CMF treatment survivors and experiences
I’m starting CMF on 12/5/17. I’m 65 years old. I haven’t been able to find many/any people with a similar course of treatment. Mine will be 8 sessions spaced 3 weeks apart. If you have any information about this treatment I would love to hear your thoughts.
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Hi - I had 8 rounds of CMF chemo spaced 2 weeks apart at the end of 2016. It was a very manageable treatment - I continued to work through my treatment. Had chemo on Tuesday afternoons then worked from home on Wednesdays and back to the office on Thursday. I was the sickest with the first treatment and then a little less sick with each additional treatment. Sick being nauseous the day following treatment and not being able to eat or smell food - by treatment #4 this passed. They told me to drink lots of water to flush my system - which is hard when you are nauseous. The worse part was the Neulasta Onpro shot - which self injected the day after chemo - that shot made me feel sick and made by long bones ache horribly. Tip from a chemo nurse was to take Claritin (regular) beginning the day before chemo and continuing for two days after - they don't really know why, but the Claritin works and alleviated this pain. I did not lose my hair - though it did thin some, but came back once treatment ended - I do take biotin. I never got any kind of mouth sores, just some dry skin - Lubriderm helped that. I didn't have a port. Though I continued to work through my treatment - once I got home each day I was in my pjs by 5pm. The treatment made me very tired - not my mind, my body. I was also very sensitive to smells - had to ask a coworker to stop using her scented hand lotion and my husband to not cook on treatment day and day after.
Let me know if you have any specific questions I can answer. Best of luck to you.
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Thank you, MeMyself17. What you experienced is reassuring. I am hoping for the best and will have to ask about the Claritin. Thank you, thank you!
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Hi MeMyself17, wish me luck. Tomorrow is the big day. I'm sure I'll have a few questions for you. One right now is why CMF? But from what I have read and after your post it does seem we are in the minority. My oncotype dx score was 26 and I'm 65. Maybe that's it? I'm trying not to overthink this. I feel relieved treatment is finally starting. All the best to you. Kate
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Hi MeMyself17
chemo went fine. I feel a little light headed or just weird headed but otherwise fine. Actually I think I do have a headache now. I’ve been drinking water, milk, juice,flavored water. I have had more water than I’ve ever had. I’m thinking right now that I’ll go to work tomorrow but I’ll see how I feel. Did you have radiation after chemo? I’ll be getting 16 treatments after chemo. Kate
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Hi Kate - Glad your 1st treatment was ok. CMF was what my oncologist recommended - my oncotype score was 25, my tumor was stage 1A and small - but a grade 3 - so dr recommended CMF due to oncotype score and grade 3. Dr told me it was not a heavy duty chemo but that I should do it. I was shell-shocked - with the input and support of my family and trusting my oncologist I went forward. I don't feel like I've had any long-term side affects from the chemo - other than creaky knees. My knees never made noise before - weird right? Are you doing the Neulasta ? That was as bad as the chemo - but again onc said it was a must. I never felt too sick day of chemo - was always the day after. Hopefully it will be different for you. I am wishing you much luck. BTW I am 57.
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Hi 19501952,
I had cmf years ago and it was not bad at all. I was 49 at the time. Treatment spread over 6 months, and my treatments were usually on Thursdays. I felt well enough to go to work on Friday, and had the weekends to recoup if needed, but I didnt need to most of them time! I kept most of my hair, worked throughout, and most people never knew I was undergoing treatment while on cmf. I did, however, try to eat carefully the few days after each round, avoiding greasy or heavy foods.
I hope that you, too, find it a very tolerable regime!
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hi AnotherNYCG,
Side effects have not been too bad. I stayed home day after treatment and went to work yesterday. Constipation seems to be my biggest problem right now. I took a ducolax last night and this morning and so far no result. I’ll be staying home this morning until something happens! I really appreciate you sharing your experience with CMF. The first day I was foggy headed and felt congested. My oncologist said I didn’t need nuelasta yet and that we would see how my blood work looks on 12/15. Hope you are well and your day is a good one. Kat
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Hi MeMyself17,
I’m 65. My oncologist told me I’m a young 65 and she wants me to live to be 90. I’m not sure that’s my goal as all my friends/family are older than me but her comments were encouraging. My only issue right now is constipation and I’m home from work today hoping something will happen. It means a lot to me that I can connect with other people that have gone thru this treatment and I thank you for sharing your experience. Kate
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Thanks for connecting me to this group. I really appreciate hearing from others that have had CMF. I’m doing ok. Some constipation and tired, and nausea that seems to be reflux. The reflux seems a bit worse each day. I’m planning on calling oncologist tomorrow to see if there is anything I can take. Kat
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Hi there, I am 52 years old and had the same chemo course. Looks like you would have started already. I had mine from Jan 2016 to Sept 2016. I hope you are doing well!
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Hi Lauralou102,
I started my first treatment 12/5 and the 2nd on 12/27. I will have blood work 1/8 and possibly treatment # 3 on 1/9. I’m a little worried about going to an every other week schedule vs every 3 weeks since it has taken a little over a week to feel almost normal. The infusion has been the easy part but the constipation and jumpy stomach and reflux have been hard to handle. Yesterday I felt like my hair/head hurt and today it’s a little worse. I haven’t notice much thinning and according to my oncologist I shouldn’t lose all of it but who knows. After chemo I will have 16 radiation treatments and then some type of hormone. Would you mind sharing your experience on CMF? I’m from upstate New York. I hope you are doing well and I appreciate you taking the time to respond. Kate
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Hi 19501952,
I completed my 4 rounds of CMF ( 3 weeks apart) in Feb. 2016, and then 20 radiations.
I just went over my notes from the experience and have some information that might be of help.
The best help for constipation, was and still is a combination of CALM and Benefiber. Two powders that you mix together in hot water and sip after dinner. The recipe calls for 1 tbsp, which seemed like a lot so I started with a scant half tsp of each, knowing I could increase it each nite if needed . It was and still is, great. As for nausea, I was given a host of pills for possible nausea, or dizziness, or cramps, or reflux, or diarrhea ,all for just in case. I was advised, wisely to take the indicated pill at the very first hint of discomfort . Don't wait until it is full blown. Doing that really helped, though I did not need anti nausea very often,and did not need the other pills.
They have so many great meds these days. there is no reason to have to suffer. Took Claritin before and several days after the Neulasta injections and had no bone or any pain.
There is no medication for the exhaustion. I had my infusion on Fridays. I was in good shape on Saturdays, and crashed on Sundays. Monday I was back at work.
I have all kinds of other helpful hints I learned from the CMF board that I was talking with at the time.
If you have any questions, please let me know. I have not checked this board for a long time, but I will now.
A big hug to you all,
Windward
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Thanks Windward,
I really appreciate the hints. I couldn’t have my 3rd infusion on 1/9 because my wbc was 1.79. My oncologist ordered a nuelasta injection and I spent most of the week feeling like I had the flu or a cold but no bone pain. Yesterday, 1/22 my wbc was 5.7 so I received the infusion and other than a headache and hoarseness I’m feeling ok. Just a little jumpy stomach. I got a nuelasta on pro placed and it should go off at 5:40 today. I’m trying to drink as much as I can and sometimes I just hate the thought but know I have to do it. I’m 65, and the other board I follow is starting chemo Nov 2017. Many of the gals are young, none are on CMF. But many are taking the same meds I have for nausea and reflux. I used senekot S and that has really helped. When chemo is over I’ll have 16 radiation treatments.
I guess the question I’d really like to ask is how are you doing now? Any lasting side effects, chemo brain, or any of the other awful things we worry about. I’m worried about the chemo brain combined with my 65 year old brain. And, of course, does CMF really work. My oncotype score was 26, which even surprised my oncologist and she felt with CMF I had the best chance for a cure. I never hesitated with the decision.
Thanks again, Kate
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Hi Kate,
I would be glad to answer your questions and tell you my experiences. i think it makes sense to do it via private message, which I will now do, so check your mailbox.
Windwar
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Hi Windward. I agree this is the best way to communicate. I hope my response wasn’t lost. I don’t see it here. If it doesn’t show up I’ll do a rewrite later today.
Kate
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Hi all,
I am starting CMF in just about two weeks, March 1st. I'm doing the every two week schedule, with neulasta. I'll be going through this on my own, so I would appreciate hearing any tips from you ladies that started earlier in January. I am 50, but I have some heart and BP issues which made other chemo inappropriate for me. I've got to keep working through this and other than for the first session, I will need to be driving myself to and from chemo on my own. Were you able to drive on your chemo days?
Thanks for the advice.
Dagny
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Hi Dagny,
Welcome to this (small) group. I’m 65, my oncotype score was 26; and Istarted my Chemo 12/5/17. I don’t have any underlying conditions, but I did have a couple vices. Drinking a beer or two a day, and smoking. My oncologist made it very clear that I needed to limit myself to 1 drink per week which we negotiated to a few a week and to stop smoking. I don’t smoke much. Less than a pack a week. Initially I started on an every 3 week schedule without nuelasta. Then when my white blood count got critically low my oncologist gave me a nuelasta injection and set a new infusion #3 date of 1/22/18. By 1/22 my counts were great and I received a nuelasta pod after that infusion. A little heads up about that. It worked flawlessly and after it was placed I never felt a thing, but that happy lady in the commercials obviously wasn’t filmed when it was placed. Two minutes after it’s placed you’ll feel a BIG prick and I wasn’t prepared for that. It subsides immediately but it was quite startling.
Here is what I learned. Take Claritin a couple days before nuelasta pod and a few days after. People have felt bone pain but I have not had that problem. Claritin is an antihistamine and some magic happens and it helps curb bone pain.
The drugs are constipating. It took me a few treatments to realize I needed a better bowel management routine. I take a dose of miralax morning and nite and two senakot S at night. I started 2 days before chemo #3 and #4 and it kept constipation to a minimum. The anti nausea drugs and steroids are also constipating but absolutely take them as instructed and hopefully a bowel management protocol (mine or something your oncologist recommends) will prevent constipation.
Get a variety of your favorite drinks, juice, water, flavored water, ice tea, lemonade and some popsicles. You need to drink about 2 quarts of water, etc each day starting a few days before your first infusion. I say get a variety of stuff to drink because even if you love ice tea you will get tired of the same drink. I’m much happier alternating what I drink. I have never been a big water drinker and there are days where I look at a glass of lemonade and want to throw it across the room. Once this is over I plan on consuming less fluid but you want to stay hydrated and my oncologist said make half of your fluid water and half other stuff. The popsicles come in handy when no other drinks sound good. If you are hydrated your veins are plumper and easier to start the infusion. Bring a little blanket or sweatshirt or sweater in case you are cold and ask for a heated blanket. It’s comforting to be warm.
If something doesn’t feel right once the infusion starts make sure you tell the nurse. The first infusion you have they will probably tell you exactly what they are doing and how it will feel. It shouldn’t hurt, it shouldn’t burn or sting, and if you start to get a slight headache tell the nurse. Sometimes they have to slow the infusion. My total infusion time is about 1 1/4 hours. It’s pretty quick compared to other chemo. The drugs that are in a syringe and go in via your IV are timed and injected slowly. By that I mean 5-7 minutes each. Bring some water to drink, a snack, gum or hard candy. It will give you something to do. Lots of people bring their iPads, books, or magazines. When the infusion is over it will beep and you’ll be unhooked.
I probably could drive to and from chemo but I have a friend who comes with me and does the driving. Usually the day of chemo I feel pretty good and the day after but about day 3-6 I am tired but able to work. If your blood count is low you will feel extremely tired and you need to rest and stay away from people or wear a mask. If you can plan chemo on a Thursday you will have the weekend to relax. Sometimes that’s not possible.
My major complaints (aboutCMF) are all the people who will tell you how easy it is because sometimes it isn’t easy. The constipation was concerning until I got on the right pre chemo and post chemo routine of miralax and Senakot S. I hate all the fluid but that’s just me. I have had an ongoing jumpy feeling in my stomach causing me to burp often. It’s annoying. I never had reflux but I do now and I’m taking ranitidine for it 2xs a day. I have not lost my appetite, I have not been nauseas to the point of vomiting, and I have not had diarrhea. I do have general fatigue and by the end of the work day I’m ready to put on my pjs.
I’m sorry you are doing this alone and I would be happy to support you any way I can. I’d also suggest you do some shopping and get things in your house that are easy to prepare and handy. I have not lost my appetite no matter how jumpy my stomach has felt. In fact my oncologist said CMF actually can increase your weight. I’m living proof, but it might be the cookies and root beer floats.
Good luck to you. Let me know if you have any questions about anything. I have found the groups here to be very supportive and the search feature will point you to lots of information.
Best to you, Kate
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I am also new to CMF. I start February 27th every two weeks for 8 rounds. I bought out the pharmacy yesterday trying to prepare for the days ahead. I've been told to keep Imodium close by. But it appears most are having constipation. I really appreciate everyone sharing their experiences with CMF.
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Welcome Shell07,
Constipation and reflux have been my biggest problem. I just had chemo #5 on 2/19. My new routine to ward off constipation has been miralax morning and night and 2 senakot S at night. I started a couple days before treatment and continued for 3 days after and I’m happy to say I didn’t have any constipation with this round of chemo. If I could solve the reflux, burping, jumpy stomach I would be very happy. Today I’m trying Prilosec instead of ranitidine. Everyone experiences chemo a little differently. I’m sure age has something to do with it. I’m 65. My oncotype score was 26.
Good luck to you. Keep us updated and feel free to ask any question.
Kate
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19501952
Thank you so much for the pointers. I will get prepared. My MO only mentioned loose bowels. So I have plenty of Imodium on hand. I was told I won’t be getting steroids with chemo infusion. Also they said neulasta would be as needed not every infusion. Is that what you are experiencing?
I’m anxious to get the first round done and grateful for all that you share.
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Hi Shell07,
I haven’t had any diarrhea, but like you, I’m prepared for that. I’ve never had any issues with vomiting, just a nauseas feeling from the reflux, burping, and all of the water drinking.
The first two chemos I had were spaced 3 weeks apart with the plan to go e/o week depending on my response. My white blood count has dropped by the 7-8th day after chemo and I got a shot of nuelasta 8 days after my blood work showed the low wbc. My oncologist scheduled chemo #3 for a week later and my counts were great. I had the nuelasta onpro placed after chemo #3 and I also had it after chemo #4 and #5. Getting it after each chemo should keep your counts from going low and staying low. Now my chemos will continue every two weeks until I complete chemo #8. Following chemo and about 30 days in between I will begin 16 radiation treatments. A lot of people have had bone pain from the nuelasta and suggest taking Claritin a few days before chemo and a few days after. I’ve done that and I haven’t had any bone pain. The nuelasta stimulates your immune system which creates histamines. The Claritin is an antihistamine and will prevent bone pain. Don’t take the Claritin D. Just take the regular Claritin. One more thing about the nuelasta. If you’ve seen the commercials of the lady and her husband so happy she has the onpro I think they should show you the look on her face when the onpro sticks her in the arm 2-3 minutes after its put in place. I think knowing I will be stuck by a tiny tiny needle in 3 minutes makes me overly sensitive and each time the shock of it has almost made me jump out of the chair. It really doesn’t hurt but it does startle you. That’s the only prick you will feel. When it starts injecting the nuelasta 27 hours later you don’t feel a thing.
Drink, drink, drink as much as you can. Best of luck. You will be fine. Ask any questions you think of.
One last thing. Start a daily log book and write down what meds you take,what you drink, and if you poop and how you feel. I look back on it all the time and it helps me to know if I felt well enough to go to work, or if I spent the day on the couch.
Good luck, Kate
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Thanks Kate and Shell and all the other ladies. I get my port tomorrow and then first chemo is two days later on March 1st. I'll also be doing the every 2 weeks, paired with neulasta.
Good luck tomorrow Shell! I'll be 2 days behind you
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Kate and Dagny,
I survived the first CMF round jitters! The anxiety is much worse than the infusion process. Kate- you prepared me well I so much appreciated all your tips. The only SE during the infusion was sinus pressure towards last 30 minutes of infusion. I mentioned it to the nurse she suggested warm compress on face. Declined as it wasn’t that bad. She said it happens infrequently.
Felt really well all day ate lightly and drank a lot of water, ginger ale. Sleep was off and on prob due to steroids included in IV. This morning stomach a little unsettled so ginger tea and saltines. I have my Zofran handy to take as suggested. My neulasta wont start until after blood draw on NADIR day 8 then Neulasta if needed.
Dagny, I hope all went well with your port and wishing you an uneventful chemo day tomorrow!
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Hi Shell07,
Glad your first infusion went well. Don’t wait for any side effect to get severe. If you have meds take them, and if meds don’t work ask for different ones. Good for you to let the nurse know about sinus pressure. I’ve found the infusion nurses to be great and they want you to be comfortable.
Good luck tomorrow Dagny. I’ll be thinking of you.
Kate
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I finished 8 rounds of chemo spaced three weeks apart in April of 2015. All in all, it was doable. I had my infusions on Friday mornings. I was still pretty energetic Friday night because of all the steroids. I started to feel yucky on Saturdays and all but once, had to get a Neulasta shot on Saturday. Sunday and Monday had me feeling nauseous and quite tired and for me, the symptoms built up over time so by my eight treatment, I was done.
About 3 days before and 3 days after, I took a Claritin just in case I needed Neulasta. It helps with the bone paid. The one time I didn't take it, I could definitely feel it in the big bones (sternum, hips, spine).
Constipation and heartburn were constants for me. I found that taking a stool softener three days before and five days after helped, but everyone finds what works best for them. I think I took Pepcid daily.
Infusion days were a bummer, but you get to know the other patients there and form friendships. I usually took my phone for music and books.
You shouldn't feel anything once the infusion starts...no burning, stinging, etc. If you do, tell the nurse. I had a burning sensation in my neck the second infusion and upon further inspection, the catheter to my port had cracked and I had blood clots (this is rare). If you get a headache or start to sneeze a lot, let the nurse know. He/she can make the drip a bit slower.
I worked the entire time through my chemo. I took off on Fridays and Mondays toward the end.
Good luck and please come back with any questions.
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Hi Ml143333,
How are you doing now? Any lingering side effects? Any regrets about CMF? Did you have radiation? Are you taking any hormones or after chemo meds?
My constant companions have been a jumpy stomach, heartburn/reflux, and constapation. I’m still challenged by the stomach issues but I think for now I’ve conquered the constipation. I’ll have chemo 6 on 3/6 and 2 more infusions after that.
Thanks for any info you can give me/us. Kate
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Hi all,
Im starting CMF x 8 next week. To the ladies who are finishing up, how are you doing? I was told I will not lose my hair and that it may just thin and that I will not need a wig or a hair covering. Has this been your experience
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I had the CMF regimen in 2000 during my first bout with breast cancer. I was able to work through the 8 treatments and I didn’t need neulasta. I didn’t lose my hair and my only side effects were a bad metallic taste in my mouth where most foods tasted weird and really bad fatigue by the last two treatments. It was so much easier than the four cytoxan and taxotere treatments I had in 2014 during my second bout. The second time I also had to have the neulasta shot, which was the worst. Even the Claritin didn’t work
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Hi May07,
I’ll be getting chemo #6 tomorrow. So far my hair has thinned slightly but not really noticeable to anyone but me and my hairbrush. I’ve had nuelasta for the last 3 treatments. I take Claritin and so far have had no bone pain. My biggest complaint is acid reflux and jumpy stomach. So far nothing has worked to resolve or even make this problem better. If you read previous posts constipation was an initial problem but miralax and senakot S have kept that problem under control. Drinking water and extra fluids is challenging. I had some type of stomach upset about 8 days ago and with that one day of vomiting I couldn’t have my 6 th infusion because I became dehydrated and had to get a liter of fluid IV. I have never had any vomiting or diarrhea except for this one time. I’m 65 and I have not bounced back as quickly as some others. I’m still working but I usually need 3 or more days of recovery and I find the treatments cause me extreme fatigue. As I begin to recover I have about 4 days of feeling pretty good and then it’s time for another treatment. CMF is definitely doable. As you go through treatment keep us posted and ask any questions you have.
Kate
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