April/May 2012 Chemo hang out

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited May 2012

    I am going to begin chemo in June and my onco said that I could have my port in my arm or in my chest.  I'm just wondering what your experiences/opinions are.  Thanks for any input you can share!

  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited May 2012

    Hi All

    Just thought I would pop by with some words of encouragement.  I'm 4 weeks PFC and my energy is almost back to normal, for sure 90%.  Something I know we all struggle with is the hair loss but I want you to know that mine is starting to grow. White wispies mostly but in some spots its almost 3/4 of an inch long.  It also seems like the steroids are out of my system and have dropped 5 pounds.  The carb cravings will leave once your're done as well.  I can't get enough salad these days it seems since it was off limits per my MO during TX.

    I just started Tamoxifen a week ago and so far so good, along with my Herceptin TX every 3 weeks until the end of the year.  If anyone told me a year ago this is what I would be dealing with I would have never believed them.  I just wanted to say that there is light at the end of the tunnel.  I still have a long way to go but it does get better I promise.

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

    Marcia111- I have my port, upper right chest area, close to my arm.  If you decide to have a chest placement, make sure you ask the doctor who is placing it to place it so it doesn't bother you where you would have a bra strap.

    Sade- My onco said it was okay to have a glass of wine occassionally.

    Ellamilana- I just had my second infusion last Tuesday and have not lost all of my hair yet.  My hair started coming out 2 weeks after I my 1st round of chemo. I got a haircut last weekend--- had a short bob and got a very short short boy hair cut---- because I was getting annoyed with hair everywhere.  I actually made five little ponytails and cut those off myself and then had my husband cut the rest with the electric clippers with a 1 inch cutter guard.   I plan to use the little ponytails for a hair halo.   I figure that the recent 2nd treatment will probably cause the rest of the hair to fall out.    Some opt to buzz their heads rather than deal with the hair falling out over time.  I decided not to buzz it close and deal with my transformation on my own terms from having waist length hair in March 2012 to having very sparse hair now.  Whatever you decide to do or when you decide to buzz/cut, take control over the hair situation before it takes control over you.

      

  • nofear2012
    nofear2012 Member Posts: 160
    edited May 2012

    Dancetracer - Thx so much for the info, I will be talking to my onc dr about yur suggestions. I started rinising w the baking/salt stuff hopefully that keeps the thrush away.

    Myleftboob - Thx for yur encouraging words, that is the 3rd time I heard/read there is light at the end of the tunnel, it is just hard to see the light when u are stuck in the middle of the tunnel. But I believe!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited May 2012
    myleftboob - thanks so much for the encouragement!!!  
  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited May 2012
    Myleftboob- So glad you dropped by and gave us such encouraging words!!!  I follow the chemo thread that you are on and learned a lot from you and other gals on that chemo thread!!!  Please come back anytime!!!!
  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited May 2012

    Marcia1111- what kind of chemo are you getting? The chemo nurses told me that Adriamycin is hard on veins, and that it's best/safest to use a vein that has flesh around it. My port is in my upper chest too. It did make it easier for me to use my phone and my tablet since I could use both hands. Edited to add - during treatment!



    MLB - thanks for stopping by! Hugs!

  • sandik
    sandik Member Posts: 482
    edited May 2012
    Made it through another day! Woohoo! Man was it hot out today! I can't wait for the rest of this hair to go so I can just got bald already! My biz partner said the back of my head looks like the globe, with all the different continents. haha I'll wear a scarf for a wedding, but I really do not see me putting that wig on. I told my partner that he can use face paint or something and paint something on my head every day. 
  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited May 2012

    Marcia1111, my friend had a port in her arm and it was too uncomfortable for her so she had it taken out.  I'm not sure if it was where it was placed in her arm, but she was too active for it to be comfortable.  That doesn't mean the same would be true for you, just passing on what she said.  I had one put in my chest last Monday.  It was more painful than I expected, but it's getting better.  Good luck!

  • Fierro6
    Fierro6 Member Posts: 224
    edited May 2012

    Mine's in my chest, and I honestly can't tell it's there unless I reach up and touch it.  After reading different reactions on here, I feel blessed that I've tolerated it so well.  I must add, however, that I am currently sleeping in a recliner (due to a drain still in place) but even when in bed, I am NOT a stomach sleeper.  That might have something to do with it.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited May 2012

    Melrose, what a good idea about using your own hair for a hair halo.  Are you making it yourself or is there somewhere that will make it for you?  I, too, wanted to take control of the hair situation and cut mine short.  Liberating feeling.  I don't know if I'll lose it all, though, because I'll be on CMF.  I like to be prepared.

  • darnette
    darnette Member Posts: 45
    edited May 2012

    i found you again I see you was tonight?? I would ask my doc first.. I know HOW YOU FEEL while doin my AC treatment I was told not to drink? Now that i am doing Taxol my Dr. told me i can drink and can do anything i want???? All I asked about was wine he was like you can have vodka, rum, whisky?? I said i don't drink no damn whisky?? he said I am just letting you know you can do what you want?? LOLOL I am glad you rin great spirits 

  • darnette
    darnette Member Posts: 45
    edited May 2012

    sorry that was to sade

  • sandik
    sandik Member Posts: 482
    edited May 2012

    I sleep on my stomach and my sides. Anything but the back. I dont feel my port at all. It does feel like it moved a little if that's possible. Like it was flat to the skin and now its not. It points down a little.

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

    Jeanie57- Someone has posted a thread on how to make your own halo that I checked out.  I have a few other ideas of my own about making the halo that I just haven't put into action just yet.  I'm planning to make whatever hair halo and hair hat attachments myself.  It will be just something fun to do..... I'll let you know if I'm successful with this "hair" adventure.

  • Marcia1111
    Marcia1111 Member Posts: 368
    edited May 2012

    Your responses have been so helpful!  I am not sure exactly what my chemo will be.  I will find out more after my appointment on May 31.  The onco said the main advantage to having the port in the arm is to avoid a scar on your chest.  i'm probably going to have it in my chest, though.  It's so helpful to have others who've been there respond with their experiences.   Thanks!

  • Krazycatlady37
    Krazycatlady37 Member Posts: 40
    edited May 2012

    Dance tracer -- it's a cocktail the pharmacist had to mix and it tastes like cough syrup. It's called nystatin, that's what's on the bottle but it's missing the antibiotic ingredient cause they were out. but that wouldn't change the taste.



    I get my next transfusion Tuesday so I will keep with the homemade recipe until then.



    My mouth has a gnarly cold sore now too. I got a valtrex script called in so I am taking that now too.

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



    Marcia1111-my coworker had BC about 2 years ago and showed me where her port had been removed. She and I are the same age (51); I'm a little fairer skinned than she is, but her scar didn't look bad to me at all. (Nothing like my mastectomy scars!).

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited May 2012

    Lol thanks Darnette. I plan to find out later today when I call for rx refill.

  • chapter4
    chapter4 Member Posts: 155
    edited May 2012

    Ive had wine throughout my AC treatment....but not until I'm past all the lousy days...my OC says its fine.....told me whatever helps get me through.....and the wine does....I don't have any desire for it the first week after treatment...but the second week, when I'm feeling good again...it's wine time for me :)

  • vballmom
    vballmom Member Posts: 426
    edited May 2012

    I've got my ticket to Chemoland.  Heading out in a half hour!  I have decided to think of the chemo transforming me into a new woman. Not sure what she will be like on the other side, but I've decided to love her no matter what.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited May 2012
    Krazycat - the cocktail that I didn't like was a mix of Nystatin, Lidocaine, Benadryl, and Maalox.  The Lidocaine made my tongue and lips numb.  It's called magic mouthwash.  Blech!  If you had mouth sores I guess it would be good, you'd want them numbed up.   But blech, I agree with you!  The straight Nystatin is not bad at all (to me).  Somewhat orange tasting.  I think it's the other ingredients that make the cocktail so yucko.   
  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited May 2012
    vballmom - that's a great attitude! Best wishes today! 
  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited May 2012
    vballmom- Good luck today with the 1st infusion!!!!!
  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Thanks for all the encouraging words yesterday.  I am feeling a little better today, which is good because I have to drag my sorry butt into work. Luckily I sit at a desk most of the day.  Port area is just tight now, not so much sore.  I'll just have to have help if I need to do much lifting at work, but I've got plenty of coworkers who will help me out if I ask.

    Sade- My oncologist said I'm ok to have an occasional drink if I want it, but that I can't count anything with alcohol or caffeine towards my daily fluid intake.  (I'm getting TAC chemo.) 

    I do keep forgetting that I need more sleep right now.  I already suspect I'll pass out pretty early tonight.

    I don't really mind the flavor of the "magic mouthwash," mine is fruit punch flavored.  Maybe some pharmacies add flavor?  I get mine made at the pharmacy attached to my treatment center.  They're faster and friendlier than anywhere else.  

    Good luck today, vballmom! 

  • Stacie
    Stacie Member Posts: 607
    edited May 2012

    Good morning everyone. Gearing up for a trip to S.Ca for business and pleasure this week. I am humbly learning how to accept help. I texted ahead to relatives food restrictions and needs. And asked my HS Drill Team childhood friends if we can spend our day on the beach so its not all walking. They are packing food and bringing me a chair and umbrella. We used to go in our teens so it'll be peaceful and nostalgic with the best girl company EVER. Fatigue is high but I have help every day there.

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

    Vballmom - good luck today! Everyone says to drink water - it really does help. I take the big cup they gave me in the hospital and drink water all during treatment. Nibbling on food/snacks is good too, and the hard candies (like lemonheads).



    Cottontail - glad you are feeling better and thinking of you working today.



    Stacie - your trip sounds wonderful. Enjoy the beach and your time with your friends!



    I'm making my appointment to go later this week for prosthetics (looking ahead to parties and our anniversary next weekend). Gosh, they sure look expensive; insurance says it pays "20 percent of allowed cost" and the high comfort ones I'm looking at are between $150-$200. This should be interesting.

  • Fierro6
    Fierro6 Member Posts: 224
    edited May 2012

    My chemo was to start tomorrow, but because of this stubborn, high-output drain, it's been postponed.  I am to call them when the drain is gone (and I've had a TE fill) to get started.  Meanwhile, I have a LGFB class scheduled this afternoon.  I don't LOOK like I'm in cancer treatment, haven't lost hair yet, etc.  Should I wait to take the test, or should I keep my appointment.  I realize, since I am supposed to leave in 3 hours, that I'm asking last-minute, but I just thought about it.  

    One friend who has been through this said that I can re-take the class (just have to take the makeup with me, since you only get one free kit) if you need a refresher after the SEs kick in.  I'm thinking maybe that's the best plan, but I wanted a bit more input.  Thoughts?

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited May 2012
    Fierro6- Go for it!!!! Attend your class!!!! You don't have to wait until you have SE's to attend.  It is a great time to go when you feel good and are well enough to go!!!!  Please be patient with the drain.  I know it's hard but it's doing it's job.
  • Fierro6
    Fierro6 Member Posts: 224
    edited May 2012

    Thank you.  I will.  It's something that is pretty out of my comfort zone, but every other aspect of this cancer adventure has been, too.  It's already making me a different (better/stronger) person by forcing me to do things I wouldn't normally do.  

    As for the drain; I curse it, gripe about it, whine and moan, but I do NOT want it removed even one day early.  I know the pitfalls of that based on all I've read.

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