemo drugs. The infusion took about two hours and is not bad at all if you can keep your nerves calmed. The first infusion will take longer than the other three since they start the taxotere drip very slowly to make sure you don't have any reaction.  I had taken an ativan beforehand and combined with the benedryl, I was pretty relaxed throughout. It helped that I was the only one in the infusion room.  I left tired but feeling fine and sort of glad I had started the process since it meant I was that much closer to the end. Good luck to you today. 

  • Irene1975
    Irene1975 Member Posts: 19
    edited April 2013

    Good morning ladies! I hope you all had a good nights rest. My jitters have started with tomorrow being my chemo start, so all night I have been reading tons!!! One of the most popular thing I have read( not just on here) is that you want to at least drink a gallon or more of water before, during and after treatment. Does this or has this helped anyone?



  • BeHereNow
    BeHereNow Member Posts: 222
    edited April 2013

    Irene, the water is essential and makes a big difference. I splash a little organic lemon juice or unsweetened cranberry juice in mine to make it take better.



    Good luck! It is totally doable!

  • Irene1975
    Irene1975 Member Posts: 19
    edited April 2013

    Katie- thank you! I'm nervous to start yet I can't wait to start. Does that make sense?! My treatment plan is once every three for six. It's like once I finish tomorrow, five more to go. Such mixed emotions.

  • BeHereNow
    BeHereNow Member Posts: 222
    edited April 2013

    Irene, the waiting is the hardest part. Be gentle with yourself :). I felt relieved to get started. I had a lot of anxiety leading up to it. But I'm more at peace now. Just dealing with what comes up one day at a time.



    Take care!

  • Rdhnow
    Rdhnow Member Posts: 22
    edited April 2013

    Heather214, I am beginning to think it is common to have this cramping issue. I spoke o my gastroenterologist yesterday who gave me a prescription for an anti-spasmodic. What a difference! I slept almost all night! I hated to resort to more drugs, but the pain was bad.

  • goingforward99
    goingforward99 Member Posts: 25
    edited April 2013

    I am heading out to get my port in a few hours. I am triple negative so I have to have 8 rounds of chemo even though there was no lymph node involvement. I get my first chemo tomorrow (I'll be there this time tomorrow). I am feeling pretty terrified...

  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    Hang in there Irene1975, we're here for you..as the song goes The Waiting Is the Hardest PART...

    triple negative here too Irene.....round two will be Next Friday 5/3 for me.....once you get your  port, at treatment ask for the numbing spray ......i swear, I almost didn't feel it when they started....

    I've noticed hair is starting to come out multiple strands at a time....thinking of getting a MUCH shorter cut this weekend,  I want toBUZZ when it REALLY starts falling out, but do i wanna pay for a stylist to cut it? decisions decisions....

    ((hugs)) Katie and have a peaceful day EVERYONE Cool

  • goingforward99
    goingforward99 Member Posts: 25
    edited April 2013

    Irene1975, we are starting the same day and I am very nervous also. I am leaving for my port surgery soon and I was pretty nervous about that too but the nurse said it was OK to take a Lorazepam this morning and I am feeling much less anxious he,he... Also, I do love my surgeon, she did such a nice job on my lumpectomy and it is healing very well. Sometimes, though, I get a nasty burning, pinching pain in my arm that is awful. I think that is from the nerves trying to reconnect?

    Virginger, thanks for the advice I will ask for the numbing medicine.  I am planning a "Hair Shaving Party" in about 2 weeks. It will coincide with my birthday. I will either have it at my hair stylist's salon or at home, probably the salon.  I will post pictures on my caring bridge journal which I use to keep family and friends across the country (and my brother in Australia) informed. The address is: www.caringbridge.org/visit/irenegoyette  I have had thinning hair for a long time and I keep it short so the layers will cover my sparsely populated head. This makes the hair loss much less traumatic for me than for those of with long, gorgeous hair.

    Hugs to All!!  Irene

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Kirklandgal,

    I have heard the reference to "male pattern baldness" is very common. I shaved before I got too bad, but many others have used the term. Sorry about the hair loss, shaving it before I lost it all was somehow quite empowering. Good luck!

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Rdhnow, do you mind telling what he gave you? I am thinking I might ask for one too. That was horrendous, thankfully only happened the one time!

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    HUGS Goingforward, you ARE moving forward, and we will be thinking about you!

                                                                    Heather

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Had a mini meltdown last night - boo-hooing and feeling weak. So today I am doubling up my efforts to be as positive as I can. Just a few thoughts for the day:

    My mind, body and spirit are strong~I take time each day to rejuvenate and recharge~I draw from a deep well of peace and calm~I breathe in strength and release my fears~I go after my hearts deep desires~I can accomplish anything~All of my dreams are coming true~I focus on my goal and have the strength to make it happen~I choose to be unstoppable~I am strong~I act in spite of my fears~I am bigger than my concerns and worries~I go for it with gusto!~I can do anything I put my mind to~Each day I AM getting stronger~I take great care of myself~The strength of others inspires me daily~I trust my intuition and live a courageous life~

    Sounds like all of us, huh? Have a great day everyone!

  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    LOVE that Heather214

    ...thanks for sharing!!

  • Rdhnow
    Rdhnow Member Posts: 22
    edited April 2013

    Heather214, it is called Levsin! I was also having spasms in my esophagus which are due to acid reflux from the chemo, one of these pills dissolved under my tongue worked within minutes! It is so much better today! How many more treatments do you have and when is your next one?

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    jc254, I feel for you! I am struggling trying to keep working, and every day is difficult. I am sending thoughts of strength and energy your way!

                                                                                           Heather

  • heather214
    heather214 Member Posts: 142
    edited April 2013

    rdhnow,

    I am getting pre-chemo, I have 8-12 cycles before surgery, not sure yet how many after. My next treatment (#3) is May 2nd. Thanks for the info. on the med, I think I will ask the doc about it. I could not figure out what what going on, I learn so much on here, thank God!

  • LeslieFay
    LeslieFay Member Posts: 10
    edited April 2013

    Love that quote Virginia.

    I'm new here and post mastectomy, pre-chemo, pre-radiation.

    I'll be reading & listening & learning. Looks like good group!!

    :-) Les

  • kirklandgal
    kirklandgal Member Posts: 63
    edited April 2013

    Jen - I'm glad to hear that I'm not atypical in this strange pattern of hair loss.  I tried to brush all the lose hair out of the back and sides and didn't get much out.  I look totally fine with a hat on - so I changed my mind and decided not to buzz it for now.  I'm sitting in the chemo chair right no - I suspect that will finish off my hair.

    GardenGirl - I have a 7 year old and 9 year old.  I explained to them that I was sick with a disease called cancer.  I told them the doctors were going to cure it but that it takes 3 steps - surgery, chemo, and radiation.  I explained the chemo as medicine that would make me sleep and lose my hair.  I said radiation would give me what looks like a sunburn.  There's a great book for young kids called "nowhere hair" that I had my kids read that talks about hair loss in a way that isn't scary for the kids.  My kids are doing great with it so far - they are great at adapting.  My daughter wanted me to take my hat off yesterday to see the bald spot on my head - she said it looked fine!  I love her!!!

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