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CMF treatment survivors and experiences

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  • Ihatechemo
    Ihatechemo Member Posts: 22
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    I just completed round 2 of CMF. My hair is starting to fall out much more than expected. I too was told just "thinning" but at this rate, that doesn't seem possible. I am only washing 2 or 3 times a week with baby shampoo and no coloring, hair dryer or anything else. I have an appointment next with hair salon that speciallizes in this issue so that I can be prepared if I need a wig. Ugh...........I HATE CHEMO.

    Also, I am having 6 rounds of CMF. It seems like different people get a different number of treatments. I've seen 4, 6 or 8 on this blog. Why is that?


  • moderators
    moderators Posts: 8,187
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    Hi there, Ihatechemo! We want to welcome you to our community. We know this is a tough part of the treatment, but we're all here to help you get through it! Everyone will have a different treatment plan, including length of radiation or number of chemo sessions, based on their diagnosis, surgery, type of cancer, etc.

    The Mods

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    Thank you for being there. Will my strands of hair just keep falling out every day until my treatment is over? Did anyone get this after 2 treatments and then it slowed down? It seems to be starting in the back at the base of my neck. Maybe just rubbing against my collar of jacket I wear to keep warm.

  • fukcancer
    fukcancer Member Posts: 8
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    ihatechemo,

    I had a big shed where I probably lost at least 50% of my hair about 3 weeks after I started chemo. Since then, the shedding has slowed but I do shed everyday. I'm currently on treatment 5 out of 6 and I've probably lost 80% of my hair at this point. I hope you keep more than I did.

    I hate chemo too! But at least it's short term. I fear that I'm going to hate hormonal therapy more :( I already can't stand Lurpron. These cancer treatments are awful. I wish the cancer industry would make better advancements. But nope, too much money to be made

  • Inthegrey
    Inthegrey Member Posts: 68
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    Hi ihatechemo and Fukcancer - great user names btw! I’m sorry to hear you are both having so much hair loss. I think that is not very common, but one other on this site last summer, Milo2018, had hair loss as well. I was fortunate to only having thinning that no one could tell, but I have very thick, dense hair. You have the right attitude that this is temporary and to keep the longer goal in mind. Chemo does suck, but I found acupuncture to help with side effects. Mine ended on Sept 2018 and after a BMX with no reconstruction, I am on Tamoxifen with very little side effects, mostly mild hot flashes. Again, this does very widely by person. I’m glad you’ve found this thread for CMF and hope it has helped you

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    Hi Inthegrey,

    I would like to hear more about acupuncture and how you feel it benefited you. I currently get massage therapy the day before my treatment but I feel like I need something more. I have never tried acupuncture but I am open to anything that will help me through this.

    Thank you

  • Inthegrey
    Inthegrey Member Posts: 68
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    hi - I started acupuncture towards the end of my chemo and had more energy days after rounds 7 and 8 than in the beginning! Maybe I also knew I was almost done. It was still fatigue, but certainly not as bad as I had during the rest of treatment. The fatigue builds, but I had to credit acupuncture for reversing it. I bounced back after my last treatment pretty quickly to get ready for surgery, BMX. I had her address fatigue, digestion/acid reflux, nausea, and anxiety. I think it helped all around.

    I still do it weekly for Tamoxifen side effects, mostly hot flashes, energy levels, and winter sinuses. I can definitely feel a difference. After 9 consecutive weeks, I thought I might be able to “maintain" the benefits with every other week, but I found my hot flashes increasing, so back to weekly.

    I like that it is not taking another drug and it is worth the extra expense to me. I go to the Integrative Medicine Center at Sloan-Kettering. I wanted to be sure they had cancer experience. The needles are very, very thin and just feel like a pin prick going in, but then you do not feel them. Once in, you just relax/nap for 30 min to an hour. I love it! MSK also has a group rate $65, to be more affordable, so 4-5 of us are in tables in the room. Private sessions are $105. I saw an acupuncturist in upstate NY that was only $35/session when I started. nyc is pricier! Where do you live?

    Let me know if you have any other questions. There is nothing to lose by trying it. Takes a few sessions for the full benefit.

    Here is some reading:

    https://www.mskcc.org/announcements/acupuncture-helps-ease-side-effects-and-symptoms-some

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    Hi,

    Thank you so much for this information. I love the idea of an alternative to drugs and I am definitely going to try it. I am hoping it will alleviate some of the lingering nausea (after 2 days of Compozine post-infusion), hot flashes, anxiety and waking up at 3 am. My Oncologist's office (Upstate NY) has a wellness program and it is listed as an option for $65 per session. Thank you again.......and again.



  • Inthegrey
    Inthegrey Member Posts: 68
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    I really hope it helps! I would wake up alot in the night as well during chemo. For nausea, I also used SeaBands on my wrists to hit the pressure point and also Queazy Drops - both are on Amazon. That was before I discovered acupuncture

    imageimage

  • socallisa
    socallisa Member Posts: 10,184
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    Acupuncture worked for me once I found a really good practitioner.

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    I'm signed up for my first acupunture appointment on 3/22. This is 3 days after my 3rd round of CMF. Thank you both for the information.

  • RiRi11
    RiRi11 Member Posts: 70
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    ihatechemo... sorry for the late response Im not on this site as often as I was. While I was getting CMF, I used a silk pillow at night, scrungies or clips to pull my hair back (instead of elastic hair ties) I only washed it 1 maybe 2x a week with baby shampoo. Absolutely no styling (dryer or flat iron) I lost about 30% (I had 7 rounds of CMF) I also had a big shed about a month after my last treatment. I started taking bition after radiation around Nov ‘18. Hang in there, your hair will get fuller again ((hugs))

  • Joyce65
    Joyce65 Member Posts: 30
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    Hi all,

    I can't tell you how happy I am to find this discussion board. I'm 64 years old and live in New York City. I'm lucky, I am retired so I do not have to juggle children or work. I had my first round of CMF 3/7 and have been searching for information on the typical "course" of the treatment cycle. I just keep wondering if I will get to feel "normal" again before round 2 of chemo in a week, or if a certain level of fatigue will be my new normal for awhile.

    I'm having my CMF every 2 weeks for 8 rounds with Nulasta OnPro. I felt fairly well the first day after chemo which I will chalk up to the steroids they gave me pre-infusion. My second full day was my worst; I was just so tired with no desire to do anything (very strange for me because I'm a very energetic person). Each day since I've felt good in the mornings and tired in the afternoons. I would describe the nausea kind of like seasickness (if you have any experience with that); no need to vomit, just low grade queasiness. I did find eating small amounts every few house to be helpful, but I have no appetite. I too have struggled with constipation but with Colace 2x per day and Senokot at bedtime, things have regulated.The nausea is in the rear view mirror, but the lack of desire to eat is still present, but I can deal with that.

    If you are taking Neulasta, make certain to take the Claritin and some Tylenol on a regular schedule. I was having low level bone pain, but nothing debilitating and then I forgot to take the Claritin....I won't do that again!

    I appreciate the posts from those of you who are further along than I. It's so great to find a community of others going through the same treatment protocol.

  • Inthegrey
    Inthegrey Member Posts: 68
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    hi Joyce65,

    I’m glad you found this thread and found it useful. I’m in nyc as well and finished CMF in Sept 2018. I had 8 treatments every 3 weeks and did not need Nuelasta since it was more weeks in between. I found I felt better in week 3, almost normal, but stil fatigued.

    Yes, fatigue is your new normal while going through this. I found acupuncture helped me with the queasiness, constipation and energy. I started it toward the end of my treatments and had more energy after #7 and 8 than in the beginning. I still get weekly acupuncture at MSK Bendheim Integrative Medicine Center. You don’t need to be a MSK patient to go, but I’m guessing you may be one since they are one of the few institutions offering CMF. After an initial private appt, you can go to the group sessions that are $65 to save money, not bad for nyc.

    Eat whatever tastes good and keep hydrated 😊




  • Dleon24
    Dleon24 Member Posts: 8
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    Hi start cmf Monday , I’m taking a pill for 14 days cyclophosphamide, then the other two drugs that make up MF in CMF will be given IV 2 times a month . It’s a 14 day on cycle 14 days off. For a total of 12 treatments . I’m very anxious worried Im going to have a Barcelona reaction ( allergic) , Im also wondering if there are any tips you can share to make this easier? Also has anyone had this for triple negative? Studies are showing great results for it.

  • Dleon24
    Dleon24 Member Posts: 8
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    Has anyone had a reoccurance after using CMF for triple negative

  • Inthegrey
    Inthegrey Member Posts: 68
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    hi Dleon24 - I don’t think many in this thread have taken the pill regiment of CMF, most of what I’ve read here is IV infusions. I’ve also read it is very effective for triple negative. I’m sure you will be fine. I hope you are taking your first pill at your oncologist ‘s office if you are worried.

    Please read through the older comments and you will find a lot of tips for handling any side effects. Most of our experiences are similar, but to varying degrees. I found acupuncture to really help as well. Wishing you well on Monday

  • Ihatechemo
    Ihatechemo Member Posts: 22
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    Hi,

    I just wanted to share with everyone my experience with Reiki. I normally have 110/70 blood pressure but during this whole Breast Cancer diagnosis and first 2 CMF treatments my BP top number has been over 150. I had my first Reiki session Thursday evening and on Friday morning had pre-treatment blood work. They took my blood pressure and the top number for my blood pressure was down to 124. I had no idea what Reiki was or how it works, but I was so relaxed afterwards that I am going to continue it, along with massage therapy and will be trying acupuncture next week based on the recommendations of the others on this site.


  • Inthegrey
    Inthegrey Member Posts: 68
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    That’s great to hear Ihatechemo! I’m glad you found at least one thing to help you manage. ThumbsUp

  • Joyce65
    Joyce65 Member Posts: 30
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    Thanks much Inthegrey,

    I'm happy to report I'm feeling close to normal. I got my appetite back a week post the first session and my energy has been returning each day. I still have a daily dip in my energy late each afternoon, but definitely a sense of "normal". Hopefully my future treatments will follow a similar pattern.

    Did you feel like each treatment was cumulative in terms of side effects, meaning did you get more queasy or more fatigue say 5 or 6 treatments in, or did each treatment follow a similar pattern?

    Thanks for the suggestion on the acupuncture. I'm planning to look into yoga, massage etc. in the next couple of weeks.


  • 2002chickadee
    2002chickadee Member Posts: 79
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    Hi Joyce65,

    I did CMF roughly April through August 2018, 8 treatments over six months. I found the symptoms differed a bit each time, but that the pattern of feeling off / feeling well was consistent. The good thing about the 3 week cycle is you do get some time in between infusions to feel well and have a decent amount of energy. I also had some bad luck catching various non-cancer sickness from the depressed immune system (a nasty GI bug and salmonella), which mixed up the fun. Do be vigilant about hand washing, cooking veggies, etc. The fatigue did get more noticeable and persistent as time went on. I found trying to keep active (not pre-cancer levels which were pretty high for me) made a big difference -- especially now that spring is arriving, try to take a walk each day if you can, even if it's just for 10 minutes or so.

    All in all, I don't feel any of my ongoing side effects have anything to do with chemo. My hair thinned a bit but no one noticed but me and my husband. It started growing back but now I'm on an AI which seems to have slowed it. Overall I'd say CMF is a pretty good chemo to be on.

    It's not fun but you will definitely make it through!

  • Joyce65
    Joyce65 Member Posts: 30
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    Hi 202Chickadee

    Thanks for all the encouragement and details. I'm on the two-week schedule if my counts are good. I too had a high level of physical activity and fitness coming into it, so I'm walking some each day, and as I've felt better over the 4 days, I even took a "fast" walk for exercise in Central Park (my go to spot). I had to skip the big hill and went a mile less and a bit slower then pre-chemo, but all-in-all I felt good.

    I've been a nut about washing my hands and everything that is raw. With your advice and experience, I'll continue to be vigilent. I'm hopeful my hair will stay put.

    again, thank you!

    Joyce

  • socallisa
    socallisa Member Posts: 10,184
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    Dieon, I think I had the same CMF. Pills for C and IV push for MF. I had it 18 years ago. Joyce I did find the tiredness was cumulative.

  • Dleon24
    Dleon24 Member Posts: 8
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    I started my cmf yesterday March 18 I took 4 pills in morning went to hospital to get infusion of the other two drugs . They gave me a Pepsid pill for stomache, IV steroids, IV zofran 16 mg , and 1mg of Ativan to stay calm . Then they gave me first infusion that took 1/2 hour. 2nd infusion took 2 hours , I was perfectly fine I slept about an hour . It has been over 24 hours since the infusion and the daily pills I only had a headache . Today I walked about 1 mile, I drank a gallon of water and some coconut water . i am sitting around waiting for symptoms , nothing yet , my Dr does not give that shot for white blood cells automatically .. he draws my blood then willidecide 4 days after treatments . Nurse said day 3 and 4 are sometimes an issue for people .. Im praying I stay this good . We shall see. My fear is a reoccurance . I'm sick of reading all this negative stuff about tnbc . Hope everyone is feeling ok .

  • LaurieDPT
    LaurieDPT Member Posts: 15
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    I just joined the Forum and had my first cmf chemo treatment today. I had nausea and headache with the last drug administered - I think it was the C. 8 hours laser I am still having these symptoms. Is there anything I can do? When I mentioned them to the nurse she said you must be hungry that's why you have a headache and I gave you something for nausea so you shouldn't be nauseous. So it looks like I'm on my own here. Looking for ideas from you all. I have found this form to be extremely helpful. No one understands like someone that's been through it!

  • Inthegrey
    Inthegrey Member Posts: 68
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    hi LaurieDPT - I'm happy you found our thread and am sorry you are feeling 🤢🤢. I always felt horrible the first 24 hours after treatment. I would be in bed all day and feel unsteady, it was hard to make the short walk to the bathroom. Sometimes I'd get a bad headache too and I think it was from the steroids wearing off. An uneasy stomach, queeziness and sometimes nausea were not uncommon for several days.I had a prescription for Zofran for nausea, but found it gave me a headache too. I had to pick my side effect at times, nausea or intense headache

    I'm sorry the the nurse is so uncaring. Even though they give you anti nausea drugs in the IV, many of us get a prescription just in case as well. I'd ask for something. Other tips for nausea:

    Ginger tea or gum, Queezy Drops available on Amazon, SeaBand pressure point wrist bands (Amazon), eat anything that sounds appealing.

    Be sure you are drinking lots of water and fluids to flush your system out. A lot means 3x what you normally drink. I would have at least 4 -5 liters a day but I drank a lot before chemo. Be sure to include electrolytes, I had Gatorades and coconut waters.Dehydration can cause headaches too. I would think by late Saturday night your head should feel better, that is when my subsided.

    Everyone reacts differently and each treatment can be slightly different. For me it got better by #4, but it still sucked.

    I hop my long winded post helps. We are here for you and let us know how your weekend goes




  • moderators
    moderators Posts: 8,187
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    Dear LaurieDPT,

    Welcome to the BCO community. We are sorry for your diagnosis and treatment side effects and glad that you reached out here to our members. There is so much support and helpful information shared here. We hope that you will stay active. Let us know if we can be of help.

    The Mods

  • Dleon24
    Dleon24 Member Posts: 8
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    take your zofran around the clock every six hours, also take Tylenol and alleve , made it through my first week of cmf no nauseous , but day 4 was weird, I felt crazy , like anxious and uncomfortable and I couldn't hear sound or sleeep i had minimial body aches , I also take klonopin which calms me down . I drank over 2 gallons of fluid a day , I'm eating yogurt , oranges , eggs, strawberries, ... water tastes bitter .... but those vitamine waters are good .. I'll see what week two brings me . Fingers crissed

  • Dleon24
    Dleon24 Member Posts: 8
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    I’m getting 6 rounds too which equals 12 infusions . Not sure why ,,, but i have TNBC you

  • Inthegrey
    Inthegrey Member Posts: 68
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    hi Deleon24 - I know those Vitamin waters are good, but you want to avoid anything that is high in antioxidants. They can reduce the effectiveness of the chemo. This includes green tea, pomegranate and such. I learned this in my nutritional packet MSK gave me. I added fruit to water, used lemonade and propel mixes too to add flavor. I had so much ginger tea, I got sick of it.