CMF Question
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Sipping Airborn this evening. Had a Perfect Food smoothie for dinner along with a Kambocha. 2 shots of Lilly of the Desert detox formula today also. Have Patch-its on my feet and my body is rubbed down with coconut oil. Ahh..Chemo vacation has arrived.
Doc says I can detox until 48 hours before my next treatment.
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I'm wondering if anyone else has questioned whether CMF is enough. Maybe it's the lack of side effects (which, don't get me wrong, is a GREAT thing) or maybe it's that on every site or discussion board I research it...I barely find mention of it and when I do, I read things like, "it's old-fashioned" or "used to be more common" or "is not considered aggressive for young women." I'm 36 years old, so I can't help but be scared that I'm not doing enough and then, on the other hand, I can't help but think "why go overboard?" Would my oncologist steer me wrong? I trust him, but I've only known him for 4 visits. Just thinking out loud. I just don't want cancer coming back to haunt me someday because I didn't do THE MOST I can do. I don't care about the side effects or hair loss or what have you...I care about NOT having cancer! WOW...having a weird night, sorry.
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Sorry, I think I'm just having one of those --if you're not suffering, it's not working--moments. It'll pass. I'm grateful I'm not suffering...SOOO grateful!!!
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Judy I asked my on that very question and she said severity of side effects is not an indicator of how well it is working. You will know it is working by the change in your blood counts.
She told me that research showed that CMF works almost as well as AC, within a few statistical points. Hope this helps.
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Judy, I agree with Merilee and have ask my onc the same question. Also, did your onc share with you the percentages before you started chemo on each of the chemo treatments? This helped me in making my final decision on TC or CMF. I'm still happy with my decision although still a little scared that it will come back but I do think that CMF is an excellent chemo treatment and has been around for many, many years and there are women still here to protest to just that fact. If you're still worried, talk to your onc.......I'm sure he will ease your fears (at least some). It's normal to worry.....we all worry
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Thanks Merilee and cabmom...I just needed to hear it again. My onc went over everything and told me all the reasons CMF made the most sense. Just to spite me for poo-pooing the lack of side effects, I woke up this morning with a NASTY sore throat.
That's what I get for complaining about something I should NOT be complaining about. My onc definitely said AC would just be overboard for me. He said some oncs might suggest TC versus CMF, but he felt most comfortable with CMF, as it had been around for longer and he didn't think it was necessary (considering my particular stats) that I needed to subject my body to the meaner side effects that even TC comes with.
My counts were great at my appointment yesterday, so I get to skip the appt. with the PA next Monday and have treatment #2 on 2/1.
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Judy
Good to hear your counts were ok. Salt water gargle is good for that throat.
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Hello, I am hoping i can get some information. My mother-in-law is starting chemo next week. She will be getting CMF and I would like to know how soon after each treatment she will start feeling lousy. She lives alone and my husband and I are planning to help her out after each treatment and stay with her and it would help to know at what point she will most likely need overnight help, and for how long.
She also wants to be able to work throughout treatments and I was wondering if she will need to take days off after each treatment and how many. Have any of you kept working throughout?
My sister is a breast cancer survivor at age 38, but her treatment had a different combination of chemo drug so I can't really go by what I know from her experience.
Thank you for any information you can give me. You are all heros in my eyes!
Meryl
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Hi Meryl: Everyone seems to react differently to CMF so I'll just let you know how it has been for me and I'm sure some of the others will chime in too. I had four treatments of AC just before CMF which I'm having currently which may have affected how I reacted to the first CMF treatment. CMF is regarded as light chemo and typically does not produce severe side effects. In my case the SEs have been nausea, constipation and some fatigue. There is also pain after the Neulasta shot which I get one day following treatment, but your MIL might not need that. Neulasta is used to boost white cell counts.
I have three out of four CMF treatments over me. Typically I feel fine on the day of treatment (Day 1) but have difficulty sleeping because of the steroids that are typically given with the treatment. Day 2 I feel wired as the steroids are still in effect. This is the day I have the Neulasta shot and by that evening, I'm beginning to feel sore mostly in my neck shoulders and upper part of my body. Day 3 the steroids and anti-nausea meds wear off and this is the worst day for me. I have low level nausea and feel depressed. I have meds for the nausea but don't take them as they cause constipation and I'd prefer to suffer low-level nausea than the constipation. Eating small amounts frequently keeps the nausea at bay.
I'm unemployed so can't comment on the work issue. She would likely need to take a day off for treatment as that can take a few hours. If she doesn't have a very active job and has understanding co-workers she might not need to take any other days off. I would like to be working now as it would serve as a distraction.
Is your MIL having treatments at two-week or three-week intervals. I have them every two-weeks, but every three-weeks seems to be more common and means that one has more good days between treatments.
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Thank you so much for your response Mary! Your information was a big help. It seems that most likely she will need help the night following her treatment, and then a day or so after. It seems to be the same as what my sister went through.
Her treatments will be every 3 weeks so she won't be done until July most likely. In some ways it seems every 2 weeks would be better in order to get it all over with.
Good luck to you and congratulations on being so close to the end of your treatments!
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Meryl, I usually felt pretty good the day of the treatment. My worst days were days three and four after the treatment. Then I started to feel better until the next treatment. The treatments are cummulative so I go more tired as the treatments progressed and it took a few extra days to bounce back after the last treatment. I only had to have the Neulasta shot once during my treatments and I had no side effects of any kind with it.
All in all, CMF is really quite doable...........just not smething we WANT to do! Good lluck to your mother-in-law.
Rita
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Meryl, I'm kind-of repeating what MaryNY and ritajean said a bit...I started CMF on 1/11, so I've only had one treatment so far. I felt slower and a little nauseous on the day OF the treatment and the 2 days following and by the 3rd day out (which, I guess, is really day #4), I felt REALLY lousy...VERY tired and nauseous. By that night, however, I bounced back to my normal self and have felt pretty darn great since. I work part-time from home, 20 hours on weekend nights. I planned my treatments for Monday with the hopes that any SEs would subside by my Friday night and I was very happy that turned out to be the case. I made it through my weekend shift and I work until 2 a.m., so I was worried about the late night aspect of it. I'm hoping the cumulative fatigue won't zap me, but it's kind-of a go-with-the-flow thing, I guess. I had a sore throat yesterday that lasted all day and miraculously disappeared by this morning, so it was likely an SE...the chemo messing with the good cells and the bad. Honey and Lemon cough/sore throat drops did the trick for that. The Neulasta shot is something I'm hoping to avoid. So far, my counts are a-okay. I have my second treatment on 2/1.
Best of luck to your MIL!
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hi everyone - i'm relatively new here and am trying to make decisions about my treatment. my oncologist is urging me to do an 8 cycle treatment of ACT, but i just can't bring myself to do that. i am very very anti chemo, and the only reason i'm considering it is because my oncotype came back that i have a 32% chance of recurrence. the report said that if i do cmf, that drops down to 12 to 15%. of course my onco wants the act because then it drops that down to about 6%, but like i said, i just can't reconcile myself with pumping that kind of toxin through me.
so...he said that he of course supports my decision, and that if cmf is the compromise, he'd take it. he's proposing the pill for the "c" part, then i.v. for the "m" & "f" part, given every week over the course of 12 weeks. has anyone gone through this? he said that he could spread it out longer if i wanted, but it would make it a 6 month treatment plan, and i'm not sure i want to feel like crap for 6 months. anyone have any insights on the different lengths of time & what it means in terms of side effects? what are the some of the most common side effects that you have encountered? i know this is probably all in the past 139 pages, so i'm asking you all to repeat yourselves, but i'd so appreciate any insights!
thank you
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I did that regimen js, but over a six month period...that was over nine years ago now
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socalLisa - i saw one of your posts about it, regarding your hair. honestly, and it may be vain, but this is a huge concern for me. mine is pretty long, and curly. not thin, but definitely fine and i wouldn't say it was thick by any means. i can deal with it thining out - my sister has very thin, fine hair but it looks healthy & it doens't look bad at all. i'll take this over no hair, i'm just concerned that it will fall out in patches. beyond that, it's still chemo, did you have any side effects during chemo that really bothered you? what about any long term se's that have hung around? the chemo brain thing is a HUGE concern as well, i'm an executive in a position where i need to be sharp & on top of things. and of course, at 37, i'm scared to death of going into early menopause.
cmf is actually not what my oncologist really wants me to do, but he said he'll take it if it's the only way i'll do chemo. it's a better option in my mind because supposedly the se's aren't supposed to be as bad or as harsh, but the only people who i think can adequetly give me a real picture of if this is correct is the people who went thru it. he wants me to do the act, but the numbers on that are 6 to 10%, so the difference isn't really all that big. i'm a bit of a risk taker, i'm comfortable with the slightly higher cmf # and i can't imagine pumping myself full of such aggressive drugs like a.c.t. when the numbers are so close.
i'm just trying to get a realistic picture of what to expect, because my oncologist can give me lots of stats and perceptions of what he's seen from his patients, but he doesn't know what it *feels* like from the point of view of having in happen to your body.
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JS - I did 24 infusions - weekly CMF - the way your onc. described. The C orally and the M and F infused. I think CMF is usally done over 6 months - anywhere from weekly, biweekly, and every 3 weeks.
I was 44 at diagnosis, and yes it did put me into what appears to be menopause, not chemopause. My onc. said that CMF seems to put most of her premen. patients into menopause more than some of the other types of chemos- possibly due to the length of chemo - not sure.
Other than that, the side effects were really minimal, yes my hair thinned, I took anti nausea meds to ward off nausea, but overall felt much better than expected. My white counts did go down each time, but always hovered just over the line so I was able to get the chemo and not need the neulesta shots. I chose to not have the steroid at infusion but took zofran as I do not like how I feel on steroids. Totally my own reaction to steroids, and the zofran worked well.
CMF is still chemo, and some have had more side effects than I experienced.
Hope that answered some of your questions! This thread has some wonderful women who are going thru treatment, and many who have been thru CMF - and were so helpful to me and others.
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he said he's going to have me do 12 doses, once a week, for 12 weeks. he said he could extend it to 6 months if i wanted, but i don't want to extend the amount of time that i'm putting all these chemicals in my body. he said based on his experience, doing it for 12 weeks like he's suggesting, only about 30% of patients go into actual menopause, and of those patients a majority of them were 45 and over. he says he doesn't believe it will happen with me but there is a chance. he also knows that addressing the "chemopause" is also a huge issue for me as well, so we're going to do some things to deal with that as well.
steroids? we didn't talk anything about steroids with treatment. what is that for? absolutely not, i am adamently against steroids. what is zofran and why is it given?
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JS37
You sound really scared. I was too. I am doing my treatments every 3 weeks because I wanted some time between treatments to rebuild my immune system. Chemo stays in your body 10 or so days and there is a window of time to go back on anti oxidants and blood building supplements if you spread it out. I have only one treatment under my belt but felt much better than I expected.
Constipation is a problem most of s experience but can be managed with senna. The steroids are used to open the blood vessels and allow the chemo to get into the system well. I actually like how the steroids made me feel. For the first 2 days after I felt more alert than usual. I am working full time.
Just a side note. Menopause is not a bad thing if you are ER+ which I see you are. The alternative is an estrogen blocker which can have some side effects as well.
I did not do Chemo in Jan of 09 and then found myself with a recurrence 10 months later. I encourage you to try the CMF. You can always stop it if you feel it is too much for you.
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JS37, I think we all can understand your feelings and how scared you are. I was petrified and that's probably an understatement but I'm so happy that I did CMF. I've had three oncs: one wanted to do no chemo at all, another wanted to do TC and the third said CMF was more than enough. So, I'm on CMF and have finished #4 of 6. I will be doing #5 next week. CMF is definitely doable and my treatments are every 3 weeks, which is all IV not C orally so it's hard for me to give you advice on how you might feel. However, I will say that overall even with the minor se's that I've had, I feel great. I have had a rash a couple times while trying to get the anti-nausea med's right, some nausea (but manageable with the meds) and constipation (also manageable with the meds). My blood counts been good so I've not had to have any Neulasta shots which I'm happy about because I hate taking med's. As for the hair thing, I totally understand your feelings and it bothered me more than I care to admit because I don't think of myself as a vain person but I think it's natural for all of us to feel this way. No one wants to lose their hair but admire the ones that have had to go through the harsher treatments and have lost it. Their strength is quite amazing......with all that said, my hair has thinned but only to the point where I can tell but it seems no one else can. My husband says he can't even tell. Now, I have heard that taking C orally might cause more hair loss but you'll have to ask your onc about that or talk to these ladies that have been on that particular treatment but I still think that it's not complete hair loss just a little more thinner than taking all of the med's by IV. Good luck with your decision and Merilee is right, you can always stop if you feel it is too much for you. Just know that CMF is definitely doable, it's been around for years and years and there are a lot of women still here to attest to that fact. This is a great bunch of ladies and they helped me so much before I made my decision and now, while I'm making this journey and we'll all be here for you too, whatever your decision might be.
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So, this nadir thing...the point when blood cell counts are at their lowest...think I'm feeling that today. Fatigue has hit me after several REALLY great energy days. It's day #11, so looked it up and coincides with nadir...makes sense. At the very least, at least the SEs are kinda predictable. Just hope the fatigue doesn't last all weekend...have to work, work, work.
Hope everyone's feeling well!
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judy1973 - i read your above post about whether or not cmf is enough...i had oncotyping down, and strangely enough, it came back saying that cmf would lessen my chance of recurrence from 32% to 12% so that's a huge difference. my oncologist doesn't agree, he just started throwing some numbers out there that i'm not sure where he got them from saying that cmf would only reduce it to 20% (but i'm having some issues with whether or not he's right for me). he wants me to do act (which i thought you weren't supposed to do the a part unless you had node involvmenet, which i don't). he doesn't like cmf, i get the feeling that he thinks it's useless. but i told him that it's the only chemo i'd do. for me, it's all about putting as little chemicals as needed to do the job into my body, i don't trust chemo. nothing is going to change that. what it does to your body in terms of healthy cells & long term effects are very worrisome to me. so to me, even though i'm not thrilled about cmf, i'm comfortable with it, and feel confident as much as i can be. but i'm a bit of a risk taker, and it's so individual. and i think it has a lot to do with the relationship you have with your onco.
so i'm wondering why mine wants me to do weekly treatments. is it his way of trying to get a higher dose of chemo in me, as in "dose dense"? i'd love to find out more about if taking c orally causes more hair thinning than in an i.v. form. i honestly am in awe of the emotional strength the women who go through that have. i will be the first to admit, i can't do it. but i have a lot of lingering body perception issues that i deal with - i was anorexic for 10 years, so there are a lot of extra issues there. i'm trying to navigate this without it being a "trigger" for bad habits...like not let the feelings of being out of control trigger the part of me that tries to deny nourishment in order to feel that control. or how to potentially deal with things like weight gain that comes with it, because that's just a circle back to the starving to feel in control of my body issue, which is why i'm concerned about the steroids.
thank you everyone, for your info & support - i just really want to feel normal. and to feel as normal as possible through this process. i really miss feeling normal.
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js37: have you considered going for a second opinion? You don't sound entirely happy with your current oncologist. Maybe if you went to see another one, it would help you sort out the pros and cons of the different chemo regimens.
I went to see two oncologists originally just so I could compare one to the other. I was surprised to get different recommendations from the two of them. Then I went to a third onc who ordered the oncotype test and based on that result, suggested I might not benefit from chemo. So that made three different opinons. Then I went to a fourth onc who persuaded me that with positive nodes not doing chemo was not a good choice. Chemo has not been easy but at least when it's over I can look back and know I did all I could to keep BC at bay.
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Mary you make a good suggestion. I did not like the original team of oncs I had. I found another Onc when I had a recurrence and I just love her. Night and day. The first set made me feel like a specimen and the second one really cares about me the person. I trust her and I did not trust the first set.
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that's the hard thing. i like him. i think as a doctor, he's going to go out of his way to make sure that my side effects are managed in a very liberal way & that he'll do anything to make me comfortable and go the extra mile for me. which not all doctor's will do.
that being said, i will admit that i am a difficult patient. telling me - this is what i want to do, this is the side effects but we'll manage them - is never going to be an acceptable end of a conversation. i need to know the details. i feel as if he thinks my need for details & all possibilities is something that is needless conversation. sometimes i feel as if i'm being looked at as if i'm some hysterical girl who is letting big bad stories on the internet influence me. it's not. my opinion on chemo has to do with all the things i've read from medical sites that are decidely pro chemo because that's what they do, they do chemo.
so i had decided that i wasn't going to do chemo unless the onco type came back with a really high recurrence number. i was actually feeling kind of confident, given my particular cancer, we expected it to come back right around 20% or a little higher. i was okay with taking that risk even though it was very apparent that he thought it was a bad choice & every time i talked to him it was like the hard sale. i would bring up a question or concern, and instead of answering it with detail he'd go into a big long speel that was more like a sales pitch with very vague numbers that didn't seem to be definitive - which he STILL does.
so my oncotype came back with that 32% just with tamox, but it was that really low 12% with cmf. yet he seemed to dismiss that as being incorrect and surprising, and pushed the act yesterday. i told him flat out, off the table. so i'm relunctantly decided to do cmf - relunctantly because i am very very anti chemo, but that 32% is just a bit too high for my comfort level. so to try to reconcile the 2, i've chosen a treatment that is somewhat more "light" so to speak than the other aggressive treatments. but i still have questions. and concerns that he may feel are trivial and silly, but they are MY concerns and regardless if he thinks they are valid or not, i want and NEED him to baby me on those concerns and take them seriously, even if he doesn't think it's an issue. but i kind of feel as if he thinks i'm just being hysterical about the entire thing.
so i don't know what to do. on one hand, from what i hear from others whove worked with him, he goes way above and beyond to make sure patients are comfortable and is very liberal with scripts & making sure that things are managed in a way that makes it as easy as possible. and he makes himself personally available 24 hours a day with a pager. you can't beat that. BUT, on the other hand, and again i know that i can be difficult, i need a higher level of understanding of things than most patients. and i get so frustrated when i start to feel as if my need for that detail is being dismissed as unneccesary. it's necessary for me.
i don't know. i just feel as if it's going to be a constant battle. like with the cmf - there are things i know i'm not going to want. like no steroids - which i'm sure will turn into a battle about how i just have to have them for some reason. and no decandron, the side effects from that and how despite what he says about stats, in the real population, seem to effect a lot of people with a greater incident. this is MY care, i want to know every single thing they want to put into my body beyond the cmf, i want to know why, what it is, what the side effects are,and then I want final say on whether or not they push that through the i.v. i'm just afraid that it's going to be a battle every single week. but then, will that really change with another oncologist? i'm sure they are all going to be of the same mind - i am the dr, i know best, why are you questioning so much?
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JS
perhaps it will help you to understand what each of those chemicals of CMF actually do to kill the cancer.
One of them blocks folic acid which cancer cells need to grow, one of them tricks the cancer cell into pairing with it as a cell then they can not divide as they do not have the proper mechanism, and the other one actually goes inside the cancer cell and strangles the dna of the cell. I felt better after learning just what was going o happen inside my cellular level body.
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Merilee, thank you, thank you, thank you. Not sure if you helped JS but you helped me. I've wondered about just that and then wondered why I haven't asked that particular question to the onc but just never have thought of it while I was there. That gives me a new level of security that I didn't have........I know I made the right decision with CMF but I guess we always will wonder if we've done enough, just human nature but I feel even better about it now. Thanks.......
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js.....You need to feel REALLY comfortable with your onc. Your onc is going to be around for a LONG time.....not just through your treatment process. It seems to me that you are not so upset with your onc as with his opinion about the CMF. That might be reason enough to get another opinion from another onc. See what the second onc says about the CMF. If he or she thinks it's satisfactory, then you could ahead with it and have a good feeling about your decision. If the second onc agrees with the first, then maybe you'd be more willing to do their suggested treatment. Everyone's cancer is different so we all attack it in different ways. Besides the oncotype scores, many oncs consider the person's age and other factors, too. Hugs to you as you mull over all the factors that are involved in making this decision!
Rita
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js: As Rita said, your onc will be with you for a long time. There is no harm in getting another opinion. I saw a total of 3 oncs at different major cancer centers. Having them agree about my chemo helped me feel secure in my choice. It sounds as if you have some genuine concerns so think about speaking to a consulting onc about your treatment. There is not one "right" and one "wrong" treatment but many variables. I wish you well in this journey.
Cyber hugs
Mandy
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thanks everyone, and thank you merilee...i actually did know that. i've done a TON of research. and even though i will always look at chemo as a poison, the reason i chose cmf is because of what those drugs do, and how it seems to be more gentle on the rest of your body. of course that is all relative. even though i am anti chemo, given my recurrence rate %, i actually am comfortable with the decision to do cmf. there is NO WAY i'd put those other drugs into my body. it's obvious that he thinks cmf shouldn't be my choice. when i saw him on wednesday, it turned into a 3 hour brow beating on how i should do the a.c.t. he, as my doctor, and i understand, wants to put the maximum amount of chems into my body in hopes this won't come back. i want to put the least amount of chems in my body necessary. i probably should have changed onco's in the very beginning, but it was all just consultations and then i had my lump & then my bs wanted to go back in and get a little more tissue to be on the safe side, & with all of this over the holidays it just sort of got away from me, and now i'm 2 months out from the official diagnosis.
i've done some more research, and now i'm not sure though that i want to do the once weekly, 12 week dose dense regiment he's advocating, because it seems that the risk of leukemia seems to rise with the more dose dense regiment he's proposing. leukemia runs in my family. when i brought it up he just dismissed it off saying it was a great grandmother so it was distant and not to worry about it. um, i wasn't supposed to bc either...at first the idea of 12 weeks was like -awesome, i'll be done in 3 months. but i'm thinking i'm going to tell him that i'd rather do the 24 weeks and no pill for the cytoxin. i thought that was kind of cool at first too, just pop a little pill, then i realized that would mean a constant level of that drug in my system.
any insights from people on the c pill versus getting it i.v.?
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i am actually getting a second opinion - from seattle cancer care alliance, next friday.
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