April/May 2012 Chemo hang out

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

    Thanks Claire!  Looks like, then, Neulasta is probably the one for me since I'll be on the every-3-weeks schedule.  I have a big box of claritin which I'm already taking for allergies, so - hopefully I'm as ready as I can be.

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    @ Lisa we should get shirts made that says "Breast Cancers My B!+©#" it has such a wonderful ring to it!!!

    I love this forum. Feeling great after 4 days of nausea. Finally enjoying my life again



  • Lynnbea
    Lynnbea Member Posts: 20
    edited April 2012

    This is my first post in this forum. I'll have to read up on the abbrev, etc. I had a lumpectomy and radiation less than 3 years ago. New occurence diagnosed in Dec 2011, masectomy in Feb 2012, and started chemo April 3, 2012.

    So far, I've done well.  Very few side effects. Praying the other 3 TC treatments will be similar. 

    Not looking forward to walking through this...but I'm glad this group is here. We'll walk it out together. 

  • velutha
    velutha Member Posts: 102
    edited April 2012

    Neupogen and Neulasta, since they are accomplishing the same thing, can be used interchangeably (except for that 14 day wait thing w/ neulasta).  So you can theoretically pick your poison  ;)  I chose neupogen b/c I did not want to get injected, I wanted to give myself the injections at home.  Neulasta has to be given to you in the office -IMHO, a lot of MO's just choose neulasta for you b/c 1) big Pharma markets it heavily, 2) it's 1 injection instead of 8, and 3) they get to bill for it, because you have to come in.  That doesn't mean it's not a great choice, I'm just saying you have a choice unless you are having weekly infusions.

    I tried compazine, zofran, and emend for nausea during ddac.  Emend was a miracle for me, but it is expensive if your insurance doesn't cover it.  I also had ativan with my a/c infusions, on hand at home, and of course IV steroids.  I didn't vomit once, and I vomited throughout my entire pregnancy.  My problem was more food tasting weird, nausea wasn't a big deal.  I think that's because the drugs really do work if you find the right mix for you.  I found the compazine gave me headaches and make me sleepy, used zofran during the day, ativan at night if I needed it.

    If you have burning "down there" be sure to mention it to your MO.  That could be several things other than chemo, including infection.  But the squirt bottle and hydrating are good ideas.  

  • klepine
    klepine Member Posts: 24
    edited April 2012

    Melrosemelrose.

    No I didn't choose, that is what has been available. I have Had nausea for most of the time since infusion so i don't think a different day would have made much difference. I get a break for the next four days so I am going to make the best of it!!!

  • klepine
    klepine Member Posts: 24
    edited April 2012

    Stacie,

    What was the name of the under the tongue drug?   Do you only take the phenagran at night?

    I wish I could take a drive with the windows open, we still have 40 degree temperatures.  It has been a bit cold.  It makes it tough to sit through my daughter's fastpitch softball games but I told her I would be there no matter how I feel.

    I did do some work today which felt really good.  I have quite a few clients traveling to Europe in the next couple of months so I have to try and keep everything up-to-date even when I don't feel good.

    Thanks for all the positive comments. 

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

    Thanks agan, Velutha. Very enlightening. DH gives himself insulin injections and says it does't usually hurt, but I hate shots..... Do you take the 8 shots over several days then?



    I'll decidr what's best, and yes, running back and forth to the docs and paying copays each time has gotten old. I can probably give myself a shot as long as they don't hurt like the heparin shots did after my surgery!

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

    Hi Kim - mom's always there no matter what, right? I admire softball players a lot - lol, my oldest dated a few in high school! Hope she's having a good season for herself.

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

    Hi Lynnbea, good to hear you are doing well with your treatment and nice to meet you!

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Kim be sure to let your infusion nurse know because they have something for the nausea. Its too many meds out there for us to have to suffer from it. It really is about getting the right combination....which I found out about a little too late because I was in the bed for four days straight. I'm praying it only gets easier from here.



    Went for my four week post op check up and I'm healing pretty darn well . I know the scars will always be there but I want them as light as possible. I asked the breast surgeon if there was anything I could do and he said many people have used coco butter or mederma which I purchased today. I hope it works. I also should be receiving a call soon to get fitted for my prosthesis!!! I'm super excited about that. I was 42dd before but I really would love to be a full C cup. I always wanted a breast reduction....didn't think this would be the way I'd get it.

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

    Sade, amen sister! My upper body was really too small for DDs - I'm thinking about going with a B cup in 3 weeks when I go for my prosthetics. And down the road I don't think I want to do the number of fills it will take to go beyond a B cup either.

  • velutha
    velutha Member Posts: 102
    edited April 2012

    @Sade: The dermatologists swear by plain old vaseline or aquaphor for scar prevention, which are gooey but easier on the pocketbook than mederma.  My incisions stayed pink and hyperpigmented for an awfully long time, but they look awesome now (6mos out) -just two thin lines.  So maybe don't worry too much about how they look now. 

    @klepine: The under the tongue pill is zofran, generic name is ondansetron.

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

    Klepine- Thanks for the info. aboit what day you have your chemo on.

    It looks like the first infusion is the one that gives you and the oncologist an idea of how the rest of the infusions will go.  My oncologist and her research asst told me that no one really knows what the SE's are until you have the first infusion.  I definitely plan to let them know what my SE's are after the first one so I get better drugs to deal with them. 

    Lynnbea- I am glad to hear that one can have few SE's from chemo.  It is reassuring to know it is possible to have chemo and have few side effects.

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Indigo, I don't blame you! Im not really looking forward to the whole reconstructive recovery process. I want the diep flap (I think that's what it's called).



    @Velutha, thanks I just really don't want to look at these "war wounds" for the rest of my life. Lol

  • AnnieJohn
    AnnieJohn Member Posts: 8
    edited April 2012

    This is John, my wife, Annie will start on the 17th.  4 rounds of TC every 3 weeks.  I've been doing more of the research and keep Annie up to date with what I find, we're both very happy to have found this....

  • AnnieJohn
    AnnieJohn Member Posts: 8
    edited April 2012

    Hope its OK to ask a bunch of questions!!  We've got 3 kids, 9-3 yrs old and wonder how much the chemo will take out of Annie, We're looking to have some family come and help or even get a sitter to stay with us. 

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Hi John, welcome aboard. Sorry you have to join us but we're glad you're here.

  • AnnieJohn
    AnnieJohn Member Posts: 8
    edited April 2012

    Thanks sade25, Annie had her TE taken out last week and will get the port Friday, hope to have a relaxing weekend!!

  • AnnieJohn
    AnnieJohn Member Posts: 8
    edited April 2012

    One last question for the night, some have talked about the ACS and programs to sign up for, I can't find anything on their site...

    Thanks!

  • Laura5133388
    Laura5133388 Member Posts: 577
    edited April 2012

    AnnieJohn, I am not sure what programs ACS offers, but the chemo facility will offer a Look Good, Feel Better session.

    TC is usually given in 3 week intervals. My "bad" days were the third and fourth days after treatment. Probably be nice to have help on those days. As far as managing side effects, the nausea drugs help a lot. I used cold caps and kept all of my hair. Looking like myself was my best weapon in fighting despair.

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Laura, I heard the caps were pretty expensive. Are they really?? And will some insurances cover them?

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

    sade25- You might want to check on the cold caps threads about your insurance questions.  Just hit the search button at the top of this page on the right hand side and then type in cold caps in the key words section.  there is plenty of information on the boards here.  One brand is called Penguin cold caps which you can find their website on the internet.

    You also may need to discuss the use of cold caps with your oncologists since some don't want their patients to use them.

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Thanks a bunch Melrosemelrose!

  • AnnieJohn
    AnnieJohn Member Posts: 8
    edited April 2012

    We spoke to the doc about those caps and ice on the nails and she said it was NOT a good idea to use them...so Annie isn't planning on it. 

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

    AnnieJohn- I am not using cold caps but my onoclogist did recommend the icing of the nails.  she also suggested that I paint my nails with Sally Hansen Hard As Nails- Clear.  I know I say I'm okay with the future hair loss but I also know that words and reality don't always match up.  I had waist length hair until a month ago; now I have a very short bob.  As the hair starts to go, I will probably have a buzz.  Here's my chance to look as unconservative and radical at 56 years!!!!!  In short, it's all good.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012
    AnnieJohn- You may want to visit some of the other Chemo threads whose headings show chemo starting in 2011.  The experiences of those women are an invaluable source of information and support.
  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    I am so with you Lisa. About the prayer and SEs but also being where my feet are. Yesterday I drove windows down rovkin 70s tunes. I just want to feel alive.

  • beth1965
    beth1965 Member Posts: 455
    edited April 2012

    Hello all - i had my first chemo yesterday i am not too bad overall some nasua,headache.

    Is anyone else getting the Red Devil chemo- i get that and had strange sneezing side effect. I sneezed about 50+ times in  a row i thought my head was going to pop off. They slowed the first dose way down at the end and took a break before the next and also put the one in super slow in case i was having some allergic reation they couldnt figure out.  Felt like they had injected me with a killer head cold by the time i went home.  Just wondering if this happened to anyone else.

    Sade25- i like your saying  "Breast Cancers My B!+©#" i am an artist and paint everything you can think of including mugs and glassware with sayings etc... I would love to add that to my new line of Cancer items.

    If anyone else knows any cancer sayings i would love to hear them. I have found a few great ones on here so far. Please inspire me.

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    Thanks Beth, but that was all LisaG65! I love how it sounds too and I'm seriously thinking about getting a shirt made with that on! Lol

  • sandik
    sandik Member Posts: 482
    edited April 2012

    I'm lost on who said what. Melrose, I am able to pick what days my chemo will be. My oncologist knows that I need to be good for weekends for weddings. She suggested doing chemo on Monday so I am good to go for Saturday. 

    I also read somewhere else that they think the fact that if you were sick during pregnancy will carry over to chemo. I don't think I was that sick, so I hope that holds true for me.

    Call the ACS (1-800-227-2345) and ask them for any and all help they can offer. Every time I call, they give me different programs. I've called a few times. You can get free wigs, cas cards to get you to treatment, help with your utilities, prescriptions, Look Good Feel Better program, I know someone here went to that. Im going on the 23rd. Find a number for your local office and call them too. 

    I go Monday for my MUGA scan and sometime next week for a PET scan. That was decided because of that lymph node that they found when they went in for the re-excision. Oncologist thinks it's overkill, but surgeon wants it. I know this sounds weird, but I am really anxious to start chemo. I just want to get it over with.

    I seriously hope the red devil doesn't give me sneezing fits. My port gets really sore when I have those.

    Be strong ladies! Keep being awesome! We are all going to get through this!  

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