CMF Question
Comments
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Hi Lindy: I think you should get another opinion for your own peace of mind.
My Oncotype score was 18 and the onc who ordered the test said she would leave the choice to me whether to have chemo or not. I felt I didn't know enough to make the right decision. I also had two positive nodes. I went for another opinion. That onc wouldn't even cosider omitting chemo with that Oncotype score and positive nodes. As she pointed out there is scant data on the relationship of Oncotype score and the effectiveness of chemo in node negative women. I had AC x 4. Initially she considered giving me six rounds of AC, but I was finding it difficult, so she followed it up with CMF x 4 for some extra insurance. She never considered giving me CMF only. It was going to be either TC or AC for me. TC was ruled out because I had some existing neuropathy that might have been worsened by the Taxol. Even with AC, she was concerned about the Adriamycin as I had a low score on the MUGA scan. It's all about weighing risk against benefit.
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Lindy323- Considering that Sloan Kettering and Dana Farber still use CMF, I find it disconcerting that your Onc "flat out refuses" to use it. From the research I have done, it most definitely has fewer side effects than TC (possible permanent neuropathy and hair loss). My Onc who initially wanted me on TC agreed to CMF and agreed that the SE would be fewer, though the regimen would be longer. I don't know where you live, but I would certainly consider another, more objective opinion.
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Hi Ladies,
Yesterday was my fist CMF treatment and the treatment itself was pretty uneventful, 1 down 7 to go.
After chemo they sent me for an ultrasound as I found a fatty deposit in my neck that was enlarged. Its been there forever but recently got inflamed. The Radiologist along with my surgeon believe it to be Lipoma which is a tumor composed of fatty tissue. So now Im leaving work during lunch to get an MRI to make sure! Should know results by Monday or Tuesday.
Lindy323, we all need to come to a decision that we are comfortable with however it is somewhat concerning that your Onc refused to use it. I am at Sloan and although my onc score was 15 my Oncologist offered me all the options and left the decision to me. I chose the CMF regimen along with 21 days of rads and 5 years of Tamoxifen so I would have my own piece of mind.
So far, and granted it has only been a day since treatment, I am back at work. After treatment I drove home an hour and half in rush hour traffic and went for an hour walk afterwards. Is it going to get worse, maybe, but I'm ready. If you think that CMF is right for you then find an Oncologist that will administer this plan. No regrets and best of luck to you.
Lots of love to everyone!
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yjk..........YEA! One down! So glad you're doing well! Just mark those treatments off on your calendar and you'll be through before you know it!
Hugs!
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Lindy 323 - I got 3 oncology opinions and will be driving 3 hrs each way to the place I felt was best qualified and willing to spend the time to get to know my case, me and my husband and our particular situation. I really felt that our oncologist listened to us and thought about the medicine as applied to us. It seems like it all comes clear with more information to process, so I'm all for more opinions.
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Janina
Congratulations and hoping you can enjoy the summer!!
Mom2acat
I had my 4th treatment last Wednesday and since my second - third treatment have been losing hair. i have very thick hair but to me it is noticeable especially around where I part. it is also all over.... I also noticed the texture is different and it doesn't style as easy as it use to...
Judy1973
Congratulations on finishing and best of luck with the rads...
Ladies,
My last post was that I was able to have my fourth treatment and believe it or not the se's were much better this time. Some queazy but gone quicker than previous treatments. Not certain why, I know I am really watching the dairy the first few days after treatment and eating a lot of fresh fruits....
Unfortunately I has a little fall on Saturday and fractured a bone in my right foot. I stepped up on a curb, my ankle twisted and i hit the ground. Went to a foot surgeon on Monday and he put me in a hard cast from above my toes to a little below the knee... He wants to do as much as possible to prevent me from needing surgery.... The pain has subsided and I am trying to figure out how to get around. My last day of school/teaching was Friday so I can elevate and get as much rest as possible. This afternoon I went to a medical supply store to rent a knee walker. Allows me to get around without crutches... The crutches are a strain on my underarm area and I was getting very concerned about irritating my lymph nodes and surgical area. I was starting to feel the cording (tight ligament in arm and underarm) again so I think the knee walker is a great alternative... I go back for a re-check and to take xrays on July 22 and hopefully will replace the hard cast with something that gives me a little more mobility. Trying the best possible to keep my spirits up, myself healthy and figure out how to pass the time without being able to drive!! Hope everyone has a wonderful weekend and thanks so much for all of your support!! I love this sight!!
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OH NO, chanellygirl............a broken bone in your foot is NOT what you needed..............now or ever!!! What do you teach? I taught middle school and JH science for 33 years!
So glad the side effects were less for you this time! YEA!
Rita
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Hello ladies......I'm in desperate need of your support. Just got back from working out and while there someone ask about my arm sleeve (that I now wear for Stage 1 Lymphedema) so of course my breast cancer came up.....she proceeded to tell me about two of her friends that made in 3 and 5 years. I know all of us think of the "what if's" but know that we're doing all we can to be okay......anyway, it's really upset me for some reason. I don't think people realize the fear that all of us live with everyday. We're going to be fine, right? How do I not let these individuals do this to me all the time? I know she didn't mean to do anything wrong but.......gosh, how can people not understand that I don't need or want to hear that kind of thing? Anyway, I know that statistics are better than that but it really gets to me, when I start to think about my little boy and the what if's.....I guess, I'm asking for advice from you guys on how to deal with it better. I thought I was doing awesome and then this......don't know why but it's just rattled me beyond words.....partly because one of the ladies she was referring to was my age when she found out but just not sure why it's shaken me so badly.
Sorry for being a downer.......but thanks for listening and any advice that anyone would like to give......
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cabmom- Oh my! These are the people that are referred to as "cancer idiots" in a fun book I am reading called "Busting Loose" (by Cheryl Swnson). She explains, and I believe, that these insensitive comments stem from THEIR fears. I have had people ask if I thought I got cancer because I underwent infertility treatments. One friend said someone said it was because she dyed her hair! Cabmom, you just keep your eye on the prize! You are going to dance with your beautiful son at his wedding....and then some! I have an 11 year old and I know I am going to beat this beast. It helps me to know the overwhelming odds that we will live long and healthy lives. Try to surround yourself with the positive, optimistic friends and supporters. I know we will all run into these dolts from time to time and it can surely shake our resolve. I know you will get back up in your saddle and head in the right direction again soon. I'll keep you and your son in my prayers.
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chanellygirl - So sorry to hear of your fall and injury...that's all you need with everything else going on...best wishes for a speedy recovery...my heart goes out to you...it's been hard to drive (my car's a manual trans) after axillary dissection on the right (dominant & shifter) side...how are you getting around?
cabmom -It's hard to believe someone would think it was okay to say that to you...unbelievably insensitive, of course it would hit a nerve. You are right though, the stats are excellent. I think of those kind of people as "toxic" to me and I steer clear.
DesignerMom - You always have a great tag, "cancer idiots" - that's a good one! We do have long, healthy lives ahead.
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Any of you CMF veterans have low Oncotype scores? Mine was 16. In talking to the Oncotype people, they clarified that the chemo that was determined to have no effect on low score women was CMF/MF. I guess this is why my Onc was reluctant to use CMF with me. However, she could not say that her other choice would have been better (no studies). I had my first CMF and, in spite of this info, STILL feel CMF is the right choice. Am I being illogical? Sure wish there was more evidence.
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Oh cabmom...............I know how you're feeling right now! We hear about all the gals that have recurrences and deaths related to cancer and it eats away at us. First because we feel so bad about them and then because we're scared for ourselves. But, we don't always hear about all those survivors out there of many years. My aunt had breast cancer when she was in her 40's and she's turning 83 this year. My best teaching friend is a 14 year survivor and our own SoCalLisa on here is a long term survivor. There are many long term survivors who have left these boards because they no longer need the support and they prefer to just go about their lives and forget bc until those check-ups roll around, so we don't continue to hear about their success at beating the beast. If you've EVER walked in one of the bc walks (like the Susan G. Koman walk), you'd be amazed at all the survivors, many of whom are long term survivors. The pink shirts go on for miles and it's a very emotional walk. Yes, cancer is unpredicatable. That's why I get nervous and edgy as my check-ups roll around and I have another one of those next week, but our odds are much better now than in years past and we've done everything we could have done to destroy the beast. We are winners! I think this experience helps us appreciate each and every day and perhaps we do better by going one day or one week at a time as our survivor years add up for us. Those who have dealt with the uncertainty of the disease tells me gets better as the years go by. Is that right, Lisa????
Hugs to you. Keep a positive attitude. Hey, we've been there and done that and we're not going back!
Rita
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Cabmom, I'm so sorry about the idiot things people say to us, and the way they can sink our fragile ships in minutes!
Wearing lymphedema garments seems to be a magnet for these kinds of remarks, because people ask us about them, and how can you explain it without saying, "I HAD BREAST CANCER!!!" loud and clear? Then, because they're startled and embarrassed to have brought it up, they say very stupid things.I don't have any solution for the pain those very stupid things can cause us but, just for fun, you might enjoy reading what other women with lymphedema say about their garments when people ask them. Here's a thread from the "Lymphedema After Surgery" board that you might even get some ideas from. The thread is called, "I Was Attacked by a Shark!", and it's here:
http://community.breastcancer.org/forum/64/topic/752612?page=2#idx_49
Sorry I can't add a link directly to it, because they don't seem to work on this site, but if you copy and paste it into your browser window it should take you there.
Be well, cabmom!
Binney0 -
Ritajean,
Thanks so much for your good wishes...I just finished my 7th year as a middle school learning specialist/special education teacher... I co- teach with an english teacher and support small groups of students in the learning center. Before teaching I was in financial services but decided at about 39/40 o go back to grad. school for a teaching degree.. never second guessed what I was doing and right now would not trade it for anything. I adore my colleagues and the administrators are so unbelievably supportive!!
cabmom
I am speechless and so sorry you had to experience such negative words. The statistics are great for us and like Ritajean I also know a number of people who are long term survivors. My cousin was diagnosed in her early 40's and is a 14/15 year survivor as well as other friends in my building who tell me they had bc many many years ago.... I also agree with designermom about individuals who make negative comments having many fears and we need to find strength to stay away from people with negative energy.... I hope you are able t ofocus on all the positive in your life and have a good weekend!! I am sending you lots of positive energy
Beanius
Thank you for your sweet words... This week i am resting a lot and relying on friends. The not being able to come and go on my own is hard but I keep telling myself temporary. I live in an apartment building with a swimming pool and gym so after the next few days will be able to sit outside and possibly use the gym for some upperbody and core. No cardio or weight bearing on my foot.
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Designer Mom: My oncotype was 15. My onc felt that the study with node positive women was so small that it could not be relied on. And since there are no studies with oncotype and other chemos, there is no reason to believe they would be more effective than CMF. So I went with CMF (and this was after consulting with another onc who was in agreement about the CMF).
Channellygirl: What a shame about your foot! Wishing you speedy healing. After my 4th tx, I had my most major hair loss....it looked like a mouse was in the shower drain but it was my hair, I went into a panic. But in the end, the hair loss slowed down. I lost less after my next treatment. I don't think that anyone noticed the hair loss except me.
Cabmom: I think Binney is right that these women are embarrassed; I think that Designer Mom is right and they are cancer idiots. But I also think they are very insensitive, selfish people and I don't make excuses for them.
Anyway, I hope all the gals in treatment will have a good weekend without SE and I hope all the gals who finished treatment are doing just fine!
Cyber hugs.
Mandy
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Designer Mom: My oncotype was 15. My onc felt that the study with node positive women was so small that it could not be relied on. And since there are no studies with oncotype and other chemos, there is no reason to believe they would be more effective than CMF. So I went with CMF (and this was after consulting with another onc who was in agreement about the CMF).
Channellygirl: What a shame about your foot! Wishing you speedy healing. After my 4th tx, I had my most major hair loss....it looked like a mouse was in the shower drain but it was my hair, I went into a panic. But in the end, the hair loss slowed down. I lost less after my next treatment. I don't think that anyone noticed the hair loss except me.
Cabmom: I think Binney is right that these women are embarrassed; I think that Designer Mom is right and they are cancer idiots. But I also think they are very insensitive, selfish people and I don't make excuses for them. You will not only go to your sons college graduation, but you will dance at his wedding and enjoy a nice old age sitting on the front porch in your rocking chair or traveling the world or doing whatever you want. Don't let someone that selfish get you down.
Anyway, I hope all the gals in treatment will have a good weekend without SE and I hope all the gals who finished treatment are doing just fine!
Cyber hugs.
Mandy
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Ladies....thank you all so much for your support. I'm a little embarrassed that it got to me so badly but it did and I will have to just become stronger against these types of people. Sadly, they're out there......but thanks to each of you for your kind words of encouragement. My faith is strong and God will take care of me, I shouldn't doubt him but sometimes it's just hard to stay strong all the time. I'm very lucky to have such great ladies on here to talk to........
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Hi everyone,
What a great thread this is. As of yesterday, I have a new oncologist and, instead of TC x 4, I'll be starting CMF x 6 this week. I'm hoping that this regimen, while it will take longer, will be gentler on my body and, of course, easier on my hair. A lot of you seem to have done pretty well with your hair and weathered CMF side effects very well. Very encouraging. I will be a frequent visitor and will draw stength from all of you.
Best,
cmz
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Hello again,
Are any of you doing anything special to protect your hair through your CMF treatments? Less washing? Special shampoo? Trying not to get hot? No heat styling/coloring? Anything else?
THX MUCH,
CMZ
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Hi CMZ!
Yes I did do things differently in order to protect my hair and while I did have some thinning, I was the only one who noticed it. Ritajean will come on later with the shampoo she suggested. I can't remember what it was, but I did use it faithfully. I reduced my hair washing --- I usually wash my hair every day and while I was on chemo I washed only every second or third day. I did not brush it or do anything to pull on it. Since I don't color my hair that was not an issue. Basically I was very gentle with my hair and for me that worked.
Mandy
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CMZ, Hi and welcome! Like Mandy, I did have some thinning as well but only I could tell. I also didn't wash my hair everyday and before chemo always did.....usually every other though. I used the shampoo that the ladies on here suggested and that was Nixoin (I think that's right----but the other ladies will verify). I do highlight my hair but didn't do anything like that while on chemo and I waited about 6 weeks after to start back. I also was careful with curling irons and hot air brushes. Basically, I treated my hair very kindly through chemo.
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Thanks cabmom and Mandy. I'm also wondering if Neulasta shots are necessary after every treatment or if it depends on your counts. Can you tell that I'm a stressed out bundle of nerves?
Thanks so much for your help.
cmz
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cmz, it's okay we were all stressed out and it's normal to be. I was lucky and never need the Neulasta shots and hopefully you won't either. I just tried to eat really well and that part went great for me. I know there are some ladies on here that have had to get them but I don't think it was after every treatment. It really is a doable treatment.....just be kind to your body through it. Get lots of rest, drink tons and tons of water/fluid, don't over do your hair and you'll be thankful at the end that you went through it. Not saying it's fun or anything like that but to me, it was well worth the pain that came with it!!! The peace of mind of knowing that you've done everything humanly possible to keep it from coming back means a great deal. You're gonna do great and the ladies on this thread are incredible support. They made my journey so much easier, with all the support and knowledge. Any questions or concerns, just put it out there and someone will chime in.....Good luck and it will be over before you know it. Let us know when your treatment will be so all of us can be sending you positive thoughts and prayers!
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Hi CMZ
I had 8 tx of CMF and did not require a neulasta shot during any of them. I never asked my onc for my blood counts so I don't know exactly what they were, but each time I was told that they were fine. While some women on CMF do end up with a Neulasta shot, not all of us do. I am a vegetarian and my good counts surprised my meat eating onc (she said so). So I was lucky about counts.
I just checked my bottle of the special shampoo and it was what cabmom said only it is spelled Nioxin. I ordered mine from Amazon and while it was expensive, one bottle of the shampoo and one bottle of the scalp treatment lasted for my entire 6 months of chemo (the bottle is huge).
Don't worry too much and things will fall into place. CMF is definitely a doable chemo.
Hugs to all my CMF sisters.
Mandy
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CMZ, I finished CMF x8 on June 7th and just seemed to shed a bit more than normal, but my hair looks exactly the same as it did back in January before I started. I really did nothing different. I never wash my hair every day and I'm lucky to work from home, so I also never dry my hair. I don't think I dried it even once until after my treatments were finally over. I used to color my hair A LOT (kinda-of a running joke with my friends about what my real color even is anymore), so I was REALLY worried what chemo would do to it, although it was in good shape (considering my constant abuse). I didn't color it at all during chemo for fear of the color results and hair loss and I think I'll actually keep my real hair color now. I've read you can't color it for another 6 months, because of the reaction it may have. I never used the special shampoo...just used my usual (Garnier Fructis Moisture Works). I'm not sure you need to even waste the money on that, but everyone's hair is different, so it's hard to say. Oh, and I never had to have the Neulasta shot either. Counts stayed just fine and believe me...I am not a great eater...not good with the veggies and fruit...really not much of an eater at all. I had to have Decadron from my 3rd chemo on, because I experienced some chest tighness and forced coughing after my first 2 treatments, so it was a whole new experience for me to be REALLY hungry from the steroid. I didn't change my eating habits (except for probably eating a bit more from the steroids), so I think if you were a generally healthy person before your diagnosis, you'll be fine keeping to your normal eating routine during chemo.
Best of luck to you!!!
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Hi Ladies,
Hope everyone is doing well.
For those of you finished with CMF, I was wondering, when did you notice the hair shedding stopped and when did regrowth occur?
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Just wanted to say THANK YOU for the great info I've been reading. Also BIG CONGRATULATIONS to those of you who have finished.
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cmz....I sent you a PM but the other gals have given you great advice!
I did have to have one Neulasta shot. My counts went down between my 5th and 6th chemo. I was scared witless about having to have the shot and heard nightmare stories about the bone aches and other side effects associated with it. However, I had no side effects at all. I kept waiting for something to happen after the shot and .............just nothing. Hopefully you won't have to get one so don't even worry about it yet.
You're in good hands with the gals on this thread! They're a super bunch of gals!
Rita
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ritajean- I just want to say thank you for all your cheerleading. Knowing you are a veteran CMFer, your advice and info mean so much to newbies like me. Keep it coming!
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I hope everyone had a nice weekend. I took my girls for a horse back ride with my mother-in-law on Saturday. They had a great time, but it was up and down narrow inclines and I didn't care much for all the bumping and jostling.
I am 1/2 way through my 6 months of CMF and have started having more side effects. I was wondering if any of you out there experienced similar things. For the past 3 or 4 weeks, I've had bloody mucous every time I blow my nose. In addition, last week I developed a sore throat which is still there, but when my onc looked he said everything looked fine. Niether of these are too problematic, but I'm curious if anyone else had them.
Colleen
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