CMF treatment survivors and experiences
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I would like some opinions on my situation.
I had breast cancer in 2014, my heart was damaged. I have now had a
double mastectomy and my oncologist said my option for treatment was CMF.
He said that it was up to me, we could have CT scans every 3 to 6 months to keep and eye on things or I
could choose to do 6 treatments every 3 weeks. Can you please let me know what option any of you would take?
Thank you!!
Marie
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Hi Marie,
I know my CMF therapy was determined after my oncotype score came back at a surprising 26 putting me in the intermediate risk of recurrence. Originally the plan was lumpectomy and radiation. When I started the CMF I was scheduled every 3 weeks and after treatment 2 the schedule was excellerated to every two weeks. I’m 65 and in fairly good shape with no serious health concerns but I had to delay my chemo 6 for an extra week due to a 24 hour bug that left me dehydrated. I really wished I had just done every 3 weeks because every two weeks makes me feel like I’ve barely recovered. So for me if I had to do it over I would say just give me chemo every 3 weeks. But, keep in mind that everyone responds differently and age, oncotype score, grade of cancer, and your oncologist all factor in regarding your course of treatment. My biggest complaint has been a reflux stomach upset issue that nothing seems to help. I had constipation early on but if you read back I came up with a routine to combat that problem. I have kept my hair, the treatment time is about 1 1/2 to 2 hours so all and all not a bad chemo relative to what others have undergone.
If I had a bit more information about your previous treatment I might have a different opinion.
Ask any questions you have and I’ll try to answer them. I check this forum every day.
Best of luck, Kate
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I'm happy to have found this group -- I had my first CMF treatment 4 days ago. I'll be doing 8 treatments, probably 3 weeks apart unless I want to "speed up" and add the Neulasta, but since I will be working throughout I'm inclined to just do the 3 weeks apart, whole thing will take 6 months.
The infusion itself wasn't bad, I was very nervous about them finding a good vein as I've been told I have difficult veins, but they did. Felt it during the infusion around the needle site more than expected, the nurse gave me a warm compress to try over the area which helped.
I was fine Friday night, some trouble falling asleep and woke up early from the steroids on Saturday, had a sort of manic burst of energy and then had to nap that afternoon. Also had some constipation but took Miralax and Colace Saturday and Sunday which worked. Have felt sort of like I'm getting sick but am not yet sick since Friday. Sunday was an okay day until about 5pm, when I crashed hard and slept for a couple hours, woke to eat dinner then back to bed. Monday I worked from home. Today (Tuesday) I went out to physical therapy and then to work, unfortunately I was hit today with a lot of dizziness which was unpleasant during the travel. Has anyone else experienced dizziness, and have any suggestions on what worked for them?0 -
Welcome, 2002chickadee! We're glad you've found our community, and hope that it can be a source of support for you as you continue with your treatment.
The Mods
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Hi All, were any of you given a choice as to which chemo regimen you would have? Because of the small size of the invasive tumor and no node involvement, though Triple Negative, my MO has told me it's my decision between AC-T, TC, or CMF. At the first meeting after the final surgical path report, he even said some women may decide no chemo. Any information that your doctors gave that helped in your decision for CMF would be most appreciated.
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Hi 2002chickadee,
Welcome to this group. I started CMF on 12/5/17. I had 2 infusions 3 weeks apart then I began getting an infusion every 2 weeks with nuelasta. I had chemo #7 yesterday! Chemo #8 is scheduled for April 9th then I will have 16 radiation treatments. A couple times I’ve had to have 3 weeks between treatments after starting the every two week schedule. Once, because my white blood count was too low and once because I caught a 24 hour bug and got dehydrated the day before treatment.
When I started treatment I was really worried about everything. Would I get sick, would I lose my hair, would I be too sick to work, would I get constipated. But my major issue in the beginning was constipation which was solved with miralax am/pm the day of treatment and for about 3 days after and 2 senakot S every morning. I didn’t come up with this strategy right away. It took a couple treatments for me to realize I needed to start taking something before treatment and a few days after. My stomach has been upset and jumpy since I started treatment. Not real nausea tho. My hair might be slightly thinner. I have kept a daily log of how I’ve felt each day and it helps to look back and see how each treatment has effected me and there is nothing really predictable about treatment in terms of when fatigue will strike which is often out of nowhere with a two week schedule I am barely recovered from treatment if I had it to do over I think I’d go with the every three weeks
By the time you get to your third treatment I think u will feel more in control of what’s happening and what to expect. I have not experienced much dizziness. I would call it unsteadiness if I move too quickly.
Having a variety of favorite drinks is helpful for me. I hate drinking water but I have gotten better at it. I have some sort of drink in front of me every waking hour.
If you get a chance read back on this thread and there may be something helpful there.
My oncologist has ordered something new to try and combat my jumpy stomach. She thinks a liter of fluid the day after treatment will help. I had my first one today. We will see because nothing I’ve taken has helped with that.
I’m wishing you the best. You might also want to look and see if anyone started a group of people starting chemo in March or April 2018. They might not be on CMF but the day to day thoughts, experiences, etc I have found helpful. On the days I feel pretty awful and sick of this whole thing I can always find someone who feels the same way or worse. Somehow that’s helped me.
Ask any question you have. Good luck, Kate
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Hi Maggie,
When my cancer was first discovered my oncologist and surgeon thought I would just need the lumpectomy and maybe radiation. The first lumpectomy did not have clear margins so I had another 2 weeks later. My tumor/ tissue samples were sent to California and my oncotype score came back at 26 placing me in the intermediate risk for recurrence and CMF was the recommended treatment. I think that everyone I’ve been in contact with has given me choices about treatment I really don’t feel qualified to decide. Do you want a mastectomy, do you want to do chemo and radiation. More than once I’ve wanted to say, why are you asking me what I want, how should I know. I’m 65, in good health and my tumor was small with no node involvement so CMF has less side effects, is tried and true and been around for a long time so there’s lots of research about the treatment and I’m confident that CMF is right for me. I’ve done some of my own research and it’s helped me feel comfortable with the plan.
Do you know your oncotype score? If my score had been lower I would probably just do radiation but with a score of 26 I can’t take a chance.
Good luck to you,
Kate
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Hi Kate, thank you for the information and I'm glad to hear you are approaching the chemo finish line! I will look for a March chemo thread too.
Hi Maggie, I was not given a choice of chemo, however my doctor did say that the 1) if I had a different health profile she might not recommend chemo for me at all and 2) the choice is very personal, everyone responds differently to the specifics they are given. I had an oncotype score of 21, and a 10 year recurrence risk with tamoxifen alone of 14%. For me, I am a healthy 41 years old with two little boys, and that felt too high. The CMF brings it into a 4-8% range. Did they give you any sense of how the recurrence risk would change with different treatment choices? Hearing numbers made it easier for me to decide, although I echo Kate that this journey brings a lot of choices that are hard to make with confidence.
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Kate and Chickadee, thank you for your input. My tumor was T1a, 4.5mm, clear nodes and margins, ki-67 is 5. I don’t have an oncotype score, as they never did that test. They said that test was relevant for hormone receptor positive tumors. MO did send it to CA for the mammaprint/blueprint test, but due to such low tumor volume, the lab couldn’t complete the testing. I have stressed out more from trying to make this chemo decision than any of the other decisions. I have a 2nd opinion appt with another MO next week. I’m hoping she will give some clarity and relate the chemo options to my specific situation.
I had originally wanted to do immediate DIEP flap reconstruction. PS had a CT scan done prior to mastectomy and found a tumor on a kidney. I had to have a partial nephrectomy 3 weeks ago. Luckily, it was also early stage, pT1a. All the doctors say there is no relation between my breast cancer and this kidney cancer, just unfortunate, or fortunate coincidence. This is why my chemo decision has been delayed so long after the BMX, as the MO wanted to wait for the kidney path report and sufficient recovery.
MO said 15% if no chemo; maybe 8.5% with AC-T; 9ish with TC; and 9.5% with CMF. I don’t know if these are just generic statistics, or specific to my diagnosis and health.The only advice he will give is that I have to do what I’m comfortable with.
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Happy Easter to all of you! With a forecast of snow for tonight, it doesn’t quite feel like spring here. I have been researching and can’t find any details on CMF and hair loss, other than “thinning”. How much hair did you lose? Also, did any of you do the cold-capping, even though you were on CMF
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Hi Maggie2,
After 7 CMF infusions I have only had slight thinning of my hair. No one has noticed. I have lost hair on my legs, and that’s about it. When I started CMF my oncologist said she doubted I would lose my hair and she was right. She did warn me not to color my hair until I’m passed chemo because it would stress my hair. I have not done cold capping.
My oncologist also told me CMF is known to cause people to gain weight. I’ve gained weight since December. The combination of chemo, steroids and sitting around.
My closest friends, co- workers, family all know I’m receiving treatment for breast cancer but many, many people I have daily contact with don’t know. I don’t think I really look much different and I guess no one else thinks I look different either.
If you read back through posts no one has mentioned a lot of hair loss with CMF.
Happy East! Our snow is almost gone but it was too wet for the Easter bunny to hide eggs in the yard so we had an indoor Easter egg hunt. It was fun.
Good luck to you and everyone else. Keep posting your experiences. We all learn from each other.
Kate
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Kate, thanks for sharing your experience. I wasn’t sure how the oncologist description of “ thinning” hair actually translates to reality.
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Maggie, I lost about half my hair. I did dose dense CMFx8. It started falling after the fourth session and stopped a month after my last infusion. I never needed a wig but did use Toppik in the front which is where I experienced the biggest loss. That, constipation and weight gain (10 pounds!) were my biggest SEs. Hair is growing back nicely (I’m 9 months PFC), I have a bit of a mullet situation going on at the moment lol
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Hi Maggie, I've had one CMF out of 8 (second one this Friday). The chemo nurse suggested I wash my hair less frequently to help limit the hair loss. She said 2x/week, I might be closer to 3x/week as I feel very grungy with unwashed hair, even with dry shampoo etc. My oncologist said I would notice more hair coming out in shower but others would not notice. I feel that this is the case even after one treatment, but maybe it's because I'm washing it less?
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Hi Everyone,
I hope all of you are getting through treatment with minimal side effects. I had my eighth and final treatment on Monday, 4/9. I’m happy to be done. It felt like forever. My stomach is jumpy and reflux is the worst ever but I know I can get through these next days knowing I won’t be facing chemo in 2 weeks. I see my RO tomorrow for mapping, etc. in three weeks I see my oncologist who will clear me for radiation. My oncologist told me to stay out of the sun this summer. My eyebrows seem to be thinning and my arms and legs have no hair but I’ve only had minimal hair thinning. I definitely have some chemo brain and blurry vision which my oncologist said would diminish over the next few months.
Good luck to everyone. I’ll keep you posted on radiation experience.
Kate
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Hooray Kate! Another difficult step in the journey is done for you! And, you are a positive beacon from the future of done. Best of luck with radiation.
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Kate,
Congrats!!! What a relief it must be to finally be done with CMF. I really appreciated you sharing your ups and downs throughout your chemo treatment. I just had my 4th out 8 CMF April 10th! I'm half way there!!! Thanks to your pointers I have had minimal SE's but hair is thinning but mostly around my hairline in front. I'm anxiously waiting for hair loss on legs! I'll take that! I meet with Sloan RO and Hematologist April 16th. I'm curious to find out if prone position would be best to reduce heart and lung damage for us that areleft side affected. Keep us posted on what they recommend for you.
Best of luck to you in the coming days. Hoping you can enjoy the short reprieve before Rads start.
Michelle
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Hi All, thank you for your feedback. I’ve been busy getting more opinions from oncologists. I was told everything from NOchemo all the way to AC-T. Even the doctors couldn’t agree on CMF, as one said 6 cycles every 3 weeks of IV only and the other two said the more standard route of oral pills then IV for 6 months.
I will be doing the Taxotere-Cyclophosphamide 4 cycles every 3 weeks. I’ll have to see if there’s a group for that regimen that I can join. I really appreciate all the information you offered.
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Good luck Maggie2
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hi I have done 6 out of 8 cmf chemos so far. The reason my doctor pickef cmf is because I have a lot of other health challenges plus I told her I could not handle the total loss of my hair. I do it on Thursday and I'm usually down for the count through Sunday. But don't forget I have other health challenges. My hair has thinned out and stopped growing for a while so I didn't have to color the gray roots- yimy little financial bomud but now they are growing in. I was only nauseous once as that was the one time they did not pre dose me with nausea medication because my oncologist thought it could be the reason I always have a horrible headache the day of treatment. I do get canker sores in my mouth which I really hate however they have this magic mouthwash that you're oncologistcan write you a prescription for. Wishing you the best of luck Aileen
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Hi May, I have done 6 out of 8 cmf chemos so far. The reason my doctor picked cmf is because I have a lot of other health challenges plus I told her I could not handle the total loss of my hair. I do it on Thursday and I'm usually down for the count through Sunday. But don't forget I have other health challenges. My hair has thinned out and stopped growing for a while so I didn't have to color the gray roots- little financial bonus but now they are growing in. I try to wash my hair as little as possible because that's when I see the most coming out in the shower . I was only nauseous once as that was the one time they did not pre dose me with nausea medication because my oncologist thought it could be the reason I always have a horrible headache the day of treatment. I do get canker sores in my mouth which I really hate however they have this magic mouthwash that you're oncologist can write you a prescription for. I also do the neulasta onpro which really doesn't seem so bad to me. I hate the commercials because the woman looks like she's going to drop any second and I never feel that way. If you have any other questions please feel free to ask
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Hi May07, I have done 6 out of 8 cmf chemos so far. The reason my doctor picked cmf is because I have a lot of other health challenges plus I told her I could not handle the total loss of my hair. I do it on Thursday and I'm usually down for the count through Sunday. But don't forget I have other health challenges. My hair has thinned out and stopped growing for a while so I didn't have to color the gray roots- little financial bonus but now they are growing in. I try to wash my hair as little as possible because that's when I see the most coming out in the shower . I was only nauseous once as that was the one time they did not pre dose me with nausea medication because my oncologist thought it could be the reason I always have a horrible headache the day of treatment. I do get canker sores in my mouth which I really hate however they have this magic mouthwash that you're oncologist can write you a prescription for. I also do the neulasta onpro which really doesn't seem so bad to me. I hate the commercials because the woman looks like she's going to drop any second and I never feel that way. If you have any other questions please feel free to ask
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For ladies seeking information about CMF experiences, I posted a message to another forum and thought I would share here an update on my experiences so far.
I am on CMF, 8 rounds, every three weeks. I've had 2 rounds and have my next on May 4. The infusions themselves were uneventful once the nurse got a vein, as I am hoping to avoid the port and have veins that make the phlebotomists cringe. I got steroids in my IV which hops you up for 24 hours and makes you want to eat a lot of carbs. Week 1 I feel the worst, week 2 middling, and week 3 I felt really normal and good and went to the gym twice for the first time since January. Round 1, I had unpleasant dizziness the first week, hasn't returned. Unfortunately, this round my kids brought home a 24-hour stomach bug (for them), which of course I caught and it turned into 2 days and an overnight at the cancer center hospital, because it just decimated me and I had to be treated for dehydration and electrolyte loss as well as be tested for all sorts of things. Happily resolved and I am back to "week 2 - middling" feeling. The chemo-compromised immune system is really unfortunate!
As for preparation, I think there are a few categories: emotional, body logistics, and adjusting expectations. Here's how they each struck me.
Emotional: plenty of rage at the long haul this cancer treatment process is, lots of tired of being tired, gratitude that there is a treatment that seems kind of standard and expected to be effective, and some joy at the week 3 feeling.
Adjusting expectations (especially week 1-2): do less, and then do less again. Walk more slowly. Sit on the subway always. Buy lunch at work and not feel bad that I would always pack lunch before this. Get in bed early. Take sick days at work or work from home when needed. Accept all help offered, ask for help if not. Schedule so much extra babysitting support that I never would otherwise. Ignore all messy areas of the house. Attempt no other life projects (organizing kids clothes, for example).
Body logistics: chemo seems to strike people with a lot of GI issues, either diarrhea, constipation, or both at various points, so good to stock up and have remedies for those in the house. I found Colace and Miralax useful. I also have need the dry mouth mouthwash (nurse recommended using 3-4 times/day) - Biotene or similar, and the dry mouth lozenges for sucking in between. Nausea has been controlled by the ondansetron prescription they wrote me. My hair is falling out so they suggested washing less; I am not expected to completely lose my hair and I think that's an extensive topic in itself. I found hydration very important; round 1 I felt best when I had a water bottle by my bed and drank before I even attempted to get up. Round 2 I've had less of a taste for water, drinking watered down lemonade a lot. When the steriods are in effect I want to eat a LOT, so being mindful of not doing that. When they wear off I want to eat hardly at all, so being mindful to take in small meals or snacks regularly to keep energy up. Trying to make healthy choices as when eating less, every nutrient feels important. Also have tried to take walks, however short, almost every day, as they say exercise helps battle the fatigue. Also seems like each round might feel a little different and I've been to told to expect the fatigue will be cumulative. Also expecting "chemo-pause" (night sweats, etc. as well) but haven't gotten there yet. Also I am avoiding germs as much as possible, washing hands obsessively, using hand sanitizer, and I have a good hand cream in my desk at work as my skin is crazy dry. I was told to avoid the nail salon as it's easy to catch infections in your finger/toenails. Was also told to be vigilant about sunscreen and wear hats/protective clothing as your skin is more sensitive to sun.I hope this is helpful to my sisters in this journey!
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2002chickadee,
Sounds like you’ve got a good handle on everything and you are realistic and prepared. I finished my 8th of 8 on 4/9 and I will be seeing my RO tomorrow. So far I have kept my hair, my stomach jumpy feeling continues and I am trying to walk every day. The fatigue is cumulative and comes on unexpectedly. I’ve develpoed a cough and who knows what that’s about. I’ll ask my oncologist on 4/30 when she sees me one more time before I start radiation. I’ll be getting 21 treatments. The fatigue is depressing but I’ve got a great friend who doesn’t let me dwell on it. I’ve been working but needed to come home an hour and a half early yesterday because I couldn’t concentrate and I felt like I was moving through molasses. It’s an effort to think straight to write this but I wanted to acknowledge your post and wish you good luck as you move forward.
Kate
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hi all - I am fairly new to this site and am happy to hear about others experience with CMF, it isn’t as common and hard to come by hearing about what it is like. I had #2 of 8 treatments last Thursday. I am happy I had less side effects this time- no intense headache or dizziness that was from the nausea pill. I skipped the pill this round. I am so tired today, Wed., 6 days afterwards which is frustrating to me. I was more active but still low key on Monday and Tuesday... maybe I’ll over did it? How much more fatigued should I expect with each round? I have a long summer to go yet
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Hi! I am also from upstate New York! I had a lumpectomy in March 2018, for IDC, Stage 1A, ER+/PR+, HER2-, no lymph node involvement. They got all of it and I thought I was home free until I had an Onkatype of 24. So, now 16 weeks of chemo followed by 4-6 weeks of radiation.I have had 2 rounds of CMF so far. I battle with some nausea and plenty of fatigue. The day of the actual infusion I get sinus pressure (from the Cytoxan), feel light headed the rest of the day, and sleep on the way home from treatment. The second round kicked my butt on Day 1 and I was up most of the night dealing with stomach pain, sinus headache, hot flashes, and nausea that made me salivate. None of the meds seemed to help but I was better the next morning. I am a little nervous about my 3rd round in 2 days. I have to agree with the worst part of the treatment being the constipation. 5 days this last time with enough Colace, Senokot, Miralax and high fiber foods that I thought I would be in the bathroom forever. It didn't work until the 5th day. Makes me think it's not worth the nausea pills.
Other than that, I feel pretty good the second week. I try to exercise every day, except the day of treatment. Maybe that's what is helping me to feel pretty good. I don't know. Oh, and I drink enough water to drown a small animal every day. Luckily, I have no side effects from the Neulasta. I take Claritin with it just in case.
Although they told me my hair should only thin out, I have lost so much hair already. It clogs the shower drain, comes out in my hand when I touch my hair, and always covers my clothes and whatever I sat on. I'm pretty sure I will lose all of my hair at this rate. Going wig shopping this weekend.
Did anyone else experience any of this? Any help or suggestions would be appreciated!
Thank you!
Melanie
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Congratulations! It must feel great to be done. I am doing the countdown but am only one quarter of the way done. I hope everything returns to normal for you soon!
Melanie
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Melanie, Thank you for sharing your experience. I start in a couple of weeks and Im grateful for all that share to better prepare for SE and hopefully not be to scared if they start.
I have already upped my water intake in hoping to form a habit by treatment time.
Did you have any taste difference? Ive read that chemo can make water/food taste different. Did you find that to be true on cmf?
Thank You ((hugs))
Ri
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Hi Ri,
Best of luck to you. No, I haven't noticed any taste differences yet. I find I really don't like meat much at all, but really was never that big on it anyway.
I think it's a great idea to start increasing your water intake. I prepared a little bit differently than you for my chemo. I went to Florida for a couple of days. The warmth of the sun in March and the sand in my toes helped me to be mentally ready for this next round.Now, I avoid the sun obviously, but it was great re-charging myself down there.
I think the worst is the anticipation of the first treatment. It wasn't nearly as bad as I thought. I'm still working through my treatments and find the first week a nap after work and going to bed early are really helpful.
I hope I've answered your questions.
Melanie
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thank you so much!
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