CMF Question
Comments
-
LIbby, sorry if you felt overwhelmed ( scared) after reading lots of posts about what might happen, and what you could do about it.,
I think most who post on this board believe that forewarned is forearmed . And we learned from one another about things that can help, and drugs or changes in regimen that you could ask your MO about. Any one MO knows a lot, but not everything!! and on this board you have the collective wisdom and experience of women who have been and are being treated by doctors from all over the country! That's a lot of good knowledge.
Hope these next few days after infusion are still going well.0 -
I've been a member on this site for a few months but was just referred to this page. 1 cm. lumpectomy in January, ER positive, lymph nodes clear, Onco #26 and surgeon said "good news, only a little radiation then Tamoxifen." Then the onc said chemo which nearly floored me, saying CMF at that time. I went privately after that for convenience, getting TC and went through 2 rounds, broken into 4 treatments from late March 'till early May. Had numerous problems there, a chemo burn, vertigo and during the last one, believe it was annapylactic shock, though the Dr. would not admit it, due to cutting back with steroids Needless to say, I am now going to a center in a big hospital and am starting CMF tomorrow as he doesn't want to chance TC after hearing what I went through, though says I'm 1/2 way done. He does say though 6 rounds of CMF every 3 weeks. I am not sure what to expect except for what I read and do have Zofran on hand which did help me with the other chemo. I also am bothered as to the effectiveness of CMF for preventing a recurrence. Any words of wisdom? Thanks in advance!
0 -
Hi MFPM
Im a new member so i dont know about recurrence but reading past threads it seems its just as effective as other regimens.
i believe your treatment with CMF will be good since your diagnosis is not as involved (ie mastectomy, size, etc) as some of the ladies here.
i get weekly MF infusion. (24 weeks total) I take cyclophosphamide pills daily. Tomorrow will be my 3rd visit. I am doing well. i take zofran an hr before infusion. although i think i dont need it because i havent felt any nausea. My Dr is pleased so far. My lab work has been steady. Hope your doing well.
Hello to everyone else in this forum!
Libby
0 -
Just to add a comment. I did CMF 15 years ago and here I am with no evidence of disease. There is a start point and an end point. Hugs to you.
0 -
I finished up CMF last year and so far am doing fine. I worked through all eight infusions. Just remember to take Zofran and whatever meds you are given to prevent nausea. The fatigue will come as chemo just builds on itself, but once you are done, you will start getting your stamina back.
Good luck to you!
0 -
Hi L in CA, SoCalLIsa and ml143333, Thank you for your responses and sorry I haven't been back on here since my questioning last month RE: CMF. Honestly, chem brain, I forgot my password and had to reset it just now. I have done only 2 rounds of the CMF so far and the 1st time it was mostly stomach pain, though I took Zofran. I also remember feeling very out of it, dazed, confused for about 3 days, then semi, slowly back to normal but for those days, I was very afraid. Three weeks later, I got the 2nd round and it knocked me out very badly which was worse than fatigue and though I got up each day, I was a wreck, so very weak. That time it lasted into almost 2 weeks and I called the hospital. They said it could be cumulative, build up, from getting the TC and then going onto CMF every 3 weeks. I was due back for another treatment last Friday but since I had emergency oral surgery which they were not thrilled with but gave me medical clearance, I took the week off and will be meeting with my onc this Wednesday for an evaluation. They check my blood each time and was always okay to get treatment, but I just don't know why it's effecting me this way. I know treatment is difficult after doing it since March and want to continue but don't know what he's going to say. He already told me that if I react badly he would just put me on Tamoxifen or a similar med, plus radiation but I am terrified of recurrence, the reason to go through this so basically I don't want to stop. I just don't know why I felt that way, almost paranoid, afraid I wasn't going to make it, a very helpless feeling while lying in bed, forcing myself to get up but could not function or think straight. Thank you all for the kind words and SoCalLisa for the inspiration of 15 years clear! Many hugs to all and any input, please share. I will be back! Marilyn
0 -
I would guess it probably was/is a cumulative effect especially since you started with TC and moved to CMF. Just be very honest with your oncologist about what is going on including your fears. I know my white count was so low twice that my CMF had to be postponed until we could get it to come up. Those times, I was even more exhausted.
This whole process is definitely a daunting experience to say the least, but we are here and in your pocket at each doctor's visit, test, and infusion.
Chin up! Every day is a new day!
Mandy
0 -
Hi MFPM!
Sorry to hear you are having so many chemo issues. I did 8 tx every 3 weeks of CMF some 7 years ago and I am doing fine now. But I did have many side effects while on CMF--the fatigue you are feeling was one of the main side effects. I was lucky and did not have to work so I was able to get rest as I needed. I also went for acupuncture once a week and I found that it made a big difference in my chemo reaction. So since you live in NYC, perhaps your doctor could suggest an acupuncturist which might help a bit. And I also had to have delayed chemo a few times during my months on it--hopefullyy ou have a good enough relationship with your onc to ask a few questions. And it seems that many people only have 4 or 6 tx of CMF so if your onc cuts you short, don't worry---you will be fine. And as Lisa has said there is an end to chemo that will come before you know it.
hugs to you, to libby and to all the cmf gals!
Mandy1313
0 -
Marylyn I don't know what to say. I did have accumulative effects of CMF but not as soon as you did. I hope you and your oncologists can figure something out. Sending you hugs
0 -
Hi Marilyn
Sorry to hear about your experience. Did your Dr explain how much dosage you will be getting? it may be too strong? One of my pushes was reduced 25% due to elevated liver readings. i also felt better when they push the meds slowly. i had one nurse push it fast and experienced horrible metal taste for 2 days.
My hair has been shedding for a couple of weeks. I hope it holds up. is it "normal" to shed more than usual and for how long. i know for a normal person its 100 or so hairs/day. im just Obsessive how much im loosing. although friends and fam say it looks the same.
ive done 9 weekly treatments so far out of 24. ill see my onco in a couple of weeks to see if she recommends stopping at 12 then do radiation and then get back for the last 12. i think i want to finish iv first then do radiation.
hugs to all of you! Im almost halfway there!
0 -
Is anyone else out there still on CMF? This thread is dormant since January. But help! I hate CMF! Ok, I'm venting, which is what one does when there is nothing else they can do. The side effects are worse than any other chemo I've been on. My lips are cracked with sores and tongue/throat is raw, painful to swallow. My rectum hurts and I didn't realize when they said "mucositis" that they meant any mucous membrane may be raw. I am fatigued, and sore everywhere, and I wonder how long I can continue to do this. Any advice for how to manage?
Need to know more what other CMF'rs are experiencing. Thank you
0 -
thread is not dormant.
0 -
Hi Marilyn,
So sorry you are having such a bad bad time. My diagnostic profile is very similar to yours and I had only 4 infusions of CMF,!, I Had chemo brain, a few episodes of sudden depressive crying, and various symptoms, and even oral surgery in the middle of the chemo phase, but nothing as bad as what you are having. Please do not be fixed on having the chemo as originally prescribed. If you read all the postings you will find that MOs have and use lots of flexibilty in changing regimens based on each of us. I don't believe there is magic in numbers.
Dear akshelly,
what a long an grueling treatment history you have , and yet you soldier on!
I do not have any experience with mucositis, and I wish i had some suggestions. Have you searched on all the various Breast Cancer messages boards to learn what other women have found helpful? I just found some information about medication that can help reduce mucositis on
oncolink.org/support/side-effects/mucositis/mucositis-the-basics
Hope there are ideas there that you have not tried, and wil offer some relief.
Certainly ice chips etc, for a start.
Best to all for speedy recovery from all the SE of chemo0 -
Hi Ladies, Thank you so much again for your kind words and support. Tomorrow's the day, round 3 of CMF and I'm cringing at the thought. I know I have to do something for prevention but after last time of being out of it, so afraid for 2 weeks, I can't imagine that I'm doing it again. I had an evaluation last week with the good Dr., got a week off due to the oral surgery and won't know until tomorrow if I'm okay to get treatment. It's been 2 weeks and my mouth still hurts, wondering if he got the whole tooth out, hopefully not infected, plus the stitches did not dissolve. I'm mostly worried since nurses mentioned sepsis, getting teeth pulled while going through chemo. Anyway, back to my point and trying to think each time may be different, hoping it doesn't effect me as badly this time, though I don't have much hope. It's bad enough having side effects but I was beyond weak, afraid to sleep thinking I was not going to make it, that bad! I've had fatigue from other things but this was so scary, giving me a paranoid feeling which I do not suffer from, so nothing else to blame but the chem. I told the Dr. all of this but he said maybe it was the steroids which I'm sure it's not since I was better during the 1st 2 days from them probably. I did ask if there was ANYTHING I could do to get through this easier and though a very compassionate man, he said no. Also there was a 180 turn around with him, the 1 who wrote that he didn't think I needed more treatment after the TC which went bad. I put my papers on his desk, asking what are the odds, how bad is this scenario and he said "they wish my #"s were better", maybe referring to the Onco test or scores. He was not as light hearted, easy going about my case this time which threw me for a loop. Of course I asked him what is the best of everything I can do to prevent recurrence and he said I'm doing it by getting the CMF, 4 more rounds, then radiation, then the Tamoxifen or similar pill after that. I felt a bit relieved for a few weeks, physically, though going through a lot but emotionally my worries seemed to be lighter until I asked after going through my surgical records. I felt more assured that I'd be okay during my other 2 visits with him and this time he gave off a bad feeling, not the same. I don't know what he didn't see in May when he got all my records. He twice shrugged it off, saying "eh, the type of tumor you have, nah, you'll be fine, even if you react badly, I'll just put you on the pill", but surely wasn't like that this time, being very serious! I know many are going through worse so I should be more proactive about this but still. I'm alone in this, though have a husband who is not understanding, as family and friends deserted me, so I don't have a cheer leader, as I've been for others. When I'm a mess, in that weird state from CMF, in time I force myself to get on this computer or take phone calls but am in such a dazed weakened stupor, I have kept to myself, which is wrong. As for my hair, I never shaved my head but lost almost all of it due to TC. When I 1st went to Sloan, they told me that CMF does not make one bald but thins hair. It's now thinning the little bit I have left, only a few strands hanging on the side and thin hair on my head so I mostly wear a cap. Wig and or scarves are too hot and I feel so crumby about myself, I don't fix myself up the way I should. I have a lace cap that I wear and am very self conscious, getting looks from the few places I go, plus the neighbors who don't bother with anyone but love to talk. I know I shouldn't let that bother me. Anyway, I'm rambling now, maybe part of chemo brain too but just wanted to keep in touch, thank everyone and post what's going on. Anyone spiritual, please send some Prayers my way for an easy time of it. Thank you all again!
0 -
MFPM, thanks for reviving this thread. I'm interested in hearing from other CMF'rs. Windward, the mucositis persists. I have big sores on my palette, espophagus and rectum. I am having trouble urinating and having BM. Sometimes I want to scream to the Universe "WHAT FRIGGIN' NEXT" But I know better than to tempt the Universe by throwing words around that way. Exploring other boards to help.
So far, I rinse twice daily with salt/baking soda. Then I use BLM Swish & Spit. (Benedryl/Lidiocaine/Maalox) 3-4 times, usually before I want to eat. Then I'm using more Morphine IR, and topical lidocaine on my rectum. (TMI?) My WBC are neutropenic at 2.0. The doc said I'm doing everything he knows I should be doing. I even tried hemp oil for laxative and GI soothing. Turns out, the kind I got from my friend, left me pleasantly stoned for 6 hours. That helped considerably since I can't smoke pot (due to lung mets). I slept!
Ladies, if anything specific worked for you, please share! I'll try anything once!
0 -
Hi Akshelley!
I sent you a private message about what I did to help with mouth sores etc. Hope you find it.
Hugs
Mandy1313
0 -
Hi MFPM,
I sent you a private message.
Hugz,
Windward0 -
Good Morning Ladies!
Hope you all are doing well. Im halfway through treatments. 12 more weeks! im still working full time and feeling tired by the end of the day. SE's...ive noticed more hair shedding. When does it stop? i had thick hair to begin with. I want to color my roots but dont want to stress my hair. Any suggestions for a temporary rinse. My hair is ashy brown. So happy i still have hair. I see more skin spots on my palms. My hands and feet are darker. The nurses say make sure to use sunscreen. I just get a little queasy after infusion for about an hour. I get nightly sweats, so my fan is my best friend! im more sensitive to smells. i hate the cleaning odors from the hospital, strong floral lotions, the alcohol that they use to clean the port, and those packaged saline and heparin to flush out the port. Appetite is good. I snack throughout the day. Ugh 10 pounds more. im on daily cytoxan pills and weekly methotrexate, FU pushes. Have a great weekend everyone!
Libby
0 -
Hi from Southern Cal...smells really got to me..I was able to detect gas leaks in three homes of my friends..one even shut the house down until it was fixed.
I lost about half of my hair, and I didn't use any color. I figure it was the least of my concerns..anyhow sending hugs to you. I am 15 years out from chemo this week.
0 -
Hi Libby
I don't have any suggestions about hair color===I never colored mine during chemo but Ritajean and lots of others did----perhaps one of them will come on and give you advice. I was on the IV chemo and had hair loss through my 4th infusion and then it stopped...I never needed a wig or even a scraf to cover my hair. But look at the good news---you are half way there and still working! That is terrific. Befor eyou know it, you will be finished.
Lots of hugs to you!
Mandy1313
0 -
Thanks Lisa and Mandy, Ill just have to be thankful i still have hair. i just panic when i run my fingers through my hair and when i wash it. im not used to seeing that much shedding. Right now i wash my hair every 2-3 days. i have so many different shampoos. The nioxin shampoo kinda dries my hair so i follow up with dominican argan oil conditioner or pantenes 3 minute conditioner. For the days that i dont wash my hair, i spray it with water and then cold blow dry for work. Oh the things we do for hair.
Thanks for responding! Hugs. Libby
0 -
Libby - Congratulations on being halfway done and working. I worked the entire time too. Toward the end, you will become increasingly tired, but you can get through it.
I never colored my hair during chemo and waited 6 months after before I did. I lost hair the entire time I was on chemo, but I never was bald and no one outside of my, my husband and my hair stylist knew the difference.
0 -
Is anyone " out there" also going through CMF now
0 -
Heidi - I am not currently going through CMF, but am just about 2 years out. I'd be glad to answer any questions you might have.
0 -
Hi Heidi
Im currently on CFM. I do daily cytoxan pills and weekly F&M infusion. Yesterday was my 14th treatment. 10 more to go. Im doing well. From my past treatments i felt queasy when they pushed the medications too fast. i find that doing it slowly really helps. Do you take the pills or is it all infused. Everyone has a different experience, so you will eventually find out what works for you. Right now my hair sheds and thinning but i still have hair. i wash it every 3-4 days. People say it looks the same. The ladies here have been very helpful. I too will be happy to share and answer questions you may have.
Libby
0 -
Hi Heidi,
Yes, I've done 3 rounds of CMF so far, and have #4 next Monday. I am on it indefinitely as I have Stage IV and it has no maxium toxicity. So, I will stay on it as long as it continues to work. I hate it. The constipation is aweful, so I try to take Miralax a few days before the infusion/pills starting, and continue with prune juice and some Miralax. It is also fatiguing, so I give in to sleep. And I have a problem with one of my teeth that showed my whole jaw has osteoporosis. I think that is a result of the Denosumab. Does anyone else on CMF have jaw/tooth pain?
The good news that you have to weigh, is that my tumor markers came down 100 points after the first infusion, and about 35 per infusion after that. I wish you all the the same good luck, w/o the s/e. Shelley
0 -
Being a type "A" personality, the toughest thing is dealing with the fatigue. I have been sleeping and napping. But, it helps.
Having TMJ, I wear my mouth guard at night and suggest asking your dentist about getting one. Also, my dentist suggested prior to treatment switching to Sensodyne tooth paste and my oncologist suggested changing to a soft tooth brush. I had 2 root canal procedures in the last year so I was concerned.
I am having a metal taste, but it's going away almost a week after the 1st treatment. My other complaint is that I feel like I'm having really bad cramps with heartburn.
Still 2 weeks till next treatment.
I'm so sorry that you will be on this regimen for a long time, but I understand it's so much more tolerable than other options.
Try to get out if it's nice. I'm going to take a walk.
Heidi
0 -
Shelly- the last post was responding to you. I'm new at this, so.....
Libby- I'm going to wash my hair only a couple days per week. That's very smart. I'm also wearing it naturally curly and not blow drying it straightening it. Hopefully won't shed too much.
I'm on CMF IV infusion every 3 weeks. It seems like it takes close to a week to recover. Is it the same each time or does it take longer to recover the next times?
I now have to deal with the "work" issue. My dissbility ends at the end of the month.
Heid
0 -
I did color my hair and had no problems at all. I used the Nioxin hair products faithfully. They were a little cashy but well worth it to me.
0 -
Just stopped in to bump up our thread so it's easier to find to newbies. I hope the inactivity means that everyone is just busy and doing well.
0
