Starting Chemo in December 2013

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited April 2014

    robin, forgot it was the neuropathy.  That is too bad it is not getting better being off the taxol a few weeks,  my neuropathy seem s to have stabilized and gotten maybe a bit better with the last supplement I added coenzyme Q10. Between that the L Glutamine, B6 and B12 and my vitamin D I have a lot of pills to swallow in the morning. 

  • missy6758703
    missy6758703 Member Posts: 218
    edited April 2014

    Congratulations to everybody that is ending chemo this week!!! I am feeling a bit better tonight, and tomorrow will be even better, i can feel it! :)

    I'm 46 and have 2 kids, one is 21 and the other is 18.  My son is off to college and my daughter will be graduating here in June.  I'm divorced, so its hard on my own sometimes getting through everything.  My daughter helps me, but i hate being a burden to her so try not to ask her to do too much.  It's not that she wouldn't and doesn't and everything else, I just want her to be 18 and be having fun, not worry about her mom and cancer! 

    Do you all have strange cravings for different foods? I just can't get enough of frozen fruit.....the kind with peaches, pineapple, mango and strawberries.  I put a little sugar on it and just sit and eat bowls full...of frozen fruit.  Its weird as i'd much rather have eaten a bag of chips before this! :)

  • DJJ
    DJJ Member Posts: 229
    edited April 2014

    Robin, I'm so sorry your neuropathy is so bad.  I know it's horrible.  I have little numbness but my nerve pain in my feet is terrible when I walk. 

    Missy, I completely understand.  I'm divorced as well and it's been tough at times having to deal with all of this.

    I had my lumpectomy today.  Since my tumor was so close to my armpit my BS was able to remove my sentinel lymph node through the incision to remove my tumor.  So only one scar, yay!!! She said that there was no indication that there is any cancer in the node.  Will get the pathology report next week.  Fingers crossed!!!! One more step complete!! Not much pain yet. 

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited April 2014

    DJJ. Nice to get that put of the way, sending wishes that the path report comes back good and you do not get much pain.   Do you have any drains in? 

     Barbara

  • oranje_mama
    oranje_mama Member Posts: 260
    edited April 2014

    DJJ, awesome news! 

    Robin, I'm not actually done with the BGC either. On herceptin till end of this year. The way I look at it, I'm done with the poison. Herceptin is like liquid gold.

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    anyone have a cancer marker blood test? Today was the first time I had one it was CA-15 something.  I wish they would explain the blood labs more that number was 30.1.  I do know my white count was up and they were concerned it would be low due to mouth sores.  

    Robin- thanks about my friend. She was like the sweetest lady at our church/school.  Her daughter is a co teacher with me.  I can't go to the service since I just had chemo yesterday.  Anyway, a person with cancer is probably the last thing they want to see.  It was not breast cancer but Hodgkins.  The beat breast cancer 20 years ago, then beat Hodgskins 3 years backs.  She was dx around 3 weeks after me.  I hate cancer.  So hard to see anyone from our team go.  I have known 4 since my dx.  And 4 dx! 3 of which earned their wings. Heartbreaking.  But that is why my motto is just keep swimming.  No matter what just keep going.

    I think I might be ended chemo last or at least with in days of whoever is last.  Anyone around May 14?  Y'all better come back and tell me yeah lol. I track you down on your other boards.  Ha ha! 

    Someone should be on deck with rads. Someone told me to get men's pack of white shirts that you don't mind throwing away.  Slather yourself in aquaphor overnight.  Rinse either with dove or no soap at all since it can be drying.  I don't know what to do about underarm odor!!!  They said no deodorant. I don't wear antipersperient which I know they don't like! But how are we not going to stink?  Cornstarch?  Oils?  I might be a hippy lol!

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    DJJ, I hope you heal well from your LX. I think mine healed very well. Just ice for a few days. I don't think I took anything other than something OTC for pain. I know I felt so much better, mentally, after that was over with.  I did make my incision bleed bc I forgot it was there and was throwing the ball for my dog....take it easy!  Hoping you get good news on your path report.

    missy, glad you're feeling better. Keep it up! I craved crunchy cheetos while I was on chemo.

    I was very fortunate that I never had signs of neuropathy. I hope you all who do, can get it under control.

    Just curious, are you that are Triple+  going to be on Perjeta also? I heard that it was approved late last yr. Not sure what the guidelines are.


     

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    DJJ - hoping your path report is good. How are you feeling?

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    maybe we can change the thread title to chemo Dec 2013/ rads spr 2014 and just all stay here :0)

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    ^^^^;). Good thinking!!

    DJJ- you rest!  You deserve it! Super proud!!!

  • jackieak
    jackieak Member Posts: 169
    edited April 2014

    oh I hate these steroids...I feel like a huge Cheetos puffy and red orange.  Benedryl headache, hoping for sleep.

    I have a rant...want to jap slap people who tell me " well now ONLY 4 to go".  Only.....to me it's a lifetime...I know they don't know what to say, but gosh I wish they would say nothing at all.  Save the ONLY for my last one, then it will be the rest of my life worrying and hoping it never comes back, what a long haul this is ladies...I'm grumpy, again and I'm sure it won't be the ONLY time!

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Jackie-  I say it myself and countdown.  I think it is a mind trick for me.  I tell myself only 2 more (AC though so weeks apart) but when someone says it to me my response automatically is "Let's hope!".  I think we all feel that way.  

    My plane ride was canceled yesterday.  We had to get a rental and drive home.  But, we had another passenger with us.  She flew down too.  I knew who she was because I tru to follow anyone with breast. Cancer in our area.  She has stage 4, reoccurance from almost exactly what I have.  I was really scared to know or talk about it.  But, I'm glad I did because she went to dumb doctors who ignored her and even withheld information!  Here is the story.  Please read and spread:

    She went for her scans and they told her all clear.  Failed to tell her she had two cracked ribs on the bone scan.  Huge red flag!  First started with lower back pain, persistent would not go away.  She called Them and they suggest sleeping patterns, stretching...she went to a chiropractor!!  Not knowing about the cracked ribs!  Pain increase and then on a trip to Six Flags she almost blacked out on a ride from the pain in her back.  Her then BF keep telling her she was being dramatic.  She went on another ride that involved strapping something across her chest and she heard a crack.  Another rib and she said she was in serious pain when she got back to the hotel.  He still didn't believe her!  When she got back home, she finally got a bone scan and CT.  They said it would take ten days.  However, the radiologist told her he thought it was there to prepare her.  And it was- ribs and spine.   Now she is fighting for time.  She could have been so much farther ahead.  They stole time from her by ignoring her symptoms and worse ignoring the findings of the original scans saying all clear.  Her original BC chemo treatment was way different too.  They seem to drop the ball and it sickens me.  She is now at MDA climbing up as much as she can.  So!

    1. Insist on knowing everything!  When we finish, ask no fractures?  No nothing?!

    2. Any pain which most likely will be nothing, but any pain get down they and insist on a test.  Peace of mind for you!  

    3.  Slap anyone that ever calls you a drama queen- it's called cancer survivor @!!!!!

    I hope I didn't worry anyone. Her story actually gave me relief.  I was worried  about hearing it, but there were tons of warning signs which she agrees.  It didn't have to go down like this.  And it won't for us because she shared the truth!  

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    rant away Jackie. What frustrates me is when people assume that after just 2 more everything will be back to "normal". Like after your last infusion you're miraculously who you used to be. 

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    watching GMA. Why doesn't Amy Roabach look as exhausted as I look and feel? I know she cut her hair short but she still has it. 

  • DJJ
    DJJ Member Posts: 229
    edited April 2014

    Barbara, no drains, just the tape that stays on for about a week.  I take the gauze off tomorrow.  It does make a gurgling noise when I move...creeping me out.   

    Jodi, I start my last four chemos April 25th and will finish a few days after you, May 16. 

    Jackie, rant away! That's what we're here for. 

    The pain is minimal.  I just took a couple of Tylenol and am icing. 

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Ladies in DD Taxol... When (if ever) did you feel numbness? It seems like I'm feeling some tingling in the tips of my fingers and toes. It's on the side where they removed the lymph nodes so not sure if it's surgical related or taxol related. It does seem like maybe my pinky on the other side too. What does it feel like? Is it like your foot fell asleep?

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited April 2014

    Jodi, thanks for sharing the story.  Hopefully it will save someone else.  I go for my first rads at 1:00.  I'll fill you in later today.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    jackie, I sympathize with you on the steroids. They were my worst nightmare...rant away!

    I am now 7  1/2 wks PFC and I am mentally and emotionally feeling much better than I ever thought I would again. I still have my moments of dis-belief, but overall feeling good. My stamina has improved and I am not short of breath or fatigued. Sometimes I feel like, just when something is over and I am on track, they hit me with something else! So far, rads are easy peasy, but only my 4th day today.

    DJJ, glad your pain is not bad.

    I stopped reading several years ago, but have now made it part of my on-going self-improvement plan! I am reading "Soraya". She is a Latino singer and wrote a book on her breast cancer DX. Her grandmother, aunt and mother all succumbed to it. My brother sent it to me along with a couple of her CD's. She is a very inspirational person! It amazes me how different one culture is from another in the way they handle their health-related issues, esp. cancer.

    TGIF ladies~We can do this!!!Nerdy


     

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    Way to go Mikesgirl! Let us know how it goes!

  • jackieak
    jackieak Member Posts: 169
    edited April 2014

    Amy from GMA may be on CMF chemo, I have a friend who was, it's limited hair loss on that, it thins but you don't lose it all.  

    Not much sleep last night even after a Valium, those steroids win.  I will go to work and come home when I feel the crash coming...just need to see if I can work the makeup tricks to hide the blow fish look! Happy Friday all!

  • RobinLK
    RobinLK Member Posts: 840
    edited April 2014

    Holli - mine feels weird. Numb and tingly, but also like a rug burn. I don't have the shooting pains, but the feelings intensify drastically when using my hands/feet. The arm and leg issues feel the same with added issues. They feel heavy, and shaky, like jello shaky. It is almost as if they have been worked to the point of exhaustion and don't want to support me at all. I don't really know how to describe it fully as it is it's own unique thing. 

    My surgery area burns from the Taxol, including my port. Not sure why that is, but it happens every dose. Feels like razor burn in those areas. Very intense and pain meds don't touch it. Lasts for 4-5 days each cycle. Thankful I am getting near the end of it. Will not have the full 12 but MO is happy with what we have gotten in so far. Will most likely have one more, if not both. 

  • kjfromca
    kjfromca Member Posts: 283
    edited April 2014

    Morning ladies - I have been reading your posts and have been meaning to post myself.  I am 3 weeks post chemo. I am starting to feel some stubble on my head.... not fast enough.  My legs still hurt when I am on them a lot, but I feel like I am getting stronger.  I do still have down days.  

    DJJ - I am glad your surgery is behind you and you are recovering.  Wishing you clear margins on your path report with no lymph node involvement.  

    Oranje mama - Congratulations on finishing up your chemo.  Sending a hug your way.

    Jodie - I haven't had any marker tests yet.  I think I do after rads.  Let me know what you learn.  Thanks for sharing what you learned from our stage IV sister.  What's her name?   I will be praying for her.     Thanks for sharing the info. that you learned from her, we can never have too much information.  We need to beat this.

    RHGSR - I agree that we all need to stay on this board.  I would miss you all if I didn't read your posts.  As a matter of fact, there are a few of our sisters who haven't posted lately... miss hearing from them.   I had tingling in my fingers at different times with the Taxol, but it went away.  My hands still sometimes feel stiff and sore.  My main issues with the taxol were in my legs.  Run it by your MO if it doesn't go away.

    Mikesgirl - Let me know how rads went.  I start Monday.  Are you using aloe?

    Jackie - Rant away anytime.  Chemo sucks... and the steroid roller coaster is brutal.

    Keepthefaith - Are you doing any preventative lotions with the rads?  I need to get over to the rads board and read up.

    Take care ladies,

    Kim

  • KAT4856
    KAT4856 Member Posts: 67
    edited April 2014

    RHGSR - I finished DD Taxol on March 26th. I did have a small amount of tingling in the fingers on the same side as my lumpectomy. It felt like slight numbness or maybe a little pins and needles. Each time I felt it I would massage my hand with hand lotion. i don't know if it helped but it never got any worse.

    Does anyone know anything about using lotion with Aloe Vera for radiation. My paperwork says to find 100% aloe vera. I did find a product by Crabtree & Evelyn that says it uses 100% aloe vera extract from the plant.  Any info would help Thanks

  • oranje_mama
    oranje_mama Member Posts: 260
    edited April 2014

    Count me in as someone annoyed by Amy Robach.  It's sugar-coated cancer.  Watch Amy "take control" by getting a short designer haircut (and keep her hair).  Watch Amy travel to Russia to cover the Olympics.  Watch Amy on GMA as if nothing is going on!

    I guess we are supposed to applaud her for being so strong.  But I would find her stronger if she were more honest. 

    Recently, an amazing woman named Ann Murray Paige lost her fight with breast cancer.  You can read her obituary here:

    http://www.pressherald.com/news/Breast_cancer_writer__advocate_Ann_Murray_Paige_dies_at_48_.html

    There are links to a video she made called the Breast Cancer diaries, and if you scroll down, to a speech she gave last year at a Mass General event.  Her speech is awesome.  Just make sure you have some tissues on hand if you give it a listen. 

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    thank you Oranje !! I agree with you. I keep watching her and reading about her for some sign of being "human" in this. It makes me feel like a wimp or something. I know I shouldn't compare myself but it's hard not to.  Our stories are similar - DX in Oct., BMX, chemo started in Dec, etc. I guess I'm trying to identify with her and I just can't. 

    Glad I got you gals!!

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited April 2014

    Holli, my neuropathy varies, mostly it is tingly feeling and other times the foot feels tight light it was in a cast. Not really painful. At times the tingling radiates up the back of one calf.  I find walking helps and it is worse in the evening when I am lying on th couch reading or watching TV.  When I start walking the legs fell good but after 1/2 mile I get some weak feeling in one thigh like Robin, it feels like the leg might give out.  Never does and I just keep walking. MO still hopeful that is will go away eventually. 

    DJJ glad you are not having a lot of pain.  No drain is a plus, I hated the drain after my AND. 

    Jackie.  Thinking yourself only 4 more taxols and someone else saying it are so different   Have you been able to get the premeds reduced at all.  I feel so much better with lower steroid and benedryl doses.  Still had red checks this am but less hot flushes overnight. 

    Robin, maybe that is the pain (from taxol)  I have feeling in my axillary area, just below the incision gets very sore and burning like. I had myself convinced I was feeling lymph nodes there but the MO checked yesterday and the week before and felt nothing. 

    Jodi I had baseline markers done. Ca-15 and CEA. In our lab  Ca 15 is normal up to 33.5. That would mean yours at 30 would be normal. A single number is very useful but the change over time is what is followed.  Hopefully your markers will go down or even just stay stable after finishing chemo.  

    I am really interested on how RT goes for you early starters. Is it true you can not wear any deodorant for the whole 5-6 weeks, PEW. I will really stink without my daily dose.   I have been reading about different lotions and have not heard what my RO recommends yet. Anyone know anything about Miaderm, it has calendula, all Vera and hyaluronate (hyaluronic acid) in it, very expensive. $33 for a 4 oz tube. 

    Nice to hear from those who are done with chemo and starting to get back to normal, or at least their new normal. Gives the rest of us still going through this hell hope that it will get better. 

    Barbara

  • missy6758703
    missy6758703 Member Posts: 218
    edited April 2014

    I watch GMA each morning and I have been wondering the exact same thing about Amy Rorbach.  (however you spell her name).  She obviously isn't getting the same type of treatment as was all are! She was diagnosed right after me, i feel like i've been through war most days and she is all chipper and cute and smiling.  It annoys me to no end.  So nice to know i'm not the only one!! This is another thing that annoys me......and not to offend anybody that proudly wears and displays them, but i've begun to hate pink ribbons. Bawling  I used to like pink......really, i did. And I would have probably bought somebody diagnosed with breast cancer something with a pink ribbon, but now, ugh.....i don't like pink....or ribbons......or cancer......

    I think i'm grumpy today!! Happy

    Happy weekend!!!  

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    For those of you who have asked about rads lotion: RO has me using Miaderm after rads and not sooner than 4 hrs prior to TX. I usually put it on an hour or so after, depending on what I've got going on. Also said "California Baby"  is an option. You can find CB at Target in the baby section and it is cheaper than Miaderm. Both have Calendula in them. Rt now, it's once/day, but will monitor me and see if I need to use more later on. I haven't been using deordorant before rads. Lucky for them, it's not too HOT here yet!! I have heard Aloe Vera is good for rads also.

    good luck with your rads Monday, Kim. You'll do great!

    I am not sure if and when they ckd my markers...if they did, they didn't discuss it with me. My RO said they will do a blood draw next wk and then again when I am done. I'm sure my MO will stay on top of it.

    Anyone had port removed yet? Mine will be out next Friday. Just wondering if there is anything I should know. Local anesthesia, but at the hospital OR, in case something goes wrong...per BS.

    Holli, loved your connection to your Grandmother and her gardening. Mine was the same way. I have a cutting from a lilac bush that she had at the homestead where she was born. I planted iris's a couple of years ago, bc they remind me of her. I think about her when I am out working in the yard. We had a veggie garden growing up. Sounds like your kids will have some good memories going forward!

    Not keeping up with the Amy woman. I guess everyone deals with it in their own way...I wish some celebrities would take their roles more seriously and realize what a big influence they have on the public, though. What a let down. My half-sister had BC about 15 yrs ago and her hair thinned out. She was on CMF.

    Anyone have any exciting plans for the week-end?

     

     


     

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    agree with the Amy thing!  She is only helping people think it is no big deal. Meet a BMX, cut your hair and get on with life.  They did a whole documentary when Robin had cancer and it was real.  So, not sure about Amy.

     I know they said she had node involvement, so I am not sure what she is doing or not doing.   I had high hopes to go through this with her, but nothing seems the same at all.  And, that is what millions Of people are seeing and believing that is the norm:(. 

    I heard Miaderm for rads too!  Amazon has it.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited April 2014

    Okay, had my first rads today.  Easy.  You don't feel anything. It was weird though.  When I was done and I had left, I got very emotional.  I put up such a strong front, that sometimes it's overwhelming what I've actually gone through and am still going through.  My emotions bubble over through my eyes whether I like it or not.  None of this is easy, no matter how strong we think we are.  Seriously though, compared to chemo, you blink and it's over.  Happy week-end ladies.

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