September 2013 Chemo Group

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    kj - awesome on the skin holding up - I swear that skin care regimen is the bomb!  I have given that to so many people and 100% of them did great with it.  I didn't even have rads but I feel like the skin care fairy!  One person's RO even adopted it as the skin care regimen for their center.  You can deduct mileage, and all other associated and qualified out of pocket health care costs, if the total exceeds 10% of your adjusted gross income.

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    Betterday, I hope your back pain goes away soon.  I know I get scared whenever I feel odd pains in my torso or head.  Grrrrr.

    Lighthouse, I keep hearing over and over again that it takes about a year to get back up to full speed.  Our bodies are working really hard on the inside doing all kinds of repair work.  I hope the docs are able to help you out with your symptoms.

    Running,  that PT sounded so helpful.  I'm planning on asking my BS for a referral to a LE PT when I see her today.  I think crying can also be so healing for us.  Congrats on the haircut.  Just getting a little trim like that can make everything look so much better.

    KJ, ouch!!  How to they manage to find that one remaining nerve?  I love all your IMRT sayings.  They make me smile.  I have a long day today similar to your day yesterday.  I have four medical appointments.  BS, RO, MO and blood draws.  I'm glad the skin care plan is working for you.  I start rads in a few weeks and I'm very nervous about the burning issue particularly in my armpit area since it's already hypersensitive and I have very fair skin.

    Mama,  whoo hoo on not having to see the BS for a year!  I'm amazed!

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited March 2014

    Wow kjsimpson

     that was a long full day! But sounds good considering....all a step in the right direction!

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  • PeacockGirl
    PeacockGirl Member Posts: 162
    edited March 2014

    bummed to see a lot of us still suffering long after chemo and surgery have finished and we thought that was the hard part? I've got continued nerve pain in both elbows, both wrists and I can barely make a fist with either hand when I wake up in the morning.  A friend thinks my neck is out maybe due to having my arms overhead every day for rads for 6.5 weeks. She suggested going to the chiro or masage. ( I probably should do both of those, can't hurt anyway) All I know is that I still can't wear my wedding ring so I know I'm carrying around a ton of extra fluid oh and the extra 13 pounds I gained on chemo isn't helping. I imagine rads have something to do with that, I liken it to getting puffy and retaining water after a sun burn. Today I'm supposed to go back for a "nurse check" on my armpit (doctor not in the office today). It actually healed miraculously in about 3 days when I finally got the silver sulfur cream. Turned brown like fried chicken and all peeled off. No more excruciating pain. I can even fully reach my arm overhead and behind me where that would have sent me into a white hot painful tailspin a week ago. I actually think I will call and cancel the appointment. Really my armpit is 100% fine again. 50 miles and going back to the center so soon have my stomach turning a bit.

    There are days I'm amazed at how good I feel and there are days when I stand up out of a chair I can barely walk correctly from the pain in my feet, legs etc. Once I get to moving I'm better but there are mornings I feel 94 instead of 44. I had a lady in the grocery store comment "nice hair cut" the other night. I replied "hey I'm just happy to have hair". For some reason? I think she was a fellow sister. I find it hard to believe anybody would "cut" their hair this short. Everybody tells me I Iook great in short hair but they love me and are good cheerleaders.

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited March 2014

    I am one month post chemo & have no strength in my legs, even arms. I tried to do a few stretches/exercises the last two days & my legs feel like I walked 100 miles! I didn't gain any weight on chemo but can sure tell I haven't been to the gym! Wow, at age 60 it only takes a short time for that belly to go South & turn to Jello.

    Now I need to go back & find the cream suggestions you all so nicely listed for radiated skin.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    vintage - here is the skin care thing - look for the post by omaz, Jan 18:

    http://community.breastcancer.org/forum/80/topic/764183?page=142#post_2810892


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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2014

    Vintage Gal, That strength should start gradually coming back soon.  The chemo takes a while to leave our system, it seems.  Hopefully spring will bring nicer weather.  The outdoor activities that acompany nicer weather will probably help all of us with our strength.

    Peacockgirl, Glad the skin is healing and feeling better.  I hope the nerve pain improves.  I feel like I have been retaining fluid and gaining some weight too, despite the fact that I have been eating very healthy.  This may make PS happy, but it does not thrill me.

    Simplelife, Definite hair growth happening for you!

    Mama, Yay for no visits to BS for a year! 

    KJ, I hope you got some rest; that is an exhausting day of appointments.

    Running, Hooray for the haircut!  I am looking forward to that day.  Scary when 14 feels balmy.  We are at 23 degees, and I am contemplating going outside for a run/walk.  I am just so tired of being cooped up inside.  Normally I would never run in that weather, but it seems so warm!!!

     

    Betterday, I am so sorry to hear about the back pain; it is so hard to just blow off things like that these days.  Everytime I get abdominal pani, cramps, etc, I think the worst.  I hoep the pain eases.

    LHL, You are a very busy mom trying to keep up with very busy kids.  That is exhaisting non chemo.  Don't be afraid to delegate tasks so you reagin your energy.

    I am about to put my running shoes on to see if that will motivate me to brave the cold  and get outside to exercise.  Wish me and my lack of motivation luck.

     

     


     

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  • 70charger
    70charger Member Posts: 963
    edited March 2014

    Dang!  Here I am 3 1/2 months PFC  & I have a nail coming off.  Problem is, it is still attached on one side.  If I cut the dead part off I will have an L shaped nail.  Sure, just because I want to go to Mexico & walk on the beach, this happens.  Also,  when in chemo, from what I read, I kept looking for a black/ grey nailbed,  which I never got.  My nailbed is all white. Double bandaids here I come for a long time I guess.

    Instead of a pocket party today, I've decided to take everyone in the trunk of my charger to a drive-in movie! It has a REALLY big trunk & everyone should fit comfortably.  Oh but please go to the washroom before we leave as it could take awhile to find a still standing Drive- in. And be really quiet when we get there, wouldn't want to get caught smuggling you all in.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    There's a drive-in here in San Diego, Charger, & it's on your way to Mexico! I'm in.

    Made the mistake of reading the pathology report from my MX today. The line that reads, "No evidence of neoadjuvant therapy is identified in either the primary tumor or within the lymph nodes with metastatic disease" is one of the most disturbing. WTF? 5 months of chemo misery for nothing.

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    Just washed my hands, hopping in 70Charger's trunk (hey! thanks for the snacks!), and hoping we makes it to Mexico instead of the Drive-In!

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    clickchick,
    Did you ask your MO about that?  Almost sounds like a typo.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    KJ- I'll see my MO this Friday, but it does say that same thing in 3 different places on the path report. I knew that my tumor didn't shrink much from chemo, but I thought at least it could've possibly gotten the "stragglers". Now I don't think it's very realistic to think that, since there's no evidence of chemo in my nodes.

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2014

    70, Thanks for making room for me in your trunk!  I'm in for the drive in, and would gladly stow away to visit somewhere warm like Mexico.

    Chickchick, I would call you MO and ask about that.  Did they do any scans throughout chemo to assess whether or not you seemed to be responding to it?  It definitely warrants an explanation to you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    KBeee, 

    Ironically, my MRI after chemo showed little tumor shrinkage (from 4.9cm to 4.5cm) and negative nodes. The post MX pathology shows my tumor was actually 3.5cm and 2 nodes are positive. At this point, I don't know what the point is of the MRI or the chemo!

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  • 70charger
    70charger Member Posts: 963
    edited March 2014

    Mexico or bust it is then, with a stop in San Diego for the drive- in!!  Wooo   Whoo   ROAD TRIP!!!!!

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  • 70charger
    70charger Member Posts: 963
    edited March 2014

    I'm running out to get a map, cause other than South, I've no idea where I'm going!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Head south, make a right when you hit Phoenix :)

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  • 70charger
    70charger Member Posts: 963
    edited March 2014

    ThumbsUp Thanks Clickchic

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    Interstate to Mexico Riding in Trunk!

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    The view from the trunk... I mean from the radiation room...

    image

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  • knightzoo
    knightzoo Member Posts: 171
    edited March 2014

    You all are cracking me up, I want to go to Mexico!

    LHL, your 12 week pic gives me hope.  I look the same as you now simplelife.  Barely a fuzz, 7 weeks out.  It's making me crabby.  I'm so ready to be done with hats and wigs.  I'm shaving my legs about every 5 days, eyelashes and eyebrows are coming in too.  You'd think I'd have learned patience by now?!

    Radiation is going fine, 9 down, 16 to go.  PS filled my nonaffected side yesterday, it still has 75cc less than the radiation side that we filled, but it looks bigger.  My crazy body!  I hate the TEs.  Now that the surgery pain has subsided, I can feel all the edges and they suck.

    KJ, I'm jealous you get to leave your shirt on, I have to wear a cape, although it's only waist length, not the gown that Peacockgirl posted.

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  • BetterDay
    BetterDay Member Posts: 116
    edited March 2014

    Clickchick, I agree with your WTF!  I am so sorry to read about your report. I hope your MO has some answers on Friday. When do you start rads?

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    knightzoo,
    The shirt was non-negotiable.  I insisted from the start.  In fact, I insist at the BS's, PT's, MO's, RO's and any other medical visits too.  It is my way of insisting on maintaining some degree of control, modesty, and humanity in all this.  I bought five of them (different colors, oversized, and only $5 each at Walmart) the week I was diagnosed and I broke the ice with at least two of the doctors by asking first to negotiate attire during visits.  It made for good laughs and also for establishing that I wasn't their average, compliant, "anything you say is gospel", sort of patient.  ;-)  I haven't been told, "No", yet.  Not even at the ER or the hospital.


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    kj - today's IMRT was hilarious!!!  I almost spit out my drink on the keyboard!

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  • knightzoo
    knightzoo Member Posts: 171
    edited March 2014

    KJ-so true about maintaining some level of control.  My docs have let me control my schedule, so I'll let them gown me :)  At the PS yesterday she was training a new NP so she talked a lot - said she filled me faster than she has anyone else (only the rad side) because I was so set on a vacation date (she said with a smile).  I explained again that I can't change the date of the tournament, it's not a random vacation date!  My BS didn't really know how I would recover because she'd never done a post chemo BMX with only 2 weeks since my last dose.

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    I Make Readers spiT

    Nerdy

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  • SouthernGirl1974
    SouthernGirl1974 Member Posts: 86
    edited March 2014

    OMG has anyone been on an eating binge oh me oh my I gotta do better my appetite the last 2 days has been crazy

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    kj - lol!!!

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  • alfranco
    alfranco Member Posts: 200
    edited March 2014

    Clickchick I hope your MO has answers for you, ((big hugs)).

    KJ you are so funny. You had me rolling. Lol. I am getting ready to go back to work. My body is in really bad shape and I am going to physical therapy. I couldn't even stand in one foot without shaking. One day at a time. I hope everyone is doing well. Love the pictures.

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  • Viji
    Viji Member Posts: 195
    edited March 2014

    KJ! You are hilarious!!! Keep them coming...

    I am six weeks back into the new "normal". Back to work and all the running around as was before all this crap. The changes are that now I schedule "me" time which I didn't before. Doing things which are about me and for me and to hell with the housework and the cooking. 

    Joined a gym yesterday and went to my first Pilates class today. Been doing Zumba for the past few weeks. Sure the body aches but I feel energetic after the exercise. Trying to find a balance. But sometimes the tiredness descends and so does the blues.

    14 weeks PFC and unless I tell people, they just think that I have a cool haircut. It all feels so surreal. There are times when I am not thinking about all this. But I am going to see my BS tomorrow and my review is coming up and I feel real nervous about that. 

    Que sera sera...

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