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CMF treatment survivors and experiences

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  • moderators
    moderators Posts: 8,069
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    lisachip, we welcome you warmly here to the BCO community. Sorry you find yourself here, but relieved for you that you are through he surgery. There are many here who have been on CMF, so please look around and let us know how we can best help! We're here for you and understand how stressful things can feel right now.

    Warmly,

    The Mods

  • lisachip
    lisachip Member Posts: 3
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    Thank you The Mods! for your kind welcome. I appreciate this community and will check in often!

    Lisa

  • jrnj
    jrnj Member Posts: 407
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    Hi lisachip,

    Sorry I missed your last post. Not a lot of CMF people. I finished 3/10. I had dose dense, 8 treatments every 2 weeks for 4 months, as recommended by Sloan. I'm glad, because I was able to handle it and would not have wanted to drag it out longer. My MO agreed to implement their recommendation. Sounds like you are doing every 3 weeks ,the traditional treatment. Overall, I think it is better than TC from what I can tell. I didn't have any nausea, and I am very prone to nausea, had it really bad during pregnancy. I did have acid reflux. I took Zofran and Pepsid. I take Lunesta to help me sleep, I have insomnia. I actually ate a lot and gained weight, the steroids made me hungry. Day 3 and 4 were rough, usually in bed, fatigue, but a lot of reason is due to the Neulasta which kicked in night 2, but I was mostly functional the others days and by the second week I felt pretty good. I was not working so that helped a lot. I lost about 90% of my hair, which sucked, I thought I would keep more, but maintained a tiny ponytail that I can attach a fake ponytail to and I use root touch up spray for the bald and gray spots. I did have some mental fogginess, but feel fine now. Three weeks after end of chemo I experienced neuropathy pain and numbness in my right hand pretty bad at night. Dr. gave me steroids and I feel better, but not sure if I am stuck with it for life or not. Not supposed to get neuropathy from cmf. I think it is due to inflammation pressing on the nerves, so maybe it will get better with time and healing. I'm doing radiation now, 7 weeks, so inflammation will not get better for a while. I never heard of chemo before and after radiation, for estrogen positive, that is interesting, why are they doing that? I often wonder why radiation is not done first. I think it's all a crapshoot. Did they do Oncotypo and Mammoprint, or just Mammo? With the Neulasta my white blood cells were super high, over normal, but for the last 3 treatments I stopped the Neulasta and got random shots of Zarxio based on blood tests because I wanted to reduce side effects, fatigue on day 3 and 4. I'm going to radiation every day now, and NJ is second in the country for COVID, but I'm not that scared. I'm more scared of the cancer and want my treatments. Wear a mask, wash your hands often and don't touch your face and you'll be fine. Good luck!!! If you have any questions, don't hesitate to ask.

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    Hi All,

    I finished 6 rounds of chemo on 5/25/19 and completed 20 rounds of radiation on 7/29/19. I'm a year out but checked back here to see how everyone is doing. I am copying below something I posted last year for another new person. I hope this helps. You can do this. I can't believe it's been a year for me.

    Previous Posting: I had nausea and bad headache after round 1 of CMF. I had ice bags on my head! I was told to take Extra Strength Tylenol which helped. After rounds 2 and 3 I took my anti-nausea medicine (10mg of Compazine) as soon as I got home from my infusion and also 2 Extra Strength Tylenol. I continued this for the following day. Annoying light nausea seems to linger for a few days after (definitely drink your fluids every day - 64 oz. and have a high fiber diet for the constipation).

    After round 1 my white blood count went below 1000 so I am now given a Nuelasta patch on my arm after each infusion. That keeps my count normal but it also comes with side effects. I was told to take Claritin and Alleve starting 2 days before each round and for a few days after. This definitely helps. I believe the Alleve is also helping to eliminate any headache after infusions.

    HAIR: Follow what "Inthegrey" previously posted - Silk pillowcase (I found one at Bed, Bath and Beyond), baby shampoo once or twice/week, no color, no hair dryer, curling iron, products, etc. I had about 25-30% thinning 3 weeks after round 1. Then it slowed. I'm hoping and praying to hang on to the rest. I did purchase a wig to be prepared. I also rub Cerave Healing Ointment into my fingernails and toenails each night.

    Current Note: I never lost all of my hair. It definitely thinned starting from the back. I never had to wear a wig. I did wear hats and also scarves around my neck. I normally have shoulder length hair and that sort of covered the length I lost in the back. I had it trimmed to chin length to have less weight on it. I only disclosed my diagnosis and treatment to a few close family members. I was fortunate to have been recently retired so I didn't have to look that great everyday for work.

    Drink fluids. Eating a bland, healthy fiber rich diet and walking a little each day helped me. However, on days I needed to rest I gave myself a break.

    This will pass. Good luck. I am thinking if you.



  • jrnj
    jrnj Member Posts: 407
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    Hi ihatechemo, Thanks for posting. Two weeks after ending chemo I got neuropathy, hands and arms were numb and painful at night and kept me up. I was on steroids for a while, during radiation and felt much better. Then stopped taking them and it came back, but not as bad. Every morning I wake up my hands are numb. But they say that is not supposed to happen with CMF. Anyone else have this?

    But no regrets. The Lupron and the Aromosin is almost as bad as the chemo right now with no end in sight like for chemo. My hair is a mess, lots of 2 inch curly frizzy pieces.

  • Fukcancer
    Fukcancer Member Posts: 8
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    I did 6 rounds of CMF bc my oncotype score was intermediate. I was told that CMF was a more tolerated chemo with less side effects. I would only experience hair thinning and that my period would resume bc I took lupron during chemo to protect my ovaries.

    I ended up losing most of my hair and it put me into menopause at age 37. Don't believe the MDs. Many will sweep risks like these under the rug in order to get you to take the drugs. It's what they are trained to do

  • Dianne62
    Dianne62 Member Posts: 1
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    I’m 62 had 1st chemo Tuesday

    This morning sick and leg cramp is bad

    Question

    Will I be sick again tomorrow and I took Claritin should I take one every day ?

    Thank you


    reading all your posts have helped me a lot

  • mandy1313
    mandy1313 Member Posts: 978
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    Hi Dianne

    Sorry you have joined the club that no one wants to join. I had CMF with 8 infusions 3 weeks apart in 2008-2009. So I don't remember all of the details because it was a while ago. I did have a diary I wrote at the time and I just checked it so that I don't give you wrong information. I was about your age when I was on CMF.

    I did have alot of nausea from the chemo and ended up taking a combination of kytril and amend for relief--I tried a number of other things that did not help the nausea. When you say you were sick, does that mean you vomited? Tell your oncologist and ask for some anti nausea medicine that works for you and take it. It will make a big different if you are not nauseous and you need not be sick all of the time during chemo.

    I never took claritin so I cannot advise you about that. And when you said you legs hurt--was it an ache or a sharp pain. I had alot of aching through chemo, kind like the flu in my back and all over. I found that if I was able to take a walk it helped me feel better---I am not talking about a 20 mile hike, but if I walked 10 or 15 blocks outside, it helped my aching and my energy. And I also took tylenol for the pain.

    I hope some other people who have taken CMF more recently will get back to you because I think they do alot of things differently than when I was on chemo.

    But try to remember this---CMF is not wonderful but it is doable and just take it one day at a time. Be sure to let your oncologist know of side effects and remember to tell him/her that you need different anti nausea meds.

    Sending you a hug.

    Mandy1313



  • moderators
    moderators Posts: 8,069
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    Welcome, Dianne62! We're so sorry you find yourself here, but you've come to the right place for support on this journey. We're all here for you!

    The Mods

  • Joyce65
    Joyce65 Member Posts: 30
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    Hi Dianne,

    I had 8 rounds of CMF spaced 2 weeks apart and had a Neulasta OnPro for the day after chemo. I finished up in June 2019. My doctor gave me steroids and anti-nausea meds prior to my infusion and then the Neulasta which injected 24 hours later (to boost white blood cell production). I took Claritin for the Neulasta and found it helped with the bone pain. My infusions were on Wednesday morning. I generally felt quite good on Wednesday and Thursday (that's the steroids) and then Friday would be my worst day (nausea, sometimes bone pain, fatigue). By Monday I was feeling more like myself, just somewhat tire and no appetite (which tended to last for about a week each time). I made an effort to go out for a walk every day, even on Friday when I was not feeling well. Each day, I'd go a bit further. I found that during the first 4 rounds of chemo, I would feel pretty "normal" the second week and had returned to normal activities and levels of exercise. As I got into rounds 6, 7 and 8, I was definitely more fatigued and did not bounce back as quickly.

    I hope this is somewhat helpful. If you have more questions, just reply and I'll do my best to answer them for you. Remember that your chemo nurse is an amazing resource. She/He will have treated many patients with breast cancer with CMF, so don't be afraid to ask for clarification and advice.

    stay strong

    Joyce

  • Corals
    Corals Member Posts: 15
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    Catlady54 Hello! Saw you did CMF and kept your hair! Did it thin at all? I was about to do TC and freaked out about lawsuits out there for permanent hair loss even though it is like 1-2% so my oncologist offered CMF , so we are discussing this and curious how you handled it. Th

  • Corals
    Corals Member Posts: 15
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    Joyce65 Hello, thanks for your information about CMF , did you keep your hair? My oncologist just told me about CMF as an alternative to what I was going to d

  • Joyce65
    Joyce65 Member Posts: 30
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    Hi Corals

    Sorry you've joined our club, but happy to answer questions to help you along the way. My hair thinned (maybe 1/4 to 1/3) but nobody knew it except me and my hairdresser. I wear my hair short, which I think helped. It all grew back, and with more curl than before.

  • jrnj
    jrnj Member Posts: 407
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    corals, I lost most of my hair. There is a cmf hair thread where others also lost significant amount. I was surprised because they told me it would “thin”. But it was still slower than taxol. I had a small ponytail and filled in bald spots with root spray. It’s growing back really thick and curly. I thought taxotere was worse than taxol for permanent hair loss? I know hair loss really sucks, but try to make decision based on what is best for cancer. It was my impression cmf is recommended for low risk people or people who can’t tolerate taxol. Some didn’t want to give me chemo at all due to onco of 15 and ilc type.

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    Hi Corals,

    I had 6 rounds of CMF. My hair thinned a lot but I never lost all of it. It started to thin first in the back about 3 weeks after the first infusion. It seemed like individual strands of hair dropped out every day after that. I never had to wear a wig. See my post on June 10, 2020 for details on what I did. As we are all sick of hearing, everyone is different. I found staying in touch with people on this thread was very helpful. I will keep everyone on this journey in my prayers.

  • Ndpoole1
    Ndpoole1 Member Posts: 1
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    Hi everyone - I will be starting CMF treatment tomorrow after two horrible experiences with Taxol. I appreciate the posts that were made and can't wait to start and end my treatment.

  • mandy1313
    mandy1313 Member Posts: 978
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    Hi Ndpoole!

    Wishing you well with CMF. It is "doable" and though I had some fatigue and aches (as if I had flu) the side effects are bearable.

    I had my chemo in 2008-2009---CMF every 3 weeks for 6 months-- a long haul but I made it through and I am doing well these twelve years later. They do everything differently now than when I had chemo so hopefully others will tell you about their CMF experiences and will share advice.

    Sending you my best wishes.

    Mandy

  • jrnj
    jrnj Member Posts: 407
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    HI NJpoole1, It should be much easier than Taxol. I did dose dense CMF every other week. Day 3 and 4 were bad, partially/mostly? from the Nuelasta. The rest of the time I was doing pretty normal stuff, I was actually very hyperactive, except I was off work and slept a lot too. My eyes watered a lot. Lost my taste buds towards the end, but ice cream always tasted good.

  • Marnyc
    Marnyc Member Posts: 1
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    Hello friends not sure if this thread is still alive but I've read all your posts as CMF is being suggested for me. I'm in a grey zone as I'm 48, premenopausal, ILC, one node positive. Oncotype 15. My oncologist at MSK knows chemo might not add much benefit in this situation, but is uncomfortable doing nothing in this case (other than hormone therapy which is the real workhorse for these situations). So she is suggesting CMF as an alternative to nothing. My 2nd opinion oncologist wants to do radiation. I feel that at least with the chemo, there will be systemic benefit, even if those percentages are low.

    Anyway, was thrilled to find these posts since CMF is considered old school and not widely used much anymore. But, as I've read here, turns out quite popular at MSK where I've been treated thus far!


    So one of my main questions is (especially for my NYC folks): if I can reasonably tolerate this chemo, do you think as a single person, living alone, can I get through it by myself? Yes, I have many friends that I know will check on me, go to appointments, make sure I have food, etc. I know it will be tough mentally, especially through the winter and holidays. But is this possible? I purposefully went to the cancer institute near my family across the country in hopes of getting my chemo there, and they are the ones who want to do just the radiation. So this changes my plans in order to get chemo. I'm a tough cookie, but this will be a hard journey and I want to be realistic. I know I can always figure something out if it gets unbearable. But want to be prepared.

    Also has anyone done cold capping with CMF? MSK offers Paxman and I am considering it.

    And have people been able to drink coffee enjoyable during treatment? Important question! :


    thank you!

  • mandy1313
    mandy1313 Member Posts: 978
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    Hi Marnyc!

    Welcome to the club that no one wants to join---I wish you well and hope your find support on this site: Believe it or not I made close friends from these boards and found the support and understanding very helpful:

    Now to answer your questions---I had cmf every 3 weeks for 8 doses--it took a long time but I finished the chemo and do not regret taking it: Like you I had an oncotype of 15 and one positive node--so it is not clear if it helped but it is 12years later without recurrence: I did not use hormone therapy but I did have radiation for the lumpectomy, I tried all of the side effects one after another and I would say the worst was probably a general malaise--almost as if I had the flu. I did not lose that ,much hair and did not need a wig or even a head scarf and I did not cold cap--everyone is different so I cannot suggest what to do but if I had been offered a cold capping option. I would probably have taken it.

    While I felt badly after each Chemo dose, I do think you should be ok on your own: Get someone to clean your apartment and to help deliver groceries and do not be embarrassed to order some microwave ,meals for your hard days: And yes; you will be able to drink coffee--


    I am sure things have changed since I was on Chemo and hope you will hear from some other people who took cmf``

    All the best``

    Mandy



  • Joyce65
    Joyce65 Member Posts: 30
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    Hi MarNYC

    Sorry that you find yourself here, but I will say this information source and these boards were incredibly helpful to me throughout my treatment.

    I had 8 rounds of CMF in the spring-summer of 2019. Mine was given every two weeks and included a Neulasta Onpro which is an automatic injection given 24 hours after the chemo to help boost white blood counts. It allowed me to handle the dose intense schedule. The Onpro was great because it saved me a trip to the cancer center for a shot the day after chemo.

    I was already retired when I underwent chemo, but I think I could have worked and definitely could have managed on my own with a little help from my friends. My infusion was on Wednesdays. I felt fine on Thursday and then Friday and Saturday were my more difficult days, but not awful, even in the later rounds of the chemo. I was nauseous, but the anti-nausea medicines helped with that. I had little to no appetite but made myself walk to the smoothie shop (8 blocks from my apartment) to get a smoothie with a protein boost, and I had toast, crackers, ginger tea and chicken noodle soup on hand....I just now, over two years later had my first smoothie (haha) and I still don't eat chicken noodle soup. I had a wonderful set of friends who delivered food in the days after chemo, mostly soups, simple pastas, things like that.

    I was able to continue walking in Central Park at a fairly vigorous pace for the early rounds of treatment, and in the later rounds, I would still walk 3 or 4 miles, just more slowly. I would encourage you to stay as active as possible. I guess what I'm trying to say is it was not debilitating.

    As for my hair, I would say it thinned, maybe losing 1/3 or so but no one noticed except me. I wear my hair short, so that may have helped.

    I will celebrate 3 years cancer free in January and am feeling great.

    Good luck and feel free to post any questions. Some of us continue to chat on this board as new people join our group.

    all the best,

    Joyce


  • socallisa
    socallisa Member Posts: 10,184
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    Hi there...yes I did CMF twenty years ago now...over six months...it wasn't real easy, but it was doable.

  • jrnj
    jrnj Member Posts: 407
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    Marnyc,

    I had an Oncotype of 15 and 2 positive nodes and also had multiple different opinions. Remember the oncotype assumes you will do hormone therapy, and I found out the medication sucks bad, so I am very glad I did the chemo in the event I can't take the medication anymore. No Drs. tell you that when trying to decide. Also, it is my understanding that radiation is independent of chemo, not instead of. Chemo is just in case it already got in the blood stream, and radiation is for local cells that might be lingering. I did CMF every other week. On day 3 and 4 I stayed in bed most of the day, partially from the Neulasta shot which comes with its own side effects, but the rest of the time I was hyper and running around working on my house projects and going shopping. I was lucky to be off of work. I did have brain fog and watery eyes. I was not dependent on anyone to take care of me and I went to appointments by myself. I was actually cooking more for the family and doing the food shopping, because I wasn't working. I took zofran and was never nauseous, even though I have a history of nausea on boats and during pregnancies. I ate ice cream every day, especially when I lost my taste and gained 15 pounds, which I later used for reconstruction. I had very thick hair and lost 95 percent of it, even though they told me I wouldn't. My center didn't offer cold capping or I would have done it. If they have it, I would do it. I don't remember if I drank coffee. I was already too hyper from the meds, so probably not. And you do lose your taste in the end which is horrible, but it eventually comes back. Good Luck!!

  • missmonty
    missmonty Member Posts: 63
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    Hi Everyone,

    This doesn’t seem to be a very active thread, but thought I would start here anyway.

    I can’t find a lot of information on this protocol and I’m wondering if anyone has taken the oral treatment for this combination? This is now my 5th line treatment. After progressing on Faslodex, my oncologist suggested this option. I take a 50mg cyclophosphamide pill every day, and a 2.5mg methotrexate pill twice a week. Almost 2 cycles complete and it’s been fairly manageable so far, but of course effective and manageable are the end goal. I have Mets to my lungs, which are actually stable. It’s growing Paratracheal lymph nodes we’re targeting at the moment.

    Has anyone been on this protocol and I guess more importantly, has anyone had long(ish) term success with the drug combo? Any information would be appreciated.

    Thanks,

    Anna