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CMF Question

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Comments

  • Tobycc
    Tobycc Member Posts: 578
    edited November 2014

    so thankful I found this thread! I will be starting this regimen next Friday. I am triple negative, but cannot do adriamyacin due to cardiac issues. I did two rounds of cytoxen/ taxotere.

    Then developed a pretty severe reaction, similar to hand foot syndrome. MO stopped it and switched to taxol

    Did three rounds weekly. Again, same reaction. Also weight gain due to fluid retention, horrible muscle pains in legs

    SO, off we go to this cocktail. Normal SE's to expect? My nausea controlled by Zofran...yes to fatigue. Pain the worst

    I work full time....married with fraternal twin boys in college

    Thanks!

    Kath

  • mandy1313
    mandy1313 Member Posts: 978
    edited November 2014

    Hi Kath!


    Welcome to the CMF group. Sorry it's taken a while for anyone to answer but I'm guessing we were all busy with Thanksgiving. But this is a caring group and someone will usually hop on with suggestions for what maybe e bothering.

    Wow, you've had a lot of difficulty with the different chemos that your onc has tried. Some of the side effects of CMF may be different because you've already had other chemos. But if you let us know what you are experiencing, someone will surely have a suggestion. Two quick things--I had weekly acupuncture during my CMF and it helped with mouth sores (never had any but did have dry mouth), fluid retention in my legs (went away and never came back)and my energy increased. So you may wish to ask you onc to refer you to an acupuncturist.

    Anyway take care and hope you have had a good Thanksgiving.

    Hugs,

    Mandy1313

  • Fourminor
    Fourminor Member Posts: 118
    edited December 2014

    I'm starting this on Friday, but I am still very ambivalent due to an oncotype of 20. MO thinks I need to do it. I am not convinced, but I figured I'd try it and see how it goes.


  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    thanks Mandy! Anything would be better than the taxol reaction. I got the name of an acupuncturist. Will call. I think he's pretty expensive. How often did you go?

    I have been using the biotene products, salt/baking soda mouthwash, and homemade coconut oil toothpaste for mouth sores and it has worked great.

    I hate the fluid build up, especially with cardiac issues. But my MO works with my cardiologist, so that is good!

    Blessings

    Kath

  • ml143333
    ml143333 Member Posts: 190
    edited December 2014

    Welcome Toby and Fourminor!

    CMF has not been bad at all for me.  Nausea is controlled with Zofran and Compazine (for breakthrough nausea).  I try to get a lot of rest but most of the weekend after chemo Friday, I just feel like I have the flu...kind of run down and extremely tired.  My hair is thinning, but really only to me and my hair dresser.  I haven't gained or lost any weight while on chemo. 

    I will be going for infusion #3 on Friday (12/7/2014).

  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    Thanks ML!! I already lost my hair, so maybe it will continue to grow back. I have about an 1/8 of an inch now, with 4 LONG hairs like Cindy Lou on the Grinch!

  • ml143333
    ml143333 Member Posts: 190
    edited December 2014

    Toby - bless your heart.  Mine is thinning, but have been using Nioxin shampoo and conditioner.  Don't know if that helps or not.  I know the texture of my hair has definitely changed as well.  I used to have more coarse hair and it is definitely softened up.  Don't know if that is due to the CMF or the Nioxin or both.

    Hey - my favorite Christmas character is the Grinch so GO Cindy Lou Who!!!

  • Robin3
    Robin3 Member Posts: 93
    edited December 2014


    Awww, Welcome fouriner and tobycc  sorry you guys have to go through this. I used the biotene products to prevent mouth sores. I got pretty nauseous on the chemo, the day before the chemo, they would start me on a patch (can u believe I can't remember the name). I would put it on my arm on Tuesday (I would put plastic over it) and take it off on Saturday. Plus used Zofran and Compazine. Take it BEFORE you feel nauseous. Just keep up with the meds. Cause once the nausea sets in, it's hard to beat it. I also sucked on lemon drops. I work in a preschool and also am a Zumba instructor, I was able to keep my classes I cut down to two a week, but would sub like crazy when I felt better. I swear it kept me sane!!!  Just remember to take care of yourself, and be kind to yourself. If you have any questions, we are all here to help you. These lovely ladies helped me through the worst time of my life and i'm happy to stick around and help others, like they helped me. xo  Robin

  • Robin3
    Robin3 Member Posts: 93
    edited December 2014


    Fourminor, my oncotype score was a 19. My doctor was comfortable with me doing cmf. He was not comfortable with me doing no chemo. I trust my doctor with every fiber of my being. He is a doll. I did chemo followed by radiation. If that helps you at all.

     

  • Fourminor
    Fourminor Member Posts: 118
    edited December 2014

    Thanks Robin. I've already picked up the Biotene and had my long hair trimmed up above my shoulders for body.

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2014

    Welcome Tobycc and fourminor. You have found a good place to hang out because there is always somebody to help you get through this part of your journey. Never hesitate to ask if you have questions. We all had questions....and lots of them....when we started this program, too.

    First, Robin's lemon drop suggestion is excellent. I bought bag after bag of Brach's lemon drops (the type with the slight bit of sugar on the outside) and sucked on them to ward off nausea. They really worked.

    Ask for some ice chips while you are having your chemo and suck on them through the process. That helps ward away mouth sores, too, as well as the products you have already purchased and are using.

    Tobycc...I hope you find this chemo much easier to tolerate! I'll keep my fingers crossed for you. It is usually pretty "doable" for most gals.

    Both of you check in often and let us know how it is going!

    Rita

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2014

    Hi there Rita.Good to see you! Happy

  • Fourminor
    Fourminor Member Posts: 118
    edited December 2014

    Hi ladies,

    So i went for my first treatment today and it was horrible. I had an allergic reaction to the 5FU. It was the worst feeling in the world. I was ambivalent about doing chemo in the first place with and I am not putting that into my body ever again. I'm certainly not switching to something more toxic.

    How often does that happen? i was covered in hives, felt insane and like a rock was sitting on my head.


  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    so sorry!!!! My first one was today....hoping for less SEs than from taxotere or taxol. Feet and legs swollen so bad hoping lasix works

  • ml143333
    ml143333 Member Posts: 190
    edited December 2014

    Fourminor...so sorry to hear about your allergic reaction. Hope you are doing better.

    My infusion was pretty uneventful but I do notice a bit of trouble trying to swallow when eating. 

  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    MI. And Four....how many are you doing? Three weeks apart?

    Not sure for me...my MO wants to think about it. I will "get credit for time served" for having 2 cytoxen/ taxotere and 3 taxol.

    He spent time explaining yesterday CMF was and is still gold standard. Especially for TN

    Gentle hugs and stron prayers

    Kath

  • mandy1313
    mandy1313 Member Posts: 978
    edited December 2014

    Fourminor: so sorry to hear about your allergic reaction to the 5Fu. That must have been really frightening.

    Tobycc: I found that acupuncture helped me with swelling in my feet and legs. I went once a week while I was having chemo and it really helped with many side effects.

    Hugs to everyone.

    Mandy1313


  • Fourminor
    Fourminor Member Posts: 118
    edited December 2014

    I am feeling better but I really did not feel great all day. Pounding headache from last night through this afternoon, couldn't get my rings on--i guess from the fluids they ran into me, my cheeks were flushed from steroids, I had no appetite at all, seemingly my bowels were shut down completely, I felt spacey and weird.

    I did some research into allergy to 5 FU, it seems it is not one of the more common allergies, and is pretty rare. My reaction would be classified as mild-moderate and should I want to continue I probably could be premeditated with steroids days before and have them dilute it from a push to a very slow drip. Although there is no guarantee that I would not react again anyway.

    I'm certainly not going to consider moving up to another regimen that's more toxic. I only really got a full dose of methotrexate yesterday and half of the 5-FU and I never want to feel like this again.

    The thing was i was very ambivalent about doing chemo at all. My oncotype score was a 20, I had a mitotic score of 1. From the charts on the oncotype it seems that there is a 2-4% chance that chemo will make any difference in the ultimate outcome, i.e. a 96-98% chance of it being worthless. MO kind of twisted my arm, but the real reason I did it was because if this comes back and I die without seeing my son grow to be a man, I would want him to know that I did everything to fight it. But in the middle of the shit last night, I could only imagine how terrified he would be to see his mother the way I was.

    I'm going to go to another MO and get a new opinion. If there is any release of early SOFT trial data to show benefit with ovarian suppression added to Tamoxifen from the meeting next week at San Antonio, I would be open to just moving forward with that.

  • mandy1313
    mandy1313 Member Posts: 978
    edited December 2014

    Hi Fourminor! Yes, definitely get a second opinion. I got opinions from two major cancer centers and the treatments they sugested were so different that you'd have thought I had two different diseases. :-) I had an oncotype of 15 if I recall correctly and both places did suggest chemo, however. So I don't think it is unusual that with a 20 that your onc suggested chemo. However as you mentioned you may be able to use the hormonals (tamoxifen or an aromitase inhibitor) instead of chemo---it certainly is something to look into. As someone with allergies, I certainly sympathize for your reaction. So don't let your doctor make you feel small because you are worried--sometimes the next time is less of a reaction but sometimes it is more. Take care. Go see the second opinion doctor who should be at a different medical center than your first (and ideally in a different city) and do what is best for you.

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2014

    Oh fourminor....I am so sorry that you had a bad reaction to the 5FU. I am glad to hear that you are feeling better now. I agree with Mandy. Get another opinion. There way be ways to get around this and if not, I'm sure there are several different options. Hang in there! Hugs!


  • ml143333
    ml143333 Member Posts: 190
    edited December 2014

    Infusion #3 was on Friday and it hit me harder than the other two, but I'm not complaining at all.  I'm trying to look at it like this...the harder it hits me, the harder it is hitting any rogue CTC's.

    I just feel like crap, but that is to be expected.  I would have stayed home from work today, but am out of leave and still need to pay the bills.

    Sorry for the small pity party.  :)

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2014

    Oh Mandy! We've all had those pity parties. The bad part about any chemo is that is cumulative. There is still some of the drug in our system when they give us the next dose and so it accumulates bit by bit in our bodies until we are finished. Drinking plenty of water helps to flush it through our bodies faster and better. Sometimes I found that it actually helped to stay more active when I was feeling a little "under the weather." Hugs! Hang in there!

  • ml143333
    ml143333 Member Posts: 190
    edited December 2014

    Thanks, Rita!

    Being at work has helped kind of, in that I have to keep my mind on other things and don't focus as much on how my belly feels.  I could shut my door at lunch though and take a nap, but better try and put something in my belly that will stay down.

    I am looking forward to going home tonight and relaxing with my family. 

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2014

    I used Boost from time to time to get some nourishment. I liked strawberry the best.

  • Maryland2014
    Maryland2014 Member Posts: 51
    edited December 2014

    Hey ladies, have not been on here recently, Thanksgiving and the Christmas preps! Have my 6th infusion on Thurs. then I will be half done! Yea!! I'm doing well, few SE, but recently developed a rash on the backs of my hands, anyone else had this? Just red, no itching, seems I got it after a previous infusion, but did not connect the two, until now I have it again after the infusion last week.

    When I got my Cytoxan refilled this time, they were out of pills and gave me capsules. And lo and behold " no more stomach pains!" But I seem to have traded that for more frequent nausea, even had to take a second Zofran tonite. Guess I have to decided which I'd rather deal with!

    Hang in there Mandy, we are going to get thru this! Hope you had a good visit with your family for Thanksgiving. Dian

  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    checking in warriors ! Well, since Friday my first one the SEs have been different than the taxol family. I did call today because nausea breaks through the Zofran

    I have 8mg and taking every 6 hours. Not getting sick, just really nauseous. But I can keep down water, soup and an egg tonight

    They are calling in the patch. I am hopeful it will subside. Other SE. Are similar to neulasta shot. Achy arms, shoulders, etc

    Not sure how many I have to have. Is 12 the magic number?

    Mandy, like you I work FT. Only one of my staff even knows. Work does help. In the morning though boy do I drag!!!! :)

    Blessings and hugs

    Kath

  • Maryland2014
    Maryland2014 Member Posts: 51
    edited December 2014

    Hi Kath, Welcome, are you doing IV Cmf? I am just about the only one on here doing oral CMF, I get infusions of m/f on day 1 and 8 and take cytoxan pills for 14 days beginning on day 1. I am in for 6 months or 12 sessions.My SE have been minimal, nausea and some stomach pains from the pills.

    Where are you in Fl, my favorite spot is Manasota Key on the gulf

  • ml143333
    ml143333 Member Posts: 190
    edited December 2014

    Kath - work is a double edged sword.  lol.  It gives me something to take my mind off the SEs but sometimes it is just difficult.  My boss knows and she is a survivor as well and very supportive.

    Dian - Sorry about the rash.  Has it calmed down yet?  Nausea bites no matter what we take to control it.  Today is the first day since Friday that I haven't had to take Zofran.

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2014

    Kath, Dian and Mandy.....It always helps when there is somebody else actively going through the treatment at the same time as you are so I'm glad you three have found one another. I am also glad that you're all doing pretty well.

    Kath, we are headed to FL for the winter in January if all goes as planned. We stay in Cape Coral. What part of the state are you in?

  • Robin3
    Robin3 Member Posts: 93
    edited December 2014


    I too had a rash, I thought it was due to the medicine not the actual chemo. They used something to help with the nausea, it started with an E (I have chemo brain, I can't recall it). Then we switched to the patch. I didn't have any problems with nausea after that. Each treatment you don't bounce back as quick cause it's cumulative but it was better than the alternative. Fourminor, i'm so sorry to hear about your allergic reaction. Definitely get more opinions, you can't have the treatment be worse than the disease. This whole thing is hard enough. Please keep us posted on what they decide and how you are doing.

     

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