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CMF treatment survivors and experiences

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Comments

  • Inthegrey
    Inthegrey Member Posts: 68
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    The same happened for me when I did round #2, days 4 and 5 I crashed. #3 was better for me and I made sure not to over do it and I had lots of energy weeks2-3.Just had #4 yesterday and feeling dizzy/head pressure today, staying in bed. I hope tomorrow is better.

  • RiRi11
    RiRi11 Member Posts: 70
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    Im hoping 3 is better for me too and praying your 4 goes smooth.

  • MILO2018
    MILO2018 Member Posts: 16
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    thanks for this info

    Starting Chemo CFM and finally scared and nervous about my diagnosis

    Thanks for this inf

  • MILO2018
    MILO2018 Member Posts: 16
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    love to share experience with you. I am 66 stage 2b onocotype score of 27 starting CMF 7/9/18

    Info on other site has me conconcermrf

    Pls share you experienc

  • MILO2018
    MILO2018 Member Posts: 16
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    thanks for this post. Oncotype 27

    Completed radiation first as dr was waiting for results of TAILORx study

    Starting CMF 7/9/18

    Every two weeks for 8 sessions.

    Literature online had me upset since CMF seemed like an older chemo not typically used. I am hormone positive so will be on meds after chemo

    Your post was encouraging.

    Sending🙏🙏❤️to you



    .


  • MILO2018
    MILO2018 Member Posts: 16
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    thanks Kate

    This was so helpful

    I jut finished radiation

    It was relatively easy for me

    StartingCMF next week 8 treatments every two weeks and then hormone meds

    Thsnks sharing

    Soooo helpful when you need real advice from people with same experiences

    God Bless

  • Inthegrey
    Inthegrey Member Posts: 68
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    Hi Milo2018 - I’m so glad you joined this site! That other website that was referenced in the other forum was not good to me for information. CMF is a first generation chemo I believe and was used when the OncoType test was developed in the 70’s. Sloan-Kettering here in nyc still uses it a lot if appropriate to a person’s diagnosis - that is where about 4-5 of us on this site are being treated. It was explained to me that CMF is an “institutional preference” by my original oncologist who was not at MSK. I wonder if your oncologist spent time at MSK since he/she is recommending it. I feel good that such a stellar, highly recognized center as Sloan still uses it very often. Please do not be concerned about literature online that you said you have read. It is not just for “older” people. I am only 52. It is more tolerable as far as side effects and just as effective as the onco test was based on it after all.

    Did the previous posts in this forum help you with advise? It looks likes you replied to a few posts, but they all stacked at the end of this thread so I cannot tell who you were replying too. I was very anxious too at my first treatment and found that it was not bad at all overall, especially compared to what others endure with stronger treatments. I’m glad to hear radiation was relatively easy for you! For many it seems to be more difficult. I hope I do not have to have it as I am opting for a BMX once chemo is done.

    Any other concerns please post and let me/us know how you are doing. Keep cool in this hot weather too! 😅☀️


  • MILO2018
    MILO2018 Member Posts: 16
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    I really appreciated your response and thank everyone out there for the help and support.

    I am also being treated at Sloan

    I hustled finished radiation 16 treatment and 4 boost in NYC last week

    Recently retired to DE beaches so Chemo will be at the Monmouth no site❤️❤️❤️

    You all have been amazing

    I could only find older info on CMF and was scared

    ❤️

  • MILO2018
    MILO2018 Member Posts: 16
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    thanks for posting

    Very helpfu

  • RiRi11
    RiRi11 Member Posts: 70
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    Good evening CMF crew,

    Have any of you experienced asore throat? My throat is sore (no fever) or any other cold symptons. Im not sure if it is from the chemo or Im coming down with something.

    Thanks in advance

    Ria

  • Inthegrey
    Inthegrey Member Posts: 68
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    Hi Rita - I had a slight sore in back of throat after my 2nd treatment, not a true sore throat like a cold. I rinsed with a soda/salt water rinse after every meal and it seemed to do the trick. 1Cup water, 1/4 ts baking soda, 1/8 ts salt. I’ve heard of mouth sore SE but not sore throat. Hope you feel better!

  • Inthegrey
    Inthegrey Member Posts: 68
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    sorry Ria, not Rita. My phone autocorrect did that, ugh.

  • RiRi11
    RiRi11 Member Posts: 70
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    thank you so much inthegrey

  • Shell07
    Shell07 Member Posts: 8
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    I am just finishing round 8 of CMF chemo today!! It has been well tolerated with few SE. I have been taking Claritin the morning of chemo to help with sinus pressure I would get during the cytoxan infusion and milk of mag to keep on top of the constipation.

    Now off to Sloan for deep inspiration breathe hold radiation in a couple of weeks. Would love to hear from anybody that had that treatment.


  • 19501952
    19501952 Member Posts: 80
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    Hi Riri11,

    Two or three times the day of chemo I had hoarseness and throat irritation. It went away in a day or so. The first time I thought I was getting a cold and by the second and third time I went back to my handy notebook and read what I wrote about that feeling. I hope you don’t have a cold. I know we all get worried about becoming ill.

    I’ve written before about chemo and about radiation and I was feeling pretty darn good, and suddenlywithin a couple days after oncology appointment my breast became very hard, very painful and I started to run a fever. This fell in to the “ no one told me about this” category. Thank god for this forum. I was able to look up stuff and made an appointment with my oncologist who immediately fit me in once she heard my symptoms. I had a crazy day from oncology to hospital for a CT scan then to another hospital to be admitted and put on IV antibiotics. Everyone kept saying what I had was an an abscess, but what I looked up pointed to a seroma. Which is a void from surgery that can fill with blood, pus or fluid. I had 80 ccs of fluid drained and I was sent home with doxycycline and oxycodone. 3 days later the void filled again and I went back to my surgeon who was the admitting doctor and she drained another 40 ccs. It felt good after that but by my follow up appointment yesterday she wanted to drain it again and got another 7 ccs. She said the culture from the hospital showed staph and she changed my antibiodic from doxycycline to Bactrum. She said I should go buy a lotto ticket because I was a rare case. I would prefer being a someone who presented with a very common easily solved issue that the doctor had seen a million times, but she said I was the first. So today I have not decided how I feel yet. I’m still sore but who knows. I. Write this so somewhere at sometime if a person developed this they can find this post. I’ll continue to update over the course of this. Cross your fingers and say a prayer this gets better. We are headed to Raquette Lake in the Adirondacks for our yearly week of family and fun and the closest hospitals are a good distance away. I’ll be armed with my cold packs, six packs and thermometer. The upside of Bactrum is that moderate drinking is allowed!

    Good luck to all and hang in there. Cancer opens your eyes to the good things and people in your life and has given me a very deep appreciation for both, but it does scare the crap out of you with every bump in the road.

    Kate




  • Yself
    Yself Member Posts: 12
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    A week ago yesterday. I had surgery to remove a second cancer. This was found in my right breast. I had a modified radical mastectomy on my left breast in 2006. I was given neulasta while taking chemo after that surgery. I wonder if this second cancer could be the result. I have a. very strong family history of cancer. I was also put on a calcium channel blocker for a short time, which bothered me a great deal. Recently, I was put on a other med.

    I was diagnosed with congestive heart failure two years ago. Took Adriamycin after 1st cancer.

    Just curious. I would do it again. So far, I am the only one in my family (out of ten) who hasn't died from cancer.



  • edwards750
    edwards750 Member Posts: 1,568
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    Yself - bless your heart you have been through hell and back. You had your first cancer 12 years ago - yikes and congestive heart failure on top of that. Only one out of 10? Wow cancer does run in your family. Mine too but to that degree.

    So sorry.

    Diane

  • MILO2018
    MILO2018 Member Posts: 16
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    Thanks for all your posts and info . It was most helpful and encouraging. I start chemo 7/9 .Keep u all posted hugs and prayers to you all

  • RiRi11
    RiRi11 Member Posts: 70
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    This cold landed me in the hospital :(

  • 19501952
    19501952 Member Posts: 80
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    Hi RiRi11,

    On No! I’m so sorry. Hopefully you caught it early. Sometimes I just wish we could all wear a space suit and take it off when we finish treatment. I don’t even tell my oncologist about how often I take my temperature because I’m afraid of catching something. We are going away for a week and I’ve got a list of urgent cares and closest hospitals. Crazy! But, we will get to the other side of this. I’m hoping you feel better already.

    Kate

  • Inthegrey
    Inthegrey Member Posts: 68
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    hi Ria - I’m so sorry to hear this! I hope you get rested up and are better soon. Please keep us updated on how you are doing and are home again. I’m hoping it will be soon - we care! All the best in recovery!

  • RiRi11
    RiRi11 Member Posts: 70
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    hi Ladies,

    They are treating me for an upper respiratory infection. Im on a strong antibiotic (iv). Sudafed, musinex and im getting a nebulizer every 4 hours.

    I havent had a fever in the past 24 hrs (so I hope they discharge me today)

    I broke down in tears yesterday thinking I havent felt well in weeks and this is only the beginning of my journey

    Thanks for you well wishes

    Ria

  • Inthegrey
    Inthegrey Member Posts: 68
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    thanks for keeping us updated Ria. I hope you get home for the weekend. Keep well hydrated too😊 hug

  • MILO2018
    MILO2018 Member Posts: 16
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    Thanks for this post. It was both helpful and encouraging

  • Inthegrey
    Inthegrey Member Posts: 68
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    Hi all - did anyone get more dry and dehydrated as treatments progressed? I am two weeks post #4 and drinking 4-5 liters a day plus fresh fruit. I feel so full from so much liquid. Just haven’t felt well since last weekend on my 2 good days. Not sleep well either. I also started Lexapro for anxiety/ depression and cannot tell which side effects are from which treatment. Very tired and frustrated. This isn’t as easy for me it seems. Ugh

  • MILO2018
    MILO2018 Member Posts: 16
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    just re-read your post here

    It was so encouraging and supportive. It has been a week since my first treatment. I feel ok some SE like my tongue is in fire

    and mild headaches

    Hoping treatment two is easy


  • RiRi11
    RiRi11 Member Posts: 70
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    Round 3 beat me up or maybe I did it too soon after my upper respiratory infection. My left arm developed phlebitis, which is very painful and I have a terrible cough that just wont go away. I slept so much this week. I feel so run down.

    Sending hugs and good vibes to all my CMF sisters

  • 19501952
    19501952 Member Posts: 80
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    Hi All,

    Hang in there everybody. This will end and you’ll be on the other side of it. I know it doesn’t seem like it. I sure didn’t feel it and by my last treatments I just felt so tired and like my stomach would never be the same, but you really will start to feel better about 2-3 weeks after your last treatment.

    Kat

  • MILO2018
    MILO2018 Member Posts: 16
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    my tongue always feel weird !!!!

    Taste buds done work

  • Inthegrey
    Inthegrey Member Posts: 68
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    My tongue is ok. I have dry mouth a lot. Biotene Gel I bought only works a short time, will try other methods at some point. Don’t forget about plastic forks and spoons to combat any metallic taste. It help with food taste for me.