Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

CMF Question

1…2829313334…282

Comments

  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007

    Melanie,

    I met with my onc. on Tuesday. My Oncotype score was 28! That was in the middle range, and I think it was high! My onc. says that I have an 18% chance for recurrence, and that sounds too high too me! But, chemo only gives me a 4% benefit. So, at first, I told him NO! to chemo. But, now that I have had a chance to think it over, maybe I should just go ahead and take the chemo plunge! At least this way, I can say that I did everything I could to prevent recurrence.

    I have another appt. with my onc on Aug. 17th, and my dh says that I should think it over and tell him then that I have changed my mind, and I think I should get the chemo... But I am SO afraid! It will be 3 months since my surgery on Aug 2nd, and I read that you are supposed to start chemo within 3 months of surgery, but... it took that long to get the Oncotype test and to decide... Did I wait too long?

    I am PETRIFIED!!

    Thanks for thinking about me!
    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Harley,
    I too was told about the 3 month "rule". If you decide to do the chemo, which sucks, but not even half as much as you might think, I would talk to your oncologist tomorrow and set up treatment.
    You need to do what you can be comfortable with. My oncotype was 16. I am quite sure that there are many, many women out there choosing not to do chemo in our shoes, but that being said, the general consensus on this site is that we are going to use everything in our arsenal to fight this disease.
    The key is, that you DON'T want breast cancer to come back somewhere else. The places it comes back really stink.
    None of us have a crystal ball, but basically, if G-d forbid, it ever did come back, I didn't want to say "sh*t, I should have tried the chemo".
    Only you can make your decision, its just theat CMF, now that I am about to do my 6th of 8 treatments, is do-able. The time comes and soon goes. I truly can't believe I am at this point of my treatment. Most of the time, The week of treatment is tough (but stomach flu type tough, not what you might imagine chemo to be, tough) and then I am basically fine (with a couple of minor annoyances) for 2 weeks.
    My vote is go for it. We are here for you.
    -Melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    Do you think my dr. will say that it's too late, if I wait any later to start chemo? My surgeon has to put in that port, and he's going away for a seminar or something.

    That is exactly what I am thinking... I want to do everything I can to make sure that the cancer won't come back.

    Oh, I hope I didn't screw everything up by taking so long to make up my mind! My surgeon said that because it is slow growing, and it took so long to get to the point that I could feel it, it won't hurt to wait til 3 months to do chemo. That would suck even worse, to be told that I waited too late to do the chemo!

    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    I really don't think that you need to get the port first. You can start treatment without it. They can always put it in afterwards. I don't even have a port and I have bad veins. CMF is not as harsh on your veins as other chemos. I am doing fine without the port. You can also have it put in mid treatment (I am pretty sure).
    The one thing that you CANNOT do is second guess yourself. Each day you are making the correct decision for that day. Don't look back, just look ahead.
    Remember, you also need to be your own advocate with everything. Just because a doctor tells you "no" to something, does not mean that it can't be done. Push for what you want!!!!
    Remember, we are here for you.
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Thanks, Melanie!

    I left a message for my oncologist, and ... surprise! No one called me back. I did say in my message that I had changed my mind about getting chemo, and that if it was ok, I would discuss it at my next appt. with him. I said this, after asking about the 3 month rule, you know, is it too late? I guess I'll have to leave another message next week, but I have done all I can for now. It may be 8/17 before I talk to anyone at my doctors office. sigh...

    Thanks for the info. about the port! I'll see what my oncologist thinks, if I ever get someone to call me back!

    Thanks for all the support! You are nearly finished with your chemo! You DO get CMF once every 3 weeks, is that right? do you know if there is a shorter treatment, instead of 8 treatments, maybe just 4? I am a BIG CHICKEN!

    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    I get my CMF once every 3 weeks. I am having my 6th of 8 treatments on Tues. Mine will end up being a 6 month program. They can speed it up, I chose not to because it is a little more difficult to take. You can take shots to boost your immune system so that you can take treatment every 2 weeks.
    Please don't take this as being too pushy, this is just a suggestion and you need to do what is right for you, but if my oncologist wasn't calling back and you really need to get this started, I would show up at the office and wait until they could see me. This is your life and you can take charge. That being said, if you are more comfortable waiting, than that's what you should do..
    -melanie
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Harley,

    Melanie has given you good advice. CMF chemo is doable. I will have my 6th and final treatment on Thursday. I had four treatments, then 33 radiation treatments, and then came back for two more. It was hard to come back and do the last two, but I've made it through the first one and now I'm down to the last one this week.

    I know you are petrified. I think we all were when we started and at times, we still find that we're frightened.
    I know my legs were shaking when I walked into the chemo room for the first time and I was blinking back tears. However, the actual treatments have gone well for me. Like Melanie, I do not have a port. There are many who do CMF without a port. They have had no problem getting an IV into me until this last time and that was not because of vein damage but because of an inadequate nurse who seems to always have problems with everyone.

    Once the IV is in place, you just recline, sit, read, talk to somebody, or sleep while you're getting the treatment. I feel fine when I leave. In fact, I usually take the person who gave me a ride to lunch. I think you will be surprised how painless the actual treatment is. Then you just take it one day at a time and they're not as bad as you'd expect. If I have side effects, it is usually only for one day and we can do anything for one day if we know that it's helping us.

    We will help you through this. You can do it!

    Rita
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    I got kicked out of my pcp's office, and can't go back there, ever, because in the process of getting tested for bc, the woman who was supposed to get my referrals for the mammos, and u/s, and referrals to the specialist, was lazy and wouldn't help me. So, I got upset, and who wouldn't after a diagnosis of bc? So now I don't want to be too pushy, or else I might not be able to go back there, either.

    What is the 3 month rule?? My surgeon told me that my bc grew VERY SLOWLY, so waiting this long shouldn't be a problem. I don't want to have something happen later, and find out that "you should have gotten chemo sooner." But, it took that long to find out the Oncotype results, so I can't help it that my process took longer than most women's. Also, bc diagnosis is a VERY EMOTIONAL thing for us, so the fear makes decisions SO HARD!

    Maybe, on Monday, I'll just sit at the phone, and keep calling until I get through to someone who will answer my questions.

    Thanks for your help & support!

    HARLEY
  • Sue227
    Sue227 Member Posts: 45
    edited July 2007
    Hi Everyone,
    I haven't been on in a while. I have been catching up on everyone's progress. This thread was so helpful to me when I was going through treatment. It was a year ago last month that I started CMF, 6 treatments, every 3 weeks. Now, I my hair is back thicker than ever, the fatigue is gone and except for the hot flashes from tamoxifen, on the outside I look like I never went through the year from...Of course, we all know that on the inside it is a different story.
    I'm glad to see that everyone still checks in from time to time.
    Harley, I just had to weigh in on your worries. I was diagnosed in early March 2006, had lumpectomy and SNB, than mammosite then my gall bladder out and an additional surgery to remove a lymph node that was enlarged on the other side. My oncotype was a 21. I opted for chemo to make sure I did everything I could. With all of the medical stuff going on, I didn't start CMF until late June, almost 14 weeks after my original surgery. It would have been better to start sooner, they like to do it 6-8 weeks after surgery but no one ever said I was hurting my chances by waiting. Stressing out over it is no good, I really believe a postitive attitude is so important for the healing process. More importantly, you need to be comfortable with your doctors. This is your life and your body! I can't believe your PCP would ban you from the office or that your oncologist office didn't have someone call you back. Have you considered maybe looking into changing doctors. This is such an important process and you really need to feel comfortable and secure with your decisions and those that will be treating you.

    Don't worry about the CMF. It is so doable. Like Rita said, the day of is very uneventful. Then you have a day or two of feeling like you have the stomach flu but if you take your meds on schedule even if you don't think you need them, then your symptoms will be mild.

    Take care everyone.

    Sue
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Rita,

    Thanks for the advice! I am SO scared! I know, I keep saying that, don't I?

    How long was your chemo treatment? 4 months or 6 months?? I was hoping for 3 months!

    If I can't get my onc on the phone, and set this up sooner, I think a couple of weeks shouldn't make much difference.

    I don't think I should do chemo without a port. But, my surgeon is going to some conference or something and won't be available for the first week of August. So it's either next week, or 2 weeks from now. I guess I should be able to get in touch with my onc's office by then. And, maybe I can get my surgeon to call him. I mean, after all, aren't all drs. part of the unwritten dr. network?

    Thanks so much for all the great advice!

    HARLEY
  • Sue227
    Sue227 Member Posts: 45
    edited July 2007
    Oh yeah, and as for the port. You can always start without it and see what happens. That is what I did. I didn't really want another surgery, so my onc said I could try it without and see what happens. She said she leaves it up to the chemo nurses, since they are the ones who have to get a good vein each time. I had no problems so no port. You might want to give it a try.

    Sue
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Sue,

    Thanks so much for your message! I was so stressed out about the "3 month" thing, but you are so right! I have to try to stop worrying about all this!

    Yes, I too feel that I have to do EVERYTHING I CAN to make sure I won't have a recurrence. I am going to ask for CMF, but I haven't discussed which ones we will be using. I am guessing because of the favorable aspects of my bc, it should be the best one for me.

    Did you lose ALL your hair? My hair is very fine, and thinning, due to a thyroid disorder, so I may lose all my hair.

    Well, he is my SECOND onc!, because the first one, even though he was from Duke, didn't seem to care at all, and one minute he'd be talking about the se's from the chemo, and the next he would say, "I hope you don't think I'm telling you to get the chemo." I needed someone to help me to sort all this out, so I went for a second opinion. I REALLY like this onc, but... it is hard to get through to anyone in the office. He is really nice, he's not stuffy or "professional", but he's really down to earth. He doesn't wear a white coat.

    If I hadn't waited so long to get my second appt. with him, maybe I wouldn't be so stressed about the 3 month thing. I will stop worrying about it. Maybe I'll just call on Monday and try for an earlier appt. to discuss the chemo options, and just go from there.

    Thanks for your help. I know I shouldn't feel so frazzled about it, but I'm torn, since I am so twisted up inside about having to do chemo. I am really grateful that I have this choice.

    Thanks!
    HARLEY

    P.S. This onc doesn't even accept my insurance, but he agreed to take it, so he can see me for whatever treatment I choose... He's really nice, and my insurance doesn't pay very much, so there really are NO 'network' providers here in North Carolina. I'm lucky he agreed to take my insurance!
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Thanks, Sue! I'll ask about it, but I'm thinking that I should get the port. Last blood I had drawn for my thyroid, I got a HUGE BRUISE!!, because I don't think the nurse knew what she was doing. That was in April, and when I had my surgery in May, the nurse who put my IV in was good, and it didn't hurt at all... at least, I don't remember it hurting. The biopsy IV HURT really bad!

    Thanks
    HARLEY
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Sue,

    BTW, can they do surgery on me after I start chemo?? I would think that would not be a good thing, since the immune system is messed up! I wouldn't heal after the port was put in....probably get an infection...

    Thanks
    HARLEY
  • Sue227
    Sue227 Member Posts: 45
    edited July 2007
    Harley,
    When they use your veins for CMF, they usually don't use the one they draw blood from. A good nurse can find a veing anywhere. I had some on the front of my hand, some on the side and some on the inside of my arm. Only one time did she blow a vein and that was when an inexperienced nurse tried to do it. They will usually not use the same vein twice. If you are really worried, then why not ask your onc for a general surgeon to put a port in. My understanding is that they just use twilight sleep unless you start moving around alot. I think if you had to have it put in after you started they would wait until right before a treatment when your counts are back to normal.
    Your onc does sound like a keeper so why not go with your plan to call and get an earlier appt. I know they are busy but they can fit you in if you explain to the scheduler why you want to come earlier. Then like I said, he probably has someone he could send you to to put the port in if you want to have it.
    I lost about 1/2 my hair but it is very thick so no one noticed except me and my hairdresser. the loss was gradual and cumulative over the course of the treatment. I used nioxin products which seemed to help. I had it colored also during treatment and had no problems.
    Hang in there! Since it is the weekend, just relax and wait for Monday.

    Sue
  • candie1971
    candie1971 Member Posts: 2,467
    edited July 2007
    Harley,

    I come on here every so often. As a matter of fact, Sue and I went thru chemo at the same time last year. What a difference a year makes!

    My hair grew back ( I didnt lose it all) beautiful--so much nicer than before. Has more body than it ever did. I am not so tired anymore and it feels like that was a dream and I cant beleive I went thru it.

    As for you--stop panicking!!! Think positive. Waiting 3 months is not gonna hurt anything. I did not have a port--my veins held up just fine. I did 12 treatments of CMF and then 33 radiation treatments. I remember feeling freaked out by the whole thing too, but take it from us who have gone thru it--you will be fine!!! We are all here for you at anytime.

    Harley have u ever been in the chat room? I go there every night--come in if you haven't--godd support there too.

    Take care...keep us posted...you will be so fine!!!

    Hugs and prayers,
    Candie

    Sue, nice to know you are doing good!!
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Sue,

    Yes, I have a general surgeon who I like alot, too. But, he's going to a conference, and won't be available to put the port in... so I will either have to get the port put in next week, or wait two weeks to do it. Even if I get an earlier appt. to see my onc, I will probably not start chemo right away, so I would have time, I guess...

    Thanks for the help & support!

    HARLEY
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Candie,

    Thanks so much for all the good advice! I have been freaking out so bad, but I just want this over with!

    My hair is very thin, due to a thyroid disorder, so I will probably lose it all...

    My husband can't be here, because we moved to North Carolina, and sold our house in Maryland. He is in the Navy, stationed in DC, and he can't come down to be with me. I think that is another reason why this is bothering me. He'll be retiring in September, so we can be together again soon. I am supposed to go up with him for his retirement ceremony, and stay for a couple of weeks, so now I am scrambling to come up with a treatment schedule that will accomodate my travel plans. Do you think the dr. will be able to arrange my chemo around that? I would be going back with my husband on Aug. 26th or so...

    Maybe I'll stop by the chat room one night soon!

    Thanks!
    HARLEY
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Dear Harley,

    I hear your anxiety and panic. We have all been there in one way or another. Rememeber there have been so many women, who have felt afraid like you, who get through this treatment. I truly believe the fear of the "unknown" is far worse than any reality---really. I had some challenging days with chemo and some really good days inbetween, but I got through and so can you! Just take one day at a time and try to keep living and enjoying each day as much as you can---life does'nt stop during chemo!
    I must say though, that I am really glad that I got a port. The mini surgery was a piece of cake. The blood draws and chemo were painless (used emla cream before so my skin was numb). Some get through well without, but considering your anxiety, really it makes things soooo much easier!!! I don't think there is any problem with getting it put in early in the chemo process, it takes awhile before your blood counts drop a lot. Anyway, any questions about this,please feel free to ask.
    My onc. gave me a choice between 3 months of AC or 6(turned out to be 51/2 months) of CMF. CMF is a longer route, but it is gentler on your heart, don't lose all of your hair (50-60%), and supposed to be easier to take. I don't know...everyone handles it differently. Some people have relatively no problems, work full time...Anyway, you can get through this. It is already becoming a memory for me and it will be for you too
    Hang in there girl---lots of support here.
    Praying for you,
    Ginny
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Ginny,

    Thanks for the information about how long the different treatments will last. EEK! I don't want AC, but I don't want to be doing this for 6 months, either.

    My surgeon really wants to put the port in, so I think I will definitely go that route. I just wish he would be around the week after next, so I wouldn't feel so rushed.

    Geez, if chemo takes 6 months, and my reconstruction will take awhile, too, since I have to have expanders put in, and then get stretched to kingdom come! I have a cruise in May 2008, so I am wondering if I will be able to go, or will I still be doing chemo?

    Thanks, Ginny...
    HARLEY
    P.S. Can I take the option where I hide under the bed with my cat, Spike??
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Harley, Say hi to the cat for me. I swear, my posts back in April sound just like yours. You will find, I promise, that the nerves go away and it just becomes something you do. I KNOW 6 months sounds like such a long time, but it really does move along faster than you would think. I really can't believe I'll have my 6th this week. I feel like I have just begun and really I am going to be finished soon. The women on here were such great support. It is so nice to know that the crazy roller coaster of emotions are so normal. I don't envy you, the scariest part of this whole thing is the time leading up to your first chemo. I was a basket case. That feeling becomes a thing of the past as soon as you "take the plunge". About a week after my first treatment, when I was feeling back to myself, Irealized that everything everybody on here was saying was true. We can do this, get through this, and put it behind us. I was working 2 jobs when I started, I am a school teacher and I run a tennis camp over the summer. I would miss 3 days of work with each treatment (actually the 1st treatment, I went to work for a couple of hours each day). Mine are on Tues. I would work on Wed. then take off Thurs., Fri and the weekend. By Monday I wasn't 100 %, but surely able to work. Then, except for some annoying little side effects, for the next 2 weeks it was business as usual. Then it starts again. Before you know it, you are at the end!!!
    Clean some dust bunnies under the bed, come on out and we'll be here for you!
    -Melanie
  • SCMartin
    SCMartin Member Posts: 112
    edited July 2007
    Harley, Candie and Sue and I all went through CMF last summer. Like you, I was a total basket case before my first chemo but got better as time went on. I had 8 CMF treatments every two weeks. I asked to have them try it every two weeks instead of every three. I did it and it was fine. I would feel not quite right the day of chemo and part of the next day and then I was fine. I did not lose my hair or get sick. I traveled between each chemo. It was really not bad at all and I did not have a port. They found a vein each time. I had 30 radiation treatments after chemo and I am on Arimidex. We look back at last summer and know it was doable and it is behind us. You will be fine. If CMF is an option for you then that is a good thing. Believe me when I say no one could have been as scared and anxious as I was but I didn't need to be. These boards were the best and it helped to share the experience with others. You'll be less anxious once you start and the time does go fast.
    This Friday I will be the speaker at a Rally For A Cure Event (not looking forward to public speaking) to raise money for the Susan G. Komen Foundation.
    Hello to all and lots of love and hugs. Hang in there everyone and Harley, you will have lots of support here. Susan
  • Sue227
    Sue227 Member Posts: 45
    edited July 2007
    Hi Candie and Susan,
    What a difference a year makes! This time last year we were in the thick of it. So good to see that you are both doing well. Susan, what a wonderful thing you are doing. Good luck. To all of you CMFers, hang in there, it really will go by fast.
    Sue
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Ginny,

    Thanks for the prayers!

    HARLEY
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    Funny, but my cat, Spike is a lot braver than me. Since we moved here to NC, he has come out from under the bed, and now he only goes there when I run the vacuum cleaner!

    I feel better now, after thinking it over, I think I will just wait til my appt. with the onc., because then my husband can come with me, we hope, he's going to request special permission, or special liberty, so he can go with me. It will help me to have him there, and I think he needs to meet with my onc., since he has a lot of questions, too. At least, I can come here with questions, and all of you wonderful women are very knowledgeable, so I am getting some answers.

    Thanks so much for all the support!
    Good luck with your 6th treatment!

    HARLEY
  • jenjen68
    jenjen68 Member Posts: 9
    edited July 2007
    Hi

    I've got a question. I just started CMF and are supposed to take 3 Cytoxan pills. Do you take them all at once or spread them out?

    Thanks
    Jen
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Hi Jen,

    Different onc suggest different ways of taking cytoxan. At first I took them all at once in the morning, so you would have enough time during the day to really drink a lot of water to protect your bladder. Some women have had them spread out through out the day if the side effects were hard on them. I had a rough time with the pills (nauseau---and I don't want to scare you, because a lot of people don't have this---everyone reacts differently!) so they told me to take them before bed with tons of water, wake up in the middle of the night go the bathroom...to ease the symptoms.
    The bottom line is do what your onc suggests is the best idea and keep in touch with how you are feeling.
    Hope this helps,
    Ginny
  • jenjen68
    jenjen68 Member Posts: 9
    edited July 2007
    Hi Ginny

    Thanks for the info.
    I did 3x FEC which I never really wanted from the beginning. Since I started reading more and more about women being treated with Anthracyclines with little or no OS improvement, I decided to finally switch to CMF. My doc said that FEC has an advantage of 4% over CMF in my case. I thought that wasn't enough. What do you guys think if it was you? I think my 'numbers' aren't too bad, so I took the chance.
    This is my first day on CMF, and I have to say that I'm more neausous (sp?) than on FEC. This really surprises me since I thought this was 'Chemo-light' ;-) I took 3 pills (150mg) last night, so I guess I have to wait til tonight again? The didn't tell me when to take it. Anyway, hope this was a right desicion.

    Greetings,
    Jen
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Hi Jen,

    With FEC, you also were taking "C", cyclophosamide, but probably by infusion. I'm not sure I understand all of your prognosis numbers, are you ER?PR+ or-? I know latest research shows good results from FEC. CMF is good for early stage ladies. I found the "C" pills tough to take, so I switched to having all infusions. It is worth really trying with the pills (with support meds...) because they are supposed to offer better results, slighty, but if you can do it, why not? About taking them at night, better to talk to your onc about that. I know my hospital (Princess Margaret) in Toronto did a study and found taking them at night not to be harmful if you drink lots of water, especially before bed,wake up and clear your bladder. I know some other ladies were concerned I took them at night, because their doctors did not advise it. My hospital though is leading in research...internationally. Bottom line again, check with the onc taking care of you. The pills, if you don't take enough water have given people bladder problems...
    Anyway, hang in there Jen, now is the time to fight this beast with all that there is to offer. I know it is tough, but you can do it!
    (((hugs)))
    Ginny
  • jenjen68
    jenjen68 Member Posts: 9
    edited July 2007
    Hi Ginny

    Thank you for the kind words ;-)

    I'm stage 1 n0 m0 1,2 cm. E 100% P 100%. So Iam hormone positive. I know that FEC is supposed to be really effective. But I keep reading about new studies that say that too many women get FEC with almost no benefit. Like this one: http://www.natlbcc.org/bin/index.asp?strid=944&depid=20
    I guess I'll have to call my doc to find out when I should take these pills. How much water are we talking about here? I usually drink about 2 liters a day.

    I'm in Europe and hardly anyone gets CMF here anymore, so I'm really surprised that so many of you guys do. I think my 'numbers' probably not much worse than some of yours?

    Yes, we have to fight and you are right 'it is tough', but we have no other choice.

    Greetings
    Jen

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.