CMF treatment survivors and experiences
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Hi All,
I have a question regarding coloring hair. When can we do this again? Tomorrow will be 3 months post chemo for me. My eyebrows and eyelashes are back to normal. My hair has thinned quite a bit. I think it's coming back a little. Hard to tell when I have lost shoulder length hair and it's being replaced with 1/4 inch hair. My hairdresser normally has used only a temporary color rinse on my hair, not a permanent color. I would LOVE to get the gray hair colored over! Has anyone just used a temporary rinse after 3 months? Any problems with this? How long should I wait?
Thanks!
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Hi Ihatechemo,
I too am getting anxious to do something about my hair color. All my research says to wait 6 months after the end of chemo. Ughhhhh. Maybe we just need to embrace our gray? I had thinning hair, but it seems to still be breaking and shedding more than normal, so I'm very reticent to do anything that may make my hair more brittle. I think that is the biggest risk, damaging the hair we still do have on our heads. Have you considered a new haircut? I wear mine short and think it has been a godsend for hiding the effects of the chemo. Also, at this point, I am 6 months since my last color so I have very little of that color left. With the short hair, I'm starting to see what my real color is. It's been a lot of years since I've seen it. Hahaha
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I'm 4 months out from chemo, and haven't colored my hair in over a year. CMF thinned it considerably, and I've been avoiding the color fearing it will be too harsh. I've been using hair growth shampoo and taking biotin and I've noticed less thinning recently. Not a fan of my gray hair though (has it always been there?) - and my very curly hair is now turning straight! So weird.
Anyone take metronomic CMF? I took oral "C" and had weekly infusions of "M" and "F". I was supposed to do this for 6 months, but stopped after the 5th month due to hospitalization for respiratory failure of unknown etiology. Just found out that I got some of the recalled 5FU that may have had glass particulate contamination - which if I was exposed, can have multiple serious effects. Terrifying. Before the hospitalizaion I did fairly well on CMF. I worked full time and took weekends to rest. I did take Zofran prior to each infusion, and drank alot of water (my goal was always 80 oz a day). I would say my main side effect was fatigue. And I had to have fresh food - nothing packaged or processed and small servings- which is something I'm trying to keep up.
I'm currently on letrozole which makes me feel like I'm 100 (I'm 58). But I'll do anything to better my odds. I try hard not to live in fear and instead focus on things like fresh air, nature, my friends and family, and the community of others facing this disease. Thank you for making me think about my funky hair, reminding me I'm not alone, and making me smile a bit!
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thank you for all of your input! If I do choose radiology it will be less frightening now that I know the impact on you both was manageable. I had a mastectomy with reconstruction. Breast tissue is new and from my abdomen except for the outer portion that they sewed onto. They want to radiate the new breast anyway even though the cancer was deeply inside the breast and nowhere near the portion they saved . The radiologist was great and gave me lots of information. She said the chance of radiology catching any additional cancer in my case was 10 to 15%. I have a second reconstruction surgery in November, which they cannot do if they radiate the new tissue. I know everyone must make a decision based on too little information most of the time. There are no certainties and you just have to go with the best that you know . I am keeping my estradiol level below 13 with the use of DIM since my cancer was estrogen positive. They recommended Aromasin. Does anyone have experience with the side effects of that drug? I understand 30-50% of Aromasin users stop taking it because of the side effects and it has the mildest side effect of the hormone blockers.
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Hi LaurieDPT
I only had a lumpectomy, so I'm sure my radiation experience was the easy end of the spectrum. So glad you got lots of good info from your radiologist to assist you in making a decision.
As for the Aromasin, my cancer was highly estrogen responsive so I need to create a very low-level estrogen environment to keep future recurrence at bay. I started on it 2 weeks ago, and so far have no side effects other than a return of mild night sweats. I'm hoping the hot flashes stay away; I had them for almost 10 years during menopause and am not looking for a return! The worse side effect is supposed to be joint and muscle pain and loss of bone density. I'm a very active exerciser so I go into this with normal bone density (for a 30 year-old) which is not normal for most 65 year-old women (which I am). Make certain they do a bone density scan. My cancer rehabilitation doctor strongly recommended that I commit to 2 days per week lifting weight in addition to my 3-4 days per week of speed walking/hiking. So far no aches and pains from the medicine. My goal is to stay on it for the full 5 years recommended by my doctor. If you have joint/muscle pain, acupuncture has been shown to help in a smallish study (200 women).
I'll check back in a couple more weeks to report my reaction to the Aromasin. Good luck and stay in touch.
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Hi, Starting chemo 12/2. Need advice on CMF or TC effectiveness, not side effects. Oncotype 15. First MO said wasn't sure what to do with me but if I did chemo either CMF or TC. Sent me for second opinion with top doc at research center. She said NO CHEMO. I wasn't at peace so went to Sloan for another opinion. She said YES CHEMO. She said CMF every other week. So my first doctor was agreeable to this plan and I went back to him. But now I am questioning, if I am going to do chemo am I wasting my time with CMF and should go with stronger TC? Most CMF people I have read couldn't tolerate TC. I also read a few CMF stories and those people were Stage IV 15 years later. Is that just a bad coincidence on the stories I read? These recommendations also appear to be consistent with Sloan or CA, which is a good thing as they are ranked No 2 in country.
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Hi JRNJ,
I had a stage 1 breast cancer (diagnosed January 2019) with a high risk of recurrence on the ProSigna (similar to OncotypeDX). I'm 64 and in very good health. My doctor recommended treatment with CMF on an accelerated (every 2 week) schedule with Neulasta rather than TC or ACT. He said there is no data to suggest a difference in recurrence risk among the treatments given my tumor characteristics and that CMF is much more easily tolerated. Your diagnosis is different from mine, but you have sought out 3 opinions and gotten differing treatment plans. Personally, I would trust any oncologist at Memorial. They are the best in the business.
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Hello everyone. I was so glad to find this forum because I will be starting chemo on Dec. 10th. I have lots of fear and anxiety, mostly about getting cancer back because I have triple negative breast cancer.
I am 76, had a lumpectomy in October and am scheduled for eight sessions of CMF three weeks apart. I had wanted to do the next level of chemo, but finally agreed with my doctor that with all my other medical issues, I should do
CMF. Then I will do radiation.I am in California and going to University of California, San Francisco. It has an excellent breast cancer center.
Look forward to reading more of the posts. The insights and tips have been so helpful.
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Hi JRNJ,
My Oncotype score was 21 and I too went to MSK for a second opinion. I saw Dr. Gabriella D'Andrea and did CMF every 3 weeks for 8 treatments. I as a healthy 52 at the time last and my first oncologist had recommended TC x4. BTW - Dr. D'Andrea is mostly in NJ now, but I see her on Mondays in Manhattan. I highly recommend her.
If you want to learn more about the effectiveness of CMF, I strongly urge you to read the TailorX study results published on 7/12/2018 in the New England Journal of Medicine. There are detailed charts I found useful to drill down more than the news headlines let on. The break it down by age and how effective chemo is based on the Oncotype score. This is the first published results from a long term stydiy being conducted for the mid-range scores.
If you cannot find it, I can e-mail it the PDF to you. I think it will help you feel comfortable with your decision.
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Welcome, Jagtag! We're sorry you find yourself here, but we're so glad you've joined our community and hope this can be a source of support for you as you begin down this road. Best of luck on the start of your treatment!
The Mods
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Thanks for the responses and info! Every step of the way I get anxious if I'm making the right decisions. I am glad I went to Sloan, been wanting to from the beginning. I saw Bromberg who also works in city and Middletown. I thought about going there, but stuck with my doctor due to location. I have done a lot of reading on chemo or no chemo, studies, etc..., just not on types of chemo. I am concerned because I am node positive, ILC with lymphovascular invasion. The Tailorx is node negative, which is why I was not at peace with relying on Oncotype to skip chemo because the studies on node positive are still ongoing, the existing studies are on older post menopausal women with small tumors (Sloan doctor said this also which is exactly what I read). I am 54 and pre-men. I also read they think CMF may be good for triple neg, which is not me. I am also concerned because people are saying this is an old regimin that has been replaced with TC, but my dr said it is coming back. Inthegray I'll look for the details you provided. I saw studies that showed TC was more effective. But just goes to show you, none of this is exact. Different studies, different opinions,.... Did the treatment put you into menopause?
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I would follow what MSK advices if it were me. I’m not sure if TC is more effective or not....don’t think they really know with long term studies. TC being only 4 treatments, they found patients finished the treatment since it was shorter. With CMF at 8 treatments, studies showed less people completed all eight. I was all about it being better to tolerate quality of life wise
As for menopause, at 52 my bloodwork showed I was just into menopause. But then I had one period 2 months after stopping birth control (I did it have one while on the pill). That trumped the bloodwork results. It is also why I’m on Tamoxifen instead of AI’s.
It sound like you are really educating yourself to make the best choice for you. I hope you will be 100% comfortable with whatever you choose and never look back. There are too many “what ifs” to account for.
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Hi Everyone,
I have been lurking on this forum since I am on CMF. Most of the ladies here seems to be getting treated with CMF as a first line but since I have progression in bones and liver, my MO has started CMF. I completed two cycles of CMF so far and my main SE is nausea and fatigue. I have been told that CMF is easier than any other combo treatments.
Inthegrey , i agree that Dr. D'Andrea from MSK is great. My original MO transferred to Bergen so she assigned me to Dr D'Andrea, who comes to Basking Ridge NJ twice a week.
JRNJ, to answer your question about effectiveness of first line treatment, how do you determine this? I had AC+T dose dense 11 years ago (2008) and was diagnosed with metastases in 2013. I feel probably because of that, my cancer didn't come back till 5 years. But who knows? Cancer is so unpredictable. You have to do your own research and trust your oncologist to suggest the best option for you.
In 2008, I was node positive and my MO at that time did not even bother with Oncotype Dx. She went with the pathology report to do DD chemo.
Where in NJ are you located? Is it possible to have your treatments at MSK?
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Thanks again. I am the eternal skeptic and question everything I can't help it. Now I am thinking I would rather have it over with in 2 months than 4 to 6. But most importantly, I want the best treatment. And I guess no one really knows. I am planning on getting my ovaries removed and probably going right to AI.
S3K5 thanks for joining and providing input. You did the strongest first and now they are putting you on CMF interesting. And it's Sloan that recommended this? Did you have a mastectomy? radiation? ovaries shut down? I am in Jackson and only 30 min from Sloan Middletown, where I actually grew up (Is that a sign?). I have had severe anxiety over whether to switch my doctors from HM to Sloan since the beginning. Why not go to #2 in the country when you can? I have had terrible experiences so far regarding surgery and surgeon and hospital. But I didn't want to go to the city for surgeries. After finally meeting with Sloan MO, I agonized again, but decided to stay with my MO who is 10 minutes away, suggested I go for 2 different opinions and supported me wanting to follow Sloans recommendations. I also like my RO and PS (I think, I have had some issues) and would feel obligated to go with all Sloan Drs., especially RO, probably wouldn't switch PS. Although both second opinions said I should dump my PS and go with theirs and do DIEP after looking at me. I'm a mess, Pseudomonas infection, TEs removed, now I'm stuck probably waiting 8 months for reconstruction. I feel much better though. Sloan Dr. said no to ovary removal, she would do Lupron injection and go right to AI. So I like the theory of skipping Tamoxifen, but my MO is on board with ovary removal. I really liked her, but she said one other thing that annoyed me. I was like a DD, and always hated them so am fine with a reduction, but still want to look like myself, maybe a full C. She goes "so DIEP gives you an A or B, tough" lol. She'll probably turn out to be right when I hate the implants and was looking forward to a tummy tuck before I decided double mastectomy. The main advantage to HMis they are agreeable to elective surgery when Sloan isn't. I heard Sloan won't take a healthy breast and she didn't agree with ovary removal. I have been trying to be as aggressive as possible from beginning and leave no stone unturned. Are you doing every 2 or 3 weeks? Sloan recommended every 2 weeks for me. My original DR. said 3, but he said he'll try 2. But I don't know if they would use different doses, no one said anything about that. Anyone know if there is a standard dose or could that vary also. OK I talk a lot. lol Good luck to you, hope it works.
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Thanks for your welcome. I have TNBC. I found the forum for this topic but could find no posts. Please advise how to find the posts. Thanks
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JRNJ...you are right to be a skeptic. We have to be our own advocate!
My first BC was 8 years ago it was Stage IIIb. I wanted a double MX but MD Anderson wouldn’t remove a healthy breast. No I have a “different” Primary in the other breast.
First chemo was 12 rounds of Abraxane and 4 months of FAC, (5Fu-Adriamyacin-Cytoxan). I was post menopause.
This time my tumor is 70cm x 73cm x 68 cm and it’s ILC. The Oncotype is only 18 and shows less than 1% chance of chemo doing any good. But the Study is based on first Primary diagnoses, tumors smaller than 2cm, and mostly IDC.
My MO has reservations about chemo, but finally agreed to CMF. It seems there is a lifetime cumulative effect of either the Abraxane or the Adriamyacin. So this is safer for my heart. We will see after 3 rounds whether it’s working
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hi—I've been reading all the posts and have collected such useful information. Thank you to everyone who posted...I am currently three of eight rounds in of CMF at MSK. I know it's a lighter regimen but it hasn't been so easy. The second treatment I had extreme nausea requiring an overnight stay followed by a fever requiring another visit followed by a third er visit to monitor some heart palpitations. They changed up the meds for round three and I think I worked harder to stay on top of the nausea but it was still not great and I still ended up vomiting. I have deve loped a fever every time after the neulasta and have accepted that I may just need to go in each time for bloodwork to rule out infection. Don't mean to sound overly depressing but do feel a bit like it's kicking my butt at times—would love any advice from those who have gone through this—my first round wasn't bad but 2 and 3 was like that song “I get knocked down and I get up again “ on repeat...dizziness stayed til about day 10 and nausea til day 7 (and I do acupuncture—which HAS helped with fatigue and bone aches—a positive...I'm just counting the days til it's over but am also trying to do one thing each day to make me happy
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Mac5: I stayed with my BS even thought I didn't like her because she agreed to the double. I read on someone's post that CMF worked to reduce a large tumor and I think it was ILC. Good luck with it! Keep me updated.
Jrunstroop: Thanks for the info. I'm prone to nausea, so will probably be there too. Starting Monday. Do you think I'll be able to go out to dinner 3 days after first treatment? Makes me wonder if we should be doing TC. And now I'm scared I'll be sick for 4 to 6 months instead of 2. Are you doing every 2 weeks or 3? MY MSK doctor recommended every 2 weeks rather than the standard 3. But if I'm really sick, my MO might change that. MSK is really into CMF for intermediate Oncotype. What's your Oncotype? Are you going to NYC or NJ? Can you go to a local emergency room, or you have to go to the city?
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Jrunstroop , sorry to know you have extreme nausea with CMF. I am in the same boat, my stomach is very sensitive and this chemo has been hard on me. First time, I had not taken anything other than what was given via IV (Aloxi, Prednisone, Cytoxin, Methotrexate and 5FU). The nause and dizziness started 24 hrs later, when the effect of Aloxi started wearing off. I was been given 3 anti-nausea meds - Zofran, Olenzapine, Campazine, This combo has helped me with nausea. I try to rest as much as possible and eat well, once the side effects are lower (2nd week onwards).
At the second round, the oncologist dropped the nuelasta and said that we arent giving the body time to recover,My MO changed CMF from once in two weeks to once in 3 weeks, so I start feeling better at end of week 2.after chemo. After the first round I was given Nuelasta, which came with its one side effects.
Hope your SEs reduces over time.
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S3K5: Thanks so much for sharing your experiences. I really appreciate it. I was given the same three meds for anti-nausea after round 2. I guess it helped because I threw up only once instead of five times and the actual time period of oh crap I can’t take this was somewhat shorter but it still wasn’t pretty. I am definitely finding that eating regularly helps a bit although sometimes I’m literally forcing myself to eat (it doesn’t help that I have some food intolerances so my diet is pretty limited in the first place). I find the nevenings harder and today I worked hard for a midday nap and that totally helped. Sleeping hasn’t been great in general. The acupuncturist said she is trying to calm my “sleep spirit” and I told her my sleep spirit seems to be throwing a party! Hope you are doing well with SEs in the coming days.
JRNJ: good luck tomorrow!! Check in and let us know how u are doing. I am in Westchester but my MO is in city so I am being treated in NYC, every 2 weeks. I tried to beg some treatments at westchester (especially since next treatment day is my sons bday (huge bummer)) and at first he was agreeable but after my round 2 he wanted to see me each time for now which I understood and appreciated. I’ve been a bit unlucky on ER timing since my treatment days are Thursday and Westchester MSK closes at midnight. Two times I went to Westchester but one time they were closing and I had to transfer to NYC. The other two times were the weekend so we had to go to NYC. My oncotype is 19 and I’m 48.ill be thinking of you tomorrow. I will tell you round one for me wasn’t bad.0 -
Thanks! I can’t sleep but I don’t think it’s nerves I think it was the jelly donut lol. I take lunesta for sleep. I was taking it before diagnosis due to chronic insomnia and had to get once a day special approval after dx. It’s keeping me sane. I’m starting cmf every 2 weeks but suspect I may get bumped to 3. That was my fear of going to Sloan. Middletown is not an overnight facility nor do they do surgeries. The thought of trekking into the city for surgery is problematic. I’m in Jackson. But I’m sure they’re worth it. Due to a surgical infection I had many visits to dr and hosp and 3 procedures. But probably wouldn’t have got the infection at Sloan.
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first treatment yesterday. I was functional but tired slight headache felt heavy weighed down especially head and legs. I was very hungry. It's the meds not the chemo. We'll see what happens when they wear off. They gave me Aloxi Cinvanti and Pepsid. And Neulasta onpro. At home they saId Claritin and Ativan and Zofran with olanzapine as backup only if necessary. I told my doctor Sloan recommended zyprexa (olanzapine). He rolled his eyes a little. I'll bring it up later if necessary. Let me know if you think it is good. The compadine and oolanzapine are both anti psychotic so it might be overkill. All the meds may stop nausea but may still make it hard to function. Itake lunesta for sleep but woke up early today. Usually sleep til 10. I feel tired with headache.
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JRNJ - I had typed out a reply but it froze uploading, so I took a screen shot. I was on the train...
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Thanks Inthegrey. Aloxi Cinvanti and Pepsid they gave me via IV. At home they told me Zofran, Ativan, Compazine, clariton and neulasta. Also taking zantac and Colace as needed. Yes too many meds. I stopped pretty much all of them today. Come Wed and today, no nausea, but haven't slept in two days and am very shaky and jittery, like an excess of energy. Haven't taken anything all day. I don't know if it is medication withdrawal or chemo induced menopause or both. I feel this way when I ween off meds, like the Vicodin after surgery. And I woke up every 2 hours sweating, even after taking a sleeping pill. Why am I the only one that seems to have this problem? I can't relax, rest, nothing. Crawling out of my skin.
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JRNJ - Percocet made me jittery and I never took it again. I'm curious as to why they gave you so many anti anxiety meds. Are you prone to high anxiety? Many people are, but this seems like overkill. I am on Lexapro for anxiety since I was on chemo and it alsohelps with hot flashes.
Sounds like a good thing to stop them and let it all wear off. Your body may just be extra sensitive to those kind of meds. Going forward, I'd discuss all this with your oncologist so as to have a better plan. Perhaps the steroids in the IV also have a stronger effect on you. If you need anti-anxiety, I'd see a psychiatrist at your cancer center for scripts. I hope you can get some rest. Try a meditation app, that helped me.
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Percocet, Vicodin, Ativan, all make me jittery when they wear off. I try to avoid too. I am sensitive to meds. All the meds they gave me were for nausea, not anxiety, because I told them I was prone to nausea, but I told them I didn't like Ativan or claritan (also known to cause insominia for me) Although I have severe anxiety, before dx, I tried some meds and hated them all. I feel like no pill is going to stop phone calls home from the VP that my ADHD daughter hit someone, lol. Lunesta is my only standby. Need to get sleep. And Compazine is an anti-psychotic prescribed for nausea. I was so afraid of the nausea, that I took all of them at first. But stopped yesterday and still feel crappy. I think it might be the steroids also. or is it the chemo? So confusing. I'm a mess. Can't focus or function enough to do anything including rest. You can't take a pill to fix medication withdrawal, you just suffer. I'm also eating like a horse and gaining weight. So my side effects are not the ones I feared, yet, but they still stink.
Jrunstroop got much sicker on second round. So if we back off on anti-nausea meds, will I regret it?
On a positive note, my long curly frizzy hair is smoother, lol. Hope I won't loose too much. I have a lot of hair, that has thinned in my older age. I bought a cute wig, but it won't stay on my head right now, too much hair. And I am a rule breaker. I will color it. I've been buying some more natural products. If it doesn't work, than I guess I use the wig.
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Hi Everybody,
I started this forum back when I was first diagnosed and when I was unable to find information about CMF. I’m happy people can come here and get information and support. I am 2 years post chemo and radiation and have had all scans and MRIs come back fine. I had genetic testing done due to the fact that my dad and his siblings had stomach cancer. My results indicated I should be monitored closely and I have every 6 month endoscopes schedule and every 6 month MRIs of abdomen. I do have some small lessons on my pancreas but right now no intervention is recommended. I’m mostly writing to say to all of you, hang in there and you will get thru this. I thought chemo and radiation would never end, but I’m feeling fine, energetic, hopeful, and feeling positive about my future. My oncologist worked at Sloan Kettering and moved to upstate New York to practice in Albany oncology hematology. She’s great and I have faith in her. She knows what she’s doing and felt CMF would be the right course of treatment. I wish you all good health, happy hearts and I’m sending positive vibes to all of you.
Kate
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Thanks Kate! Glad to hear you are doing well! Words of encouragement came at the right time for me. I latched onto this string because it feels like not too many people are doing CMF and I am a little concerned about that. It also seems to be mostly node negative, and I am node positive. But my other opinion said no chemo, so this is the middle ground. The pattern is definitely Sloan, so I guess we should trust them. My first infusion was Monday. Monday and Tuesday weren't too bad so I thought, maybe I got this, than I crashed with the meds wearing off and felt really lousy. It's definitely not worst case scenario, no vomiting, but like a bad hangover I can't get rid of. Feeling a little better today and just got my xmas tree with my daughter. I am wondering if I will be able to go back to work 1/6. And I still need radiation and reconstruction. It does seem so long right now to feel this miserable. Thinking maybe 2 months of TC would be better than 4 months of CMF if I am miserable either way.
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Nice to hear from you Kate! I am now just over one year from CMF treatment and BMX and doing well. Looking back, it was not so bad for me.
JRNJ - my treatments got better with time. In fact, I had more energy and felt better with #7 and #8. The first 4 were more tiring. I had also started acupuncture after #6 and I think it helped a lot. I highly recommend it for side effects and energy. Glad you are starting to feel better today. As for going back to work in Jan 6th, please expect your energy levels to be unpredictable. Personally, I would not have had the energy to work. Fortunately, I was able to rest a lot and had family support.
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I am fairly new to this forum, but have learned so much from all of you.
I have some questions, given that I start CMF chemo on Dec 10th
My husband drives me 180 miles to my chemo apt. Then we will drive home after my first treatment.
Questions:
How soon after treatment do symptoms start? I am concerned if I have to be ready for them while riding home in the car. Thanks so much for feedback.
Lupe
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