April/May 2012 Chemo hang out

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  • sandik
    sandik Member Posts: 482
    edited June 2012

    Indigo, just reading the word lemonheads makes me want to gag. I had two big boxes of them. They did not work to mask the taste of the flushing of the port, so I now associate them with chemo. YUK!!!

    Silk and Debbie, I was stage 2a before surgery, then ended up being stage 3c, and I had clean sentinal nodes. Damn cancer decided to trick us all and go elsewhere. If it wasn't for a fluke and a persistant surgeon who thought he saw something, I wouldn't have had the pet scan to find the second node.  

    Fierro, another vote for Frankenboobie. My friends have nicknamed me the Swan Princess after my swan dive the other day. haha

    Melrose, my wig is stuffed in the bag it came in too. I hope she suffocates to death. I can't even stand to wear the bandana half the time. I just go commando. My partner wants to start painting stuff on my head, so I may let him.

    kjiberty, hair is microscopic on my head, but I can feel it. Still shaving my legs once a week (I KNEW that would happen to me), nothing under the arms, chin hair is starting to grow back. BOO!!!!

    vball, I am loving the 5 minute shower! I get up, make my scrambled eggs, eat, shower, dress, and brush my teeth all in about 20 minutes.  It takes me longer to brush teeth than shower. Maybe I'll just stay bald forever. haha

  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    Debbie, welcome. Wow, you had quite a surprise there! I have a friend who had a similar thing, had to really regroup about it all. We are here for you!

    The summer rads group: I believe I don't get rads at all, since I had a double mastectomy. Will I jst go there anyway? I like you guys!! And just cuz I have supposedly last c4 tomorrow doesn't mean I'm done with other treatments or processing etc.

    Nice day. Pretty active (the decadron us good for that) saw my BS for 3 mis coup- he thought my the breasts and incisions looked great, etc. he said one cute thing- "now you are sitting pretty," it has been a long year.

    Icing nails: what's the deal?

    Meditation site: can someone remind me?

    TEs afters rads: my sister just did it and it went fine. She wanted smallish breasts like her original ones (A/B) so didnt have to stretch a lot. Looks darling 30 days out.

  • Gemmie
    Gemmie Member Posts: 103
    edited June 2012

    I knew I shoulda kept my mouth shut. The major bone pain in the lower back, along with a few chills, here tonight. It lets up, then whammies me again. No fever. Took Tylenol, been on Clariton, but I got waylaid tonight. And I had had such a good day too.

    Roughly how long does the bone pain go on? I know we're all different and mine will be what it will be, but curious anyway. I had only a bit of minor pain for a short while last evening (shot was given 4 days before) then got hit hard tonight. With the chills thing, it feels a wee bit flu like. From what I've read online, this can be common reaction.

    Anyone else have similar experience with Neulasta?

  • Fierro6
    Fierro6 Member Posts: 224
    edited June 2012

    Lisa - I will likely need rads because of the 3/10 nodes involved.  I'm not sure how they decide, exactly, but my MO has me prepared for the fact that they will want to do it, but that's up to the RO, whom I have not met.  I'm pretty popular, to have all these doctors, huh?  Most people only have one or two for their whole lives.

    Gemmie - I was pretty fortunate and only dealt with the bone pain for about 24 hours.  I've been taking Claritin right along, but I'm not sure if that's what did it or not.  I just did it for prevention. 

    Sandik - Your friends sound about as cruel as mine.  :)  At least  you're OK. 

  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    Dancetrancer. Thank you so much....I had no idea of the complications...you always have such helpful information...I read both articles. I meet with my surgeon this month and now will be able to have an informed discussion.....thanks so much!

  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    Taxol and rashes......I had a rash on my arms and legs several days after first taxol....I just used body lotion with aloe and it was gone by day four.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    I still have rashes, and am getting sick of them.  My neck looks like a map sometimes.  I will start rads a month after my last chemo.  I only have met with the RO once, right after my surgery.  He made some off the cuff comment on how I wouldn't need chemo...That was before the oncotype test. I will need 7 weeks, 34 rounds.  If I do the math correct I should start around the 23rd of July.  I might whine and see if he can start on the 16th (3 weeks after) so I can be done a week before my son's wedding.  That might be pushing it, though.  I guess it depends on my bloodwork.

  • silkuk52
    silkuk52 Member Posts: 13
    edited June 2012

    Lisa-I had left mastectomy getting 8 chemos then month off and then will need radiation as well. Was told because positive lymph node was found near chest wall. Doing what they tell me - don't like it though, because was told before surgery if I did DIEP Procedure I would PROBABLY not need rads. So much for that, but want to get any escapees as I like to call any breast cells that may have gotten away.

    Gemmie-bone pain lasted about a day. Think it might have been because I was vomiting a lot & might have thrown up Claritan. Two extra strength Tylenol helped. I have vicodin left over from surgery & will use it if bone pain comes back like before. Round #2 is Fri with neulasta on Sat. Pain med was hard to get last time because of pharmacy shooting on Long Island last year! That's what my surgeon said who put port in that was really painful first two days after. One bad apple spoils it for everyone! But I spoke to bs after port & family doc and they had to call surgeon to tell him I don't abuse pills-give them to her she is in pain. (I was crying on phone it hurt so much). So ladies speak up if you are suffering & get

    the Meds you need. GOOD DAY TO ALL!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    lisa2012 - icing nails:  works by reducing blood flow to nails, and hence chemo does not get to nails and cannot do damage there.  Some worry about any cancer cells in nails not getting hit, but it is not a concern to me...primary sites of metastasis for breast cancer are liver, lungs, brain, and bones...not nails, at least not that I've heard.  

    Meditation site: https://members.kaiserpermanente.org/redirects/listen/

    Just listened to one this morning upon awakening...great way to start the day.  

    Gemmie - so sorry to hear about the bone pain!  

    kjiberty - you could also ask if some of your rads could be doubled up (twice in one day) to shorten the time.  It can result in slightly more burn, but not too bad if you don't double too many.  I had to double my last week b/c they forgot to tell me about an additional 5 boosts, and I had flight plans I wasn't gonna change, dang it!  Another friend of mine just doubled on Wednesdays every week to shorten hers for something like a wedding, etc.   You just have to make sure you have 6 hours between each treatment to allow the skin some recovery.   P.S.  sorry about the rash (and to others as well).  What a drag.  Just wanted to add that I'd make sure that is well healed up before starting rads.  

  • Tweetyb422
    Tweetyb422 Member Posts: 119
    edited June 2012

    Chapter4 and kjiberty,



    Thanks, I just freaked out a little lol. My rash looks better, I put a call into the nurse just to let them know and ease my mind. At least I slept better last night :)

  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    I feel bad about the Lemonhead aversions LOL! I started that by posting I ate them after my 1st round interchangeably with my sugar free candy for the dry mouth. I love them and still do. Then they started showing up on chemo prep lists and apparantly into the infusion room causing aversions. Sorry friends! I still love 'em ( :

  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Dance:  Thanks for the doubling up advice.  That may have been what my MO was implying when she said I would be well taken care of before the wedding.  It's a discussion I definitely will be having because I need to go to Chicago on the 10th and 11th for meetings as well.  

    Stacie:  I have never been a lemonhead person, but I do have a package in my pantry.  I have had it since the first tx and never opened them.   

  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Regarding reconstruction and radiation - My PS will do a few fills between chemo and radiation, but the exchange won't be until after radiation.  I'm not sure what the time frame is.  He said sometimes the ROs want the PS to remove some of the saline.  He also said that the radiation shouldn't be a problem for me, but that it just makes his job harder.  He has said a few times, "Oncology before plastic surgery."  I love that about him.

  • Rose_d
    Rose_d Member Posts: 144
    edited June 2012

    Tweety,



    Glad to hear your rash looks better. Mine does not :(. It's now all over my chest, shoulder, face, feet, hands and moving down my legs. And it itches like mad, especially my feet.



    The dermatologist looked a little perplexed yesterday but assumes it's from the taxol. I'm wondering why it took until day 8 to come out. I won't be able to stand it if I have this throu 3 more treatments. The doc said the worry is if it turns into sores in my mouth or if I get a fever. He was calling the MO yesterday to talk about a plan if it gets worse.



    In the meantime I have 2 cream (one body and one face) and will hope it works.



    I had a little pity party yesterday. I have been feeling so great after the taxol compared to A/C and was just thinking how I can make it through the rest of these feeling like a normal person. And then this happens and now I'm stuck in the house because it's 98 degrees here and even the thought of heat makes me itch and of course I look like a monster. So discouraging.



    Rose

  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    Ok so I have another idea for a future discussion thread. Since the day will come when we will all be completing treatment and going on with our lives, but our treatment paths may split our primary focus temporarily with RADS and reconstruction, longer chemo etc. I will start a thread called "The Living Life Hang Out". We can start it, put it in our favs, post on it to bookmark and all meet up there together after treatment except hormone therapy (which is 5 years). It would be like the meet up spot after a fire drill LOL. As we move on we will have future mammos and life accomplishments, even deal with PTSD symptoms. I would be comforted to have a place to meet up and hang out after all this...I will need it/you. It will capture us ALL on the back end...

  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    I started a final landing thread... for anyone interested. Go to All Topics, THEN...Recovery, Renewal, and Hope, THEN...Moving Beyond Cancer, and it is "The Living Life Hang Out" thread.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Stacie- Thanks for starting the final landing thread.  Can't wait to reunite with everyone after treatment is over!!!! Love and hugs to you!!!
  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Melrosemelrose - I went to Northeastern many, many years ago.  I loved living in Boston.  Best of luck to your son!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Rose - you may want to ask your doc about switching to Abraxane, maybe???  It is not usually used in adjuvant therapy, b/c it is SO expensive, BUT, perhaps it would be clinically warranted in your case.  From what I understand, it is the same medicine as Taxol (or similar?), but it is packaged differently (something about albumin?)...so people do not have as many allergic reactions to it.  They often give it to diabetics b/c diabetics can't do the steroids (they increase sugar levels) - so this way diabetics can get the chemo without steroids.  I'm so sorry for the rash.  It sounds just awful, and you have every right to a pity party. Frown

    Stacie - I LOVE, LOVE, LOVE that idea!!!  I feel so close and connected to you gals - fantastic!!!  Thank you!!!

    I'll post the link for those who may have trouble finding it:

    The Living Life Hang Out 

  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    Your welcome Mel. I keep doing what I know I need to get through, and I'm type A obviously. I want to stay together, but staying indefinately on a chemo thread seems a depressing way to do so...

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Marcia111- My son and I visited Northeastern last summer before he applied.  It looks like a great place to attend college, especially where it is located. 
  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    Thanks Dance I didn't know how to post a link! Also, as we do RADS, reconstruction, continue chemo etc, we will all bond with more women going through treatment this year, invite them to land with us!

  • vballmom
    vballmom Member Posts: 426
    edited June 2012

    Stacie, you are amazing!

  • silkuk52
    silkuk52 Member Posts: 13
    edited June 2012

    Marcia-yup no stage 2 or 3 reconstruction of the DIEP procedure til after radiation:/

  • rn4babies
    rn4babies Member Posts: 409
    edited June 2012
    Gemmie........I got my Neulasta shot on Tuesday at about 2pm. Bone pain started Thursday AM around 3AM and continued through Sunday night. The worst of it was Friday/Saturday. I tried Claritin from the day of the shot through Monday. I don't feel it helped me.
  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    I'm getting ready to pack my chemo bag for tomorrow.  I'm going to go to the library to borrow some movies to watch on my laptop.  Does anyone have any recommendations of movies on DVD?

  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    What kind of movies do you like?

  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Anything, really except for horror.  I just want a good distraction. 

  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Just Go with with it with Jennifer Anniston/Adam Sandler is Funny

    Friends w/Benefits:  Mila Kunos/Justin Timberlake.

    Both are light and funny.  I don't like anything that is too intense while undergoing chemo. 

  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Great suggestions!  Thanks - now I have to see if they're available.

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