Starting Chemo March 2015

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  • SueH58
    SueH58 Member Posts: 632
    edited April 2015

    Thanks for your comments to far. I've been reading your posts and already have warm feelings for you all. You're all so unique and fun and interesting. Too bad it's cancer that brings us all together.

    Katy, curious as to what you would have done if your score was a 20. I know there's no going back.

    Mary--I'm so sorry to hear about your port, but I love your sense of humor. May as well buy the U, C & K right away to save yourself a trip!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Leigh- you are a beauty! I would never have noticed any scalp if you didn't say.

    Hang in there

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Sue- I honestly don't know what I would do with a 20.

    I can tell you an interesting thing my MO told me when we were discussing it.

    One patient of his refused the test. (It's about $4K but ins usually pays). When asked why she said she was having chemo no matter what the GD number came back as. So why waste time and money she said. If I get any advantage at all, I'm doing it!


  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Mary- I'll get the u.c.k. If u do! Baaha

  • Leighrh
    Leighrh Member Posts: 317
    edited April 2015


    I ordered this shirt.... I plan to wear it to chemo sessions... of course none that my mother will attend.... but the rest of them :)

    image

     

  • Jem27
    Jem27 Member Posts: 15
    edited April 2015

    Leigh, I  love the T shirt.

     I am sitting waiting for round 2 to start . Hopefully things will go a little smoother this time. Not having a port and injecting the stuff straight into a vein creeps me out  but that part went ok last time. Big deep breath.......

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Leigh! Love the shirt!

    Mary- I read the linked articles. Exactly why I am always making snerky references to pink tutus and the like.

    I posted it to my caringbridge blog (which everyone said they wanted me to do, but I'm pretty sure nobody reads it- and it's not all negative! Promise! )

    It might be that every time you get on the site you are pestered for donations. I find it offensive.

    This site, BCO, accepts donations, but it's not in your face.

    In case anyone missed it yesterday, Trvler made a donation to honor this group: the "Starting Chemo March 2015" group. There is a thread if you click on her avatar you will find it.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Jem: thinking of you today, on Spa Day 2! Check in and let us know how it's going! We are here

  • eheinrich
    eheinrich Member Posts: 792
    edited April 2015

    Sue,

    My oncotype score was a 19. The score only rates your chance of chemo helping assuming you do 5 years of Tamoxifen. Some of the side effects of that include depression and fatigue which I have struggled with for years. I also will have to change some of my psych drugs as the cannot be taken w/ Tamox. If I can't tolerate Tamoxifen if I don't do chemo then I've done nothing to try to prevent recurrence. I'm 46, if a few months of shit can help me get 40 more years I don't see a problem with that.

    The decision is based on so many factors and so individual.

    Good luck making yours

    ~e

  • DavisD
    DavisD Member Posts: 338
    edited April 2015

    Mary-I'm so sorry you're going through this port crap. I say light up if you want. I've got a stand by stash myself and I'm 54! From one experience, it ain't what it was in the Midwest in the '70's, ha! Or maybe I'm just a lightweight these days.. Anyhow, I will be thinking of you and sending you a big gentle hug through the internet.

    Leigh-I love the tshirt! I'm starting to care far less about offending others...We need to stay feisty with what were facing.

    Katy-I love the bracelet. Where did you order from? I'm not big on wrist jewelery but I love this! It's so good to always hear you on this thread and I would be worried if you were MIA for half a day I think...maybe rely too much on your steady humor, intelligence and insight.

    Just got my fed ex of lav coc oil and some new scarves so I'm pumped, haa! small pleasures

    Love to you all


     

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    I am wondering about Supernannymom and Princess. Has anyone seen them lately?

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    and again.... Shaz.....where are you

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Diane- haha I made a mm tincture for my standby stash. Can't smoke.

    MO couldn't care less.

    And you are too sweet. I will PM you details on the infinity charm bracelet.

    Still looking for the perfect F in solidarity with NinjaMary

  • DavisD
    DavisD Member Posts: 338
    edited April 2015

    Loved the lavender coc oil! We would definitely smell good if we all congregated in one room.  Theresa aka Shaz and Princess and several others-check in with us. You're probably doing something important, I'm off work until Tues so I'm trolling..probably obnoxiously.

    Just ordered five more scarves/pre tied. Liked the ones I got and I'm thinking about ease of getting ready for work next week. Won't have to worry about having hat hair after this is over. Plenty of cover ups.

    Anyone else have this internal restlessness? like what I think akathisia might be like.?  I'm off steroids so I don't think its that. Just feels like I can't stop moving my legs arms etc. Just cant get comfortable in my own skin right now.

  • rleepac
    rleepac Member Posts: 755
    edited April 2015

    As far as the coconut oil goes, it is solid up to 76 degrees and then it will liquefy. Just spoon, or finger gouge a little out and rub it between your hands (if applying topically) and it will melt real quick-like. If using it in your mouth, it will liquefy quickly too. A little off-topic but it also has a high smoke temperature so you can use it to fry veggies and things and it takes a lot higher temperature to make smoke. And, it is a medium-chain fatty acid so it doesn't contribute to cholesterol which makes it even better than olive oil - my PSA for the day :)

    I've tried reaching out to Shaz but I haven't heard from her. I'm sure she will check in...just hope she's out there doing something fun and not suffering from nasty SEs.

    I shaved my head quite a while ago and I still have some areas that are like stubble and I have to re-shave. I'm under the impression that those follicles will probably fall out during the Taxol but for now they are hanging on and being annoying. I've been shaving my underarms and legs about once every 10 days.

    Bekah

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Diane all is well here. Getting ready to head out for a bike ride. I still had a few days of mouth ickiness after chemo no. 2, but I think the icing helped it go away faster. And rub the coconut oil on your gums and tongue lol! Just rub it everywhere haha. It is great for heels, legs, hands too

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    by the way, does anybody have prune looking fingertips?

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Rleepac, the Virgin coconut oil, not the extra Virgin, makes yummy home made French fries!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    my fingernails are looking good! They give me ice packs to rest my fingers on during chemo (must be akin to cold cap theory) and I treat the cuticles and underneath the nail with tea tree oil every day. Maybe it's working?

    Oh duh, Theresa, sorry. I see now you said fingertips, not nails. Oops! Maybe someone can benefit from the nail advice......feel like a dork now

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Katy, it isn't my fingernails, but the tips of my fingers. I use tea tree oil. I have Dr. Bronner tea tree oil soap in all my containers and I use that a bunch every day. It is like the tips of my fingers look shriveled like if i have been in the bath tub too long.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    yes I just revised my post, while you were writing yours.Chemo brain?

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    No worries! They don't hurt and I haven't lost any feeling, they just look weird. I am trying Na-PCA spray to try to get some hydration into the area. Last round, I iced feet and mouth, but was lazy about fingertips, so when I do round 3 next week, I am going to ice fingers too. I do a basin filled with water and ice cubes as cold as I can stand it because an emergency room nurse I know said the freezing cold ice water bath is more effective than just icing. So I am going to try that with my hands too. And my husband also said if I add some salt into the water, it will be even colder because the salt allows for an even cold temperature I guess. Hell, maybe I should throw the lavender coconut oil in there too lol!

  • DavisD
    DavisD Member Posts: 338
    edited April 2015

    I think I'm going to order one of the lesser expensive bracelets. It would be nice if we all had one to remind us of our connectedness even though I think of this group often anyway. I hope some day we will all be healthy and able to meet in person. Some luxury spa or something sponsored by BC org ha!

    Good to hear from you Theresa. I used the coconut oil on my teeth and gums and was able to enjoy pizza for the first time for a long while.


  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    love the idea of a spa reunion. With our F bracelets! Hah!

  • Carrie37
    Carrie37 Member Posts: 331
    edited April 2015

    Katy,

    You serious crack me up! "Eff that I'm plenty aware." Literally LOLing here! Thank you also for the words of support and advice. I do think my little rash is yeast. I remember your picture and mine is not nearly as bad. I struggled with yeast after I had my son and was breastfeeding. My a-hole doctors office never called me back today. So irritating. Not sure which is more irritating--they didn't call me back or me not wanting to bother them so I didn't call three times. Ugh! My mouth sores are a little better today but it pains me to eat. F cancer is right!

  • Carrie37
    Carrie37 Member Posts: 331
    edited April 2015

    sloth, thanks for the tips. I have noticed my throat being sore too. I feel like my SE are coming out of the woodwork so to speak. I didn't have issue with my mouth or this rash until after round 3 of AC. I get one thing under control and something else pops up. Stupid cancer.

  • Carrie37
    Carrie37 Member Posts: 331
    edited April 2015

    Hi Sue, I never had an Oncotype test. For me, the decision to start with chemo came after my HER2 came back positive and they found the cancer had moved to my lymph node--thankfully it was only one. I know lots of people who just want to get their tumor removed but I guess I was more concerned with making sure the cancer didn't spread anywhere else. Just my story though, everyone is different.

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Carrie, can you get some of that yeast infection cream for the downstairs or basement area (as Katy calls it!) and see if it works? Just a thought. I know the packages come with that little tube of cream which maybe you could use on your rash. Doctors are bastards when they don't call back. I hate that. Or maybe the athletes foot spray or jock itch stuff?

    Diane, so do you think the coconut helped? Mmmm, pizza!

    Just got back from bike ride, loving the endorphin buzz!

    So nobody has the fingertip issue?

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Carrie- even the hydrcortisone cream will give you some relief until the fu$ktard calls back.

    Theresa I had to laugh after I burned my finger AGAIN (chemo brain) trying to cook.

    my left index finger shriveled up like it was in the bath too long. In solidarity with yours

    In case you were wondering, I made nice pork strips with carmelized onions, apple and sage with roasted Yukon golds. Finished by deglazing with a little almontillado sherry and whipping cream. A friend came over and slaved in my garden 3 hours. I felt I owed her a good meal. Although my mouth is a bit dead at the moment, it brought back great memories as it was one of my mother's signature recipes. And other than burning my finger, I didnt mess it up too bad

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Katy yum! I want to come to your house for dinner!

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