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CMF Question

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Comments

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    scarp,

    Sorry to hear that your daughter is having such terrible problems!  I hope that she'll be ok. 

    I'm having my annual tests and followups with my surgeon, and other dr. appts., and it's no fun at all...  so if I'm not around much, you'll know where I am!   Friday I have another breast MRI, and the scheduling office and the MRI dept. at the hospital don't talk to each other, so I've been getting tons of phone calls, asking me the same questions over and over!   Oh, and...  some questions that I know they have the answers, 'cause I went there last year for the same test.  Like... do you have breast implants?  Did you have ca?   Sorry, but it really gets annoying! 

    Harley

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

    Hang in there, Harley.  This is a nerve-wracking time for you with the "routine tests" and hectic appointments.  I'm praying for good test results for you, hon.  Let us know as soon as they come in so we can help you celebrate!   As for members of the medical profession, I think many of us could teach them classes in organizational skills!  LOL

    Hugs,   Rita

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Thanks, Rita.

    It looks like I won't be getting the breast MRI on Friday, because my insurance won't approve it.  I called, trying to talk some sense into them, but they just said the case was pending, for more information from my dr.   WTH??   I told the 'case management' person that if I don't get a response by 5:00pm today, I will have to cancel the MRI...  I won't get a test until my insurance gives authorization for it.  I don't want to have to pay for this test.  The Tricare rep. told my surgeon's nurse that I can either have an u/s or a mammogram but NOT an MRI. 

    It's not bad enough that I'm nervous about all these tests, but now I can't even have these tests. 

    ....sigh

    Harley

  • colleen1960
    colleen1960 Member Posts: 107
    edited April 2009

    Scarp - I am very sorry to hear about the troubles your daughter is going through.  I will keep you both in my thoughts and prayers.  I know what you mean about wishing you could go through this for her.  My daughter is also 13 and most times drives me crazy, but there isn't anything I wouldn't  due for her.  Keep good thoughts and maybes seek a different opinion.

    Harley - Dont' you hate Insurance Companies!!!!  I am sure you will be able to sort this all out. And get approval for the test. 

    I saw the BS today and all went well.  She examined me and we set up Mammo and next visit for Sept.  I also was measured for new bras.  They fit so nice and it makes such a big difference in the way everything looks!!!!

    Colleen

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Colleen,


    Thanks!

    When you get the right bra that fits right, doesn't it make ALL the difference?!

    Hugs

    Harley 

  • aprilgirl1
    aprilgirl1 Member Posts: 806
    edited April 2009

    Scarp - I am also sorry to hear about the scoliosis (spelling?) that your family just discovered.  My dd is almost 12 so I can imagine she is not looking forward to a brace.  However, I knew two BEAUTIFUL girls in high school that wore a brace for scoliosis the first two years of school.  They were really beautiful, smart etc. and as much as I'm sure it was upsetting they were both very social and popular.  I also have some of the cafe au lait birthmarks so was looked at a few times.

    Harley - I can't believe your insurance won't approve an MRI.  I hate that insurance companies have such power - shouldn't that be up to the doctor?!  You will get this sorted out, I'm sure of it, but still.

    Colleen - sounds like a good doctor appt.  New bras are always good!

    Hope everyone else is doing well!

    Susan

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Scarp,

    I know it must be very traumatic for a young girl, to have to wear a brace.  That is a very difficult age, too, when being popular is SO important to a young girl!!  I was never very popular in school, so I can really feel for her.

    Thanks, Susan.  I told the insurance rep that I was just going to call the hospital and cancel the MRI, since they wouldn't authorize it.  That is when she had the other woman call me, and we talked for awhile.  I explained my bc history, and even mentioned that I felt a lump SIX months ago, so I hope she will have the good sense to recommend that they authorize the MRI ASAP!  She said that the director has to authorize it, and.... it can take up to FIVE business days!  But, I was mad, because it has been almost TWO WEEKS, and they didn't take action until today.  If I don't have a phone message when I get home tomorrow after my dh's colonoscopy, from the insurance co., telling me it's been approved, then I'll just cancel it and re-schedule it when they finally get their act together. 

    Thanks everyone,

    Harley

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

    Oh my gosh, Harley!  You certainly don't need all this run-around!  Hang in there!

  • mandy1313
    mandy1313 Member Posts: 978
    edited April 2009

    Just checking in and sending my best to all of you gals.

    Mandy

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

    Have you calmed down after your train ride nightmare, Mandy???? 

    How are our gals in treatment doing this week?  We're going to be sending out the search light for a few of you if you don't check in!  :-)

    Rita

  • Harley44
    Harley44 Member Posts: 2,126
    edited May 2009

    Rita,

    I probably shouldn't have shared my rantings with you, about my insurance problems.  I just get so mad when these things happen!  Strangely, I was calm and didn't get REALLY MAD and yell at the insurance rep yesterday.  Today, after my husband's colonoscopy, which went great - no polyps this time!, I called the phone number that the woman from my insurance co. gave me so I could reach her.  I left a message, and explained that I would have to cancel my MRI if I didn't hear from her by 3pm.  She called me back FIVE minutes later!!   Apparently, she took our conversation to heart, and she spoke to one of the directors, and they approved the MRI.

    So tomorrow, I get to wake up EARLY AGAIN, and drive up to Wilmington, and have the breast MRI.  YIKES!  I hope they can find a vein for that contract dye!  My veins are pretty shot from chemo.


    Thanks for letting me ramble.  I'm just glad that everything worked out ok.

    Hope everyone is doing well. 

    Have a great weekend!!

    HUGS
    Harley

  • Annabella58
    Annabella58 Member Posts: 916
    edited May 2009

    Gosh, the computer crashes for a day or two and I miss alot!

    Harley, sounds like you've gotten things sorted out...these drs. "annual" visits are always so ghastly, and the same thing happened with me.  Insurance says typically that with implants, you only need an MRI once every two years to check for leaks.  Otherwise they will go with an U/S (obviously, not a mammo w implants, tho some drs. OK them, mine doesn't)

    My oncologist had to call, so I hope it's all smoothed out for you.  He got them to cover it, as my cancer was missed by mammo and blood tests.  But he got it done.  Not that anyone enjoys those things.......important tho.

    Scarp, one of my daughters' best friends had to wear a brace.  These days, they are much lighter and less noticeable.  She was extremely popular, very pretty, and she just carried it off with such class.  Like braces, everyone forgot about it after a week or so.  She'd take it off at sleepovers and all the girls were quite matter of fact about it, no big deal for them or her.  All my very best to your daughter, Oh that age, it's a tough one.  She will get thru it, esp. with the example of your courage right in front of her for inspiration.   A second opinion is always good, tho.  My daughter is 20 now, and very on her own, until something hits, then...........right back to mom.  We wish we could go thru this stuff for them, but they are stronger than we realize.  Meg  her friend, was even on the swim team, and wore it at practice.  And at the prom, her date was wearing it and dancing....kids, gotta love them.  I hope it all works out for her and you.

    Colleen, you sound well!  Getting a pretty bra is such a good feeling, isn't it?  How are you feeling these days?  Energy coming back?

    Mandy, sorry about the facebook, I messaged you, but this computer of our got a virus, and it wiped half my stuff off here.  Hubby got this back up and running thank god.

    Everyone feel well tonight.  Love to all

    annie

  • Annabella58
    Annabella58 Member Posts: 916
    edited May 2009

    p.s. Rita, thank you so much for the arimidex tip!  My feet and hands are completely normal now, that it is chilly.  I can even get my rings back on.

    Guess I just have to move further north.........

  • PatMe
    PatMe Member Posts: 30
    edited May 2009

    Goodmorning everyone,

    I start chemo May 7. I'm taking that day and Friday off from work. I'm doing CFMx6, One every 3 weeks. I'm planning on getting the next 5 on Thursday mornings and going to work that afternoon. Do you think that will be doable? I sit at a desk. Not up on my feet much. Thanks for any advice you can give me.

  • golfer779
    golfer779 Member Posts: 410
    edited May 2009

    Pat, I did the same as you for my first txt (txt on Thurs and Fri off).  I pretty much waited for the side effects to hit ... and they never really did !!!!  After that experience I found that I could work full time throughout txts. 

    Best advice I was given .... drink, drink, and drink your water.  I'm at work right now so need to cut this short .... I have the hunch others will jump on board with there helpful hints !!!!

    Carol

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

    Pat, I always felt fine the first day of my treatment, so I think it's very possible that you'll be able to go back to work after it.  If I had any side effects, they came on the third or fourth day after treatment.  I did the same chemo regiment as you. 

    Hugs!  This is doable! 

    Rita

  • Harley44
    Harley44 Member Posts: 2,126
    edited May 2009

    Pat

    So sorry that you had to join our group, but I'm so glad that you found us!  Welcome!! 

    I didn't get CMF, I'm just an honorary member.  I had Taxotere & Cytoxan.  The ladies here are just wonderful!  They are so very knowledgeable and very warm and friendly, too.

    Good luck!  I'll be thinking of you, especially on May 7th, when you have your 1st CMF!! 

    HUGS
    Harley

  • Harley44
    Harley44 Member Posts: 2,126
    edited May 2009

    Annie

    You are so right.  This time of year is so nerve wracking, with all the tests!! 

    I NEVER knew that I was not allowed to have screening tests EVERY year!  I thought it was 'as if' I still had breasts, and needed screening for local recurrence...  at least, my surgeon told me that I would need these screenings every year, because 'he can't be absolutely sure that he took out ALL my breast tissue. 
    Anyway, my surgeon mentioned that maybe I could go to having the MRIs every two years, after this one. 

    My insurance just tries to deny all my claims, so I usually have to fight them every step of the way!

    Funny, but this morning, I said to my dh, " GEE, I'm sorry I fought so hard to get my insurance to approve this test, because I really don't want to go today... "  I was very tired and wanted to sleep in...  :D

    Hope you are doing great!! 

    Hugs

    Harley

  • mandy1313
    mandy1313 Member Posts: 978
    edited May 2009

    Pat,

    One thing that many of us have had problems with is constipation from chemo and the anti nausea drugs.  Be sure to take a stool softener the morning of your chemo and every morning for a few days after. You will not regret it.  

    The other thing I found helpful was to have ice chips to suck on during the chemo...I think it helped prevent mouth sores but who knows.  Later on I used lemon Italian ices during the chemo.  I found I did not like the taste of ice so much.  

    This is a pretty doable chemo and the ladies on this thread will do all they can to help you through it.

    Mandy

  • PatMe
    PatMe Member Posts: 30
    edited May 2009

    Thank you everyone for your replies. I told my boss about your replies and that I would probably be just fine to work through chemo. He was happy- to say the least.  It's just the two of us in the office - so when one of us is out it really does make it very hard.

    Hope everybody has a good weekend. And thanks again.  

  • samiam40
    samiam40 Member Posts: 93
    edited May 2009

    PatMe, welcome!  I am on the same schedule as you, 6 treatments 3 weeks apart.  I have had 3 so am half done.  I also work in a small office, just me and my husband, so I know how hard it is to take time off.  If I can't work, no correspondence gets out.

    I am going to be the voice of caution here.  I felt absolutely awful after my first CMF and had to sleep the entire rest of the day.  If you really don't want to miss work, you might want to think about whether it would be possible to schedule your treatments on a Friday (either in the morning and take the afternoon off, or work the morning and have your treatment in the afternoon).  I felt better the day of my 2nd and 3rd treatment, so working would have been possible after those.  Also, I know everyone reacts differently, but I have a bit of nausea and fatigue on days 2 and 3 after my treatments, so I try to just write those days off.  If you were to get your treatments on a Friday, you could recover on the weekends.  Just some food for thought.

    Overall, however, CMF is extremely tolerable and I feel absolutely normal and am able to function at 100% for the vast majority of the time. 

    Good luck and keep posting.  This is a great and extremely supportive group of women!!

  • colleen1960
    colleen1960 Member Posts: 107
    edited May 2009

    PatMe - Welcome to this great group of women.  I was actually on a trial and received 8 treatments every 10 days.  So I believe the se hit me harder due to the fact I was going every 10 days instead of every 21.  But no se was unbearable.  This treatment is doable.  Like most everyone said drink plenty of fluids, rinse your mouth several times a day (I used biotene mouthwash) and stay ahead of any nausea with the meds they will give you.  And always come back to this thread for any advice (always good) and or just to complain.  Everyone here are great listeners.  I wish you all the best!!!

    Annie - The energy is coming back slowly, I always seem very tired by early evening.  I went to dinner last night with some family members for my sisters retirement and by 9:00, I could barely keep my eyes open.  I am trying to walk a lot more and my son got the Wii Fit for his birthday and I started working out slowly on that also. lol.  The machine is mean!!!!

    Hope everyone had a nice weekend.  It rained mostly in NY!!

    Colleen

  • PatMe
    PatMe Member Posts: 30
    edited May 2009

    Thank again everyone for your great advice. I'm going to go tomorrow and get stuff for my chemo bag. I was going to go today but it has rained the entire weekend, Just couldn't seem to make myself get out in it,

    Coleen- are you still tired from the chemo? When did you finish? 

    Harley-rant away about your insurance co. I'm right there with you -it took two weeks for mine to approve my oncotype test.

    Hope everybody had a good weekend.  

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

    PatMe....I always found that lemon drops or anything lemon flavored helped to ward off my nausea.  Mandy gave you great advice about sucking ice chips during the chemo to prevent mouth sores.  Like Colleen, I also purchased Biotine mouthwash and toothpaste (Wal-mart, K-Mart, etc.) and used them faithfully during the entire treatment period.  Between the ice chips and the Biotene, I did escape the mouth sores. 

    We'll be here to answer questions and serve as your cheering gallery as you start your chemo later this week.  Do not worry too much about the actual treatment. Although the unknown is so scary, the actual treatment is usually pretty uneventful.  They're going to sit you in a chair or recliner, insert the IV (if you don't have a port) and just let the drugs drip in.  Some people even sleep during the treatment!  Others read or talk to friends.  Our treatment center even has a TV with headphones.  I was so worried about my first treatment that I actually made myself sick before I ever got there. Silly me!!! LOL

  • samiam40
    samiam40 Member Posts: 93
    edited May 2009

    What Rita said!  The worry is often worse than the actual treatment.  I had the Sunday night blues last night (since my treatments are on Mondays), but I had my 6 year old's birthday party and Ambien to distract me.

    I have my 4th CMF infusion today, along with my first infusion of IV Zometa, as I am participating in the bisphosphenates study and was randomized to that drug.

    Looks like its going to be a beautiful day here in the Midwest.  Hope everyone can get out and enjoy some spring weather.  Take care.

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

    samiam.....Good luck today!  Just think....This evening you can mark #4 right off your calendar!  You're on the downhill slide now!  How's your hair doing?  Have you noticed any thinning? I am glad that you're doing the Zometa study.  I've read alot about the Zometa and it's VERY interesting.  I have a friend who takes it for multiple mylenoma. She had some fractured vertebra in the back and after the Zometa infusions, they have completely healed.  I can see where it might eventually have a standard place in bc treatments if the trials substantiate the current hype!  My hat goes off to you for going the extra mile and participating in the trial.  HUGS!

  • aprilgirl1
    aprilgirl1 Member Posts: 806
    edited May 2009

    Welcome Patme!  The advice you have received is great.  I am on CMF, but on a weekly schedule. I agree with all that the fears of chemo are worse than the actual infusions and SE's.

    I also use Biotin and have not had any mouth sores. I get my chemo on Thurs. or Fridays.  Last week it was on Friday.  Friday night I feel "off", Saturday I take it easy, but feel about 75% - we went to a neighborhood Cinco De Mayo party.  Sunday I feel totally normal with good energy.  

    Samiam40 - you are 2/3 done!  I am as well, but I have also had the "blues" so to speak.  I think we can see the light at the end of the tunnel, but I am SO SICK of going to chemo.

    RitaJean - my hair has definate thinned - it is ALL over my house.  I have very thick hair so it is not noticeable to the general public, but most my thinning is at the temples - so that area goes WAY back now.  It should be interesting when if grows back in.

    Hope everyone has a great day!

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

    Aprilgirl....my hair was thick, too.  It is even thicker now than it was when I started chemo.  Be prepared!  LOL  Glad you're marking off those treatments, too.  Chemo gets pretty old but just take them one at a time.  HUGS!

    Rita

  • Harley44
    Harley44 Member Posts: 2,126
    edited May 2009

    Patme,

    I also found that the fear of the unknown was worse than the actual treatments...  I had 4 tx of Taxotere & Cytoxan, and I did lose my hair.  For me, that was the worst part of my tx.  The reason I'm on the CMF thread so much is that I thought I was going to get CMF, but I didn't.  My onc chose Taxotere & Cytoxan for me.  My hair was very thin, so I probably would have been one of those rare people who lose their hair with cmf... who knows? 

    The advice about Biotin is wonderful!  I used the Biotine toothpaste and mouthwash regularly, and I didn't get any mouth sores.  I am someone who was very prone to mouthsores BEFORE my bc dx...  I was just SURE I was gonna get them, but I didn't.

    samiam,

    Glad that you are  doing so well!  Hope your tx goes well today! 

    Aprilgirl,

    Glad you are also doing well with your tx.  Your hair WILL come back in, for sure!  I lost my hair with Taxotere & Cytoxan, but it was in layers... at first I had the 'receding hairline' thing happening, but the very next day, I had little white fuzz growing, and I looked like SLUGGO!  Interestingly enough, I never lost ALL my hair at once! 

    I think you'll be fine, you won't lose ALL your hair. 

    Good luck, girls!

    Have a great week!!

    Hugs

    Harley

  • golfer779
    golfer779 Member Posts: 410
    edited May 2009

    Quick question ... going in for my 6 month onc check up tomorrow.  Since I had my MRI and Mamo done at the same time in Nov, thinking I'm not really due for any tests, although the thought of waiting a year is not a real warm and fuzzy to me.  So ladies, when you go in for your 3mo/6mo etc visits, what exactly are your being checked for.  Do you have  blood draw each time ?

     I may barking up the wrong tree, but I have this hunch the onc will ask how I'm doing, maybe do a breast/chest exam and send me on my merry way.  Guess I'm looking for something more, and curious as to what you all have have done as far as diagnostic testing.  Not looking for problems, yet don't want my head in the sand either.

     I will have to admit I am tolerating the Femara much better today than 6 months ago.  Thank you massage and accupuncture therapies !!!

    Any thoughts ???

    PS ... hang in there you gals in treatment, you'll be here asking these same questions before you know it !!!!!

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