Sept 2012 chemo

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  • jojo2373
    jojo2373 Member Posts: 662
    edited October 2012

    Ladies, I was asked by a dear friend to post this link in "our world". She is a member on here and posts in Stage IV boards. The Stage IV sisters are very upset with this message from Komen. Give it a read, then read some of the comments.  It was eye opening to me.  Copy and post from below.  Hugs!

    fairoaks-carmichael.patch.com/articles/survivor-heads-local-susan-g-komen-affiliate#comment_5071826

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited October 2012

    Jojo:  Yikes!  Those comments are pretty frightening.  I think I like being in my denial space.  But I totally understand their anger and frustration.  They are right- awareness isn't what we need.  We need research around a cure.  Thanks for sharing.  Nice to know that Stand up provides more money towards research.

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  • jojo2373
    jojo2373 Member Posts: 662
    edited October 2012

    Yes its a little frightening for sure Mariposa! They wanted all stages to be aware so their voice doesn't go unheard.

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  • EnglishRose75
    EnglishRose75 Member Posts: 147
    edited October 2012

    Today is one of those really grey days here where the mist is thick in the air and everything is soaking wet even though it hasn't rained.  In our family, we call these "nose up bum" days, not to be rude and not because we're particularly agile or anything.  It refers to the coiled up positions that the cats take on the sofa.  Definitely a movie day with a snuggly blanket, popcorn and an open fire.  For the first time ever, I'm actually looking forward to the clocks going back this year so that I can get my pajamas on earlier in the eveings.  I never like doing this until it's dark outside at least.

    Whenlife, I did shut my office door but used a slightly stronger word than that on this occasion.  Multiple times over in fact.

    Mariposa, that's really disappointing about your work colleagues.  They should know better.

    I could have taken three months off with full pay, and three months with half pay but I chose not to.  It's partly because I manage a team and I felt that six months would be too long to be totally away from things (I am a bit of a control freak), and partly because I knew if I stayed at home I'd spend too much time "researching" my disease and becoming obsessed with my own health. It's difficult to keep the work stuff in perspective.  On the one hand, it really doesn't matter in the scheme of things and getting and staying well is ultimately the only thing that is important.  For me, though, being in the office for at least a portion of every day takes my mind off things and helps me to still feel that there's some normality left in my life.  The danger is though of course that you get sucked in to the inevitable stresses of it all, which is not helpful.

    Foreverchanged-- that's great news about the tumour.

    Damiana--what cream did you get for your nose?  Taxotere is making my nose sore now too.

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  • kidsandlabs
    kidsandlabs Member Posts: 138
    edited October 2012

    My scalp is really dry. Are there any really good lotions or creams for our heads?

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  • allurbaddayswillend
    allurbaddayswillend Member Posts: 355
    edited October 2012

    Dakota, I was node negative but my Oncotype was 32 or 34, I just remember rounding it off to a 33, and my Grade was Grade 3. With the grade and oncotype, chemo AND rads are recommended. With your grade 2 there might be a bit of difference. There was a guide booklet I downloaded early on that reassured me that my medical team was following the latest guidelines for my type, size, and stage but of course, I cannot find the exact booklet today; perhaps they are rewriting the guides based on the newer classifications? I don't know. Poking around the Nat'l Cancer Institute's site can be very informative: http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page6    though if you start getting freaked out, just stop and take your questions to your Drs. Believe me...it's also easy to get overwhelmed by all the info. hth

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  • allurbaddayswillend
    allurbaddayswillend Member Posts: 355
    edited October 2012

    kidsandlabs, I was having that problem when I lost my hair. I switched from shampoo, and other things I tried, to using my facial cleanser and lotion on my scalp and am still doing it even with a little bit of hair growth. I also massage some almond oil into my scalp some evenings before bed. My scalp really settled down.

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited October 2012

    allurbadays-

    Thanks for the link I will check it out ;)

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  • cgesq
    cgesq Member Posts: 319
    edited October 2012

    Hi All,

    I was all pumped up.  My daughter and I just got back from the 5 mile breast cancer walk in Central Park in NYC today.  It was perfect weather and I was feeling great.  The walk was packed with people who came out to support finding a cure for breast cancer.  It was really uplifting.

    Then I came here and read the piece that Jojo posted, and the comments.  WTF?????????  Is what they are saying in the comments true????  I hope NOT!!!  If so, that is really depressing...................

    I just read an article that someone sent me detailing how Israeli companies are making tremendous progress in breast cancer research.  Here's the link.   http://israel21c.org/health/top-10-ways-israeli-scientists-are-battling-breast-cancer/

    Personally, I prefer to focus on the potential breakthroughs.  

    Happy weekend to all!!!!!

    Cheryl

    PS  On a much lighter note....The Onion had a really funny article about all these "race for the cure" events.  Here's the link to that.  http://www.theonion.com/articles/6000-runners-fail-to-discover-cure-for-breast-canc,176/

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  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    Hey cgesq, did you hear a brass band at the walk today?

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  • Foreverchanged72612
    Foreverchanged72612 Member Posts: 223
    edited October 2012

    Thanks for posting The Onion link, cgesq. So funny!!

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  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    kidsandlabs

    I use what I use on my face, a gentle cleanser from kiehl's and a couple of different face lotions with with sunscreen for the day. I also use aloe vera gel after a a warm wash cloth at night.

    Electric razor?

    Little patches are growing on my head, they look pathetic. I want don't want to take the razor to it again. Anyone using an electric razor? What brand? Ihad someone helpme the first time and am afraid of cutting myself. 

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  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    I have a cold, a bad one, I feel like it's turning to bronchitis. I've been coughing a lot and have laryngitis too. I couldn't talk at all the last couple of days, it's a bit better today. I wish people would stop asking me questions when they know I can't answer. I have my fourth chemo on Wednesday. Will they not give it to me if I have a cold? Should I write to my oncologist? Oh god and I didn't even mention the fleas.

    Anyone else out there Triple Negative and getting neoadjuvant?

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  • cgesq
    cgesq Member Posts: 319
    edited October 2012

    QueenKong,

    Yes, we heard the brass band at the end of the walk.  It was so crowded, we couldn't get close to it.  We did manage to squeeze under the pink and white baloon arch, which marked the end of the walk.

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  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    It makes me so happy to hear someone heard them as I was thinking of them all day. That was my band. I am so sad i couldn't be there. They played that walk to support me. They are the best. I am glad you were able to enjoy the day.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited October 2012

    QueenKong- Sorry to hear you have that nasty cold.  Do you get your blood counts tested right before chemo?  If so, that will let your onco and you know whether you are well enough to receive the chemo.   If your white counts are not high enough, you may not be able to receive the chemo.   It couldn't hurt to talk to the onco before Wednesday to give him/her a heads up that you are sick.  Hope you feel better soon!!!!

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  • jojo2373
    jojo2373 Member Posts: 662
    edited October 2012

    Sorry cge, didn't mean to bring you down. There is a separate thread devoted to the topic as well on here. I think knowledge is power, the good and the bad. I try to see the perspective as well from the stage IV side of things.



    Hope all are enjoying this wonderful day!

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  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    Thank you Melrose. Yes, I get my blood counts first and it's almost a two hour ride so I do hope I get the chemo. I'm getting the neulastin shots so I think I will be ok for the counts. They have been good so far. Is there a dip as chemo goes on?

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited October 2012

    QueenKong-  If you are getting a Neulasta shot the day after chemo or Neupogen shots, I'd think your white counts should stay in the good range for chemo.  I noticed that my red blood counts dropped during my time in chemoland.  I didn't take any iron supplements or have to have blood transfusion but my onco told me to eat foods to help boost the red blood counts.  I did that and it helped.  My onco and I have an understanding that I'd rather add foods to my diet rather than take a supplement which explains why I didn't just take an iron supplement.    I'm 10 weeks PFC and the red blood counts are rebounding and almost in the ideal range.

    Hope you feel better from that cold.  A little hot lemonade and honey may help that throat/cough a little plus the good old chicken soup standby.  I'll keep my fingers crossed that you have your chemo on Wednesday.   

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited October 2012

    jojo

         wow, just finished reading the link you posted. I wish I hadn't read it.  Just by using my intellect I know not to give  something a dopey staffer at Komen says any true medical credibility, she is not a doctor, she is an employee.  By the same token, the statistics that were quoted in the lengthy comment section aren't infallible either.  I'm a newly diagnosed, I had a surgery and just started chemo.  I am really struggling with the treatments and the SE's.  Comments like those can kill all hope and that doesnt help anyone, any stage.  There was a walk in my town today, we were just driving by and my husband said, "what cure, there is no cure".  He didnt have any knowledge of bc until 2 months ago.  If people dont like  what komen is doing with the money, then put it out there. Don't  lump everyone together and kill hope. It is the wrong thing to do.

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  • jojo2373
    jojo2373 Member Posts: 662
    edited October 2012

    Waiting, your so right.

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  • shockd
    shockd Member Posts: 68
    edited October 2012

    QueenKong - I have that darn cold - talked with my chemo nurse, she said as long as I didn't have a temperature (fever) I am good to go to get my chemo tomorrow.  Hope yours goes well too!

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  • cgesq
    cgesq Member Posts: 319
    edited October 2012

    Jojo,

    I hope you don't think I was "shooting the messenger" because I didn't mean to do that! I just was rather saddened by what I read. I do agree with the comments which stated that more money needs to be directed towards finding better treatment options which cure this disease!!!

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  • Toastiecat
    Toastiecat Member Posts: 132
    edited October 2012

    QueenKong, I'm using a norelco electric razor. It's really great, very gentle. It has a clipper that flips up in the back for if your hair is too long for the shaver.

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited October 2012

    Today at the grocery store, my fingers all of the sudden felt like they were on fire.  It lasted for less than two minutes, but it was really frightening.  Is this neuropathy???  I have been taking my glutamine.  anything else you ladies do to ward off such things????

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  • Cindi74
    Cindi74 Member Posts: 363
    edited October 2012

    These are the Members of the Exclusive September Club No One Wants to JOIN.
    If I've left you off, please let me know.

    7312012------- M 47
    301724------- Vermont
    Aic------- 1 C. 35
    Aliasismo------- radiologist 56
    Allurbaddayswillend------- M, 1 C. 48
    Amy4978------- Howard City, MI 34
    AmylovesBubby
    Bearcub------- Prince George, British Columbia M., 3 C. 8 G radiologist 55
    Butterfly14------- Self Clearwater, FL 3 C. 44
    Cgesq------- New Jersey radiologist 2 C, 50
    Cherioo------- Florida 4 C. 46
    Cindi74------- Apopka, Florida radiologist 3 C 6 SC. 21GC M 75
    Damiana9------- Burleson, Texas
    DonnaDo8------- Self 2 C. 42
    Englishrose75------- Self Diagnosed Milton Keynes United Kingdom 2 C. 37
    Ergirl
    EvaNJ
    Firestorm531------- 1 C. Texas 41
    florbo------- Dallas, Texas
    Foreverchanged------- 72612 Self Chelsea, Quebec 3 C. 38
    Frannygirl------- Louisiana
    Internutz1------- Van Alstyne, TX USA
    JodiRocksthePink------- M, 2 C. 39
    Joemommy------- Portland, Oregon 1 C. 46
    Jojo2373------- Maryland Self.....5C. 50
    Justegan------- Wolcott/Kingston Dr. Diagnose, 23
    Kathec----------Los Angeles, CA

    KelleyB

    Kidsandlabs
    Kstillie
    Laura_g

    Linn65 Indiana
    Lokimax2------- Siler City, NC
    Mariposa123------- Bay Area, Californiz 2 C. 44
    Melrosemelrose------- (visitor from April) Houston, Texas
    Mindy703------- M, 3 C 41
    Momto5children
    Movinonmom
    Mycancerjourney------- Illinois
    Neta69
    Nickythebean
    PatriciaHurtado------- Miami, FL

    QueenKong
    RSDavid------- 3 C. 4G. 58
    Runnergirl71------- Fort Collins, Colorado
    SandeeAR------- Conway, ARm, M, 2DD, 53
    Sheerbab Dallas------- , Texas Self Diagnosed M, NO C, 43

    Shock2bhere--------------RI--M. radiologist 48
    Sjayne2u Ohio
    Sparkysbrat------- East Tennessee Mountains
    SugarlandlDC------- Houston 3 C. 43
    Tara88
    Terri07-11
    Timbek2-------Peoria, IL., radiologist, 3 C. 40
    Toastiecat
    Twinsplus1 3 C. 44
    Usmcblondie 25
    Waitingforthenextstep
    Whenlifegivesyou lemons------- Minneapolis M radiologist 46
    Wendy49------- Michigan 2C M self 49 

    That's 60. So many enduring together.
    Appointment now for reunion on this website in five years!
    Code: M=Married, C=children, GC= grandchildren, SC= Step Children "self" =self-diagnosed, radiologist=how diagnosed

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  • Cindi74
    Cindi74 Member Posts: 363
    edited October 2012

    I see we picked up QueenKong.  That makes 60.  It's been great getting to know so many of you.  Had lunch with a cousin and close friend Dr.--Internist, at an age to retire now who said that cancer treatment has become pretty cut and dried.  Recommended American Cancer Society web site.  I think this one is better. 

    Realized when I woke this morning that I am beginning to feel normal again.  Managed 15 minutes and 2 miles on the stationary bike yesterday.  Of course I used to do 2 miles in 10--before cancer of course.  Still, much better than last week.  That means, yuk,  A/C # 3 on Wed.

    Oh well.  Spent two days at the beach with friends.  Nice weather, but we just looked and relaxed.

    Talked with husband about spending a long weekend in NYC after A/C and before Taxol.

    First weekend in December.  Still some good seats left at a musical I want to see.

    Hate to get on a plane in the winter.  Real risk of flu or cold, but it would be fun to just look at the Christmas decorations.  12 weekly Taxol starting after return, so no trips for three months.

    Hope everyone has a good week, and no SE

    Oh yes,  Welcome to the group QueenKong.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited October 2012

    Cindi74- Thanks for continually updating the roster of the wonderful strong gals of this chemo thread.  Although I am just a visitor to this thread ( almost 11 weeks PFC), I can see the encouragement and bond that everyone has on this thread!!! 

    I saw that you are contemplating air travel.  I'm taking a quick trip this coming weekend to Boston from Houston. I did some research about LE and compression sleeves & gauntlets before I called my BS to have a chat.   I don't have LE and know that I am still at risk to developing it despite the low number of node removal.  I asked my BS if I needed to get to a compression sleeve and gauntlet to help protect my left arm from LE for the 3 1/2 hour trip.  He said he didn't think that I did but said that it would be okay if I did.  I have purchased one anyway as a precautionary measure.  You may want to talk to you BS about this before you fly. 

    Wishing easy times in the big girl chair this week and minimal side effects for all!!!!Cool

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  • JodiRocksthePink
    JodiRocksthePink Member Posts: 23
    edited October 2012

    I'm one week out from round 2..... I went for a walk this morning. Wow, my energy was zapped! It felt like my legs were filled with concrete! Is this a result of low blood counts? Has anyone been eating anything special to help build them? I have been taking the Nuepagen shots, but it obviously is not enough. I can't afford to get too run down with 2 kids to chase after.



    I'm at the same stage as everyone else with the hair...or lack of. It has been quite an adjustment. Hat, no hat...wig, no wig. I hate the wig....it feels like steal wool on my head. I think it is harder to go out and see strangers reactions than it is to see friends who already know about my health. Friends expect it and sort of ignore it. It makes me forget I had cancer and feel normal. I'm at this crazy stage where I feel I need the hair in public (like a disguise) but when I see people I know the wig feels so fake. I went out 2 times without the wig last week because I was just going out to drop off or pick up the kids...both times I ran into someone I knew. I think it was Gods way of telling me to get over it, I can't hide it. I've decided that if I act like I did this hair thing on purpose, hold my head up as though I'm proud of it, strangers wont notice...No hair is the new normal. We'll see if it works....



    My thoughts are with you all...I'm praying for strength and grace for everyone.

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  • Cindi74
    Cindi74 Member Posts: 363
    edited October 2012

    Melrose,  Thank you for reminding me about the compression sleeve.  Have had no problems with arm after lump and nodes, but not a good idea to take chances.

    I guess I got lucky with the wigs.  They are comfortable, not hot.  Most people seem to think they look as good or better than my hair.  They are about the same color and length, but straighter and don't have to be perm or rolled.  That is a plus.  Put them on in the morning and off when i put on pajamas in the afternoon or evening.  Have several sleep caps in different colors then.

    Read somewhere that ginseng (America, pure--no ethanol) helps with fatigue.  Oncologist thought a good idea.  Took 500 mg once a day beginning with chemo day for a week last time.  Couldn't see much difference.  Will try 2 pills coming time.  Beginning day after chemo I can stay up and moving less and less until 4th day when I give up and go to bed for 3 days of very little moving.  Like I am laying in wet concrete Even breathing takes effort.  I have given up fighting it.  Lots of audio books, TV, laptop computer, and sleep.  Beginning 8th day, I get up and stay up longer and longer.  20th day,  am almost back to old self.

    How in the world did that woman swim the channel!  On the 5th day I would have sunk like a rock.

    While bringing Breast Cancer to people's attention is good,  I think most of the money should be spent on research.  We need prevention and a cure.

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