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CMF treatment survivors and experiences

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  • nocyart
    nocyart Member Posts: 27

    So I'm on round 4 today. According to my oncologist this is my last dose of dose dense cytoxan and for the next 4 rounds it's just the methotrexate and 5FU. Anyone else have the same thing?

  • Inthegrey
    Inthegrey Member Posts: 68

    Chickadee - I am so sorry to hear your news. I hope you learn more soon and get a plan. Keep us updated...we care😘

    Nocyart- I have not come across just four doses of cytoxan in CMF. Perhaps he/she has a reason and can explain if you ask. Be well

  • Lynne
    Lynne Member Posts: 368

    Has anyone had fevers in the late afternoon, while on CMF? The past few weeks, it's happened for a couple of days and just goes away. Usually below the 100.5 (then they say to call the oncology office), but a couple of times it was up to 101. I take a cool shower and tylenol and it goes down. It happened again last night. My husband wanted to bring me to call the dr's. I said no, they'll just send me to the ER again (I have been there 3 times and had to stay for 2 days, once). It is always in the evenings or weekends. I had my last dose (number 3) on Friday. I've told the PA and oncologist (who I see and will tell again) about this, and they never say anything. I leave for a 2 week vacation on Sat (to Mexico) and I really don't want to be worrying about it down there.

    Thanks

    Lynne

  • RiRi11
    RiRi11 Member Posts: 70

    lynne, I had fevers and went to the ER each time. On my last visit it ended up being deep vein clots. (My infusions were through IV not a port) please listen to your husband and go to ER for bloodwork and check your arms/legs for warm red areas.

    Good luck

  • Lynne
    Lynne Member Posts: 368

    Thanks, RiRi.

  • MZ1969
    MZ1969 Member Posts: 6

    Hello everyone, I have been reading this whole thread in preparation, thank you for all the advice and sharing. I just had my first CMF treatment yesterday. Felt lightheaded and nauseous on and off but did a pile of laundry so it wasn’t that bad. Didn’t sleep well, had a burst of energy this morning so went food shopping to stock up the fridge for the fam. Then crashed and slept for 3 hours. Now nauseous. I think nausea comes when I’m hungry. Will have some chicken noodle soup. Craving only starches since yesterday, which someone said on this forum is related to the steroids. Kids just got home from school so I will go down and say hi and have my soup.

  • Inthegrey
    Inthegrey Member Posts: 68

    Hi Mtz1969 - I'm glad you found our information helpful! I just finished my CMF 3 weeks ago. Are you at MSK? I see you are in Brooklyn, I live in the UWS. Rest as your body tells you and pace yourself on energy so as not to crash for a day. I did that at first, then got better about it. I hope you continue to do well! Please reach out with any questions

  • 2002chickadee
    2002chickadee Member Posts: 79

    Hi folks, thanks for your support and sharing your stories. Lynne, I admire your courage to carry on through more and more treatment. It is an inspiration! PET scan was negative for metastatic disease, so I had a lumpectomy and now they are adding on radiation and the more aggressive hormone therapy option (ovarian supression through Lupron, not surgery, and AI). Got a nice shot in the rear to kick it off yesterday :) I am off to the other boards to find some courage for all of that to come!

    Mtz1969, yes, I think nauseau is worse if you're hungry. Try to stay fueled on crackers and soup if nothing else works. I found I had no appetite for much of CMF but keeping some food in my belly at normal eating hours was a helpful approach. Good luck getting into the groove.

  • goodwit
    goodwit Member Posts: 2

    I meant to post on this topic but got sidetracked. I was diagnosed with a second occurrence of BC in July of this year. My first round was 20 years ago and I have very little info about the type of tumor. I only know it was ER-. After the 1998 mastectomy, I had 6 months of CMF chemo, with two weeks on and two weeks off. I continued to work part time and even showed horses through the chemo. I did sleep more than usual, was never nauseous, and for the last 2 months had to give myself neupogen? injections due to chronically low white cell counts. I thought my 20 years meant I was home free, but surprise, here I go again. This time have much more info about tumor and am 67 instead of 48, following a mastectomy of my remaining breast I only am taking anastrozole with no side effects so far. Only posting to encourage those taking CMF, it worked for me!

  • MZ1969
    MZ1969 Member Posts: 6

    inthegrey and chickadee, thank you for your responses. I am getting treatment at Mt Sinai in Chelsea, Although I got a second opinion at MSK. I have my second treatment Thursday. It was 4 days of feeling like I had a stomach virus, then a few days of crushing fatigue. Basically a week, and since I've felt quite normal physically. Some days pretty tired though. It's very strange to go about my life as though everything is as usual, and this is the thing I struggle with most - finding the balance of keeping up with home and work and kids, wanting it to be as usual but also feeling very tired by all of it and not knowing what has to give, where to let go and loosen up. It's challenging emotionally. My sleep is very screwed up these last couple of days, waking up and not being able to get back to sleep. Anticipatory anxiety I guess for the next one, which is the day after tomorrow.

  • MZ1969
    MZ1969 Member Posts: 6

    thank you for sharing this. 20 cancer free years is pretty good! G

  • 2002chickadee
    2002chickadee Member Posts: 79

    Hi Mtz1969, the emotional state and challenges you describe sound very familiar to my experience. Chemo is as much a mind challenge as a physical challenge. It's a long time to feel so many ups and downs. You will make it! About 3-4 weeks after it ended I really felt back to normal. I found it helpful to just focus on the ever-decreasing number of treatments and days remaining. Start daydreaming about next spring! I also took an Ativan for 2-3 days before each treatment to help with the anticipatory anxiety which also disrupted my sleep. Preserving sleep is worth it! My onc said just try not to take one every night so I didn't feel too bad about that, and I don't take it any more.

  • nocyart
    nocyart Member Posts: 27

    Last chemo was yesterday. So happy to be done. Exchange surgery will be in January. And then will start hormone blockers for 10yrs.

  • Inthegrey
    Inthegrey Member Posts: 68

    Congratulations on finishing! I’m sure is a good feeling. Good luck on your surgery in January. Since I last posted, I had a BMX in October and decided to go flat. My recovery has been going very well and easy, I’m happy with my decision. Started Tamoxifen 2 weeks ago and do far no side effects. Getting back to normal now. Happy Holidays to everyone!

  • nocyart
    nocyart Member Posts: 27

    I am extremely happy to be done. I am looking forward to feeling more like myself. I've lost so much hair. I can't wait for that to slow down!!

    I'm glad to hear that your recovery is going well.

    How's everyone else? This page has been quiet.

  • 19501952
    19501952 Member Posts: 80

    Hi All,

    I’m so happy all of you have found this group and you are getting support and information from each other. When I started CMF last fall I found so little information and I was still in shock. Little by little others joined this group and although I haven’t posted in a long time I still follow everyone.

    My 8 CMF treatments ended on April 8, 2018 and I finished radiation June 5th. I had the nuelasta onpro and regained my white blood cells by the next chemo. In July I developed a seroma after radiation. A seroma is a pocket of fluid that can develop and often resolves on its own. Mine needed to be drained a few times and finally surgically drained and debrided. I’m told I had a 1 1/2 -2 inch open area that required twice daily packing. I say I’m told because I never looked at it and once I could shower I showered with my eyes closed. My best friend who did the packing and the dressing kindly provided no description but she faithfully took a daily picture to track my progress and determine day to day if it was really getting better. Finally by mid September it began to rapidly heal and by mid October had resolved. At this point I feel great and go for my first ultrasound and mammogram in Mid December. At my oncologists urging I had genetic testing due to my dad having stomach cancer and all 9..of his sibblings as well. My testing came back showing the ATM gene which is linked to pancreatic cancer so in January I will have an endoscopy and alternate with MRI every other year.

    I hope your take away after reading this will be that in spite of the seroma and the concern over the genetic test I feel great and I survived my first year after diagnosis feeling like I am back to normal. We will all keep worrying when treatment is over but at least I’ve got a target to keep checking. I’ll report back regarding the endoscopy and the mammogram, and I’ll let you know if I ever get brave enough to look at those pictures of my seroma

    Best to all, Kate

  • Lynne
    Lynne Member Posts: 368

    Well, this treatment has failed me. New tumors have shown up on my every 3 month scans CT/bone/PET. On to the next one (once I figure out which one to pick). Heading back to Dana Farber in Boston for a second opinion. Last time I went, she may have a clinical trial for me to try (I still have different chemos to try to).

    Good luck to all of you!

    Lynne

  • nocyart
    nocyart Member Posts: 27

    So sorry, Lynne!

  • nocyart
    nocyart Member Posts: 27

    I'm 5 weeks post chemo and my hair is still coming out in clumps. How long after before your hair loss slowed down?

  • Inthegrey
    Inthegrey Member Posts: 68

    Hi nocyart - sorry to hear your hair is still coming out. While I only had hair thinning, it was about 2 1/2 months for it to fill back in and feel back to normal. My last CMF was Sept 19th and my hair felt full again in December. I'm back to feeling like myself post bilateral mastectomy on Oct 19th. I did not do reconstruction, which is a whole lot easier for recovery. My foobs look better than my natural ones did. Best wishes to you!

    Happy New Year to all my fellow CMF friends!

  • nocyart
    nocyart Member Posts: 27

    Glad you are feeling more like yourself. I have my exchange surgery on 1/7. I'm looking forward to getting the tissue expanders out. I had my mastectomy pre-chemo. I can't wait to start feeling more like myself again.

  • santi2018
    santi2018 Member Posts: 3

    Hi

    I currently finished today round 5 of 8 of cmf. I can tell you that so far I have been ok. Very tired a few days after treatment, some heart burn but tums has been working

  • santi2018
    santi2018 Member Posts: 3

    hello ladies

    Hope everyone is doing well!! Does anyone here have a port? Im just curious as to how long does a port stay in after chemo treatment. I just finished #5 of 8 of cmf, and I was wondering. I forgot to ask my oncologist, but I will next appointment. I was just curious. Thanks and God Bless all you strong women!

  • socallisa
    socallisa Member Posts: 10,176

    I didn't have a port.

  • MZ1969
    MZ1969 Member Posts: 6

    I just want to let you all know that I cut my CMF chemo regimen in half, from 8 to 4 treatments, based on studies conducted in Europe. When I discussed this with my oncologist, and after pressing her for her opinion, she said: "I don't know how else to say this, except that the standard treatment in the US is 8 treatments; whatever you decide, you have my blessings and we will move forward together to the next step." In other words, she was not in a position to give me an opinion other than the standard treatment, but she also didn't oppose it or counter it. I am confident in the soundness of the science on which I based this decision. Here is the link to the study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2375405/ I am thrilled to be done

  • Rbxx0520
    Rbxx0520 Member Posts: 1

    Hi! I started my first round of CMF chemo last week and wanted to thank everyone for all the helpful advice about how to prep for it and what to expect. Such a scary experience so all the advice and encouragement on here was so very helpful and reassuring. Going for my second (of 8) round tomorrow. Wishing everyone of here all the best.

  • 19501952
    19501952 Member Posts: 80

    Hi Rbxx0520,

    When I started CMF in Dec of 2017 there was next to nothing about what to expect. I’m so glad so many people have shared their experiences. My chemo ended in April of 2018 after 8 treatments and then I had radiation which ended in June 2018. Today, I feel fantastic! It took a few weeks to feel better after chemo (just in time to start radiation) but the relief of finishing chemo was an immediate emotional sense of calm and I knew I could start to get back to normal. There might be days you think the final treatment will never come, but trust me, it does and you really will be back to normal. Keep a positive attitude, ask for help if you need it,and take care of you as much as you can. You can do this and you will get to the other side of treatment and get back to everything you enjoyed before. In my case, I enjoy everything more than ever. Good luck, and I’ll be checking here to hear how you are doing,

    19501952, Kate

  • Inthegrey
    Inthegrey Member Posts: 68

    Hi Hi Rbxx0520,

    I’m so glad you found this thread and found it useful😊 I know how difficult it is to find others on CMF and get info. I finished my 8 treatments in Sept and in October had a BMX with no reconstruction. I had started acupuncture around chemo #6 and it helped me a lot with side effects. I had more energy at the end if it than in the beginning - go figure, so I credit the acupuncture. Best wishes on your treatment💕🙏

  • Fukcancer
    Fukcancer Member Posts: 8

    Reposting this from the managing side effects forum.......

    I'm on CMF, the 28 day regimen with the oral cytoxan pills. I've finished 4 of 6 rounds. So far the worst side effect for me has been hair loss. I'm guessing I've lost 75- 80% of my hair. It continues to shed every day. I've been wearing a wig since the 3rd treatment. I'm really bummed about this. I feel like my oncologist downplayed the haircut loss, claiming it might thin but I wouldn't "lose my hair". Yet here I am wearing a wig everyday. It will take me years to grow back my long hair. Has anyone else lost a significant amount of hair on CMF? Did your hair eventually return to normal?

    I'm also concerned that oncologists downplay hormonal therapy, which I was told I would need. I'm currently on Lupron and hate it. The hot flashes and lack of libido are the worst. And this is supposed to be long term. After chemo, im going to try switching to tamoxifen but I'm pretty concerned about going on this drug based on the side effects that I've read about. Feeling very demoralized right now

  • socallisa
    socallisa Member Posts: 10,176

    I would concentrate on one step at a time. Good to research the tamoxifen but don't worry about it until you have to. I lost over fifty percent of my hair and it did come back. I know nothing about Lupron or why you are on it..sending hugs that soon this will be over..I finished CMF in 2001,