April/May 2012 Chemo hang out

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  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    please tell me about the cold caps, what is it and how do i utilize that option?

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  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    looked it thanks for the tip!

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  • klepine
    klepine Member Posts: 24
    edited April 2012

    SandiK,



    Glad your surgery done. I was really glad we did second surgery. No cancer found in tissue they removed. CT & Bone scan showed no signs it has spread.



    Have a bit of taste bud change too. Has a bit of after taste. Going to try second nausea drug to see if that one works. Have to wait an hour before i can take.



    have to go back tomorrow for shot to boost immune system. Let me know when your first treatment will be.



    Kim







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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    LisaG65- there is a thread about cold caps.  To easily find it, hit "Search" at the top of this page and type in "cold caps".  They are also known as "Penguin Cold Caps".  In hopes of preventing hair loss, some have opted to wear them during chemo treatments.  Insurance may not cover the cost. of these.

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  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    Thank you

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  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    Yay Sandi. There are so many on here now I've lost track how many and when. Best to all who begin this week.



    I did a photo shoot in the park last weekend. In case my hair isnt the same and I age 10 years in 1, I thought it was important. My cuz is the photog and refused to take $.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Hi ladies,

    If you are getting a Neulasta shot to keep your blood counts up, make sure you have 24 hour Claritin on hand. Neulasta can cause bone pain, some ladies have it pretty dramatically, but taking a Claritin the day before, the day of, and 3-4 days afterward can keep you from that kind of pain.

    I took L-Lysine to protect myself from any mouth sores.  My husband took notes during each infusion and asked for copies of my labs each time.  

    If one anti-nausea med doesn't work for you, call your doc and ask for something different.  I wound up taking promethazine (phenergan) because the first one I had didn't work very well.At times the only thing that worked was to sip a very cold real Coke on ice.  That was my last resort--but it worked.Greek yogurt (more protein), saltines, and applesauce were my best friends for the first three days of each infusion (AC);Taxol was completely different and so much easier.

    Ask questions. Ask lots of questions if you need.  The doctors and nurses are working for you--you've hired them for their expertise.  You are your own best health advocate and no one will be more proactive than you about your health.

    I cried on the way to my first four infusions.  I was scared and apprehensive. So if you find yourself feeling emotional like I did--it's normal.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    Thank you Claire---So glad you continue to read this thread and give some insight as to how to deal with chemo side effects!!!  Need all of the helpful hints I can get!!!

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  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012
    Phenomenal Woman

    Pretty women wonder where my secret lies.
      I'm not cute or built to suit a fashion model's size
      But when I start to tell them,
    ...  They think I'm telling lies.
      I say,
      It's in the reach of my arms
      The span of my hips,
      The stride of my step,
      The curl of my lips.
      I'm a woman
      Phenomenally.
      Phenomenal woman,
      That's me.

    I walk into a room
      Just as cool as you please,
      And to a man,
      The fellows stand or
      Fall down on their knees.
      Then they swarm around me,
      A hive of honey bees.
      I say,
      It's the fire in my eyes,
      And the flash of my teeth,
      The swing in my waist,
      And the joy in my feet.
      I'm a woman
      Phenomenally.
      Phenomenal woman,
      That's me.

    Men themselves have wondered
      What they see in me.
      They try so much
      But they can't touch
      My inner mystery.
      When I try to show them
      They say they still can't see.
      I say,
      It's in the arch of my back,
      The sun of my smile,
      The ride of my breasts,
      The grace of my style.
    I'm a woman

    Phenomenally.
      Phenomenal woman,
      That's me.

    Now you understand
      Just why my head's not bowed.
      I don't shout or jump about
      Or have to talk real loud.
      When you see me passing
      It ought to make you proud.
      I say,
      It's in the click of my heels,
      The bend of my hair,
      the palm of my hand,
      The need of my care,
      'Cause I'm a woman
      Phenomenally.
      Phenomenal woman,
      That's me.
    Maya Angelou
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  • klepine
    klepine Member Posts: 24
    edited April 2012

    Clareinaz,



    Thank you for all your tips, it us greatly appreciated.



    I had first AC today, started feeling nausea at dinner time. Thought I would get a couple of days but doesn't look like it. Can you tell me what nausea drugs you started with?



    Thanks again.

    Klepine

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  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Klepine, I hope you feel better. Thanks for letting us know how it went.

    Sandik, its good to know your surgery went well.



    And good luck to everyone starting chemo this week. I'm going wig shopping tomorrow (praying I won't have to use it). I have acrylic on my nails as well but I'm not sure if I need to remove it or just not get a fill in. I also found out I was vitamin D deficient way before I was diagnosed with BC, is it ok to take vitamins while going through chemo? I start thursday, 2 hours of AC. I'm trying not to worry about all of the potential side effects but I have a fear of the "unknown"!

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  • Buttons2
    Buttons2 Member Posts: 72
    edited April 2012

    Ha Rachel thats great, I did a happy dance too when they took my drains out. Well I'm off to the hospital to get my port, very nice people at that hospital but 1 excisional biopsy, three needle biopsies, BMX and now port is a procedure every month, 2012 is kind of sucking so far. I really won't miss them when I'm cancer free and strong!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Hi Klepine

    Zofran...didn't help with nausea much.  Because of the steroids I got pre-infusion in my port line, I was up for hours the first night post chemo, and that was uncomfortable b/c I couldn't sleep through the nausea.  I remembered I had some promethazine for nausea from a previous surgery two years before, and I took a half-tablet and it really worked well. I called my MO and asked her to fill an Rx for it, and she did.  That's what I took for the last two AC tx. I remember I had about 3 hours post infusion before I started feeling crappy. Usually subsided a bit by day 3--but I had a hyperacute sense of smell and I finally had to ask my husband not to eat smelly deli meat or cook bacon during AC.

    Sade, I took supplements per my MO's okay (she reviewed the list) and recommended by my naturopath--but not the day before, the day of, and two days post-infusion. 

    Oh yeah. I drank what felt like gallons of water during infusion and for at least two days afterward. At least 80-100 oz.  I know it sounds like a lot (it really isn't) but it seems to flush out any lingering drugs so it may lessen SE.  Exercise has been proven to lessen side effects (google it--you'll find supporting research), so please try to drag yourselves outdoors every day and walk at the very least.

    Keep asking questions if you want to, ladies. I will (or others who are chemo veterans) will jump in too and answer.

    Claire

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  • klepine
    klepine Member Posts: 24
    edited April 2012

    Claire,

    Thanks for the great info.  My nausau set in about 5 hours after infusion, thought it wouldn't happen that quick but that is just the breaks.

    I had the same issue with the steriods, I couldn't sleep at all!!

    Did you have the Neulasta shot next day after infusion?  If so, any side effects?

    Thanks again.

    Kim 

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  • klepine
    klepine Member Posts: 24
    edited April 2012

    Claire,

    Read back to your previous post and you already answered my question.

    Sorry.

    Kim 

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  • Lumpynme
    Lumpynme Member Posts: 747
    edited April 2012

    hello ladies! i'm jumping in after only reading the first page of posts.i'll go on and read later -my computer has hiccups so i do what i can!!! i will want to be active with you and hope you don't mind! i hang mostly on feb chemo right now but do surf around!

    when the mods jumped in i hope you also read the parts about chemo drugs etc -if not go do so---knowledge can be power!!!!! and it can scare you!

    i have just finished ( a week ago) 4 rounds of DD A/C(thru feb and march) and , like claire, had minimal SE's.i  was very lucky! my hair was pretty long; i cut it short and lost 99% of it--it's already trying to grow back but it won't last as i have to have more chemo later.leg hair is also trying to grow but slowly-eyebrows thinning.neulasta shot made my nails very strong and white! the cytoxan of the AC gave me minmal nail bed darkening(purplish)....

    my story quickly is that i had my chemo and will now have lumpectomy-soon-not scheduled yet--then have to have more chemo-am thinking taxol but dunno--becuz i have lymph node involvement-then rads--the rads scare the poo outta me but i'm working on that!

    if you have neulasta shots (for WBC) it is suggested by many many to take claritin or it's generic(not D for decongestant-part of the D can mess with your heart)  --take one starting the nite of chemo and then for a week after-it seems to help keep back pain associated with neulasta at bay--

    the look good feel better program thru ACS is great! it's free and it's a good opportunity even if you think you KNOW everything about makeup--the ppl who do the classes know their stuff! and they tailor it to cancer patients.  also they (ACS) can help with gas cards depending on your income --but call them! whenever you first call is the date they work with for any help like that. when you figure how many times you go to your cancer center for chemo and radiation it can get expensive.

    someone mentioned a free scarf- many places offer them- i just got mine from good wishes- it took a long time but it is awesome.

    also--there are places besides ACS which offer free wigs--one is crickettsanswerforcancer.org ---it is run by cricketts mom and aunt -cricketts story is sad...these gals provide prosthesis and wigs and stuff to cancer patients-easy application--the web site for wigs is hard to navigate but i got a wonderful gabor wig valued at $99.00 for free.....

    the suggestions about exercise and being healthy--wow--- chemo knocks you on your ass even if your SE's are minimal--it zaps your stamina and it can mess with things like drying out your skin and mouth, it can do lots of things--but it's doable...keep that in mind!!!!! walking-even just to take the dog out can really help and if you ARE able to exercise thru chemo it makes the drugs go thru you better/faster (jmho)...remember oxygen in makes your bod feel better so even the most simple exercise helps. take this from a couch potato! there are days that i truly feel like a slug still!

    there are many many books out there about cancer and it can be so confusing-and some of teh books are just pollyanna and some scare you. you need to decide what you want to read and how much! 

    i am 58 yo so i don't have the struggle that so many of you do to have lil ones at home-God bless you--i could NOT have gone thru this when mine were little.

    anyhow--hope some of this helps -and i am so sorry that any of us have to be here but it's a great place! be safe and vent or cry or scream or whine or share positives!!!!

    margo

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  • Lumpynme
    Lumpynme Member Posts: 747
    edited April 2012

    btw i had a PICC line inserted-i felt the port was too invasive ---again jmho

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    I've got my ticket to chemoland and here it is:

    I'm starting within two weeks of having the next round of tests done (echocardiogram, bone scan, CT scan, labs) which I will have next Tuesday.  It will be 6 rounds of taxotere/cytoxan every 3 weeks (= 4 months).   I'm still on the fence about a Herceptin study that I qualify for even though my HER2 is +1 and considered negative/low.  There is still a question as to whether I will rads to follow but I'll deal when I need to with that.   

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  • Lumpynme
    Lumpynme Member Posts: 747
    edited April 2012

    someone-Pkate?-asked about decadron and ativan--both are anti nausea as well as ativan is a calm me down.... i have taken one a few times simply to relax enuff to sleep on the nites where i truly couldn't shut my mind down.

    i will not try to be a doctor here- always always ask your doc, nurse or pharmacist--my decadron scrip was to take one in am and one in pm 3 days following chemo infusion. i also had some in my infusion stuff..... i do NOT like the decardon however---

    ok- i'm caught up in reading......

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    Hi Melrose!  Let me know when your first day is.  I'm taking my Nook tablet with me for my treatments, and unless I decide to sleep or visit (I think at least my older son is going to hang with me the first time), I'll be putting up some posts. 

    Springtime in Colorado - it was 80 plus degrees on Sunday, and today we are getting an inch or two of snow!  All over my blooming crabapple trees.  It'll be gone by Thursday....

    Hugs!

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    Hi IndigoMont11- I definitely let you know my start date!!  I took a tour of the infusion area to get an idea of where I'll be getting the chemo.  Nice and quiet, tv's for every chair; some private rooms, place for loved ones to hang--- all good!!!!  My oncologist told me that I should ice the finger nails/ toe nails during the infusion to help minimize the effects of the chemo on the nails.  She also told me to paint my nails with Sally Hansen Clear Hard As Nails.  Surprisely, she told me that I could have alcohol during my trip to chemoland.  I probably have a drink every 3-4 months so it surprised me that she said to have a glass of wine periodically.  Ok I will follow doctor's orders!!!!

    Waiting for the rain to come today which beats having to water the yard!!  It's Houston springtime-humid and 80's.

    Hugs to All!!!! 

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  • ihatemyboobs
    ihatemyboobs Member Posts: 83
    edited April 2012

    I got my port Put in yesterday and I'm here now getting my first dose of "I.V. Therapy"!!!

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    ihatemyboobs-- Wow!!!! You go girl!!!!  Hope the SE are minimal!!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Hi again,

    If you're getting Neulasta, it's given the day after chemo. I felt pretty awful the next day but could always drag myself to the nurse for an injection.

    AC doesn't typically cause nail problems although it can (sometimes) cause a temporary dark streaking of a nail or more. Taxol/Taxotere--the taxanes--they're the ones that can cause nails to lift and sometimes fall out.  As well, the taxanes can cause neuropathy, which can make it hard to type, walk, exercise, etc. Sounds awful, I know. You can ice your nails which should help any possible nail changes while getting a taxane infusion and you can take three supplements: L-glutamine (powder), acetyl-carnitine, and B complex to help protect against neuropathy. You can search these boards for taking care of both of these SE--you'll find so much info.

    I took the above supplements and iced my nails--all 20 of them--during each Taxol infusion--and avoided those SE of Taxol.

    My hair did fall out on AC though.  But I knew that was temporary and would grow back.  It actually started growing back on Taxol, which can happen too. I'm already going "topless" again.

    I asked the nurses not to give me ativan, since I needed to be alert enough to work when I was getting my infusions (I'm a univ. lecturer and would grade assignments during chemo).  I also got benadryl, which is an anti-nausea med as well, in my port.

    Bottom line: each infusion usually takes some hours.  Taxol, after it was determined I wasn't going to have an allergic reaction, took an hour. But I had labs drawn every chemo, and they had to be read, and then I visited with my MO, and then they put in the pre-meds, and then finally the chemo. I didn't know that the infusions would take so long each time. Just be prepared.  Mostly it's pretty boring, sitting so long in a chair!

    Claire

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    Claire-- Thank you so much for advice. I was glad to have my oncologist tell me to ice the nails during infusion.  If she hadn't told me, I certainly would have asked since you told me about the icing!!!!  As you have told me before, chemo isn't easy but very doable.  

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    All the best to you, Sarah!

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  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    Had my first chemo today. I am in Arlington TX and about 20 tornados touched down around the center during chemo. The had to stop chemo for all and stay in a room on another floor until it passed. Finished up without any adverse reactions. My sister and hubby were w me. When we got home my sister's roof was destroyed and left holes in the roof. She and her girls will stay here tonight. Everyone is out getting food. I ate at home my healthy diet. No SEs yet. C :

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    Stacie- I'm so glad to hear you and your family are okay.  Sorry to hear about your sister's house.  Wow-- your first chemo infusion was a memorable one for sure!!!  Hope your SE, if you have any are minimal.

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    Hi Stacie, oh thank God you are all okay. I'm so sorry about your sister's houset though, and what a day for you! I posted on the March mastectomy thread that my sister, who lives in Forney, and her family, are fine. We have driven on that crazy busy I-20 so many times to visit her and my mom, who lives in Tyler. The news footage was incredible.

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  • sandik
    sandik Member Posts: 482
    edited April 2012

    Oh Stacie! How do they expect you to rest through that?! Glad you are all OK.



    Nothing new to report for me. I'm sore and tired. Hubby wants to drive to Philly tomorrow to look for puppies. I don't think I can take the bouncing for 2 hrs each way!

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