April 2015 Chemo Crew... Starting in April? Please join us!

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  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    Kbee - I'm so sorry you had a recurrence despite the BMX - I realize there is no guarantee - but like yourself I know I won't regret that decision. Like you, I have pretty small breasts and I'm pretty sure the lumpectomy would leave me deformed on the left side. Hopefully this will leave me whole again.

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited July 2015


    I had a BMX, against thoughts of some friends. As kbee and Katy said, it is your decision. I knew the recovery would be more difficult, but did not want to take the chance of a recurrance in the same Breast or the other one. Ironically, after surgery, I did learn that I had pre cancerous cells in the opposite Breast that were unable to be seen beforehand. So, I have never regretted my decision.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    BMX here, for all the reasons described. As a TN it felt like the right decision. My reasoning is, if you see a spider, smash it flat and burn the house down around it, don't just pull off a leg and hope for the best lol.

    rpayton, I wish I had a hobby like yours or katies or gkos, I am noticing that as the insanity settles, I really need some non work hobbies. Is crocheting very difficult?

    Going swimming tomorrow, and I need to Mcguyver up some hooters to fit in my bikini. Suggestions so very very welcome! Please!

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    #30: I am grateful for interesting dreams.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    Ok, so finished my 4th and final TC Thursday and today I am super lightheaded every hour or so. I've not had this side effect before. Any thoughts besides water and protein to alleviate the spins??

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  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    Wow. Once again I am so happy to hear these real stories and to hear that I'm not alone. I'm so glad you did what you did, and you are giving me the strength to do the same. Thank you!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Because I know you are dying to see them - I give you my toes:

    image

    It's hard to see, but the left big toe is discolored on the left side - starting to lift up. On the right foot, the 2nd toe is the one that lost it's nail over a month ago. It formed a scab like covering, but that shed on vacation - it's hard to see in this picture, but there still is no nail at all on that toe. On 3rd and 4th toe, you can clearly see that they are purple - which is how it started with 2nd toe, almost like a bruise/blister under the nail.

    As you can also see - no pedicure since back in early April, feet look disgusting. I try to do my own version of pedicure, but the dry skin just comes back (and, I generally stay away from the cuticles).

    Lynne

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  • gkodad
    gkodad Member Posts: 188
    edited July 2015

    Eventual BMX here after initial lumpectomy. You do really need to decide for yourself what feels right. My experience so far is that most BC doctors (male) have no real idea what the stress associated with constant mammos, US etc. is really about AND they have trouble understanding why you would ever choose to lose a breast when you have other options. Or having lost a breast, why you would not choose reconstruction. My surgeon asks me every visit if I've changed my mind about reconstruction and I tell him "no" every time. So you have a number of options and you should go with the one that feels right for you.

    Hindsight being 20/20, I wish I had done a BMX much earlier, because I developed a new BC on the "good" breast. But that's hindsight and there's no guarantee even with a BMX that it would not have happened.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    My surgeon posed the reconstruction question initially and I said I had no interest. He asked one clarifying question related to skin-sparing BMX and I again said no. He then said that he is required to ask, but that in his experience, only about 50% reconstruct and of those, about half (I think) say later they wish they hadn't, for various reasons. I didn't have a choice about the BMX given where the DCIS and tumor were (think "Mount St. Helens" as the outcome of a lumpectomy for me), but I'm happy flat and easy to examine.

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Lynne, I hope new nails grow in soon. So far, that side effect has skipped me, but I have a ways to go still, and I know it may appear at any time.

    Scarlett, Make sure MO is aware of how lightheaded you are. Fluids are your best friend to keep your blood pressure up, and be sure not to stand up too fast. Also make sure you are keeping your belly full...snack often if needed to make sure your blood sugar is good.

    I ran the 5K this morning. It was HOT. There is a heat advisory in effect. I was obviously much slower than last year, but I was glad I finished without walking (even though my "run" was not much faster than a walk at the end). I finished in 32:06. Last year they divided the ages 40-44 and 45-50. Since I just turned 45 a month ago, I was excited that I might have a chance to place in my age group since it's a small race. This year they had the age groups as 40-49. Boooooooooo!!!!! I was 5th in my age group instead of placing, which would have been a pretty proud moment considering the chemo and heat. Nevertheless, I am proud to have finished without walking and still finished in the top half of hte age group...which means the bottom half must have walked much of the race! My kids love running 5Ks, so I probably should find a few more for us to do. It does keep me motivated and push me.


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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Oh no Lynne! Your poor toes! Actually, mine always kind of look like that, even befor chemo. I hope yours get better soon! Also, looooove the pictures from your vacay. That lobster made my mouth water.


    How is radiation going, ksusan? You a crispy critter yet?


    Kbeee, you are our resident badass. Keep it up! Did your ponytail arive? I got a notice that mine shipped, and I'm ridiculously excited. My two wigs are in rough shape because I have no clue how to re style them after washing. Need to make time to take them to my favorite hairdresser, who works with the American Cancer Society and helps out afflicted women. I think I have spent more on wigs and makeup since diagnosis than I ever did on my real hair.


    Trying to nerve myself up for my last dosing next week, and figure out this whole survivorship scene. Anyone else in the same boat??? My dear friend spent 10 years in a maximum security prison, and to him this whole cancer and post cancer thing seems a lot like being a convict. I kind of agree. Parole vs checkups, constant surceillance, never really feeling comfortable, the works. Kind of interesting, the psychology. My other dear friend was a sniper in Afghanistan for the marines, and has PTSD so bad he can't really function. Oddly enough, he gets it too. They are like my guardian angels. I am greatful for them!
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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    So, to sum it up littleblue, you are grateful for convicts and snipers....

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Sue, LOL. Yup! At least those two.

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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Lynne, if you think about it, your toes are visible representation of how our bodies look and feel inside. Soon they'll be pink and beautiful, and you'll feel like a million bucks inside.

    Katy - how ya feeing today?

    And Addie, how 'bout you? Haven't heard from you in a while.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Not even lightly toasted yet. Only 3.03% in. I'm glad to have the weekend for the dermatitis from the stickers to go down before more zapping.

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    KB - WOW, just WOW - 32:06 is great! I couldn't do that before BC/Chemo, nor when I was 50# lighter and running that distance (albeit on a treadmill for the most part) every day. I could not run in the heat! I did a 5k at my son's school on May 16, at 6:30 PM - it had been a hot day, and it was still pretty warm, but no where near "heat advisory", and it killed me. For one thing, I don't like to carry water when I run, and they only had two water stations - I was dying by the time I got to the first one. Anyway, just trying to say that I am impressed! It must feel soooo good to feel good enough to run 5k.

    SueH - that's a really good point. Looking forward to being pink again. If my 2nd toe is any example, it may be a long time.

    Re MX vs LX (is that the right abbreviation?), I'm probably in the minority that I wanted to keep my breasts. I had already made up my mind that if I they were recommending bmx that I would have reconstruction. I was especially interested in nipple-sparing. I guess I figured I was going to be in for the rest of my life mamos even before bc, and now it may have a few more breath-holding moments, but it would be worth it in the end based on the statistics. When I had to go for the re-excision, my BS said that I could have a MX, but statistically it would be the same. She said she had some women who told her they wanted them off as soon as she walked in the consultation, and she had another patient that she had been back for a 4th excision to save the breast. As you all have pointed out, very different, very personal.

    Lynne

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

    Kbee- so very impressed and proud! You seriously are one badass sista

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    So today on top of light headedness, I've got wicked bone pain in legs, especially my knees. Doing Claratin and 500 Mg Aleve, but sharp persistent pain continues. Guess my body just kept the worse SE for last. Tried to walk thinking it would help pain and just got lightheaded and dizzy. Ugh!

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited July 2015


    Yes, Kbee, you are amazing! I can't walk around the block yet! I have such weak legs. Did not before all this started. I just retired from teaching - decision made for me with this diagnosis. 6 months ago I was running around the soccer field with my kids.

    Katy, How are you doing? Do you get weak legs? Happy you are recovering and do not have to "take a seat" again. My last is this Thursday. Happy to be done with chemo but worrying about having worse SE. How are you feeling about estrogen inhibitors?

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

    Lynn- made some very small improvement over the weekend. Yes I get horrific bone pain. Sometimes it starts in the lower back and stays there a couple of days, meanwhile it gathers force in my legs. Actually it's all over my body pain, but the legs are the worst.

    I try rubbing my quads and it's actually painful to the touch. This makes very little sense to me, but there it is..

    I am weak, short of breath, and walking from the bed to the bathroom hurts. I'm hunched over like a very old woman. The best comparative description is that it's like a "flare" that people describe with RA and fibromyalgia. I know I'm getting weaker and weaker, and I'm in a dilemma if I should try to force something out of my body. In the end, I've decided to give my body at least the usual 3 weeks I used to get between infusions to rest and mend a bit more.

    This pain and weakness was definitely an SE that was cumulative. I didn't really notice it the first round. But from rounds 2-5 it got steadily worse, and 6 has been off the charts. Sorry I don't have better news for those of you behind me on the schedule.

    Congrats on finishing up this coming Thursday!!! Knowing in your head that you are done should help you in the war between brain and body.

    About HT, blood tests showed I'm not completely through menopause..so I start Tamoxifen in about 30 days. My MO wanted me to give my body a bit of a break before I jump in to that pool. I'm just hoping I tolerate it with minimal side effects, as it is a key part of my treatment. In fact, he said, twice the benefit I got from chemo in my particular case

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited July 2015


    Oh, Katy, please get better soon! I so understand how the legs feel. It has been such a struggle to make food or do much of anything. I have wondered how you get up to let Jack out. Yep, knowing this is the last will get me through. Just remember, every morning you wake up, you can think....no more, I just have to keep getting stronger! You have a friend and cheerleader in Florida.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    I'm sorry for everyone's increased SEs. I couldn't sleep last night due to the horrible prickly touch of a soft blanket over a sheet. My chest sometimes only registers painful sensations since surgery.

    image

    If you enlarge the photo, you'll see new eyebrow and scalp hairs

    breaking through (though like most of you, less on my crown than on sides and back).

    #31: I am grateful to finish my classroom teaching hours for the summer.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited July 2015

    Here in Chicago for Tax/Carbo #1. I get my halfway MRI first this morning. VERY nervous an I can feel something that I couldn't before. I try to convince myself that it is a combination of my awareness and 13-16 pounds of weight lost. Maybe the breast tissue is shrinking around the mass? Will know soon. There is a huge thundercell right on top of the hotel. Lightening and thunder almost at the same time....is this a good sign???? Almost no sleep in the last 3 nights. Feeling very anxious and just want to get through this. My 41st birthday is tomorrow...I get Neulasta for my birthday ;) At least I get a plane trip home to see my son too. 48 hours away from him is the worst.


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  • Addie29
    Addie29 Member Posts: 307
    edited July 2015

    Sueh58 I'm still here. Se have been minimal. I go in for number 9 tomorrow out of 16 so almost there. Taxol has been gentle on me- so far. I had so much energy this weekend. I got a lot done. Also had my brother and his family over for a night From Connecticut so he could run in The Boilmaker Road Race about 40 minutes from me. We spend Saturday in the pool and Sunday at my sister in laws for a family get together. It was all together a great weekend. This morning I woke up with such a headache it would make a rhino keel over- BUT I was slept like absolute crap last night.


    Kbeee you're amazing! Such a warrior. I need to start taking better care of myself- but can't seem to get the push to do it.

    Ksusan wooooo whoop for new hair!!!

    Lovelilynn when did your toes start peeling? I only ask because I've had 4 soon to be 5 taxol and haven't noticed anything with my nails yet- I hope you can get some relief if they hurt.


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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    DizzParkMom, may everything go well.


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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Suiting up for treatment #7, Taxol #3. I feel pretty good about it - I know what to expect. I just hope my numbers are ok and I can skip Neulasta this time. Fingers, toes, and bottom of feet still numb, but I purposely buttoned a (tiny!) button on my daughter's dress so I know that I could do it. None of my summer clothes have buttons!

    Heather, totally thinking of you!

    Scarlet, that sucks about the light headedness and bone pain. Are you taking anything OTC for pain? I found the ibu took the edge off.

    Ok, gotta go have my next helping of shit sandwich.

    Lynne

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  • gkodad
    gkodad Member Posts: 188
    edited July 2015

    Heading into dose dense Taxol #2 on Thursday with numb fingers and toes, already purple at the nail base. but hopefully it won't get too much worse. I think it's pretty mild so don't expect any delay or dose reduction this round. So far Taxol #1 has been kind, with the exception of days 3-5 with really bad leg and foot pain, and the ongoing digit numbness.

    I hope everyone has a good week. I'm happy for those of you either finished or soon to be.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited July 2015

    Thanks ksusan & Lynn!

    7am MRI complete. Breakfast complete, Benefit session (bill paying) complete, pharmacy complete....I have a post MRI message in half an hour. Then, I get a 2 hour break before I start meeting the team at 1:45 central. PICC line at 4:30, chemo at 5pm. Will have been a long day, but will be worth it for good news.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    Lynnelynn

    Lynne, finally took some Norco leftover from surgery in order to sleep. Hopefully yesterday was worst bone pain!

    Good luck DizzParkMom!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Ladies riding today- Good Luck and minimal SEs!

    Dizz, lightening and thunder are a GREAT omen :) praying for good news for you today!

    Ksusan..So...Much...Hair...and eyebrows too! Did you rub frogs on your head to make it grow? Be careful, if you say yes, I'm going to go out to the pond and catch me one :)

    Hi Addie! Glad you are feeling good!

    Lynne--mmmm, shit sammich. I hope you do get to skip neulasta...wish that was an option for us dose densers..Feel Good, Lady! Almost done!

    GKO, right there with you on Thursday! Hope your numbness goes away. Three fingers on my left hand and three on my right feel like they are going to fall off, it hurts to type. The whole finger, not just the nail LOL. Although those are plenty purple. Days 3-5 are my worst too. YOU are half way done with Taxol, right? Everyone gets 4? Yay You!!!!! We gonna ride together on Thursday. In my mind, we are the chicks from that old Western movie, Bad Girls.

    Had a pretty awesome day yesterday- drove up into the mountains and went hiking with my bro. Made it 6 gnarly miles of up and down hill, saw some beautiful scenery, and ate a delicious but potentially sketchy bar burger after looking over the lake. Feeling weirdly normal, which means the attention span of a gnat and the need to dance around to burn off energy.

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