CMF Question
Comments
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Macy
I had fatigue on CMF. It was cumulative with each treatment.
Insomnia is the aftermath I'm getting. Lol
I think many oncs dont use CMF because its an old regime. Lots stick with new treatment regimes like ACT is a newer one and more common now a days.0 -
Hello Macy, and welcome to Breastcancer.org.
Unfortunately, Insomnia does sometimes come along with BC treatments, and Fatigue is the most common side effect of breast cancer treatment. You can read more about causes and how to manage both by clicking their links to the main Breastcancer.org site. There are also threads here on the discussion boards - just click the Search link in the blue menu and type in the keyword you want to find in posts.
• The Mods
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Hi Macy!
I sent you a private message. If you look on the left side, you will see a section that says "private messages" and it will have a notificiation that you have received one. Just click on it.
All the best and remember that whatever you decide, it is the right decision for you.
Hugs,
Mandy
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Hugs Macy! How I remember those sleepless nights as I fought my fear and worried about the decisions that I had to make! Honey, everything you are experiencing right now....the emotions, the fear, the sleepless nights, the worry about your hair, and your worry about making the right decision is SO NORMAL for what you are going through.
When it comes to making a decison on the type of chemo that is given, there are many factors that are considered. First...your age. The younger you are, the more apt they are to hit you with a high dose heavy chemo. Second...the size and type of tumor, as well as the stage of if. I know that CMF chemo is used quite often for stage 1 tumors. The location of the tumor is also considered. I would definitely seek out another opinion or two before making a decision. I am proof that CMF chemo does work. I was diagnosed in 2006. I opted for the CMF because the main type of stronger chemo at that time was AC which sometimes had adverse affects on the heart and the women in my family have a history of heart problems.
Please let us know what you decide and feel free to PM me with any other questions. I wish you the best. Things will seem much easier for you once you've made your treatment decisions.
Hugs,
Rita
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Hi Macy,
Initially my Onco wanted me to do a harsher chemo. I believe TAC. I was adamant about not doing rough chemo, not so much out of vanity (although there was a hint of it) but I am a single parent with just the one income I had to work during chemo and I didn't think I could work and endure the other harsher chemo regimens and be able to maintain.
So he relented and said any chemo is better than none.. Also, I had scans done and there was no cancer found after my bilateral.. I was able to work and do the chemo. I did my treatments on Thursday morning, go to work right afterwards and was ok until about late Friday when my side effects of being tired, and leg pain seem to come. It was shaky in the beginning. I was nauseous, but they have great meds out there and once they were able to get me the right meds I didn't get sick. They also gave me sleep aids and Xanax for all the anxiety.. That helped.
My job was awesome through out this. Every now and then I'd take out Mondays off just to rest. And I went 1x every 3 weeks. Hope that's helpful
Ann
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Hi Ladies,
Thank you so much for all your kind and helpful responses. They mean a lot so thank you all for taking the time to respond and help a stranger!
I am 43 and up to this point, have been perfectly healthy. For those reasons and my type of cancer, my team of doctors wants me to do an aggressive chemo like ACT (?). I did have what appears to have a very aggressive cancer that was considered stage 3. I say "did have" because I am assuming my cancer is gone now after having a mastectomy of my left breast which went very well.
Apparently I am HER2 positive which makes the aggressive treatments more appropriate in my case. But again, I am very much in the stage weighing risk vs. benefit. I'm learning very quickly that there are no guarantees with cancer.
I have decided against that ACT regimen for a variety of reasons. About 50% of it is my hair but the rest of it is that it so toxic and strong. When I read the side effects, I wanted to just forget the whole thing. Why ruin my good health for a treatment that may not end up changing anything? There is a middle of the road treatment without the "A" part which is also an option.
Another thing, I wonder if doing a more conservative treatment now still allows me the option of doing one of the more aggressive treatments later if the cancer returns. From what I understand, you can only do a treatment regimen once and then you have to switch to something else if that one does not work. Not sure if this is true.
I will be getting a second opinion, simply because the cancer center where I am being treated is 10 hours away from where I live. I have to pick an oncologist who is more local for my chemo so that will be at least my second opinion. I'm still working on finding a local oncologist.
Not sure if my ramblings make sense to anyone. But all of this is still so unreal. Mornings are the hardest for me because I wake up thinking this was all a bad dream but then I realize it is real.
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@Macy, one thing that might help you make decisions about chemo is if your oncologist will run some numbers for you on Adjuvant!online. This is a program that analyzes the results of clinical trials for the various treatments as applied to different stages of cancer and also IIRC takes the hormone receptor and HER2 status into account. That should give you some idea of how much real difference in outcomes has been seen between the different chemo regimens you are contemplating. If your doctor doesn't have access to this or isn't agreeable to running the numbers for you, there is an online calculator called cancermath that will give you similar statistical info. My oncologist ran my chemo options through adjuvant!online, and I did cancermath at home--the results were very similar from both calculators. For me, displaying the results as a pictogram was the easiest to understand, but you can try the different forms of the calculator until you find a version you feel comfortable with.
Hope that helps!
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Macy...Yes, my onc told me that if I did the CMF I could go to the "big gun" harsher treatments if the cancer returned. You are right. You can only do one type of chemo one time and then must go to another formua.
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Hi Macy,
I am one month past my final chemo and I SO understand your hair worries. I too turned down ACT and did TC instead. I went for many opinions and the doc I stuck with was very supportive and even said as long as he knew i was making an educated decision he was fine with whatever I picked. He also was honest and said because i was 22 nodes positive his emotions said throw the book at it with the strongest there is. We discussed it all and it was only a few 4-6% diff in outcome between the 2 regimens, which i know seems like a lot, but there were also significant risk factors with ACT. Specifically the cardiac stuff as late as 3-5 years from now. He talked to us for over two hours about everything and then I just weighed all the factors and did a ton of research, made a decision and dove in hoping there was water in the pool! every other doc just said 22 nodes, you get ACT.
I also kept most of my hair! That really helped my outlook. it really isn't much about vanity. It is about control, not giving cancer any more than you have to, privacy, and not looking sickly makes you not feel that way either. Check out the cold cap thread. You can click my name and see my posts to get to the thread. It can be a little expensive. Most ladies use Penguin Cold Caps. They rent for $500 a month. I used Elastogel caps and you can buy them on Amazon for $85 each and you need 6. You also need a cooler and have to get dry ice each treatment. Most people have had good luck getting the ice discounted once they say what it is for. I will be happy to talk more with you if you want and this weekend I am planning to get timeline pics of my hair posted and also I have video showing how we changed the caps during infusions.. you can message me if you like too :0)
good luck whatever road this journey take you down!
Lynne0 -
Lynne, so glad you popped on to give Macy another alterative! Thanks a bunch!
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Macy
I so understand where you are coming from! Losing my hair terrified me. I will admit it, it was a big part of why I did CMF instead of ACT. My doctor wanted me to do ACT. But I had done my research and read about CMF. He then agreed to the Oncotype DX test. Has your doctor run that on your tumor? At my center, they said if your score is under 25, they don't feel that your cancer will respond to chemo at all! My doctor was more comfortable with a score of 11. Mine was 19. Which put me in a gray area. Due to that number he was extremely comfortable with me doing CMF. If it were 25 and over we would have been having a really tough heart to heart talk. I can't say enough good things about my oncologist. I trust him implicitly. I think they are way overdoing it on the harsh chemos. Heart disease runs in my family and I was terrified of doing more damage on the insides. I did chemo from feb to may. Finished up radiation July 31st. Now I have been on tamoxifen a month. I feel satisfied I did my part to fight this. Now if I could only sleep through the night! the ladies on here are awesome to answer any questions. Rita & Mandy & Softness and Traii were with me every step of the way. Good luck and let us know what you decide. Robin
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Hi All,
I am new to this posting thing and realized I should clarify that when my onc said there was a 4-6% difference in overall outcome between the CT and th ACT, that was specific to MY tumor characteristics. Before we knew the extent of node involvement he had said 0-3% at the most, but probably the lower end of that. They only thought a couple of nodes were involved because of the US, MRI and PET scan. That's why i was able to get an Oncotype done. It was 13. Imagine all of our shock when it came back 22! Lobular is very sneaky and doesn't like to show itself on imaging.
Have a great week Everyone!
Lynne0 -
I still wonder why I didn't have a lobular form of the disease because mine never showed up on imaging either.
I've made my decision to go with CMF and hope for the best. There are no guarantees with any of the treatments so I will take my chances. I don't know why, but I've found that following my instincts, even when they fly in the face of the doctors or anyone else says, seem to has served me best.
For example, when I first learned that I had microinvasive DCIS, my instinct was to go for a mastectomy when everyone thought that was overkill. It turns out a mastectomy was absolutely the right thing for me to do because I absolutely had to have one less than 2 months later. Also, my diagnosis of DCIS was surprising to me. I was sure I had something worse...and it turned out I did. (oh, I had DCIS w/microinvasion too--but that was just the tip of the iceberg for me)
When I first heard about CMF from my Oncologist, I had the distinct feeling that it was the treatment for me. Yes, it's the hair thing but there's more to it for me than that. I don't want to ruin my good health more than I have to and yes, chemo seems to ruin your health for a time, sometimes permanently. I read these stories of women who have long-term side effects from some of the stronger chemos and I don't want that to be me. I will take my chances with the cancer. If it returns, then I will cross that bridge when I come to it, i.e. more aggressive chemo.
Robin3, thank you so much for what you wrote. I see that you were a Stage 3 like I am so please know I take comfort in the fact that there was another Stager 3-er who chose CMF. I will ask about that Oncotype test and see what my doc says.
I feel like I am crazy for choosing this but for some reason it seems like the right thing to do for me, I don't know why and I can't shake it!
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Macy,
I think we all had to follow our instincts after we had the facts and we had to make the decision that we felt was right for ourselves. It's so hard because nobody can really tell you what to do and all of our situations are different. Once I made my decision, I never looked back to second-guess myself. I was more at peace than before and just charged ahead with whatever was to come. We will be here for you.
Hugs,
Rita
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Hi Macy!
So glad you have a plan! PLEASE don't feel bad for making a choice that your gut said was right for you. I had doctors from 4 hospitals all tell me I needed ACT, but it wasn't the right decision in my head. I did NOT want to do chemo at all. My oncotype was 13! My Ki-67 was only 9% and my GYN said she had never seen one that low! I thought I was in the clear from chemo when, BAM those nodes showed up. Stage IIIc plus at teh time they spotted some enlarged but not abnormal nodes in my neck which would have meant stage IV. YIKES!! All the docs freeked. had neck ultrasound and they say everything is fine. I am gun shy of that since I have heard that before! That's why prophylactic Mastectomy on Wednesday. Not leaving any breeding ground!
The onc I am with was very supportive of my decision even though I didn't go with the harshest stuff. I had done SO much research and could even quote studies to him about lobular not responding well to chemo, about Adriamycin not being best choice for highly estrogen positive, etc... you get the idea. Of course he could meet me with counter point! It was a long appt! In the end he was just happy I went with something!
The decision making was awful. My husband and I were even arguing until a decision was made. I felt guilty for not wanting to do the strongest, newest, etc...however, I too was not willing to risk my good health for the other drugs. They already told me that without chemo i had an 85% chance of recurrance and spread. With chemo it is still 40-50% chance it is going to bite my butt again. That's their story, not mine! I was not willing to risk those odds and congestive heart failure, etc... not with only a few % diff between the 2 regimens.
After I made a choice a friend said "no looking back! You certainly have done your due dilligence." she was right. I just had to do what was right in my own gut, heart and head. Unfortunately they all don't always agree with one another! Nobody else could make the decision for me except the doc, but he was frankly relieved that I knew what I wanted and could discuss details with him. Another doctor at Emory told me I had to believe the treatment was going to work because she knew I really didn't believe it was going to make a big difference because chemo is not great when it comes to lobular.
In the end I wrapped my head around chemo, did my homework and made that decision. It is so hard because there are no right or wrong answers. It is a big crap shoot. (that's another one of my terms the docs are not particularily fond of, but they agree with!) I can look at my husband and kids and know that I did all I could to fight this. No More Guilt!
Oncotype--it's a great tool. I got them to run mine because they thought i only had 1-3 nodes involved. Surprise! They don't do the test if you are 4 or more nodes positive and some docs are resistant if you have even 1 node. All insurance doesn't cover it either and it is around $3800. It was out of network for me to start, but the lab does all the back and forth with your insurance. They then said I would be responsible for the in network 10% unless we made less than $150,000 a year. After I got done laughing, I told her NO we did not make more than that and they said they would cover the 10%. I never even saw a bill. They are in CA so I guess people get paid more there! They are great about answering questions and helping out too.
Hair--I Don't know much about CMF but I do know that the Cytoxan component does have hair loss as a side effect so maybe these ladies can give you more insight there.
Mine BC is never coming back and neither is yours! I have that wish and prayer for everyone on these boards! and that our daughers never even have to worry about it.
Mind over matter is my motto! Big help during chemo. Again, more guilt and it kept me from posting before. I had a very uneventful trip through chemo. I hope you do to!
Best Wishes moving forward on your path!
Lynne
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HiMacy!
I know the sense of calm that comes when you finally make a decision. So don't look back. You are doing what is right for you.
We'll all be here for you to answer questions and to hear your complaints as you go through this journey.
All the best.
And hugs to everyone!
Mandy
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Yes, I do feel a sense of calm now that my decision has been made and I've talked to my oncologist about it. Chemo will start in a couple weeks for me; I will keep everyone posted!
Thanks to everyone and (((hugs)))!
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Dear Macy, making decision I always hard especially for our case. We want to live longer at least to able to join my kids wedding! I'm working on my 7 th tx this Thursday n have one more to go after this. I was scared to dead when the 1 st tx started, crying like hell when I saw the hair loss. However, the most greatful for taking CMF is my family's living quality is still same as before. We got lots of pressures fm our body n mentally, indeed, our love one has more pressures to take care us n the adjustment on their sides.
We are able to go on the curise, helping my son moves to the dorm, and enjoy the shopping with my daughter ...etc. overall, I'm so glad I made the decision with CMF treatment.0 -
Thanks, Cherish for your thoughts. So, did you have 8 treatments total of CMF? That is what I have been told I am having. 8x, 3 weeks apart. I think this is the standard? I actually feel a little more reassured by the longer treatment time even though it is going to be a major pain in the rear. I figure it gives the drugs a lot of time to work on any nasties that might have remained after surgery.
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@Macy, My oncologist told me there are many different versions (he called them recipes) for doing chemo with these three drugs. I don't know how an onc decides which one to recommend for any particular patient. I had weekly infusions for six months. But lots of the women in this thread have had the 8 treatments at three week intervals. So, I don't know if it's the standard; it might be more correct to say it is one of several standard regimens for CMF.
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I had the 6 treatments, also, curveball!
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I had 8 treatments, 2 weeks apart for 16 weeks. (I also had a port). FYI. :-)
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My apologies, I didn't mean to imply anything with the length/frequency of treatments. I'm still learning about all this and made an incorrect assumption based on some of the reading I had done on CMF.
Have a good evening, everyone!0 -
Oh Macy, that's O.K. This is so confusing and frustrating! I think everyone was just telling you that we're all different and our oncs prescribe different formulas for us based upon our individual situations and their beliefs and preferences. Most of us have done well with our own special cocktails and I'm sure that you will do well, too. The side effects are pretty much the same for all of us and can easily be controlled. We have lots of experience between all of us and can offer suggestions if needed. Hugs to you as you proceed with your journey. Come back often and let us know how you are doing and never be hesitant to ask questions. That's how we all got through this, honey!
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Hey Ladies! Hope you all are well in you different areas of the trenches!
Macy, it takes a while to hunt and gather all the info you can and even longer to wrap your head around it. And there is always something else to ask or take in! Don't feel bad about anything!
All of these things have variations. Similar diagnosis will receive different treatments because of all sorts of factors. Where people live even plays into the equation. I did TC x4 but saw others doing x6. I asked my onc before we started and he said no data supported 6 being better than 4. At my 3rd treatment I offered myself and asked again about doing two more treatments. It was going pretty well so even though I didn't want to, I would have done 2 more. That was also probably some guilt about not doing the stronger meds.
Also I think based on you "surface area" and strenghth theyngo for, they have a total cumulative dose for you and then they divide by the number of treatments. There are standard doses for some things too. For example my Taxotere was 150 per sq. meter of body my Cytoxan was 600. I had seen where cytoxan is usually 500 so I wonder if that was a way of making my regimen a little stronger.
Certain chemo drug like Adriamycin have a lifetime max you can receive. Other drugs like the Taxanes, you can get at a later date again depending on how long it's been and I think they have a way to test and see if you have built up a tolerance to them. Any drugs carry the risk that you might stop responding to them. Tamoxifen carries that risk too!
While that is all a concern IF we ever need it again (which we won't") there are tons of other options. While ironic, I don't think chemo is the first go to if there is spread. They have tons of new oral meds and hormonal stuff. I was tol that's where I would start IF anything ever pops up gain (which it won't). We were discussing only because my risk is so stinking high!
As for you, YOU have NO Nasties left! Your doc carefully removed it ALL and it's imbedded in wx someplace just like mine. Good demolition doc! Now those exterminator docs are going behind to sweep up the dust bunnies and make sure that building in inhabitable!
(((hugs))) to All. This is so tough in the beginning, Hang in there.
Lynne0 -
yeah, what ritajean said! I was just trying to reassure you Macy that your onc has not put you on some weird un-tested treatment protocol. Eight treatments at three week intervals is a frequently-used CMF "recipe", and I hope you will do very well on it.
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It was horrible weekend!!! This time I was really busted by the tx. Nausea, headache, body ache, and chills, ans the worst part is I got very depress....got one more to go and hopefully it will be better,
Macy - my treatment is 8 cycles and 3 weeks apart.
Since the treatment is going to competed, what kind of test or scan shall be doing? Any input will be greatly appreciated!!!
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Oh Cherish, sorry that tx 7 was so hard for you. Are you feeling any better now? I also found my 7th tx to be somewhat harder than the earlier ones--I almost backed out of the 8th tx because of it but in the end I figured it was only one more. I hope you are feeling better today.
Take care and feel better.
Hugs to all,
Mandy
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Dear Mandy, thx so much! I'm feeling better now but still very fatigue. As I told my husband that I almost can't going further for the last one....plus I also got the bladder effectiiom right before the tx! My oncologist still want me to precede the tx so she proscribed the high dose go antibiotic. The medicine made me even worse during and after tx. Right now I just pray the God will help me to get through till the end.
Love n hugs to all! Fight on!!!0 -
Aww Cherish, I'm sorry you are struggling here at the end. I too had trouble with the 7th treatment. But hang in there and just see if you can muster the strength to do the last one so you can finish with a clear conscience. You don't want to say "what if". It really will be a memory before you know it. I'm 3 months out of chemo, i'm past radiation. You do get back to some semblence of normal. I promise. I'm not saying it's easy, but I have faith that you will do what is good for you. I remember 7 being much harder than 8. If that helps.
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