CMF Question
Comments
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Lots of vanity here, too. When I pass by a mirror, my eyes go straight the scalp. The pic in my avatar was taken literally minutes after I got home from the salon. I knew the hair would never look that good again (and I was right!)
The new girls already look better than the tissue expanders and even better than the ones God gave me. But, they are not "spectacular" (Seinfeld, anyone?), and looking at the results that some women got on timtam's picture forum has made me pretty confident I'm going to be asking for a revision. There's that vanity again!
Do tell how exactly you lost all that weight. I'm trying to coax my body to drop some lbs. as we speak but it's not listening.
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samiam40, what is timtams picture forum? Since most of you guys have been on CMF, which I am considering asking to be placed on instead of TC, do you agree that is has less side effects? I've heard that even though TC is faster, the side effects are really rough. I'm still waiting on the BRCA test results to return and with a oncotype of 19, still trying to decide on chemo but one chemo doctor says it would be little to no benefit and the other says that it will.......so confusing but I'm sure that you was probably there as well with a Onco 14. Also, how does the scheduling work with CMF. I know that they've told me that TCx4, every third week. I'm really concerned about the numbing that can become permanent with TC and I've also heard that it can damage organs. Is any of this true with CMF?
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Cabmom...
The main side effects of CMF are some nausea that can usually be controlled for the first four days, hair thinning but not complete loss where a wig is needed, emotional roller-coaster just like on any chemo, constipation sometimes after the treatments, mouth sores for some (which can usually be prevented by sucking on ice chips while doing the treatments and by using a special toothpaste and mouth wash, and some fatigue toward the end of the treatments.
I took 6 treatments every 3 weeks instead of the 4 that're given for other types of chemo. They were given by an IV.
I am now 2 years out of treatments and have some forogetfulness that I'm blaming on the chemo instead of my age. Other than that, I see no detrimental side effects from the chemo yet.
It is a hard decision to make. You will make the right decision for you.
Rita
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Cabmom,
Username "Timtam" keeps a completely separate forum where people post pictures of their reconstruction (or "un"reconstruction) to get advice and support. It is extremely helpful if you are going through a mx to see what you can expect and the different options for reconstruction. If you pm her, she will send you instructions on how to access it. She attempts to keep it private to BC.org members, though, so the instructions on how to access it have to come from her. If you are interested, search her name and send her a pm.
Yes, I will say definitively that the side effects from CMF are usually less severe than TC. You may not lose any noticable hair on CMF; you will probably suffer nausea and fatigue for a few days after treatments; you may suffer mouth sores, heartburn, hot flashes, etc.--I didn't.
I was told CMF does NOT have the potential to cause long term side effects that some of the other regimens do (i.e, heart problems, neuropathy, leukemia). In any event, however, those side effects are extremely rare.
That being said, TC is over quicker and some people don't find the side effects debilitating at all. It's also a newer regimen and is considered to be more powerful than CMF.
As Rita said, it is a difficult decision. Go with your gut and the oncologist you trust the most. Either way, with an oncotype of 19, you are probably cancer free right now and any chemo you do will just be like an insurance policy. Good luck!
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ritajean and samiam40, thanks so much for the information and hopefully I will make the right decision. At present, I am still waiting on test results from these last rounds of unexpected tests so we'll see what has to happen from this. This website is great and I'm so thankful that I've found it.
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Hi All!
I had my first mammography since the BC last year. I am teary eyed with relief and happy to tell you that the doctor said it was "normal."
Mandy
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Hi All: Sounds like everyone is doing pretty good. I am so happy about that. My second treatment a week ago left me more fatigued than the first, however, no nausea, mouth sores, etc. I did lose more hair this time but still not noticable. I have lost weight, 40 pounds since my diagnosis in April....10 pounds since starting CMF. However, as you can tell by my picture I have a big time weight problem and not anywhere close to a normal weight. I am watching my diet really closely which I should have done years ago and counting carbs. For some reason CMF has effected my blood sugar and for the first week after I receive it I have to take insulin shots which I never had before. I do have metabolic syndrome. The Decadron is the culprit. At any rate, watching carbs and eating healthy and I am losing weight. Now that is an aw hah moment that I should have had 30 years ago. lol. Because of the weight loss I no longer need blood pressure meds. I am hoping I come out of this a new woman!!! Cancer free and in a lot better shape. Like they say.....when life gives you lemons make lemonade. Take care all and I am wishing that everyone has a great week. Take care.
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HI all,
Can I just throw this out there--- I really don't understand why so many places insist on giving Decadron as part of CMF. I understand that it is supposed to help control nausea, but it has so many side effects that persists far after nausea has passed. Plus there are many other new, better agents of controlling nausea these days. Is there fear of an allergic reaction? I know that is a very real concern when Taxols are being given- I can't recall the exact percentage, but a high number do have allergic reactions to these agents. But my understanding is that it is rare with CMF.
I had an unusual reaction to Decadron (figures-- that's pretty much been my MO). Started with a severe acne outbreak and an extreme emotional reaction. (Not unheard of- think of the stories you have heard about athletes going into rages after steroid abuse). This after my first A/C treatment 8 years ago. I had the rest of my treatments without and did just fine with just Kytril. And no Decadron with CMF a year ago July (Hi Annie- my year anniversary too). I just wanted to throw this out there to anyone who might be suffering some of the side effects of this powerful steroid and may not know that refusing it is a viable option to at least ask about....
-julie b
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Everybody: A big WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO to our Mandy!!!!!!
Re: weight loss: nothing at all would budge til 6 months after chemo. Then I had a hysterectomy/oopharectomy and I wasn't allowed to budge. As soon as I got the all clear to exercise, I did, and just cut out the ice cream. More salads, less main course. Steered clear of bread in general.
15 lbs. flew off....just used an airstepper thing, bought online and an exercise bike, and walking.
Now some are creeeeping back on, due to modification in my synthroid dose. Grrrrrr.
But I'll get there.
Girls: This is the MOST non PC comment I've heard yet, but I think it's one that most of you will hear also when all of this is done. A friend I had not seen in a few years told me "OMG, you look amazing!!! What did you do?" My answer: (laughing ruefully) I had breast cancer". Friend: "well, if that's what it did for you, I wouldn't mind getting it." ????????!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!????????????/
OK, very strange comment, but you see that you can come out of this looking and feeling way better than before. We have to think of ourselves as Phoenix like. We go thru the fire, and emerge, renewed. And apparently "looking better than we ever did". I find the comment just weird, but it's actually positive. I hope everyone can stop laughing long enough to see the good part there. Thought I'd share it, for those in the throes who are thinking now "Oh good grief, will I ever look or feel like myself again?" Answer: resoundingly YES.
Love to all and super big congratulations to our Mandy. She has kicked cancer butt!!!!!!
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Julie:
Happy boobiversary to us, happy boobiversary to us.........happy boobiversary, no mo chemoooooooooooooo..happy one year to us!
I hope you are feeling great! Still loving your avatar. I tried to do me and hubby at beach house, but it's so freakin tiny, I have to try another one.
Hope the kids are great, also.
love to you!!!
ps: yes, confirmation on the CMF causing no long term bad effects on organs. It is safe on that score apparently.
I had decadron sensitivity too, but no nausea.
love you all
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YEA! for Mandy! I have to admit it but I still get those "happy tears" when I get good news at my check-ups. WONDERFUL!!! Upward and onward you go!
Julie and Annie...Wow! One year and many more to come! That one year mark was a very emotional one for me. You are so right, Annie. There is a"new normal" after everything is over that's pretty darn good. Oh, we have our times but then who in this world really doesn't have some off days and emotional scares. For those of you still in treatment, keep your chin up. Things WILL improve!
It's a lovely fall day here in Central Illinois. I've already played 18 holes of golf and now have some errands to run. I hope it's equally as beautiful in your neck of the country.
Hugs to all of you!
Rita
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Julie, I NEVER had decatron...
I don't know why either..
Be sure to watch your liver on CMF
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Hi Rita! How are you doing? I'm assuming all is well in Ritaville.
Hi there Lisa, how are you?
here's another goofy avatar, my sister Amy and I fighting over the can of cranberry sauce as we have always done each thanksgiving. This was a special fight as we resolved that we would do this every thankgiving for the next 50 years.
Now I have to live to 103, still fighting over that damn can of sauce.
xoxox
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Mandy, yay for clear mammograms! That's awesome.
Rita, It WAS a gorgeous day here in the heartland. I sat at a sidewalk cafe with dh and enjoyed a gelato. Not good for the waistline but very good for the soul.
Annie, at my very first meeting with my breast surgeon I told her I was NOT going to die from BC. She said, you're right, you'll probably die as an 80 year old woman from falling off your porch, which sounds pretty good to me right about now.
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Is CMF mostly used for node-negative women? In looking back a few pages, I don't see any node-positive cases.
I had a lumpectomy in August, IDC tumor 1.8cm and one positive sentinel node. I should be beginning chemo at this stage but have gone to three oncologists and got three different opinions (1) TC*6 (2) AC*4, then T*4 (3) FEC*6 or CAF*6.
I want to avoid the taxanes because of my prior medical history—I had transverse myelitis, an autoimmune neurological disorder, a year ago. I still have some residual neuropathy from that in my right leg. Since the taxanes can cause neuorpathy in 50% of patients and I don't know if I would be particularly susceptible, I really want to avoid them if possible so that would rule out options 1 and 2.
I know the anthracyclines can cause CHF. In anticipation of starting on CAF or FEC, I had a MUGA scan this week and my score was 52%, which I think is a bit on the low side. Need to speak to the onc about that. But not so happy with taking a drug that had cardiac toxicity either.
So now I found this discussion and wonder would this be the combo for me? There seem to be fewer side effects. I suppose the downside is the duration of treatment is longer -- is it typically close to six months?
When I met onc No. 3 last week, she suggested that I have the Oncotype DX test. I found out today that someone in her office screwed up and test wasn't ordered until I called to tell them that Genomic had no record of it. Since I had one positive node, I'm not that optimistic about getting a low score but I would be ecstatic if I did.
In the meantime, I'd love to know more about CMF.
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Hi Mary..
Yes I had a positive node..one of eight taken
I had CMF and finished up over 8 years ago now..
I was Stage 2B, IDC, ER+/PR+, HER2-
dx 11/2000
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Hi Everyone!
Thanks so much for your kind thoughts on my "normal" mammo. I was so stressed out that after the doctor gave me the good news, she asked, "Are you all right?"
Mary, I don't think that node status alone determines which chemo you take. I had a positive sentinel node and did CMF. While its side effects seem to be less than some of the other chemos, my oncologist described it as a hard chemo because it takes so long (I did 8 doses IV every 3 weeks, but because of some postponements it took from November 11 to May 13). I am one of those people who seemed to try out each and every side effect, but I nevertheless I was able to finish all 8 doses. Most people do not have as many side effects as I did, however, so I would not assume that you will get them all--in fact most people have very few side effects. I found this web site to be helpful in figuring out the side effects:
http://www.cancerhelp.org.uk/help/default.asp?page=4197
Anyway, everyone have a good day. Today is New Year's for me, so to all, L'Shana Tova--for a good year!!!!
Love
Mandy
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Hello All: Just catching up on all the posts. Everyone seems to be getting on pretty well. I received my results from my gyn check up and everything was fine. Yea!!! I can't believe how much I worry with every little thing. I will see him again in Feb. It will be 1 year since my diagnosis on Tues. and I go for my test on Wed. Definitely nervous but trying not to think about it. My family, friends and I did the Breast Cancer walk in Central Park last Sunday. What a day and a great feeling. The weather was beautiful and we had such a wonderful day. I feel so ashamed that it took me so long to get involved in this walk it was beautiful and my team raised about $3,000. Not to bad for our first time. Well I can't stay on to long dh is not feeling well and I want to check on him. I hope everyone is enjoying the last few days of summer, here in NY the weather is great. Enjoy you weekend!!
Colleen
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Hello ladies -
in reply to the comment about Decadron, I too had problems with this (depression, insomnia) so I talked to the chemo onc and we cut it right down to 2mg tabs, one tab twice a day, before 6 p.m., for 3 days. IT seems much better, and actually I haven't used all the tabs. A nurse told me it is also for inflammation. I wonder if this is an old drug which is cheap? I have two other types of pukey meds to use, which mainly do the trick. I am doing FEC which isn't too bad and can be used for all sorts of people, node neg or like me, node pos.
Just as a bit of info - have you all come across this great site - I really recommend it. I believe it is supported by the Lance Armstrong Foundation :
IT is comprehensive, it is really easy to understand (pictograms and barcharts) supplies links to studies that make sense to you as an individual, and here is the kicker - it is rather more cheery than adjuvantonline, (if anyone else like me got a trashing form that one....)
My other hint for the day: Within two days of chemo you must eat lavish quantities of chocolate and coffee ice cream. It solves your ills!
xxxxxxx
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Hi Ladies,
With regard to the Decadron debate. As you probably know Decadron is dexamethasone which is a steroid, and the rationale giving it post chemo is that it synergises potently with the other anti-nausea drugs that you are given. The problem about knocking out drugs, is that some of them are preventative as opposed to therapeutic (i.e better at stopping it happen, rather than any good once you have the symptoms). That said I am wary of dexamethasone. It creates a cracking appetite (not good if you are struggling to keep those pounds off) and I too like Virginia have difficulty sleeping (or at least staying asleep), despite only taking one dex tablet in the morning. The other potential side effects are the mood swings, (and in really bad cases, but thankfully rare, steroid pyschosis). The problem of chemo is that your mood is already swinging and you don't need any more help with that. That said the third session of dose-dense A/C when I knocked done the steroid dose I was more naseous, so for the last dose of A/C (4th) I stuck to the prescribed and felt fine . I do have this crazy energy though and only once since starting chemo have I had a sleep lasting 6 hours which was not interupted. Over to Taxol X4 now, yippee? which does not cause nasea, and I guess the daily radiotherapy will knock all my excessive energy into touch..
IDC, grade III, stage I, 0/11 nodes. Dose dense A/C and taxol + radiotherapy
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Mandy: I missed a whole page of posts when I was reading. I am so happy for you. You must be thrilled. I am going on Wed. so I am hoping to get the great results like you did. Enjoy your weekend.
Colleen
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Mary ..... I just wanted to pipe in your question on node involvement and CMF. I was node positive 3 of 34 "flippin' nodes" . My onc's (both primary and 2nd opinion), both said that even though there was node involvement I was grade 1, albeit large tumor ... the other characteristics we're of the "vanilla" variety. I've all along wondered about the recommendations for TC, TAC, AC .. yada yada with much smaller tumors and no node involvement, the onc's I discussed this with said that the grade of tumor determined the care they recommended. Hope this doesn't make your head spin !
To my other CMF friends .... coming down off of the high of another 3-Day/60 mile walk .... an experience that will never get old, although I hope like heck that these life changing events will be nothing but a memory and a cure will be found !!!!!!
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Golfer: did both your oncs recommend CMF? I haven't heard that before about the grade of tumor determining the care. I always thought the stage was the main thing they looked at.
A 3-day/60 mile walk! Where and why? The 10,000 steps I try to do each day seem insignificant in comparison to that. I reckon that I get 30 miles/week when I don't have any lazy days, but you did twice that in just two days!
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Just wondering if any of you ladies regret doing CMF since it took a little longer than a different combo? I'm thinking that the added side effects of some of the other drugs certainly outweigh the added length of CMF.
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I have no regret about taking CMF. The time was worth it.
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For me I am not so sure would do CMF again with what is available now...I know I would stay away from Adriamycin,( CAF, and CEF) which is why I did choose CMF..it was the only alternative at the time..
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From one who went through A/C her with her first bout and then CMF the second-- the CMF was MUCH more tolerable. Yes, it took longer, but the A/C knocked me on my butt for two weeks at a time, whereas the CMF was only about 2-3 days. I was able to function and work throughout the CMF. Could not with A/C.
-julie b
And thanks for all the kind anniversary wishes....I have my 3 month checkup tomorrow (back to these again). Here we go again-- hi there Anxiety!
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Mary, I was relieved to have both opinions be for CMF. The grade is in reference to the aggressiveness of the tumor.
The 60 mile walk is the Breast Cancer 3 Day. Info is at www.the3day.org. It's quite to event !!!0 -
I think I may be back here for advice on CMF. Onc suggested therapy involving anthracyclines but my MUGA scan result was low (EV=52%) so I might not be a good candidate for that. Onc has also ordered Oncotype DX. It would be wonderful if I got a really low score on that and didn't need chemo. But if I do need chemo, CMF sounds like a much better deal than CAF (or FEC).
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I don't regret doing the CMF, but I did gain so much weight during the process that I have wondered whether doing the chemo was a good idea in the long run. I actually asked my onco that on my last visit: since I did CMF to prevent recurrence, am I cancelling out that benefit with the weight gain (which as we know increases risk of recurrence). Her answer was NO, not even close, the chemo is much more important. So, that made me feel better. Now, off to lose some of that weight...............
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