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CMF Question

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Comments

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Annie,

    It is SO good to hear from you!  I was about ready to send out the search light!  Beach vacations sound great to me!  So glad that you're out and about now and enjoying yourself.

    Hey, I blame everything on the Arimidex!  LOL

    Hugs to you.  Stop in more often.  I miss you!

    Rita

  • Annabella58
    Annabella58 Member Posts: 916
    edited July 2009

    Hi Rita!

    I missed you guys too!  Glad to hear everyone is well!  How are you and the feet doing on arimidex?  I too, find it quite convenient to blame everything on. :). 

    xoxox

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Annie....

    My feet are doing pretty well.  Now it has moved to my left knee.  Some days I do just great.  Other days it really aches but not enough to throw the Arimidex out!  I hope you're doing O.K. on it.  I really think the aches and pains were worse during the winter when it was colder.

  • Miranda38
    Miranda38 Member Posts: 1
    edited July 2009

    Hi all,

     I have been reading through your posts and I feel like I know you! You are all heroes to me.

     My mom is currently on CMF. She had her fourth treatment on Thursday. She is a trooper, but she is definitely fatigued, and feels pretty bad until Tuesday or so. She has lost a lot of her hair--probably close to 50%--but not all of it.

     I have two questions. First, it seems like each treatment is harder, and takes more of a toll, than the one before. Was this your experience?

     Second, one of the symptoms that really bothers her is the awful taste in her mouth. Does anyone have a strategy for helping with that?

     Thanks to all of you!

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Hi Miranda,

    First of all, give your Mom a big hug from me.

    The chemo treatments are cumulative.  When you get your second treatment, not all of the chemicals are still out of your body so the new ones add to those already there.  The same thing happens when each new treatment is given, so we do begin to feel more effects as the treatments continue.  Drinking plenty of water after the treatments helps to move the chemicals through the body faster.  It is quite normal to feel more fatigue as the treatments continue.  Everyone is different.  I usually felt pretty good on the day of the treatment and the day after.  My worst days were the third and the fourth day.  Then I gradually got better.  I think it just depends on how each person's body reacts to the chemicals.

    As for the bad taste, lemon flavor seemed to help me.   Lemon drops, lemonade, Crystal light, lemon ice chips......sometimes even other flavored popsicles helped.  I even sucked on Lifesavers.  The lemon also helped calm any nausea that I did have.  Another one of my friends favored peppermint.  She drank hot peppermint tea and sucked on different types of peppermint candy.  Your mom might want to try both and see if either works for her.  It will probably take a couple of days to know if it's going to help.  I don't believe that either is an instant fix.

    If she gets to the point where she can't drink water, try the lemonade or citrus juices.  It's really important to keep hydrated and it's often hard to make yourself drink the liquids.

    Hugs to both you and your Mom as she fights the fight!  Tell her that there really is an end to the fatigue and other feelings after the treatments.

    Rita

  • socallisa
    socallisa Member Posts: 10,184
    edited July 2009

    Hi everyone..good to see you Rita..

    Miranda..I think Rita answered your question and I will add a second to that...the fatigue

    was for me cumulative to the nth degree by the end of six months of it...but it sounds like

    your Mom is a fighter...but sometimes it is OK to just give in to the tiredness and rest..

    I lost about half my hair too...I used the not only the lemon flavored stuff but also candied

    ginger..please give her a hug for me...I finished up CMF more than eight years ago now...

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Lisa...are you through running around the country now, gal and all settled back into the home routine?  LOL   I loved the trip but it was so good to get back home.  I had forgotten about the ginger so I'm glad you mentioned that to Miranda.

  • mandy1313
    mandy1313 Member Posts: 978
    edited July 2009

    Miranda,

    I've sent you a private message with some of my suggestions.  Hope all goes well for your mom.

    Mandy

  • elisheva
    elisheva Member Posts: 38
    edited July 2009

    A question for the veterans: I had my first CMF a week ago. So far so good - I'm feeling fine, just had one bad night. I am scheduled to go for a week to the West Coast to visit my son and his family - made reservations months ago. This will take place 4 days folllowing the 3rd treatment. What is your experience - is it doable? I'd hate to have to cancel. Even the travel insurance that we bought may not compensate fully. Any sugestions, anyone?

    Thanks, Elisheva.

  • mandy1313
    mandy1313 Member Posts: 978
    edited July 2009

    Elisheva:  These treatments are kind of cumulative so no one can tell you how you will feel. Why don't you talk to your onc about this?  They may be able to work with your schedule. The other thing---if you are actually sick, most airlines will give you a full refund of your non refundable ticket.  But the main thing is that you do want to go on the trip and to enjoy your son and family. 

    My one year of the intitial diagnosis was July 3, but then my sentinal nodes etc were on July 17...so I don't know which is the one year.  But, I am leaving for Paris on July 17 so I think that is a good way to celebrate the anniversary.  I will see a friend of mine who lives there and then a few days later, I go to London where I am meeting my husband. We are going to the birthday party of a 95 year old cousin of my mother's (I am part English so I have alot of English cousins.) I have been waiting for this trip for a year and I cannot tell you how excited I am to be going. 

    Hugs to all.

    Mandy

  • colleen1960
    colleen1960 Member Posts: 107
    edited July 2009

    Elisheva:  Mandy is right, you never know how you are going to feel.  I believe my 4th tx was one of the worst for the Se's, but it is cumulative so you just don't know.  I know I was diagnosed in Sept. and had my surgery in Oct. my husband and his sister was suppose to go to Calif the day after my surgery.  My surgeon wrote a letter and they were able to get a refund.  But I know that it would be hard to cancel, especially when you look so forward to going.  But you also want to be well enough to enjoy the trip.  Good Luck in making your decision.

    Annie - it was so great to hear from you.  And I am glad you are doing well. 

    My mom has landed in NY and she seems to be doing quite well.  We are all going to my brothers house upstate NY on Sat. for a family reunion.  I know she is looking forward to that.  She will get to see her cousins and other relatives.  We are leaving for Delaware in just about a week.   I have been looking forward to this trip since Dec.  Just hoping for nice weather.

    Miranda - Say hello to your Mom.  She seems like she is handling things pretty well.  My advice if she feel really tired, she should just get plenty of rest whenever possible.  Everyone handles the treatments a little differently.  She should drink plenty of fluids and also if she is able she should try and walk a little bit.  I know I felt better some days when I did that.

    Mandy - I am so happy that you have a great trip to celebrate your 1 year.  You must be so excited about your trip.  And your cousin's 95th B-day!!  WOW thats wonderful.  Well I wish everyone a great weekend.

    Stay well,

    Colleen

  • elisheva
    elisheva Member Posts: 38
    edited July 2009

    Coleen and Mandy,

    Thank you for answering my question. This is what I expected - SEs are different for everyone and we can't predict how we feel after treatment. Have any of you lost all or most of your hair? I went shopping for a wig over the weekend, and hope I will not need it.

    Thanks again, Elisheva.

  • mandy1313
    mandy1313 Member Posts: 978
    edited July 2009

    Hi Elisheva!

    I actually lost very  littler hair.  After my 4th tx, I had a bunch of hair in the shower drain and went into a panic mode.  But that was it, I hardly lost hair after that I don't know if what I lost was the normal amount that I usually lost, because I'd never put a strainer on the drain to measure hair loss.  ....I used the Nioxin shampoo that Ritajean suggested; did not dye my hair during tx (though some have been able to do that); was very gentle with a comb and/or brush....and no one, except me, noticed that I'd lost hair.  Now (don't laugh here), I put bags of ice on my head during the tx.  In Europe they use cold caps to prevent hair loss and I figured it would not hurt to try my own version.  All of the nurses thought it was strange, but at the end, they said I'd loss less hair than most.  Just a thought if you are worrying about hair loss.

    Have a nice day!

    Mandy

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Hoping that everyone is doing well and just bumping up our thread!

    Rita

  • colleen1960
    colleen1960 Member Posts: 107
    edited July 2009

    Hello All:  Getting ready to leave on vacation Sat.  YEA!!!  We are going to Delaware.  I have been looking forwrad to this trip since Dec. when my brother and sister-in-law told us they were giving us this trip.  I hope everyone is doing well.  Since this thread has been pretty quiet I hope that means everyone is busy enjoying their summer.  Check back in a week!!

    Colleen

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Colleen, Have fun!  Enjoy your vacation!  I have never been to Delaware so you'll have to tell me all about it!  Travel safely and we'll look for you again in a week!

    Rita

  • PatMe
    PatMe Member Posts: 30
    edited July 2009

    Hi everybody

    I know I haven't posted in a long time, but I need your vast CMF knowledge again. I am broken out all over in an itchy rash. Had my last chemo- #4- ten days ago. Anybody else have this side effect?

    Pat

  • aprilgirl1
    aprilgirl1 Member Posts: 806
    edited July 2009

    Hi everyone - it has been a crazy couple of weeks with lots of house guests. 

    Patme - I never had that reaction, so don't know what to tell you.  I would call the oncologist.  I am thinking you tried benedryl, but if not, I would take that in case it is an allergic reaction.

    Hope everyone is doing well.  I have surgery on Monday - have been too busy to worry about it.  My kids just flew down to California for the week.  This surgery is a re-excision and bilateral reduction.  Looking forward to getting it over with!

    Susan

  • PatMe
    PatMe Member Posts: 30
    edited July 2009

    Thanks Susan- I called the on call Onco and she said it was a reaction to the 5-FU. And there was really nothing they could do about it. I called because my rash has now run totally together into one big red welp. She told me not to sunbath. LOL I told her I would scare people if I did.

    Anybody else have this? I wonder if they'll still give me the 5-FU after this.

    Thanks

    Pat

  • PatMe
    PatMe Member Posts: 30
    edited July 2009

    Susan - I'm so sorry -talk about being self centered(all this stuff does make us focus on ourselves doesn't it) Here I am complaing about a rash and you have surgery tomorrow. Prayers for no pain after surgery. Let us know how you are doingl.

  • aprilgirl1
    aprilgirl1 Member Posts: 806
    edited July 2009

    don't you love the word 5 FU?!  Pat - hope it gets better - sounds like hives, but if the doc said there is nothing to do, just drink lots of water and hope it gets better soon.

    I am thinking this surgery will be fine - so busy getting the kids off, and house guests gone that I haven't had time to stress about it.  Hopefully any pain will be dealt with pharmaceutically.

    S

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009


    Susan....good luck tomorrow!  You're going into this with a good attitude.  It's probably a good thing that you've been so busy,  Anyway, I will be thinking about you tomorrow!

    Pat....I did not have any reaction to the 5-FU so I can't give you any input.  Hang in there.  It sure doesn't sound like your onc is too worried about it so it must be fairly common even though I've never heard of it.  All of our bodies react so differently to the chemicals. 

  • Annabella58
    Annabella58 Member Posts: 916
    edited July 2009

    Hi all, long time, no post!  Sorry, have been reading and catching up with alot on many threads!

    Pat, they did mention that I might get a rash, but seemed unconcerned about it.  As long as you ran it by your onc, and they said it's normal, I guess I wouldn't worry.  We are not doing a normal thing when we stick chemicals in, but what can ya do, right?  CMF works!  Hope it goes away soon!

    Susan, you'll be in surgery now or soon, and I am sending good vibes and lots of prayers for a great outcome for you!  I'll be joining you in a lift/reduce/prophy in the winter!  Let us know how it turns out for you!

    Rita, hi there sweetie!  Hope all is great your way!

    Happy summer, all.

    xoxox

  • Annabella58
    Annabella58 Member Posts: 916
    edited July 2009

    p.s. Whoops, Rita, just reread and missed your post on the good ole arimidex.

    For me, the achies are greatly reduced by the fish oil caps, 1200 mg. daily.  If you get the purified kind, 300 mg. each (GNC has them) and take them with meals, I can guarantee no fish burps!

    Also, I swear by exercise, and keeping moving.  The minute I sit too long, I stiffen up.  SE bonus: weight loss :).

     But so far, so good.  I am fine after the hyster/ooph, it's as tho nothing happened.  Weird! 

    Hope your are doing better with this nice warm weather.  It does help, except for the swollen fingers with the heat, otherwise it's AOK.

    xoxoxo

  • ritajean
    ritajean Member Posts: 4,042
    edited July 2009

    Annie, It's always nice to see a post from you!  I'm glad that you're doing better on the Arimidex.  I do think that the warmer weather helps me some.  I have had a few problems with my left knee but nothing that is unbearable and I am still golfing and bowling so I'm not really complaining that much about it.  I think you're right about the exercise.  It does help to keep moving!  Enjoy your summer.  We've hardly had any summer here yet.  It's been pretty weird weather!

    Hugs....Rita

  • PatMe
    PatMe Member Posts: 30
    edited July 2009

    Hi everybody -I went into the onco's today. They wanted to do blood tests -they said it was  very unusual to get an allergic reaction this far out from chemo. But my white counts were good and no sign of infection, so they have decided I did indeed have a reaction to the chemo. I asked if they would stop chemo or change it and I was told that no they would go ahead with the chemo and that what they were worried about was me going into anaphalactic (sp?) shock. And that I should call at the first sign of a reaction. WTF!!  If I'm going into shock I don't think I would be able to call.  Oh, well my body just has to add a little drama to this whole thing. LOL

  • germangal
    germangal Member Posts: 7
    edited July 2009

    hi there -

    I also take the fish oil supplements, at the recommendation of GP and with Onc's ok. My GP suggested keeping them in the freezer, taking them slightly frozen keeps the burps away and also removes any fishy flavor ...

  • Annabella58
    Annabella58 Member Posts: 916
    edited July 2009

    Hi all, Rita so nice to e hear your voice! 

    Patme, I had to laugh; I kept on having all these weirdo SEs and they kept on denying it was the chemo....Of course, it's the chemo. 

    If I were you (and I was there, having all kinds of SEs), in fact, my onc nicknamed me "side effect Sally"; I would insist that you are staying put until a good hour after chemo ends.  That they need to schedule you first thing in the AM, then they need a slooooowwww drip (I took 4 hours, and it was the FU every time, too.  Got to love the name tho.)  Slowing down the drip stopped alot of the SEs for me, but I just sat there and refused to leave and read a book for an hour or so.  They told me then, that any anaphylactic reaction usually happens within the first 45 mins to 1 hour after it.

    So that is what I would do.  I also got myself my onc's cell phone beeper, instructions on what to do for anaphylaxis (ephipen, which they wouldn't give me, but benadryl in lieu of that, which I got)and an after hours emergency number.  I made sure my hubby would be around for 3 or 4 days after.

    Given all this, after that first weird reaction, I had no more of them, making me look like a neurotic patient that imagined it.  I didn't.  Better safe than sorry!! Perhaps you will now be accustomed to it, and it won't happen.  It might be a good idea to discuss prophylactic measures with your onc tho, before the next treatment, such as benadryl, etc.

    Good luck!

  • Annabella58
    Annabella58 Member Posts: 916
    edited July 2009

    p.s.: Pat, they also said NO SUN.  I am a redhead, or was, but I still have a general tendency in that direction.

    The chemicals make us super sun sensitive, and rashes are the result also.  Could just have been that?  They said esp. if fairskinned.

    xox

  • golfer779
    golfer779 Member Posts: 410
    edited July 2009

    Wow ... been way igcognito as of late.  Just spent a week in Vegas with the Chemo Jan 08 group, a week that I totally cannot explain .... everything I expected plus so much more.  

     My step daughter is getting married this weekend, so busy, busy, busy with work and festivities this week.  Should be back to the boards next week.

    Hope everyone is doing okay and enjoying the summer ... I DO think of you all often!!!

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