CMF Question
Comments
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Hi Lee: Yes, I had the CMF every two weeks also. There is a name for this paricular protocol (AC followed by CMF), but I'm sorry I can't remember it at the moment. Yes, I did get a Neulasta shots and they were very successful at restoring my white counts and I never had an infection although on just one occasion I ran a very high temperature. My onc wanted to give me six doses of AC (instead of four) but I wasn't tolerating it very well, so it was then she added CMF. I won't say it was easy, but I'm glad now that I did it.
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lee7 - I would second MaryNY and get more opinions if you can from several medical oncologists. At first I was looking at TC or more likely ACT but then my oncotype score came in low and my most admirable med onc (who only treats BC) felt CMF with the pills would be a good choice - I also had 2 nodes +. Deciding is so hard, but with enough info and opinions you will just know what is right for you. Best of luck to you!!!
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Thank you both, I am going to try to find one...fast. My onc is affliated with the biggest most repected cancer center in my area so I've been at a loss how to pick someone else. I think the area hospital has its own cancer program and oncs so I will try there.
Beanius, my onc said the pill CMF was better but women got more nauseous with it. How did you do? Could you still go to work ?
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Lee, is your breast surgeon affiliated with the same cancer center? If not, you might want to see if he/she could give you a referral.
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Yes, the breast surgeon came from there. She is the one who recommended I stay locally when I asked if I should instead be traveling to the main center. She said they do the same protocols here and I'd be saving myself the long drives and much longer wait times for getting appts and tx done there. I'm trying not to miss any work so staying local does help.
I just want to be sure I'm doing the right thing.
On another thread about positive nodes, I just read that they don't test/stain the additional nodes that are removed, only the sentinel ones. I just had my second op to finish removing all my nodes and they took another 20. Does anyone know about how well they get looked at? I mean, why go back and take them out if not to test for micro/macro stuff in them?
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Lee: did you have the oncotype test? Knowing your score on that might help in making a decision on type of chemo. I know there's not a lot of data on oncotype in node-positive women but at least it's another indicator of how agressive the cancer might be.
I presume they test/stain all the nodes removed. As you say, what would the point be otherwise. However, I do know they can miss stuff. My pathology came back as one positive node out of six. But when I first saw the onc that treated me (who is at a major cancer center), she insisted on having her lab review all the path slides again and they found microscopic evidence of cancer in a second node. This didn't change my stage or treatment plan, but it just showed me that so much of this is not a very exact science.
If you got another opinion and it varied from what the current onc is telling you, you can still discuss it with your current onc and modify your treatment plan. I think most oncs are open to discussion.
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MaryNY- Actually I was astonished to find they do NOT stain all the remaining nodes. As my initial SNB was negative in the OR then later came back positive (found a micromet with Fish stain I believe), I had AND and 9 more nodes removed. When my BS said they were negative, I asked if they had been stained. She said they only stain the SNB, it would not be cost effective to stain every single node removed. I actually said "so, even though they tested negative, there could be cancer cells that could only be detected with more accurate stains?" She said that was true. Their theory is that if they remove a bunch of nodes and do the simple pathology, something would show up in one of them. Sort of like looking for a needle in a haystack in my opinion. Knowing this, made me go ahead with chemo, even though statistically I would not benefit from it.
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lee7 - I am happy to tell you I had no nausea and I believe it's due to the anti-nausea drug zofran (ondansetron). I also believe the pill way is a more aggressive treatment then the infusions, but I don't know for sure. The chemo got me down very little and I was able to do most of my normal routine including jogging 2 to 3 miles a day. The worst SE's for me were chemo brain, feeling a bit off balance or not as coordinated, and feeling a bit draggy, I guess that's the fatigue. My oncology nurse encouraged exercise as it battles fatigue and I drank about a gallon of fluids each day, so lotta drink and pee time was needed. I got into a habit of napping for 20 to 30 min or so before going out jogging. I was able to work, drive, clean house, exercise, really everything, but it just took more effort and I went to bed earlier than normal. I did not vomit once. Aside from SE's the worst part of the whole BC thing for me has been emotional. I did/do cry a lot and I think with time that will get better. Part of this is chemopause - moods go up and down.
I had 6 cycles of CMF - each cycle was 28 days (4 weeks). Day 1 and Day 8 I got MF infusions at the cancer center - they gave me zofran and steroids as pre-meds, then two syringe pushes which were the M and F. I almost always came out of there feeling very up from the steroids and we would get lunch. Then Day 1 through Day 14 I took C pills, Then Day 14 through Day 28 I got a break from chemo. Each day taking the C pills I would start the day with my morning with coffee, cereal and zofran (and vitamin D and calcium). At first I took 8 mg zofran but I found I could keep nausea away with half a pill, sometimes I would take and additional 1/4 zofran in the eve. Then at bedtime I took an ativan so I slept really well and got plenty of rest.
It was yucky, but very doable.
About the additional nodes removed, I don't know, they took an additional 15 from mine and the report just said "15 nodes identified; All negative for metastatic carcinoma (0/15)".
I highly recommend the oncotype dx test. At first I read they only do it for 0 positive node cases, but that is not the case...they do it for 1-3 + node cases and it really helps with decision making. I was probably going to get ACT but with such a low oncotype dx score chemo was determined to be not as effective on my type of cancer as hormonal therapy would be. Therefore I went with a lighter chemo and still was not sure I really needed chemo. But since 2 nodes were + I opted for chemo to hopefully kill off cancer cells that may have spread.
Best wishes to you!!!
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Beanius
Thanks for all the info...I'll have a lot of questions for my onc when I see him about getting the good anti-nausea stuff. I also didn't know about the steroids, so I guess there is more than just getting the chemo part of it. I guess I will be starting in Jan. Wish me luck.
And if your Onco was 20....would you have felt you needed a different chemo?MaryNY and Designer Mom,
I talked to the path lab where my nodes went and found out that no..they don't do the same detailed staining on the addtional nodes as they do on the sentinels. The report says it like what Beanius's said..."15 nodes identified, negative for metatastic carcinoma". The lab said that they do look at it microscopically, and if they saw something that looked off they would do more testing but if it looks ok then no...they made it sound like the stains only serve to show micromets and they wouldn't "count' since they already found the positive sentinels....and so the horse is out of the barn. Their phrase, not mine. Anyways, in my case, they clarified one sentinel node was a real postive with a couple tumor cell clusters inside already setting up home there. The other node was only micromets. They are all out now(thankfully) and since I really don't know if there were traces of more cancer in the additional ones, I am going forward with the chemo. Didn't want to...but I feel like I really have to now.
Now wondering..is CMF still the right regimen or will I need to do more.
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Sending all of my sisters in CMF my love for the holidays. May we all celebrate many many more holidays together. This is my third since diagnosis!!!
Hugs
Mandy
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YES, its definately time to start thinking about enjoying the holidays!!
Congrat Mandy! and may we all have many many more!
Thanks all of you for your continued support.
Hugs, Lee
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Lee7 - Yes, get the best anti-nausea, I'm no expert, one onc office was going to have me take compazine as the first line of defense, then zofran, then ativan for breakthrough nausea. The onc I ended up choosing to treat me prescribed zofran as the first line of defense. I never needed the compazine, but did take an ativan at bedtime. Maybe different things work for different people, but I think it's important to find out exactly when to take it, ahead of the chemo drugs, to be most effective.
If my oncotype score had been 20 I would have relied on what my oncologist recommended. I had been all prepared for TC or ACT and had wigs lined up, and all the stuff on the chemo list. I would have gone with her recommendation. When we only had the SNB results and no oncotype score, she was offering TC or ACT. Then with the additional 15 nodes negative and a low oncotype score she offered the possibility of no chemo with recommendation to take chemo, and she offered CMF.
Yes, once the "horse is out of the barn" my understanding is no one knows exactly where it will go. One onc described it like a dandelion, where the cells can really "puff" and go anywhere. The standard procedure is to check the lymph nodes, but cancer cells could travel elsewhere.
As for steroids, they were given to me as pre-meds with zofran. I have read a lot of women didn't like them and asked to not have them. I was one that thought they were helpful so I got them with each infusion.
Anyway, when I found a med oncologist I trusted it was easy to make decisions and go forward, I didn't have that feeling of having to second guess her recommendations.
Mandy - Congratulations on 3 years!!! Fantastic, Yahooooooooo to You!!! That is such good news, thanks for sharing!!!!!
Wishing all my CMF sisters a most wonderful holiday season too!
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Hope everyone has a very Merry Christmas......God Bless each of you this holiday season!
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Hope everyone had a wonderful holiday! Looking forward to New Years now and some pretty fireworks (weather permitting)
Beanius, Thanks again..More great info. I just hope I can hold up as well going through this. Its been two weeks since my node surgery and port placement, and I am still so wiped out. I know most of it is from lack of sleep and just plain worrying about stuff.
I am so thankful this CMF thread is here !!
I posted on the starting chemo Jan 2011 thread and I'm the only one doing CMF. I looked back at a few other "starting chemo.." threads and it's really hard to find folks who got CMF.
Glad all you CMF ladies are posting here. And are telling me this is doable!!! It really helps so much.
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Hi Lee,
I'm glad that you found us! Beanius and some of the other gals have given you wonderful information and I heartily agree with all of them. CMF chemo is indeed doable.......we just don't really want to do it!
I hope everyone had a great holiday. Our Christmas with my son and his family is going to be tomorrow so we aren't done yet. I'm really excited about it because my three little grandsons are at a great age for his magical season.
I'm off to cook up a storm! I hope everyone is having a good day!
Rita
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Thanks Ritajean,
Sounds like you will have a wonderful day today with your family and especially those 3 little boys. My favorite age was right around 5 with the kids, with all the fun and creative projects that would come home from kindergarten. I must have saved their every drawing !
Now, I'm looking forward to my first 2 grandbabies due this spring, 7 wks apart. I'm hoping and praying this coming chemo schedule doesn't keep me from being able to be there for the births and being able to help out. I am thrilled though to have such a positive wonderful thing to look forward to, it really helps.
Hope eveyone else here has many wonderful things to look forward to in 2011!
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Hi Lee....welcome to the club that noone really wants to join but I definitely was so thankful when I found this thread. It was such a blessing to me and the ladies on here are wonderful.
Hope everyone had a very Merry Christmas.....and Rita, I hope you had a wonderful late Christmas with your son and his family
!Happy New Year to each and everyone of you.....
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Thanks Cabmom,
I'm counting on you here. I keep looking over at the 'starting chemo' threads and no one is doing CMF.
I'm sure much of the advice and side effects are probably similar but....I feel a lot better talking with you who have gone through the same regimen. I'll know on Monday what my starting date will be. I am getting sooooo nervous.
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lee- I know you have done your research. Once you make your decision, try not to second guess yourself, it can make you nuts (I know). Just keep looking forward, not backward. The CMF is very doable. You are correct, as it is an older, tried and true chemo, many doctors no longer use it. That does not mean it is not perfectly apropriate for some cancers. When my Onc told me it was not the newest chemo, my response was "great, it has been tested longer for side effects, I don't want to be a beta-tester". By the way, it is still used by both Sloan Kettering and Dana Farber, two of the top cancer hospitals.
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Designer Mom,
My eyes are so tired from all the reading I've been trying to do. I think I'm due for a new set of glasses! Good to hear Dana Farber's name. I grew up in Boston and my mom and cousin were both patients there.
I think what I need to find out next is what extra goes along with the CMF and what can I avoid or maybe cut down on if I don't want to take so much. I'm trying to put as few chemicals into my body. Anyone know if there is a 'standard.. this is what you get' list of meds?
Thanks!!
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lee- Typically they will give you "premeds" with each infusion. In my case it was Kytril for nausea and one steroid pill. My Onc said I could try it without the steroids after the 1st infusion. As I weathered things so well, I didn't want to rock the boat and stuck with one steroid per infusion. I have heard from other ladies that you do NOT want to cut back on the anti nausea drugs. You want to take them as prescribed. Once you start feeling nauseous, it's hard to knock it down. You need to stay ahead of it. In my case I got 2 Kytril at infusion, then took Zofran for two days after the infusion day. Then I had about 18 days of no meds (other than fiber pills) till the next infusion. Good luck!
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lee7 - my cmf was done differently than designermom's. I think she had her C as part of her infusions, i had to take my C at home daily and had the M and F infused. I was given a zofran infusion prior to the other drugs and took zofran as needed after. I turned down steroids after the first round and didn't regret it or note anything different. I think the most important thing is to stay on top of any potential nausea but also on top of CONSTIPATION, a side effect of chemo and zofran. Constipation can cause nausea so it is a catch 22. Learn to use Senokot, prunes or whatever works for you constantly. You can do this.
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Hi Everyone!
Just want to stop in and wish you all a new year of health, happiness and peace.
HAPPY NEW YEAR!
Love, Mandy
PS Lee7: You will find plenty of support from the old-timers on this thread so don't hesitate to ask us any and all questions. One thing I did before my first chemo was to get everything that I might need into the house--so that if I did not feel up to it, I would not need to go out for ant-acids, or stool softener or anti diarrhea meds. I also brought in a few simple microwavable meals so I would not have to cook if I did not feel up to it. Everyone is different and everyone will have different side effects. We can all offer you suggestions on how to handle them. For me, zofran did not prevent nausea at all. I finally used a combination of Emend and Kytril and had good success with beating the nausea. So if whatever your onc gives you at first is not working, just call and say you need something else.
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Once again, thanks to all of you here who have helped me. Chemo done (I told you before) and I just finished rads yesterday. I feel great and I'm looking forward to 2011! Happy New Year to all of my CMF friends and have a fantastic New Year!!!
lee - if you have to get CMF, don't sweat it, it's doable and goes fast. The worst is the anticipation and for me half way through I got depressed, but then it just went so fast. I did like Mandy mentioned and got about everything on the chemo list ahead of time, got my teeth cleaned, stocked a bunch of easy prep meals, etc. Mostly I was able to do my regular routine. Food got kind of yucky, so I ate a lot of nuts and granola bars, which tasted good all the way through. Tried to keep nutritious calories up, lots of protein and tons of fluids. I ran almost 2 miles almost every day and drank a gallon of water/crystal light/7-up/juice/ herbal tea, etc. Anyway, don't be afraid...easy for me to say...I remember how terrified I was, but it gets better. Wishing you all the best!!!
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Beanius- Whoo hoo! You did it! I am SO celebrating your finish! Let's make this new year our best ever! It's going to be 1-1-11, how cool is that! Thanks for the champagne!
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I'm taking lots of notes here and I'm feeling better about what to do and what to ask for. You all have such good advice and I really do appreciate all the positive support.
Congratulations Beanius, what great timing, huh!! You must be really ready to celebrate the New Year tonight. I haven't had a drop since my dx, but with chemo around the corner I think tonight might deserve at least 1 delicious glass of (I'd better make it red, I guess) wine to toast in 2011.
Everyone, have a wonderful New Year's!!
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DesignerMom - thank you for the congrats and well wishes. I thought it was all going to be so much worse, but to tell the truth I feel really good and haven't had much fatigue. Happy 1-1-11 to you!!! Cheers!!
Lee - yes indeed, on chemo I couldn't stand the tast of wine but that's over and I will enjoy a bit of the ol bubbly tonight for sure. I kinda pushed to get thru by yesterday. I asked both Med Onc and Rad Onc if I could double up the last chemo cycle which they thought was okay, so that saved me some time. Then I had four sessions of rads over four weeks where I went in twice a day. Yesterday was my last double. This was all dependent upon my skin and how I felt and I was lucky my skin held up and my energy has been good. Now that all is over, I think the worry is lessening and I feel darn good! From dx to end of tx was a solid 9 months for me so it's nice to have it in the past. I will say it has gone very fast though so I'm sure you will jump through this in a jiffy too and we'll do the happy dance for you every step of the way and party big at the end!!!
Have a Happy (and safe) New Year!!
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Happy New Year to all my special CMF friends! I wish you all a happy, healthy, new year, filled with good experiences, hopes, and (hopefully) the cure. I think we are about due for that to arrive and what a blessing it will be.
YEA BEANIUS! What a wonderful way to start the new year! Now you can concentrate on finding the new you!
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Hey everyone,
I saw my onc today, had the bloodwork (first time using the port and it was ok), and I got my chemo start date. Next Monday, the 10th.
I think its just starting to sink in that I am really going to be doing this. The onc nurse showed me around the chemo room, and pointed out the important stuff like the ice machine, soda machine, and the restroom! One thing the onc said was to stop taking B vitamins and folic acid, that they work against the M & F part of the tx. Anyone have or know of a list of what not to do or not to eat? I blanked out on some of the stuff he was saying.
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Hi Lee,
My onc didn't have me take any vitamins of any kind during chemo. I'm sure each oncologist has his or her own opinion on the vitamin issue, but I got along just fine without any for those treatment months. Now I'm back to taking some vitamins.
As far as other foods go....I think anyting is fine if it tastes good to you. The nurse did tell me not to eat my favorite foods the first few days after treatment. I guess if you happen to do that and you get sick, you can get a lasting adversion to that food. I'd sure hate to end up hating pizza!
Water is a must. After your first treatment, drink lots of water. That will help flush the chemicals through your body faster. I also sucked on popsicles and drank Crystal Light when the water didn't taste good to me. I also sucked on ice chips during the treatment to ward off the mouth sores.
Everyone is different and you will quickly learn what works best for you. You can do this. The unknown is the scary part about all of this. After Monday, you'll probably be saying, "Hey, this isn't so bad after all!" Hugs to you.
Rita
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