CMF treatment survivors and experiences
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One week after my second CMF treatment, I am now more tired than on days 3 and 4 after treatment. Seems to be up and down. I will admit I was not a high energy person before the chemo and out of shape, so maybe this slowsme down more? It just seems people do a lot of walking (not sure what a lot is ) and I haven’t felt up to it the past two days. Just going about house activities and trying to control my allergy/sinus sinus issues and anxiety that I “should” have more energy to get out. How tired are people and what is alot if walking to others?
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Rega the taste difference, I started using plastic instead of metal utensils the helps.
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Hi everyone,
Just wanted to post an update and provide support and encouragement. I finished my last chemo on 4/9 and by the end I was so happy to be finished. My jumpy stomach and fatigue continued for about 3 weeks and everyday I kept wondering if I’d ever feel better again. By the time I started radiation I have to say I felt almost normal. I’ve had 15 radiation treatments and I’ve got 6 more to go. Other than fatigue I feel pretty darn good. I have kept most of my hair, just a little thinning, and some foods taste weird, but I really feel better than I thought I would. During the chemo if someone told me I’d feel good again I wouldn’t have believed them but I’m here to tell you that you really will feel better. It was good to have a month to recover from chemo and once radiation started I felt like I could finally see the end of treatment. I’ve had 15 of 21 treatments and they are quick, easy, and painless. I have a little redness but nothing terrible and aloevera and aquaphor help. That combination is a bit greasy but I picked up a package of men’s white tee shirts and they are comfortable to sleep in and I don’t have to worry my pjs will suffer. My fatigue is still present but it seems to show up after I’ve been busy mowing or going up and down the stairs doing laundry. The chemo does make you photosensitive so my oncologist really stressed staying covered up, wearing 100 SPF sunscreen and staying hydrated. I’ve been walking everyday and that has been nice. We have a rail trail nearby so I don’t have to go far to find a nice safe walking place. I do lose my balance so I carry a walking stick which really helps.
Hope this helps to know what I’ve experienced. Everyone is different and your experience may be better and hopefully no worse. I hope everyone keeps writing to let us all know how you’re doing. When I started CMF I couldn’t find a group on this site so I started this one and I hope any new people that enter this group can gain something from all of us.
Good luck to all,
Kate
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Thank You Kate!
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thank you Kate!! It helps me a lot to hear from others on CMF. This is the only place I found others too. I find it hard to find energy to get out and walk even though everyone says it helps. I’ll keep trying, even for a short bit.
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Hi Kate, I was diagnosed this Feb and have the same diagnosis as you except in my left breast. I turned 40 in Feb... I had my lumpectomy in March (tumor was just under 1 cm.) I'm having my 5th round of CMF this Monday. I'm actually going to stop after this treament. I have two small children and aside from the very hard day or 2 after the neulasta, the constipation, very little hair loss, some insomnia and hardening veins, I just feel I reached my capacity. My onc was a 19, and my DR said am in a gray zone as to whether I would benefit, so now I am choosing to stop after round 5. Radiation starts in July (20 within 4 weeks). I've had a cold for a couple weeks but any exhaustion is remedied with bedtime soon after my kids fall asleep. I believe in UK they do 4-6 CMF treatments as standard. I just feel comfortable and trust in my gut that what I'm doing is suffice. Thanks for your thread, it helps to read everyone's experience. All the very best!🙏🏼❤️
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Thank you so much for your post. I am almost a triple negative (2% ER +, PR -, HER2-). It helps to read about CMF as I started with TC on Apr 6, 2018 and had some rare side effects. After Round 2 on May 11, I wound up in the Emergency Room 12 days later with a severe, rare anaphylactic episode, so now I can no longer continue with the TC. My MO has now recommended IV CMF. I'm supposed to start that today. I've had major stomach issues (pain, burning, gnawing) and it's slowly letting up and I'm hesitant to start something different. I'm very concerned because I get the rare, extreme side effects. Just not sure what to expect. Very angry and frustrated with this entire process. Looking more forward to radiation and just want this chemo to be done.
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Hi Robyn1231,
I completed my CMF and initially I was really worried about the whole process. The infusion is relativequick compared to other types of chemo. It usually took 1.5 hours. Two drugs are slowly injected into your IV and the Cytoxin is a drip. Constipation was my main issue and as time went on just fatigue. I took miralax and senakot S for constipation and tried to pace myself. I have kept almost all of my hair and never had any diarrhea and only 1-2 mild issues with vomiting. The whole thing was scary and I kept waiting for awful things to happen. My white blood count did drop really low and the nuelasta pod helped with that. I needed a couple IV infusions of fluid because I was dehydrated in spite of drinking more water and other stuff than I ever had in my life. I am hoping you get through this with no weird issues. I hope you will let us know how you do today. I'll check this site regularly to be available if you have any. Questions I can answer.
Good luck today. I'll be thinking of you. I finish my last of 21 radiation treatments today. Radiation has been a breeze.
Kate
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Hi CMF Bosom Buddies!
I just finished round 6 of 8 CMF. I started with Dose Dense every 2 weeks but after some complications with neulasta ( shortness of breathe) I had to switch to every 3-4 weeks depending on counts. Only side effects have been constipation, hair thinning, some heartburn, otherwise I have kept to my normal routine. Radiation will be 20 treatments of deep inspiration breathe hold as I am left side tumor bed. Oncotype is 33 so I don't fit the new profile of forgoing chemo that was recently released but happy for those who benefit from this study.
Wishing you all smooth sailing thru your treatments.
~Michelle
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hi Robin1231 - I’ll give good thoughts to you me CMF treatment today. I hope it goes well. I too am also having the same milder side effects of slight constipation (prunes have helped me) and more acid reflux which I had before chemo anyway. I take Nexium for it and have eliminated the main high acid/trigger foods: caffeine, tomatoes, chocolate, mint and citrus. Also my anxiety got higher at times due to hormones I think
Kate - when did the main fatigue set in? I have my 3rd of 8 treatments this Thursday.
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Hi Inthegrey,
My worst days were always the day after treatment. I was just wiped out. After a day or two I felt ok but I always had a jumpy feeling in my stomach and reflux. Midway I started feeling like I couldn’t face another treatment because I was so tired of feeling unwell. When I got to treatment number 8 if they said I needed a ninth treatment I would have said Hell No!!! Fatigue in between treatments would come on suddenly and sometimes it was unpredictable. Other times I was wiped out after doing laundry or snow shoveling. Once I finished chemo I rarely had fatigue. Now that I’m past chemo that ended 4/8 and past radiation that ended today I have to say I feel much less fatigue and I’m back to doing almost everything I did before. Now my only issue is occasional nausea every few days. I’m not sure how common that feeling is. I do think we will all have different responses and it has all been very scary and unnerving to go through. Knowing there are other people that have gone thru CMF and radiation and reading about their experiences has been so helpful and encouraging. I will keep checking in if you have any other questions or just want to vent. Good luck to you. This is truly a club no one wants to belong to, but thank god it’s full of helpful, kind people. You’ll get through this. Take care. Sending positive thoughts. Kate
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Thanks for your reply Kate! From you and other posts, sounds like it is very, very tiring by treatment 5/6 to 8th. I too find fatigue comes on suddenly weeks 1-2, especially after an activity around the house -laundry, cleaning, etc. Week 3 so far, I feel like my normal self.
I read the report from New England Journel of Medicine and based on my Onco score of 21 and age (51), I feel I need to stick through this. My score/age are just over the cut off in the Table 3 chart. I liked how they broke scores down further for those age 50 and under - great detail for anyone in the grey area to help make an informed decision. The news didn’t report on that much.
3/8 tomorrow.
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Inthegray, I'm also Oncotype 21, but at age 42 (just turned end of May, so 41 when I started), for me the study confirmed benefits.
Kate, thank you for being the beacon of hope from the future! I am glad your radiation is going smoothly and glad to hear your fatigue seems to be fading.
I'm now halfway through my treatments, and I will say the response has not been exactly the same each time (which is annoying to a planner like myself). The first three rounds I had an energy boost from the steroids that lasted about 24 hours, the fourth round I did not. I am more tired in the evenings for more days than early on, but on the plus side I feel like the beginning 3-5 days are harder and then I feel more like myself for the rest of the time, just crashing on the couch earlier in the evenings and sleeping longer overall. Overall, more energy than round 1 for most of a day, less and less energy for the evenings/nights.
Consistently annoying is the susceptibility to germs. I am fanatic about hand washing but still picking up all sorts of colds etc. My kids have one day of sneezing and it turns into a week long cold for me, or like this morning when I work up with conjunctivitis in both eyes! These are hassles and irritations, not serious. I did unfortunately catch a GI bug from them them after my second infusion that turned into two days and a night in the cancer center thanks to horrific diarrhea. This seems avoidable for most, however!
Exercise: I was a pretty consistent exerciser before cancer and I feel highly motivated to get back to it to try to put all the body changes behind me in some way (more the surgery changes than chemo). I have been able to work up to riding a bike 45 minutes to work once or twice a week -- I started slow at the gym, 15 minutes on a stationary bike and added 5 minutes at a time over probably 4-6 weeks. Then I started outside and went about 30 minutes until I could slowly add more (we have a bike sharing program in NYC which is great because I could just get off the bike and leave it when I got tired). I am also trying to do strength training 2-3 times a week, building off the program I was given in physical therapy, adding in some more legs and core work to try to begin to build back to something where everyday challenges are easier. I use very light weights and aim for high-ish reps (10-15). The hardest part of exercising is bringing my brain in sync with what my body can do now -- not pushing myself, not expecting much. Celebrating every time I exercise as the victory, not what I did. In week 1 post-chemo I don't do much more than try to walk 20-30 minutes each day. I do think my commitment to exercise has helped my energy tremendously.
Anxiety: after the GI bug incident, I found myself having borderline panic attacks when I went to the cancer center. So now I make sure I have someone with me when I go, thankfully my husband and my sister have had me covered, even if it's just for a blood draw or something minor. I also take anti-anxiety medication at night before sleeping for 3-4 days prior to infusions. I also have found guided meditation helpful (either Headspace app or thisiskara.com). It also feels really good to be past the halfway mark.
Hair loss: fistfuls of hair have been coming out when washed since the first treatment. I've cut back to washing as little as I can (every 2-3 days). I can tell the difference and see the thinning but my sister says she can't tell. I think this is one of the positives of CMF, hair loss is generally less. I was told the hair loss would taper off and the last shower I took there was less! I am hoping it is a trend!
Constipation / diarrhea / appetite / drinking issues: I've had all of this, constipation helped most by miralax and high-fiber foods like prunes or flaxseed, also Colace to soften stool. This usually goes away within the first week after treatment, depending on how many anti-naseau pills I need. I found that salads can give me diarrhea, so I'm eating more grains and less greens in general, and if I'm having an upset stomach day try to eat blander foods. When I have "metal mouth" and drinking water is hard, I've switched to watered-down lemonade and not worried about the sugar. I have noticed my appetite is less, and so I remind myself to eat regularly as I do feel worse if I skip a meal. Sometimes it seems like the "stop eating" switch is broken in a new way once I start, so trying to be mindful there too.
Creaky knees: this is a thing. A chemo nurse told me one of the drugs (I think the "M"?) can give you joint issues. I notice it mostly when exercising, in which case I stop the exercise or lighten the weight, or when playing with my kids, in which case I try to change position.
Wishing everyone a happy weekend and the very best with their treatments. I will also continue to post here for reference and check for questions!
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Hi all! I start tomorrow. I am curious how you feel right after the infusion. I want to be able to drive myself home
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Hi RiRi11,
I had my first CMF infusion on 12/5. I had a sinus pressure feeling and felt fuzzy headed. I probably could have driven myself home but I’m happy I didn’t have to drive. The infusion took about an hour and a half. Some of the earlier posts on this page will give you more information. I kept a log of how I felt, what I did and drank, etc. Everyone experiences chemo a little differently. My main complaint was constipation, solved by miralax and senakot, and a jumpy burping feeling in my stomach solved by nothing. I kept my hair, gained about 15 lbs.(thank you steroids) and never had diarrhea. So all and all not bad but when you are going through treatment it’s all a little scary. I wish I could have read everything written on this thread before and during chemo. There was no CMF thread so I started this one. There are lots of good people here all at different stages of chemo and treatment so ask any questions you think of. Good luck tomorrow.
Kate
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thank you Kate :
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You'll definitely fine today RiRi11! I was very anxious before my first treatment. One thing no one told me, at least for mine, was you can an tingling/itchy feeling “down there" for a few minutes when it starts, then it goes away. I can't remember what drug/steroid did this. I too was happy to have someone accompany me home. I stay hyped up on the steroids for a couple of hours, then get really tired and stay in bed all day afterwards. Good luck!
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hi 2002Chicadee - I too am in nyc on the UWS. I’m guessing you are at MSK for chemo since CMF is preferred by them and not as much elsewhere? That’s where I go and am with Dr. D’Andrea. Kudos for you for being so active! I’m not, even before chemo, but have all the best intentions. So a 20-30 minute walk the week over chemo sounds daunting to me. I do what i can.
I find your posts of side effects helpful too in addition to 19501952. I just completed 3/8 and have the same side effects as you, but no joint/ creaky knee issues so far. My appetite is less this round as some foods just turn my stomach thinking about them - baked chicken and eggs are two of them now! Ugh. I also started infusing water, with melons to go down easier. I dint have a problem before. Ginger tea is also good.
I only wash my hair 2 days a week with cool water and sleep with a satin pillow case and just have increased shedding. Not too bad.
I see you did Diep flap as well and will read your posts later on as I decide about reconstruction. I decided silicone is out for me after reading about implant sickness since I’m already sensitive to some chemicals. Not sure I am tough enough for Diep.
Hope your weekend was good!
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Hello,
I’ve just completed my 4th CMF treatment out of 8. I am loosing sooo much hair. I feel like after this one I’ve lost the most amount of hair. I do still have some left but other people i have spoken to have said they didn’t lose much hair but I am losing sooo much. Did anyone else have this? Does the hair grow back at all while I’m having treatment. At this rate of hair loss, I’m pretty sure I won’t have any hair left by the 8th treatment. Can anyone offer advice or have similar situations? My doctor swears she’s never had a patient lose all of their hair on CMF but I’m beginning to think I may Be her first.
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Hi Daisy - I’m sorry to hear this is still happening to you. I’m glad you found this thread I mentioned to you. Keep in mind, it does grow back after treatment and you are taking care of your health first and foremost. Do you have fine, thin hair to begin with? I think insurance will cover a wig if you think you may need/want one. Could you do the cold cap at treatment to help prevent this?
Hopefully someoneelse here may have had a similar experience. Btw, I cut my hair quite short and layered before starting CMF so it is wash and go, with no blow dry or styling products. People just think I did it for the hot summer weather.
Please see the post in this thread from 2002Chickadee on June 8th, she had more hair loss at first and then it tapered off once she cut back washing it. Keep us posted if you learn more.
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Good Morning All,
I had my first treatment on Monday. Monday and Tursday were not bad (I am assuming the Steriods played a part in that) I took the Claritin which I think helped because I never experienced ‘aches’ from the Nuelesta shot. Wednesday I returned to work and was uneasy all day, nausea and tired. I took the anti nausea medication and could only eat crackers, I also had a hard time staying hydrated Wednesday. Slept from the moment I got home from work until the next morning Thursday was the same (nausea and tired). Friday morning I felt better and also washed my hair. I did not notice any hair loss aside from my normal shed (my hair is thick to begin with) I did expierence terrible diarrhea Friday night. I feel much better today (Saturday) and even walked 2 miles this morning.
Hope you are all well ((hugs))
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Does cold capping help with hair loss with CMF? I am going in to see a MO at MSK (Sloan Kettering) for first time today - had to wait to get oncotype back. I was just told that if she recommends chemo it will probably be CMF, which is an MSK thing. I was very surprised as I was expecting TC based on all the reading I had done. I just learned that hair loss is less under CMF but can still be significant. I was already prepared to cold cap with TC, so if it helps at all with CMF hair loss I am ready to do it
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Staceybee,
I just finished my 7th round of CMF Oncotype 33. My local hospital in upstate NY was recommending TC but fortunately I went for 2 nd opinion at MSKCC and they started me on CMF and have minimal hair loss. Nobody notices but me!! No cold capping was needed. My MO at MSKCC is Dr Sklarin. Best of luck to you today!
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hi Staceybee - I’m at MSK too with Dr. D’Andrea. and have had 3/8 treatments. My Oncotype is 21 and chemo was optional. My first opinion at Weill Cornell was also TC and I went with MSK because they recommended CMF which gets the same results as TC but much less side effects. CMF is a first generation chemo developed in the 70’s and is what the Oncotype type was based on. They have success with it and still use it. TC is newer and seems to be used more often and I’m not sure why. “Institutional preference” is what the breast oncologist said at Weill Cornell. Ask the question at your appointment.
I have had very little hair loss, just increased shedding. Most likely they will not do the cold cap with CMF since usually hair loss is not noticed and very minimal. I suggested it to Daisy since her situation seems to be an exception. I think it is rare. Wait and see how you react, everyone is different. Tip- wash your hair much less, 1-2x week and no blow dryer. This helps. Best of luck and let us know how it goes.
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Hi all, yes I'm at MSK too with Dr Gucalp. I'm on a Friday infusion schedule, DM me if you are too we can say hi at the breast center. I didn't know MSK tends to use CMF more than other places, I did wonder why since it is older but with all the questions you have in this process somehow I never asked that one. I also found it comforting that it was what was used on the Oncotype projections.
After 5/8 treatments, my hair is markedly thinner to me, especially around the hairline and the part, and when I grab all my hair together it feels like half of my old ponytail volume. However, other people don't really seem to notice, and the nurse told me I must have had very thick hair to start as it didn't seem noticeable to her. She's probably being nice! But I'll take it
And yes, the hair loss slows down. They told me it'll start to grow back a few weeks after chemo ends. RiRi11, I think the first round is the worst in some ways as you don't know what to expect. I am not on neulasta though, are you on a 2-week cycle? While I don't enjoy the side effects at this point they at least aren't really a surprise, more like same old s***. I am eating a bowl of white rice for lunch today as I type (6 days post-infusion) because of the diarrhea lingering around. As a general update, I would say it feels like the post-chemo hole you fall into is a little worse each round, lasts a little longer too, but I've been finding the rebounds faster and better, more energy in weeks 2-3. Wishing the same for everyone!
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Hi 2002chickadee,
I am on a two week Cycle (also a MSK patient) round 2 is on Monday. I really have had a good week. That said, Ive cut sugar, coffee, high fat out of my diet and make sure I walk every night. I dont know if thats what is keeping the side effects at bay but I’ll keeping on doing it (I’m overweight so a healthy lifestyle was overdue)
I cant remember if you mentioned anything about menstrual cycle changes have you had any? Do we go into chemopause on CMF? I havent had hot flashes so Im curious.
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Hi all - wow, including myself there are 5 of us doing CMF at MSK. That shows you that they are a bit unique and to me concerned about the effect/quality of life on the patient as well, as long as CMF is appropriate to the diagnosis.
2002Chickadee- I like your description of a post chemo hole, that exactly describes it to me as well! This wk2 post infusion, I’ve bounced back better than after the first two treatments. I’ve not had the diarrhea, but slight constipation at times. Nothing that some prunes can’t fix. I take a probiotic daily fyi. I was a bit nausea after #3 that I didn’t have before too. I hope you feel better soon and remember to get some protein with the rice. I’ve had bone broth when My stomach doesn’t feel well...goes down easy and high in protein. Just a thought.
RiRi11 - best wishes for Monday. That great you are every 2 weeks and tolerating the Neulasta!
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Hi Everyone,
It sounds like most of you are all handling chemo well. I’m so happy to hear this. Just an interesting tidbit. My oncologist here in Albany New York came from MSK and she and my oncotype score determined CMF would be my chemo. I finished my chemo on April 9 th, 8 rounds of CMF every two weeks with a couple delays due to low WBC, and I finished my 21 radiation treatments on June 4th. During chemo I never thought I’d feel good again and even after chemo was over my stomach still bothered me. Radiation was easy. Now and for the past week I have to say I almost feel as well as I did before my diagnosis last September.
Good luck to all.
Kate
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Kate, Congrats on completing your treatments
Inthegrey, Thank You!
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round #2 day 3 it hit me hard. Slept most of day 3 & 4. Feeling better today.
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