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CMF treatment survivors and experiences

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Comments

  • jrnj
    jrnj Member Posts: 407

    Pajim, yes, feeling better. Day 3 is always the worst, than I feel a little better each day. That's why I'm not sure if its the chemo or the Neulasta. To be honest I know it could be much worse. No nausea or loss of appetite. I'm gaining weight. Just chemobrain, headaches, some fatigue. By Day 6 I have like a reverse effect, need to keep moving, nervous energy. Running around shopping today, my favorite thing, to get out of the house. Bought lots of crazy things, I think I'm on a live life to the fullest kick, lol. A clearance white xmas tree from Home Depot that I have no room for, an expensive Keurig/cappuccino maker, for my husband and daughter. Haven't drank coffee since my Dx.

    S3K5, yes, I'm taking off from work. Looking at it like a positive to this mess to spend some time with my children and do some projects around the house.

  • s3k5
    s3k5 Member Posts: 411

    Day-4 today after the CMF - have severe steroid crash. Depression and crying for no reason! The dr office is setting me up with a psycho therapist to deal with my depression. Is this normal after CMF treatment? First 3 cylces, I had other side effects like nausea, fatigue - nothing unmanageable. But now with the new side effects, it is getting worse. My neuropathy in my toes are unbearable.

    Could someone suggest some relief for depression and nueropathy? Any tried and true home remedies?

  • jrnj
    jrnj Member Posts: 407

    S3K5, I had severe crash Day 3 after treatment 3 and couldn't get out of bed. But it got better each day after a good nights sleep. Hopefully it will get better. Chronic pain and side effects will get to you and cause a breakdown, so of course that is "normal" for your situation. I can't take anti-depressants, they make me feel crazier. I never gave them a long term shot, but tried a bunch and after a few days quit. But they work for some people so its worth a shot. I like Lunesta sleeping pill and have been taking it for years because I can get sleep which is the foundation for feeling better physically and mentally.

    You might want to post on the December chemo thread for neuropathy as that is much more common with TC, or even older chemo threads as they have completed treatment and might have more advice. I posted on the August thread with a question, it is a very helpful group.

  • s3k5
    s3k5 Member Posts: 411

    Thanks,JRNJ. I will post on the Chemo thread and see what others are doing for neuropathy, steroid crash, etc.

  • jrnj
    jrnj Member Posts: 407

    jrunstroop, how are you doing, are you done or almost done? I get a little sicker every treatment and take longer to recover or feel "normal". I'm in bed days 3 and 4. More tired, more dizzy. My tongue is weird now, swollen and things taste weird. I lost about 75% of hair, but am spray painting bald spots and gray and can still go without a wig, wearing my hair in a ponytail. Down it looks horrible. It looks weird up too, frizzy and curly, but my hair was never perfect, except after keratin treatments, so I don't think it's that noticeable. I had two periods on chemo, and am hoping that will stop. I've been waking up in the middle of the night this week, on a sleeping pill, sweating.

    Jagtag, how are you?

    Not trying to leave anyone out, I've heard from some of the other ladies on the other CMF thread. Any new people on CMF?

  • jrnj
    jrnj Member Posts: 407

    Did anyone have a port for CMF, or just use veins? I don't have a port. Will it damage my veins?

    Did you have kidney and liver testing before every treatment? It seems everyone on Taxol gets it every time, but my Dr. only tested me once at treatment 2, and now 6 weeks later for treatment 5. Is that a CMF thing, or my Dr.?

  • Joyce65
    Joyce65 Member Posts: 30

    Hi JRNJ,

    I had a port for my CMF. It made blood draws and infusion much easier. I did have issues toward the end with the port clogging and having to infuse something to clear it before I could be treated, but I'm still glad to have had the port.

    I had blood draws for every treatment that included CBC with Differential and Comprehensive Metabolic Panel. We discussed my liver numbers and my white blood counts every time I saw my MO.

  • jrnj
    jrnj Member Posts: 407

    Thanks Joyce!!

  • s3k5
    s3k5 Member Posts: 411

    JRNJ, I have a port too which makes it easier to get the premeds, chemo, contrast dye for PET scan, etc. Depending on how long you have to get the treatment, it may or may not be worth the trouble of getting a port for you.

    Do you know how many CMF sessions are you going to have in future? In my case it made sense to get the port because I will be getting chemo or scans for a long time.

    At present, I am off CMF and started on Femara since I needed a 'chemo break'.

  • pajim
    pajim Member Posts: 930

    I too have a port. But I had one for the previous chemo -- didn't get one just for this. With the fluids, etc., it's a large volume of material.

    I did ACT with veins, so that's definitely possible.

    And yes, blood draws before each infusion. Not sure what the 'rules' are to get the next infusion. I assume it's white count.

  • 2002chickadee
    2002chickadee Member Posts: 79

    JRNJ, I really didn't want a port and I didn't need to get one, and I have small and difficult veins that phlebotimists universally hate. I had blood draws before every visit, a full CBC and metabolic panel. I also had everything done on one arm, as I had a right sided mastectomy and even though they say I can have blood draws there and not risk lymphodema, I figure why tempt fate. I keep having things happen to me that are low single digit possibilities! I have one vein on my wrist that is not really useable anymore, a veteran nurse told me they call it the "resident vein" so I guess the less skilled folks overused it. I was also getting poked for several hospital stays, surgeries, etc. so it wasn't just chemo. I'd suggest you start without a port and see how it goes, it's pretty easy to add it if you think it would improve things for you.


  • Jagtag
    Jagtag Member Posts: 4

    Thanks for the reply. I am 75 and have triple negative breast cancer. I had a lumpectomy which went well. I have completed three rounds of chemo.. The major issue is fatigue: My doctor wanted me to stop chemo. Her concern was. That after completing the 8 rounds of chemo, I might not recover from the.intennse fatigue.

    I would appreciate feedback on this. I really want to complete. The 8 sessions. I want everything done that. Will decrease. The possibility of it coming back

  • 2002chickadee
    2002chickadee Member Posts: 79

    Jagtag, have you been able to be active during chemo, or follow other suggestions that help minimize fatigue? I found trying to take walks every day did make a difference. I did have fatigue during chemo, it would ebb and flow through the cycle but did build progressively throughout the 8 rounds. I then went into more surgery and radiation due to a post-chemo recurrence, and then ovarian suppression and an AI, so I was pretty fatigued for months after chemo, hard to say what it was due to. I did eventually recover my energy back, but it was slow, and I was 41-42 and in great physical shape pre-cancer. What about striking a compromise with your doctor? Some people do fewer than 8 rounds, I believe, maybe 6? Do you have an oncotype score that shows how much chemotherapy reduces your risk of recurrence? Terrible fatigue can significantly impact your quality of life, so I'd make sure you have hard facts about how much chemo will help you. It's tempting to want to do everything, but each treatment is its own special gift of additional difficulties that should be avoided if possible. Hope this helps, it's how I try to think about it, but I know everyone's different...

  • jrnj
    jrnj Member Posts: 407

    chickadee. So sorry you had a recurrence after chemo. Cmf is not working for so many people On this thread it is concerning. And you had diep which I will have. How did you find it? Are you in ny or nj Sloan? Did they recommend cmf due to intermediate oncotype like me? A lot of people are doing it because they can’t handle stronger but I could have.

    Jagtag try to hang in there for a few more maybe 6.I've read it works better for triple negative. Hopefully the fatigue is temporary and you can recover from it. I think a lot of my fatigue is from the Neulasta.

  • pajim
    pajim Member Posts: 930

    Jagtag, what about 8 rounds at 80% or 75% dose? If they give a little less, should help with the fatigue.

    Truth be told, with cancer treatments 'they' (who is this mysterious they anyway) always give the maximally tolerated dose rather than the minimally effective dose. No reason that 75% of the dose isn't just as effective.

  • 2002chickadee
    2002chickadee Member Posts: 79

    JRNJ, I'm at NYC Sloan, oncotype 21. I was in the middle of chemo when the SOFT and TEXT trials were reported, which pointed towards women my oncotype not needing chemo, unless they were premenopausal, which I was. I had the older oncotype report which showed the predicted reduction in recurrence from CMF to move it from 14% to 6-8%. 14% sounded huge to me, so I did it. My recurrence was found by my breast surgeon during an exam, she didn't like the feel of the scar from my original biopsy, which was not removed during my mastectomy, so she re-biopsied it and voila. Apparently it is very rare but can happen where they "seed" the scar from the biopsy needle (lots of "rare" things seem to happen to me in this cancer journey). I couldn't feel anything, it just felt like a regular scar to me -- my surgeon is gifted. When I asked my MO why this would happen given that I just finished chemo, she explained that tumors are heterogeneous, and so that was likely a factor. I'm still glad I did CMF and believe it had value for me.

  • jrnj
    jrnj Member Posts: 407

    chickadee, thanks for the info. My Onco was 15 and I am premenopausal at 54, and had differing opinions, but Sloan said yes. And they seem to be big on CMF. I don't really understand the heterogeneous thing, but I like your optimism. Its hard for me to be an optimist. I switched my BS and was told I have excess breast tissue after BMX. I'm glad I'm getting radiation too.

  • Catlady64
    Catlady64 Member Posts: 3

    I started CMF Sept 19th with 12 treatments planned. I have now completed 10 and was excited to be coming to end of treatment but was very disappointed yesterday when I went for treatment no 11 that they had to defer treatment for a week due to low wbc count. This is first time this has happened but I suppose cumulative effect. I haven’t loss my hair and no nausea or diarrhea. Find after treatment constipation for day or two but passes. I have treatment one Thursday then the next Thursday followed by 3 week break. It has been a long haul but for the most part I have felt fine. The main drag is having lower wbc at routine blood draw 10 days after chemo and despite feeling well end up feeling more paranoid about being immunocompromised and susceptible to infection. Feel my world has closed in, but keep reminding myself won’t be forever. This has been helpful to find this thread as it seems on another site no one does CMF these days.

  • jrnj
    jrnj Member Posts: 407

    Hi Catlady, welcome. Yes not much CMF. Most of the CMF is recommended by Sloan in NCY, or hospitals in CA. Where are you? Is Auburn in Alabama? Who recommended CMF, was it a major cancer center? I've heard they think it is good for triple negative, but I get a sense drs. still want to prescribe AC for triple negative. Did they think AC was too strong for you? But I'm not TN, so just basing that on what I've read. Are they giving you Neulasta for WBC? I'm being overdosed with it, WBC are like 19, but side effects are horrible. I'm going to ask for a reduction, but wondering if I should just suck it up and take it. I've done 5 of 8 treatments, and yes mostly manageable, except day 3 and 4 I'm knocked out. I think it may be the Neulasta more than the chemo. I've lost about 80% of my hair, which is traumatizing, but I had a LOT. With some hair gel, and spray paint, I still have enough to look almost "normal" to an outside observer. Trying to avoid the wig. Glad you still have yours. I think although I had a lot and it was thick, I think mine was more vulnerable due to keratin treatments. I had constipation the first week, but no more. I take Colace or miralax the first few days. I lost my taste buds last week and everything tasted disgusting. A little better this week. Hang in there, you're almost done!!!! Are the next 2 treatments consecutive or 3 week break in between? I'll be doing radiation also after.

  • pajim
    pajim Member Posts: 930

    Well ladies, cycle 2 went almost as well as cycle 1. Maybe a little more tired but I have been traveling too. And I caught my husband's cold, LOL. That makes it no fun at all.

    Monday I go for scans. See if this is working at all. The consensus so far is no, but the bumps on my head are getting smaller. I think. We'll find out whether there will be a cycle three. . .stay tuned!

  • jrnj
    jrnj Member Posts: 407

    pajim, Good luck with the scans. Wishing for the best. It sounds promising if you think the bumps are smaller. Do they really decide that quickly, after only 2 treatments? It seems CMF may take longer to work than Taxol, that is why you need more treatments. Keep us updated.

  • Catlady64
    Catlady64 Member Posts: 3

    Thank you for welcome JRNJ. I live in Auburn, WA. My oncologist at UW Valley Med Center deliberated long and hard about whether to give me chemo but he consulted with a colleague who worked at Seattle Cancer Care Alliance and he specializes in breast cancer and consensus was I would benefit from chemo as preventive measure to Increase my chances of preventing recurrence. I was given choice of doing TC or CMF. I went with CMF when he said more patients find it more tolerable. I have 3 week break between treatments and don’t routinely do shots to increase wbc. I did have neupogen about half way through as wbc low. Didn’t have any side effects from that 3 day shots. Unfortunately went for second last treatment Thursday and they couldn’t give chemo as wbc low and oncologist decided to defer a week. This is first time that happened but probably cumulative effect of chemo. I was bummed as now will finish chemo one week later than I thought but I suppose after 6 months of doing this one more week isn’t big deal. I’ve learned from this horrible experience of accepting and going with the flow and control the things I can with diet and exercise and let go of things I can’t. Wishing you well.

  • Jrunstroop
    Jrunstroop Member Posts: 9

    JRNJ hi! I’ve been off the boards for a while and am just catching up. I too had some bad side effects from neulasta (fevers sending me to hospital to check for everything and it always was ok). Round 5,My dr started having me in the next day for a half dose of neulasta and that seemed to do the trick...kept my wbc up but eliminated the fever. I still did have the swollen lymph nodes though the next day and somewhat lessened bone pain.

  • pajim
    pajim Member Posts: 930

    Hi JNRJ, normally not so fast to scan. But there are extenuating circumstances. I haven't had a working treatment since september. That's not a good thing when you're a mets patient.

    Normally when I start a new treatment my tumor markers dive. But in this case they are continuing to fly. My MO is worried. My husband is worried. I'm trying not to worry.

    Anyway, we'll see. I will know all by Wednesday.

    Catlady, welcome!

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hello Friends,

    I completed 6 rounds of CMF on 5/21/19. I had 20 radiation treatments that ended on 7/29/19. I am on Arimidex for the next 10 years and that is giving me achy joints.

    My Oncologist recommended an IV of Zometa every 6 months for 3-5 years. She said that this takes calcium from your blood and puts it in your bones. It helps prevent cancer from spreading to bones. I had my first round last week and experienced fever, chills, fatigue and achy bones for 6 days. Is anyone else getting this? If so, is there anything you have done to prevent the side effects? They said to hydrate and I had 80 oz of water 2 days prior and on the day of the infusion. I had 40 oz per day for several days after. Hot decaf green tea, Motrin and Aleve all helped with the chills and pain.

  • jrnj
    jrnj Member Posts: 407

    hi I hate chemo, not there yet. Had my last cmf yesterday. Yah!!!! Will start radiation soon. My mo said aromasen might have less side effects. You might want to try one of the hormone treatment threads. There is a lot of activity there.

  • socallisa
    socallisa Member Posts: 10,176

    catlady.hope you are now finished with chemo. Just wanted to say I was in Auburn WA. My son teaches at Auburn HS. He lives in Enumclaw. Small world.

  • lisachip
    lisachip Member Posts: 3

    Hi - so glad I found this site. I will be starting CMF in about 3-4 weeks and quite a mess. I have three months of chemo followed by 4 weeks of radiation, 3 more months of chemo then a few years of HT. Trying to take this a step at a time but it is overwhelming. And add to that the fear of getting COVID-19 I will be turning 61 next month, Stage 1b or Stage 2, grade 2, one lymph node positive, and high risk on the Mammaprint test. I just need to breathe and take the next step forward. My onc recommended CMF and described it as an older drug, first chemo treatment dating back to the 70's through the 90's. She recommended it due to milder side effects, milder effects to immune suppression which is better given today's risks, a marathon rather than a sprint (ie she also offered TC but said those side effects were harsher with a shorter course of 3 months v. 6 months on CMF with less harsh side effects). How are you all doing? I am in Kirkland WA and decided to go with Seattle Cancer Care Alliance, I think a good choice. I had a lumpectomy a few weeks ago, recovery is coming along but still quite painful.

  • lisachip
    lisachip Member Posts: 3

    Good to hear your last comment. I too was given a choice between TC and CMF and am going with CMF, my doctors are at SCCA too. I will be starting chemo in a few weeks and starting to get in a knot so good to hear your comments about accept the things we cannot change and going with the flow.