CMF Question
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Hi everyone. So I heard from my local oncologist today in Philly. She said that cmf is a very old protocol and that pretty much only Sloan uses it. She said that Sloan tells people who need chemo to go in act or tc and those who don't get it get cmf but pretty much everyone gets chemo that goes to Sloan. She said that she would still be willing to administer it if that's what i want but that she firmly disagrees. She also said that the oncotype was researched based in patients receiving cmf and so he research actually shows that it doesn't work for people with my score- I was a 16.
She was also confused by the recommendation to get it every 2 weeks for 8 times and said that the side effects really are no less than ct which is what she said she will give me if I want chemo.
I am not sure what to do at this point. Should I get a 3rd opinion or is Sloan really the only ones who still use cmf? I am pretty close to my 8 weeks after surgery and need to get this going if I am going to do it!
Any thoughts?
Thanks.
Jsrose0 -
So interesting! I have no clue what is going on.
Even my own onco has told me contradictory things. What's a person to believe?
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Wait a minute, Rita got cMf and she lives in southern Illinois. As well as Margaret in San Francisco.
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@jsrose, Sloan are not the only ones using CMF. I had it at Group Health Cooperative in Seattle. My oncologist also recommended TC as a first choice, but I asked for other options due to the possibility of permanent baldness with taxotere. You can find more about that in other threads here on bco.CMF is slightly less effective than TC (about two percentage points difference in recurrence risk).
In your shoes, I would ask for an explanation of what your onc said about the research results and CMF. Your oncotype score is in the low range (although close to the intermediate "gray area"), which as I understand it does not mean that chemotherapy doesn't work on you, but that the risk likely outweighs the benefit. However, because your have LVI and are BRCA positive, the risk/benefit balance may be different in your case. You might want to put your diagnostic data in the cancermath calculator and see what the statistics are in people with your specific diagnosis and genetic profile. Or has one of the oncs you consulted already done that for you with Adjuvant!online?
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Curveball- thanks so much and yes you are right- bc of the lvi, age (40), grade3 and brca, the oncologist at Sloan just feels that I have too many factors in the negative column and thinks we should just give the cmf a shot. I think if the Taylor x studies were complete they would feel more confident that the oncotype score trumps all but also the research data on lvi seems relatively incomplete. I know I am erring on the side if caution but its what will give me some peace of mind in this uncertain cancer world.
It's nice to know other people are getting cmf. Are they side effects really less severe than other protocols.
Thanks.
Jsrose0 -
Did you have your surgery at Sloan?
Which onco did you see?
I found CMF nowhere near as bad as I anticipated. Forget the bad movies!
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jsrose: different centers seem to have their own way of treating. MSK does use CMF but it does use many other chemos so it is not bound to only one chemo. I am certain the doctor there was using her knowledge in her recommendation. And your local hospital seems to have a different view and that is her viewpoint too.
If you would feel best with a third opinion, get one. Or if you like one center and one doctor better than the other, go there. Don't look back and whatever you decide is the right decision for you.
As Ritajean has said, you will feel a sense of relief when you finally make the decision. And let us know if any of us can be of help to you at this time.
Hugs
Mandy
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jrose. I am getting CMF in ct. If my doctor has his way I would be doing the ACT. But only because they give it to everyone. Its like a blanket. They can cover their butts, knowing you got the toughest treatment there is. But there were numerous factors that I didn't feel it was right for me. If you go on cancermath.net there is barely any difference. My doctor was very on board with doing cmf, as long as I did some chemotherapy he was agreeable. For people with intermediate cancers, they cannot guarantee that ACT will benefit you more than CMF. As my doctor told me they give that ACT to 100 women. It really only benefits 10. More research needs to be done on early stage cancers. He's absolutely fine with the CMF and so I am. You have to do what is good for you.
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PS. I had one lymph node involvement and my oncotype was 19. CMF has been very tolerable #6 out of 8 is tomorrow!
I go every 2 weeks for 16 weeks. 8 treatments total. I have a port and it's not as bad as you would think. :-)0 -
Jrose, im in Australia and my onc said that CMF is slowly coming back into use, its effective and tolerable.
I had Taxotere also and believe me CMF was a walk in the park comparing both tx's!
I guess every centre, doctor, state & country have different ways of administering chemo and their way of doing things...so who has the right answer?
Good Luck with your tx choice.0 -
Robin...almost there....bet you're getting excited ! :-)
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I did the CMF and I am in Maine. My doc wanted me to do the standard ACT also, but I did the research like others and the long term survival rates were pretty similar. My onco score was only a 6 with 17 positive nodes. All the docs were shocked at the score. The side effects from the CMF were very tolerable. I am almost 6 months PFC and I am opening a bakery with a friend next month, so you do get your life back.(it will never be the same normal, but I do have a new perspective) I am not going to let BC stand in my way. My neighbor had cmf over 20 yrs ago and she is doing fine.
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Traii. I can't wait. I seriously can't wait Til this
Cmf done. Even though its tolerable. I'm sooo looking forward to putting it behind me you get radiation after?0 -
Robin...i know the 'yehhh its over feeling' you are almost there
No rads for me. Thats why I had Taxotere also. I am here because rads 17years ago did this damn BC thing to me. I cant be radiated on again in the same area.
Are you getting rads?
Dianarose congrats on the bakery. Fantastic news. Its so true...we need to get on with life and not let BC bring us down. New perspective new ambitions new look on life but we got to live and pray we too are going to be like your neighbour...20years good on her0 -
I had CMF and I hope its as good as other forms of chemo. I'm not sure that survival statistics are the best way to go though since it's people who are less likely to get recurrences that get CMF, generally. So if rates of recurrence are the same for ACT and CMF but ACT patients have more agressive cancers... See what I mean?
I just pray we all do well, whatever we have/had!
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Timbuktu - I didn't have surgery at Sloan. I had it in Philly and still have tissue expanders in so that will be on hold during chemo.
Great responses from so many. It is so interesting to hear everyone's experience. We are trying to get a third opinion as quickly as possible and then we will decide! Thx all!
Jsrose0 -
Rose, I noticed you said you had the BRCA..I am sending you a pm about new info..
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They didn't have the onco dx test when I was dx'd...they wanted to do CAF but I insisted
on CMF because of the possible heart toxicity of the andriamycin..so I chose the CMF even
if it was longer..but if there is any way to avoid chemo, I would not do it...
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Jsrose, thx for bring out the question. I have same concern to make the decision between CMF and AC. The reason my onco suggests to have ct is base on my tumor size is big ( total size of 8.6cm) not the onco DX score. As matter of fact, I don't have the onco DX test because my onco said she only use for the stage one patient and I'm in stage II. She was giving the options for either 4 of AC or 8 of CMF. it also can start with one AC then switch to CMF. On the other hand, my surgon suggests the AC only to prevent the reoccorance. i done my mastectomy on Jan. and schedule to start the ct on 5/8. If you are able to get the 3 rd opinion, can you please let me know? Thank much!!!
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Neo-adjuvant and post-adjuvant chemo
After I got the disappointing news that my chemo didn't decrease my tumors' sizes enough, and after I had double mastectomies with immed to implant recon, my surgeon brought up rads after he had ruled them out earlier (and then my onc never meyntioned rads). OR I WOULDN'T have had immed recon (forgive me if. You've read this on other forums, I went into a week of hellish emotions, almost as bad as when I was first diagnosed.)
I'm gearing up for the appt with my MO and I, for the first time, discover that some women get chemo, then get surgery, and then immediately almost get a shorter number of infusions after, often of a different type than the original neo chemo.
As much as I struggled with SEs through the first 4 month round of ACT chemo (many of you kindly suffered thru my rants on this forum) especially AC, I'm going to ask my MO about more chemo after surgery rather than rads. But while I'm waiting to see him, I would sure like some feedback!
Do any of you know why the chemo-surgery-chemo is prescribed usually and whether there might be some equivalency between that and having rads after mastectomy?
I had my neoadjuvant chemo because I am triple neg. I had the immed recon because my "team" never considered that I was a candidate for rads.
Thanks in advance,
Peggy0 -
That's a new one for me. Only stage 1? I was stage 2 and every dr I saw said no chemo, just hormonal therapy.
It didn't make sense to me. But this is the first time I've heard of a dr saying it didn't make sense!
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Traii is that you in the picture? You're gorgeous. :-) Yes rads are next and #6 was done today! 2 more to go. I am so anxious to be done with the chemo part. I know rads aren't fun but they are more tolerable i hear than the chemo. ;-) I'm ready to be done with this!
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Yeh 2 more to go
soon enough rads will be done and you can move right along
Yes thats my profile pic....at my brothers wedding 1 year ago!
Oh to havey hair that colour again...lol its coming in dark brown..but hey hair is hair right!0 -
Hair is definitely hair. Traii if you are on facebook, pm me we can be friends. :-) I'm friends with softness and Rita :-)
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I hit the halfway mark today!!!! 4 more to go. Happy but still have until mid July. Uuurrgghh, but its still progress
Lets all go kick some cancers' ass ladies!!!0 -
Softness1 rocks! Halfway done! Whoohoo! :-) Kicking Cancer's Ass!
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Congrats on the half way mark softness whoo hoo
July will be here before you know it 0 -
So I went for my "chemo" class today. It looks like I will be starting this Wednesday! I am terrified and honestly don't know if I am making the right decision or not. The nurse practitioner told me that on cmf many people have a low lying nausea all the time- more so than other regimens. Is this true for many people! She also told me to be prepared to lose my hair!
Also did many people the neulesta shot? They want me to give it to myself!
I just wish there was more understood about LVI-- my third opinion basically aggrees with my 1st opinion -no chemo but they also don't say anything about LVI. Sloan is the only one who is factoring it into my equation!
I guess I can still change my mind before Wednesday.
Any tips to get thru tx would be great. There are over 200 pages to read thru in this thread!
Jsrose0 -
@jsrose14, I may have gotten a different "recipe" of CMF than you will be, but although I did lose some hair it was not enough that other people noticed. I did not need a wig. I think one of the other ladies on this thread did have enough thinning to need a wig during her treatment. I did have low-level gastric discomfort for much of the regimen. It was more bloating and gas than actual nausea--I never felt as if I was going to throw up. But it was uncomfortable. I didn't want to take a bunch of additional medications, but I did eventually give in and take simethicone, which is an over-the-counter gas remedy. That helped some, but didn't completely eliminate the discomfort. My white counts never got low enough for me to need Neulasta, but I think some of the other ladies on the thread did have those shots.
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Jsrose14 the LVI is the main reason for me doing chemo. Although I had 0 node involve that LVI is basically another cancer escape route via the lymphatic system. The CMF regime isn't horrible. I had chemo yesterday and in ok. Just keep on top of the anti nauseous meds cuz it makes this doable. My hair has gotten longer but thinner. No one notices. But I do. I'm at the halfway mark & my nails are growing etc. I have infusions only. No pills. I believe that's milder on hair thinning.
Today I took it slow. A little tingling in my legs. But other than relaxing and mild wooziness I'm really doing great. It really hasn't been as bad as I thought.
Good luck on ur decision0
