January 2013 chemo group

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Lee - I have the burning leg muscles too! I asked my MO about it and he said this too is a common SE of taxotere and a very important reason we need to keep working out each day.  Easy for him to say, eh?  Good luck with your next treatment.  Are you on #4?

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  • LisaMM
    LisaMM Member Posts: 120
    edited March 2013

    I love the "name" games! I once took care of a patient named Lemmon, and I kid you not, he had two brothers- named Orange & Lime!!!!! I actually met them! Hiw crazy is that!



    I agree with you Skigirl- where is the chemopause???????

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited March 2013

    Ok I have a stupid question. I may not know the answer because not all my hair is gone yet. I'm wearing a scarf on my head to catch the handfuls. Why are the scarves worn over the ears rather than behind? I don't like to cover my ears.



    Oh!! Forgot to tell you. At my treatment, there was a woman using cold caps. She was tucked in the corner, though I don't know if it was by choice. My husband noticed her, and I said, oh, they must be cold caps. The nurse asked how I knew. I said, well my girls on the boards! Haha



    Do any of you have Rosacea? I have a terrible, bumpy itchy rash on my cheeks. Oncologist said its probably chemo aggravating my Rosacea and to try Benadryl. (which I can't bc I have to get the kids today). So now I have to be bald and blistery. I look terrible.

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  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    julesDenver, thanks for passing along what your oncologist said regarding the burning muscles!  Yesterday's walk was the hardest - today's was a little easier although my time was a little slower.  At least we know what it is now (!) and I agree, it makes it harder to walk/exercise but I keep thinking about those reduction in recurrence statistics (with walking) and that's about the only thing that gets me out there and doing it.  

    I use an app called Runkeeper and yesterday I reached some new goal (can't even remember what it was).  All kinds of irony in that considering I was having such a time making it around the track. 

    And yes, you probably snorkeled at Tunnels.  The two farthest north (accessible by car) beaches are Tunnels and then a bit farther up, Ke'e Beach.  Hawaiian Air has some fairly good airfares right now - at least from Los Angeles (or they did a few weeks ago).  

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  • smethot
    smethot Member Posts: 161
    edited March 2013

    Lee-more on reduction of recurrence stats with walking, pls?

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  • LisaMM
    LisaMM Member Posts: 120
    edited March 2013

    MandyNJ-try some benedryl cream to the rosacea, it may help & it won't cause any drowsiness.

    Thanks for the tips about the tinglong ladies, I will be checking with my onco about the supplements!

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  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    Shannon - the integrative physician at the Disney Cancer Center included walking 30 minutes a day as part of my "prescription."  I was already walking 20 minutes per day. She cited studies regarding daily walking and recurrence.

    Here's a start for you -

    http://www.health.am/cr/more/walking-decrease-breast-cancer-recurrence/

    I'm waiting for fills right now and on my iPad and just did a quickie search.

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  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    Here's another link -



    http://www.health.harvard.edu/newsweek/giving-cancer-its-walking-papers.htm

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Lee - our MOs must've read the same articles :). Mine told me the single best thing I can do is get minimum of 3-5 hours of exercise per week. He was using that as the most effective way to head off se's but the percentage of cutting down on reoccurrence was significant. Some days I feel so yucky or tired I get the 30 min done in three 10 min increments.



    Mandy - I have rosecea and my splotches come and go. I have prescription metro gel and it seems to mildly help. I've never looked worse...bald head and splotchy face. Can't wait for my eye brows to go :)). I will be under my rock if you need me (when I'm not on my elliptical, that is).



    Lee you are doing fills during chemo? I wanted to do the same but my PS wouldnt agree to it! How is it going?

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  • Bryona
    Bryona Member Posts: 214
    edited March 2013

    I'd like some of these cabana boys, too:

     But don't worry. I share.

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  • SherylB
    SherylB Member Posts: 450
    edited March 2013

    MandyNJ,

    I hate things on my head and always have. Therefore I wear the lightest weight doo-rags I can find and put them behind the ears. I think they do look better over the ears at least on my head but no way could I tolerate that. I love cold weather and even get irritated if I need to put muffs or a scarf over my ears even for a short time.  So I go for comfort rather than appearance.

    I don't actually have rosacea but do have a face that turns red easily. I noted after tx #2 that I got a rash across my cheeks and was redder than usual. For me I think it was the steroids but it went away in a day so didn't mess with it.

    Take care, Sheryl

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  • martha323
    martha323 Member Posts: 79
    edited March 2013

    Greetings, Amazing Women - just finished reading about four pages of posts! I'd love to thank more people individually, but when I tell you that my husband keeps finding food in the cupboard next to the refrigerator, I think you'll understand my short attention span. (I've been breaking my usual rule of not leaving the kitchen after heating olive oil in the pan. No such thing as a whistling saute pan!)  I've tried taking notes on posts, but at some point in the last three weeks I've developed abnormally small handwriting.

    Mandy, happy to hear that you are much much better re: side effects.  Bryona, Congrats on finishing AC! Best wishes to all who are starting Taxol soon, and to those have been on it or taxotere all along.

    ywheels and Nicole, your remarks regarding feeling in an altered state resonate ... happy to hear that it abated after AC, Nicole. Some days I  fluctuate between engaged and disengaged - disconcerting to be sure...

    I really enjoyed the name exchange - cracked me up and ditto: the ideal cabana boy competition!! It's uplifting to hear about vacation plans as well as past travel adventures. Thank you all for a good read this evening.

    AC#3 yesterday .. keeping my fingers crossed and hanging on to the good advice I received.

    Prayers for all and hugs, Martha

      

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  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    julesDenver, yes, he's been doing fills toward the end of each chemo cycle.  It seems to be going okay thus far.  I just got home and am tired but that's about the only thing I notice afterwards - feeling tired.  

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  • cancernoway
    cancernoway Member Posts: 90
    edited March 2013

    I have some additions to the name game.  I know a lady by the name of Coral Reef, another by the name of Anita Dick (yes, really and the best part is her maiden name was Bigger, I so wanted her to hyphenate), and my moms gastroenterologist is Anal Ram, WTF!  Do you think he picked his profession because of his name?  I also had a surgeon name for a kidney stone named Dr. Butcher.  Scared the shit out of me.

    I had some tingling in my fingers about day 8 after #2 but it only lasted about 3 days and went away.  I'm gonna talk to my MO about it on Thursday before #3.  Excited to be almost 1/2 way there.  The other thing with my hands is my fingers are always cold.  And my hands are a hot mess since my OCD has me washing and antibacterial gelling the hell out of them.  Anybody have a good recommendation for lotion that is healing? 

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  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    cancernoway, I use Gold Bond Ultimate Healing Lotion with Aloe.  It was the only product that helped my husband's hands during his bout with dermatomyositis (an autoimmune disorder).  I'm a compulsive hand washer as well.  :)

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  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    cancernoway - you might be interested in this thread as well.  Here's a link (in case you haven't already checked it out): 

    Triple Positive Group - 

    http://community.breastcancer.org/forum/80/topic/764183?page=529#idx_15846

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  • Nicole503
    Nicole503 Member Posts: 295
    edited March 2013

    Martha323 ~ Glad to hear you made it through AC #3.   Wishing you ease and patience with whatever SE's may come your way.  I will be thinking about you this weekend.  Keep breathing.......this is all temporary!

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  • cancernoway
    cancernoway Member Posts: 90
    edited March 2013

    LeeA - Thanks for the info, I will check it out.  Will head to the store tomorrow and pick up some Gold Bond. 

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  • Bryona
    Bryona Member Posts: 214
    edited March 2013

    Mandy, I didn't like covering my ears at first, either. I wore a buff, and I swear I looked like Dopey:

    I've started wearing the buff over my ears now, though, mostly because that seems to be the optimal position to keep it from slipping back on my head. I still have occasional days of hair/scalp pain, so keeping things from shifting around matters. It's okay with the buff because it's lightweight and because I don't have it completely covering my ears.

    Martha, wishing you the best of luck with your AC#3 SEs.

    Jules, just remember: The cabana boys will love you no matter what you look like. I think it's a law of physics that we will all be gorgeous when in the presence of beautiful cabana boys.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Bryona you are a women after my own heart.

    Cancernoway I love that you wanted Anita to hyphenate her name.

    Jules, Lee, I'm getting my final fill next week. The MO and PS said as long as it was done the day before, day of, or day after chemo it was fine. I guess kind of silly if the RO is going to make them take a side down for radiation in May. But whatever. I've already gone this long being lumpy and lopsided. I want to "test drive" the bigger size to be sure I know what I want when it comes time for recon. I'm smaller now than most of my life, but it is nice being able to button my shirts and not come popping out. Though, it still doesn't feel like me.

    Shannon I love the new pug pic.

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  • kiwikid
    kiwikid Member Posts: 204
    edited March 2013

    So skigirl i wonder if you have what i have... I have surgery site lymphedema! Not breast or truncal, just localised and it will go. He suggested a firmer bra, who knew, I've been very lazy and only wearing t shirt bras since surgery.

    Never mind, the boob is coming off in a month, he's going in through the same scar around the areola and will take all the boob out and put a permanent silicone with permanent expander under it. No exchange surgery and only 4 fills.

    Two more sleeps till ac 4, yahoo!

    Wishing you all a nice weekend.

    Xx

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited March 2013

    I totally forgot... I was on a group tour in Spain back in 2000. Everyone had name tags, including Clive and Anita Beaver... Yup that's right... Anita Beaver. My step sister and I giggled the entire two weeks we were there... They were a very nice couple. We just couldn't help ourselves.

    Kiwikid- I'm going to ask my PS about the swelling and 'hard' tissue I have. It does seem to go down a bit if I wear a firm bra or compress the area. He did say it would take a long time to have everything feel normal.

    I would like to reserve a chair for the Hugh Jackson cabana holy crap is he hot pool. Please and thank you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Skigirl~If you get Hugh Jackman, then this old cougar wants Brad Pitt!!!

    I've had the hots for him since seeing Thelma & Louise in 1991. I don't like many of his movies, but oh boy, I like him! Also, since I'm older, I think I should get 2, so I choose that hot fireman on Chicago Fire. Taylor Kinney, who plays Kelly Severide. Ooh la la!



    Blessings

    Paula

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  • Jubby
    Jubby Member Posts: 85
    edited March 2013

    Smethot, Breast Cancer Network Australia dedicated a big section in their latest newsletter to exercise. Might be worth a read... http://www.bcna.org.au/sites/default/files/beacon_61_-_for_web.pdf



    J

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  • duckiedee
    duckiedee Member Posts: 45
    edited March 2013

    Well if you girls get Hugh and Brad as cabana boys, then I'm claiming Daniel Craig!!! Did you guys see him in Skyfall??? Whoa - he can be my 007 anytime. AND my cabana boy, too!

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  • SherylB
    SherylB Member Posts: 450
    edited March 2013

    Ok I am putting in my request for Sam Elliot to be my cabana boy. He just gets better with age, like a fine wine. HHhhmmmm!

    Sheryl

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    duckie I would wrestle you for Daniel Craig, but since you did speak up first I'll play nice and take two for consolation - Adam Levine and Ryan Gosling.

    Sheryl you crack me up.

    I noticed yesterday that I seem to have hair growth on my legs. Weird thing is that it isn't the typical stubble that would grow back - you know the 5 o'clock shadow type. It seems to be baby fine. I do believe my head is getting the 5 o'clock shadow going though. How is everyone's brows/lashes doing? I'm still wondering if the Brian Joseph's did anything at all for me or if it is still a matter of time and those hairs for whatever reason just weren't going to take the leap of faith (or fear).

    We are heading to do a St. Baldrick's shave-a-thon today. My DGF is re-shaving her head. Doesn't seem like much of a commitment to her since she already has a buzz cut going (she shaved her head the day I shaved mine). But it is the thought that counts. St. Baldrick's is a foundation that raises money to help fight childhood cancer. They are one of the largest funding organization for childhood cancer research. The beautiful part is their fundraising costs are 16%. Now that is a good organization! Funny part is that I never would have considered shaving my head for something like this, but now that I've been here I think I would do it. A buzz cut is a heck of a lot easier to sport than the shiny bowl.

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  • Bryona
    Bryona Member Posts: 214
    edited March 2013

    Hey, now, ladies! I know I said I'd share, but if you claim ALL my cabana boys, who will be left for me?

    kiwikid, I'm on day 4 of AC#4, and I have to agree with Soteria and Nicole: it's MUCH easier than AC#3. I'm so excited for you being almost done!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Oh my! Sam Elliot! I agree, he just gets better n better! Adam Levine! Maybe I can't touch, but I can look! This vacation just keeps getting better! Whoo!!!!



    Come on girls, who are bringing?



    Bryona~I'm so glad AC 4 is going better for you. So far, I'm doing great on taxol #1.



    Blessings

    Paula

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  • ywheels22
    ywheels22 Member Posts: 230
    edited March 2013

    Nicole and Martha: thank you for sharing your same feelings and for letting me know it will come to an end after AC. I sure hope it does for me. Dreading AC #3.

    Bryona: so glad AC #4 is eaiser. My AC#3 is next week, ugh!!!! Might have to take lots of pain meds (have percoset and vicadin!) just to sleep through it!

    I love the cabana boy photos! I could use a cabana right now. It is 30 and snowing here. Yuck!

    Best to all with minimal SE's!

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