April/May 2012 Chemo hang out

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  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    thanks Stacie and welcome all. i am glad i am on this board, i went to a couple other boards and they were soooo depressing. so i am sticking to this thread only. my son (12) asked me to wear a scarf or hat if/when i come to his school. he still isnt used to my head being shaved and is honest that he doesnt want to be teased about his mama being bald. sad that other kids even have to go there. but i will do whatever it takes to make him comfy. thanks for the boost on the muga. it sounded creepy but i kept searching and found out more info.

  • Stacie
    Stacie Member Posts: 607
    edited April 2012
    We have positive thinkers here.  We will all be cured too.Cool
  • Tangela
    Tangela Member Posts: 16
    edited April 2012

    Had my first Chemo treatment April 4th.. 4 and 1/2 but I had to have Iron also..next time will only take 2 and half hours they said..  next will be Apr.18..  I will have these first 4 every 2 weeks then I have 3 months of one every  week.. So it will be august or Sept befor eI'm done just i n time for new Grandbaby dew Sept.  LOL

  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    CONGRATS Tangela on the new Grand baby!!!! woo hoo! such a blessing

  • velutha
    velutha Member Posts: 102
    edited April 2012

    @Lisa:  my 8yo son says to tell your son, "it's ok because people make fun of my mom's head too."  He also says it gets easier once you get used to it.  His current nickname for me is bad bald mommy (the snappy comeback of choice to me teasing him or telling him to do something like eat his veg).  After about 2 weeks he no longer had a preference about what I wore on my head.  And the neighborhood toddlers don't even really notice my bald head.  The preschoolers just wonder at it, like every day they are surprised it hasn't grown back yet.

    See if the MUGA tech will try to show on the screen what they are looking at.  It's a challenging imaging study to read (looks like a bunch of black/colored dots), so it's interesting to listen to the explanation.  I also find the techs treat you more like a person if you seem curious -not suspicious-of what they do.

  • Tammy2012
    Tammy2012 Member Posts: 22
    edited April 2012

    i took the clippers to my hair a few days ago...down to a #2, but today i had to take it down to a #1. I get my wig on Friday so i'm excited about that!  The place where i got it told me they would accept whatever insurance paid.  How nice is that?  I write off balances all the time for my patients so it's nice to be on the receiving end.  They still got $1300 though so they got paid well.  I also signed up for the Look Good Feel Better program through the ACS.   Still not feeling so hot but I have every med under the sun so i've just got to get through two more rounds of AC and then it's on to Taxol which they tell me should be easier on me.  :)

  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    awwwe your son sounds awesome @Velutha!!! it all works out. i went to pick him up today he had after school activities and he had me come in, so it will be okay, and i understand his initial reaction.

    i had TCH on 4/3. today a letter came from my insurance about the carboplatin

    review decision:not approve...

    reason: the request could not be approved because we have not been able to establish medical neccessity based upon review of the medical documentation submitted, please contact your DR or our customer service dept.

    i go in tomorrow for cbc and possible neupogen shot if/as need, was told neulasta wasnt approved on 4/3 during my first round.  today the unapproved letter came in a different envelope for the neulasta. i wonder whats up with that cause i saw them give me the carboplatin. i have paper work saying i got carbo.... i will ask them if it was or wasnt approved, and whats the next step. dont understand how the dr would know i was not cover for neulasta but still gave me the carbo if it wasnt approved. they dont give you anything if its not getting paid for. they approve/paid for mammo, biopsy, MRI, PET Scan, muga so far , then say there is no established medical documentation? confusing. hoping its just a clerical error, because i already do not want to be doing this chemo as it is, was just getting used to the whole idea, researched all the SE and came to grips with this to have it switched up now will push me over the edge 

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

    LisaG65- Don't you just love insurance companies????? Here is my spin:  I'm scheduled to have CT scan- chest and CT scan-abdominal.  About a week ago, I received a letter from my insurance company denying coverage on the chest CT scan but approved the other one.  The letter explained that it did not have enough information to approve the chest CT scan. My oncologist who ordered the tests also received the same letter and took care of it. I received a letter today from the insurance company saying they now approve the scan.  I called the insurance company about the denial coverage letter to find out if there was anything for me to do other than contact my oncologist.  They told me there wasn't anything for me to submit but the doctor would be the one to resolve the problem.  You may just want to call your doctor's office to see if they have faxed or sent the additional information and when they did send the info in.  Good Luck!!!! 

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    I went to the Look Good Feel Good session today and it was very helpful. The free gifts were humbling and appreciated.

  • Tammy2012
    Tammy2012 Member Posts: 22
    edited April 2012

    Nice!  What did you get Stacie?

  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    i am sure it will all work out, ppl pushing papers, trying to keep there bosses off their backs, do a power play. i am sure my dr will handle everything and probably did. i go tomorrow so i will know by noon whats up. I may not open these letters anymore :) lol.  let the drs staff handle it. thanks for calming me down. <3.

     i am getting a little rash or irritated area downtown, maybe the urine with all the chemo is buring my skin. i have been drinking plenty of h20, and showering and am super clean..... i may just rinse off with water every time i urinate from now on to be sure. charming huh?

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    Lisa i read we should get one of those ketchup squirt bottles which i found at Walmart. Keep it by the toilet to rinse.

    Tammy I got a T shirt and scarf and a bag full of high end beauty products.

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

    My LGFB class is a week from today. Really looking forward to it!

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    I am having little shooting pains all over. It feels like little electrical currents. My onc said its ok if its tolerable. It is tolerable, but weird and annoying. And I don't recall anyone posting a similar SE.

  • Tammy2012
    Tammy2012 Member Posts: 22
    edited April 2012

    That's awesome on the gifts Stacie.  

    Indigo....enjoy!  I don't get to go until next month because i was just too sick to make the class for this month.  I just want some help with false eyelashes...those things are a pain to put on.  I guess practice makes perfect so i mess with them at least once a week.

    Stacie, i haven't experienced that type of pain.  They warned me I would have unbearable pain as a SE to the Neulasta shot and i did have terrible back and neck pain.  The cancer center i go to offers a lot to the patients including accupuncture, yoga, nutrition classes....etc.  I took advantage of the accupuncture and it helped a lot.  She also left 4 seeds in my ears, 2 for nausea and 2 for pain.  I just push on the seeds and it seems to help.  <3  

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

    Hi ladies,

    Don't forget to use 24 hour claritin for Neulasta side effects...bone pain.

    Also, I wanted to invite you all to drop in any time on our Nov 2011 chemo discussion...you might find it really helpful to read where we all were in Nov, and then read where we all are now. I wish I had gone into a previous forum for chemo ladies to see what they experienced but more importantly to see that they all got through it.  Believe it or not, you'll be posting that you're finished with chemo on this discussion thread sooner than you believe.

    Hang in there!  XXOO

    Claire in AZ

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

    Hi Tammy! Sorry you have to wait because of feeling rotten. Lol, the lady who took care of me at the place I bought my wigs offered me a lash lesson too. Maybe if I get two lessons I'll finally get the hang of it. I've watched I don't know how many online tutorials and still didn't get it so crossing my fingers for hands on doing the trick.



    I need to practice putting on my wig. Going to show hubby and sons tonight.

  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    white blood was low, got first neuprogen shot, painless quick and was out the door. carbo issue with insurance was resolved. i take claratin everyday already, i drank plenty of water yesterday and so far today. my rolling and burning stomach is slightly better, i have had daily movements with out any type of laxitive. i am soo happy. i felt really good today. everywhere i went people who dont know i have cancer or who saw me with dreadlocks for years all say "oh  you look so beautiful, you have light just beaming out of you"...kinda made my day. who would of thought a clipper cut with a #1 guard could be considered glamorous!

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

    Yay - PET scan results were good! "No measurable signs of cancer."



    I understand what that means but after freaking out about my crooked ribcage that was the best thing J've heard in a while.

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

    IndigoMont11- YAY!!!  Glad your PET scan went well.  My oncologist changed the scan orders from bone scan & Ct scan to a PET Scan after I reminded her that I am allergic to iodine.  Next Monday I have the PET scan, 2D echocardiogram and lab work.  Hope all of tests come out good.  Supposedly I can start chemo 3 days after the results come back from those tests.  Looks like we will definitely be the late April chemo starters.   

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

    I'm glad you are on top of things! Last thing you need are any more allergic reactions.



    Hugs!

  • nfranklin
    nfranklin Member Posts: 119
    edited April 2012

    Had my first Taxol treatment last night, got home at 11 pm. Watching TV tonight, watching Giuliana and Bill now. I don't usually watch reality shows but this show is about Giuliana's BC. She is a member of the E entertainment show. On style TV. They do a very good job with the subject. Check it out. They show the episodes over and over so it should be easy to catch.



    Today I got kind of tried, but other than that I am feeling good tonight.

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    Such good news and high spirits. It warms my heart.

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

    Lisa, I asked my oncologist if I'd need Neulasta shots, and he said not necessarily and something about Neupogen.  I guess it depends on your white count - and I Googled Neulasta vs Neupogen to see what the difference is.  Web says Neulasta is longer lasting because of an additional ingredient in it and people get one shot w/in 24 hours of treatment - with Neupogen it said something about 14 shots in a *day*???? Surely not????  (I know, that's the risk you run with using Google....)

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

    I also asked my oncologist about SE's in general.  She said that she would give me what me prescriptions  to help with the nausea and to take Tylenol/Ibuprofen for pain.  If the SE's warrant more drugs, then I'll get them.  In another words, it is a wait and see approach since eveyone has different reactions to her chemo cocktail. She also asked me an interesting question about whether I had morning sickness while I was pregnant with my kids.  She said that may be an indicator of my degree of nauseousness with the chemo.  Who knows.... I never thought my body was that sensitive to things but now it is.  Next Monday is my day at the hospital for PET Scan, echocardiogram and blood lab work.  Oh joy.....

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

    Neupogen vs. neulasta: neulasta is given the day after chemo to boost white count only, but after the shot is administered there's a waiting period of 14 days before you can have chemo infusion again, so it's used for every otehr week chemo and 3 week chemo. Neupogen can be administered every day, so it's used when you're receiving weekly chemo (like taxol).  I've gotten both meds--neulasta 4x after every DDAC, and we used neupogen when my white count dropped to the borderline of being able to infuse.  Neither shot hurts, if you get a good nurse, but do take claritin to avoid SE from neulasta/neupogen.

    I remember that I got really tired of being touched and prodded and weighed and bp'ed by strangers throughout my chemo tx. That was just another SE to have to suck up...

  • klepine
    klepine Member Posts: 24
    edited April 2012

    Melrosemelrose,

    I think it is true.  I was very nauseous when I was pregnant with both of my kids for the first couple of months, all day long.

    After my first chemo treatment, that is exactly how I felt.  I had my first treatment on April 2nd and just starting feeling better today.  Unfortunately, going back for next treatment on April 16th.  I hoping that some of the suggestions I have read in this forum will work and I won't have as many issues as I had the last time.

    This forum has kept my spirits up throughout.  Remember "Fight Like a Girl"!!! 

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

    klepine--Kim--- Good luck with the second treatment!!!  Did you choose what day of week you have chemo. If so, why did you choose that day?

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    Klepine my doc gave me the under the tongue anti nausea med.  I look at something gross and gag.  So, I took it the night of chemo before bed and every four hours after that for four days.  A few times a slight nausea would creep up before the 4 hours so I sipped Ginger Ale the last 20-30 minutes and did ok.  Twice at night my nausea was worse and I needed the phenagran which knocked me out all night and half the next day.  But it got me through, expecially the preemptive taking of the meds.  Hope you have a better time this time coming up.

     I just ran some errands with my car windows down listening to old 70s music.  I felt so alive  I am grateful I have not  lost that feeling.

  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    i had muga today, it was a cake walk! had 2nd neopogen shot. my white were 5.3 before 1st infusion. yesterday they were .4 i feel really great. i have no SE complaints.

      i just try to stay fouced and BE in the present moment. not 5 mins ago, or 5 mins from now. just be in the now..... feeling the breeze, and sun on my skin. listen to the birds out in the backyard sing. there are no worries right now. i am doing all i can do to make cancer my bi*ch. just keep smiling, make em say wow!!! no matter how bad you feel it will get better.

     i am proud to be part of this group, i see how good we all are doing and i think someone mentioned they were praying for our SE to be minimal, its working.....:)

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