CMF??
It's a very long story, but I start CMF next week. My MO sort of pulled it out of his hat. He didn't want to do Adriamycin, and can't do two taxanes right after each other, so. . . [why not navelbine? I dunno]
I asked Dr. Google about CMF in the metastatic setting and found 'not much".
We were dealing with a lot of sequelae from Piqray which took a lot of time so I didn't get to ask questions. Like, what's the schedule for CMF in the metastatic setting anyway? And do they give Cyclophosphamide orally? Or is everything iv?
He did say it had the 'usual' side effects and 'probably' no hair loss, but in my case that's famous last words.
Can anyone who is doing or has done this advise?
Comments
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pajim...
I’m currently on the CMF protocol. I’m taking the Cytoxan by IV because the Insurance Company delayed their decision to long for me to take the pills. But on a 28 day cycle I would have taken one pill a day for 15 days.
I’m not diagnosed as Metastatic. I have Cancer in my chest wall behind the ILC Breast Cancer. They have just said they do not know if the breast tumor is connected.
CMF has been around for a long time I understand. But information on SE’s has been hard to find. My scalp hurts like it did when I lost my hair before. But after 3 Treatments I’m not bald yet. So far the worst has been the Neulasta SE’s.
I’d be glad to answer any questions
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Thanks so much! (Sorry, I've been out of town for Christmas). So you have a 28 day cycle? The old school CMF regimen? Two weeks on two weeks off?
I understand the other approach is 'every three weeks'. Yes it's an oldie but goody. It's what they gave early stage women until A & T came along. . .
Are there pre-meds? Anything except the scalp that I should watch out for? Do I need to lay in a supply of antacids or anti-diarrheals?
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pajim..
I wish you great success with CMF! So far theSE’s have been bearable. It seems like the chemo can do a number on your Red and White blood cell production. You may have to have Neulasta. SE’s from Neulasta can vary from severe bone pain or none at all.
I’ve experienced nausea but it’s not been predictable. I can’t say 24 hours later the nausea starts. It has come out of the blue for me. I get pre meds while waiting on bloodwork results before chemo. It’s usually lots of Zofran and a Zyrtec. The fatigue is one of the hardest for me. But my age may be a big factor.
I’ve taken other’s advice and have begun to take Claritin every day. It does seem to work. I take Zofran and Compazine for nausea. And I’ve had to take Tramadol for the bone pain. But I may be just wimpy.
Hair loss seems to be iffy. Mine is thinning out, but I still have enough to style after 3 Treatments. So I might keep it. My eyelashes are falling out though. I haven’t had issues with numbness in fingers or toes yet. But that’s a possibility.
I take Prilosec for the stomach acid. But I haven’t needed the Imodium since I started the Claritin every day.
I keep Jello and pudding in the fridge. Boiled eggs are great when you need protein but don’t want to cook. I keep Peach Tea close because drinking water is like taking medicine to me.
. I’m not big on canned soup but I’d make a big pot of hamburger soup and put in small containers for quick and hearty. Anything you think might taste good. Most everything begins to taste like cardboard. And weight loss isn’t good.
I’ve had 3 cycles of 21 days. Just had another Breast MRI to determine if it’s working. First results are not promising, so Monday December 30 will determine the next step.
I had a great Christmas and I’m still full of Hope
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Thank you for all the great advice. I'm sorry it doesn't seem to be working for you. Wishing you the best of luck at your appointment tomorrow.
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Hi pajim. If you search CMF we have 2 recent threads where we’ve been chatting. Sorry I’m not stage iv but here’s my input. I’m doing iv every other week per Sloan recommendation. Treatment 3 on Monday. No pre meds but lots of meds in iv and post. Although I’m prone to nausea meds are preventing it but I get some ses from the meds. First week dizzy, tired, bad heartburn. After second treatment I lost about 50 percent of my hair but I had a lot to lose so still can go without wig but afraid its going to get worse. Second week I feel pretty good. I take Pepsid, zofran, senakot mylanta as needed and lunesta for sleep. I have Compazine and Ativan as backup but try to avoid. I eliminated Aloxi in my iv, side effects were bad. I’m taking sone Claritin for Neulasta side effects but for me, not others, ses from Claritin worse than Neulasta.
Mac5 sorry it’s not working yet. Is the pill form supposed to be stronger? Maybe suggest every 2 weeks per Sloan if you can handle it?
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pajim - I did CMF in 2009 for stage 1 breast cancer. I took cytoxan orally and the MF by infusion . My oncologist had me get the MF infusion weekly for 6 months and I took cytoxan every day.
My hair might have thinned a bit but it wasn't noticeable. I think it is a chemo that is tried and true and been around for a long time and considered to be pretty tolerable. I am not prone to nausea, and only had nausea a couple of times in the 6 month time period. I was 44 so it did put me in to menopause or chemopause and i took gabapentin for hot flashes as well as ativan as needed for sleep.
Hopefully you will fare well on it!
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pajim and JRNJ
HAPPY NEW YEAR!
Thank you for your best thoughts! Had a quiet Holiday but it was nice.
The general agreement is the tumor may/may not be measurably smaller, there is Radiographic evidence it is being affected. Both the tumor and the area in the chest wall are less reactive to the dye than before! I’m taking that as a positive and so is my MO. TBH I truly wasn’t expecting the tumor to “shrink” in size so a one cm size between 10 cm and 9 cm measured by calipers is acceptable to me. It’s more that the tumor is no longer growing and it is noticeably softer. And the chest wall area is being affected to the same degree. But the Neulasta is kicking my butt.
Has anyone experienced Liver issues with CMF? My blood tests indicate some possible Liver damage. Has anyone else experienced this? Is the damage permanent or does it resolve itself after the chemo is over? And just how long does it take for the Neulasta to work?
3 more cycles are recommended...I’m hanging in.
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Thanks Mac5, you too!!! Not feeling great this week, but much preferred to have a good xmas week and a bad new years week.
What blood test did they do for the liver? Does the Neulasta help the liver? You might want to check the older posts on the other string to see if anyone had this issue. Or I don't think it's specific to CMF, I think other chemos can do liver damage, check some other general chemo threads. I think my immune system was actually pretty strong and they are overmedicating me. My WBCs were 19 before last treatment and normal high is 10. And I think the Nuelasta is making me sick due to overdose.
Found this link: https://www.texasoncology.com/cancer-treatment/sid...
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Thanks JRNJ. My WBC this week was 19.81 also very high. But Red Blood Cells are low and Hemoglobin and Hematocrit were also low. I think that’s more like anemia.
The Liver/GI blood test shows a low Bilirubin with a high ALT, ALK Phospate and high AST. Bilirubin comes from normal cell breakdown and is excreted through the Bile Duct (it’s what makes your poop brown.). The ALT, ALK, and ASK are all byproducts of cell renewal but are normally excreted by the Liver (I think that’s what I understand.)
I’m not certain Neulasta is supposed to affect the Liver. It’s supposed to help make new blood cells. The bone pain comes from the increased activity in the bone marrow. The largest most productive bone are is the pelvis. I’m not understanding though why the production of White Blood Cells and Red Blood Cells don’t match.
So I’m thinking I’m the person who “A little knowledge is a dangerous think” was written for. My MO called about the Liver Test results to tell me she’s watching but not doing anything right now. I will call again to ask if I should be concerned about taking Meloxicam for arthritis and Atorvastatin for cholesterol while the numbers are bad. Both can damage your Liver.
Hope I didn’t confuse anyone else!
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Hi mac, my liver function tests are rarely normal but that's been true for a long time. Your liver does a lot of the work metabolizing this stuff so likely just gets a little strained.
Though it seems to be one of my MO's hot spots too. He worries about the LFTs more than I do.
Glad to hear your tumor may be responding! The ladies on hormonals say it can take three months to see results (not for me but I guess it's true for others) so maybe that's true for this regimen too.
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I didn't know there was this CMF forum started recently. Going forward, I'll add in my comments to this post. I had my fourth CMF treatment yesterday and nausea started today morning. Taking Nuelasta after 24 hrs via Onpro cartridge. So tomorrow is when the bone pain increases. I have Tramadol and celebrex to deal with this SE. For nausea I have been given Zofran for the day time and Compazine and olenzapine for the nights. I will try these tonight. They gave me IV Aloxi prior to CMF yesterday.
Hope everyone's SEs are manageable. I was exhausted on Days 3-5 of my previous cycles, but this time I am hoping to have more energy. Trying to be active and not sit around for long periods of time.
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Thank you pajim. I believe I can see visible results, but then again the tumor was so large even being able to look down and see something besides Tumor is very encouraging to me.
I had my 1st chemo on November 5th so it’s basically been just 2 months but 3 Treatments. I’m okay with my progress I think. At least I’m thinking I made the right choice for me
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Now, after 4 cylces of CMF, waiting for the scan on 21st Jan. Being optimistic about the results but who knows?
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S3K5, Mac5 and pajim: My response won't be measured like yours, so I can't begin to imagine what you are going through. Just wanted to let you know I'm thinking about you and hoping for the best.
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JRNJ, thank you.
Today I have been having severe tingling and burning in my toes due to nueropathy. Some one suggested that Vicks Vaporub helps so my DD bought this and I have been applying. It helps for a short time and then the burning starts! For taxol I had chilled my feet and hands and I had no nueropathy. For CMF the nurses said it is not necessary. I wish I had continued cooling my hands and feet. Maybe I could have avoided this nueropathy SE.
Hope you all have a wonderful week!
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That is strange, I don't have any signs of that. Could it be something else like a herniated disk, since it's not in your hands? I occasionally have numbness in one foot, prior to chemo. I actually think now it was the cancer pressing on a nerve because it actually feels better after surgery. There's not that many people doing CMF, and seems to be the same people on both of our CMF threads, but this thread is Stage IV, so if you don't want me to chime in on this thread I totally understand. Don't know if the post was directed at Stage IV people, or CMF people. Hope you feel better!
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I hadn't heard that was a problem either. Hmmm. I have a small amount of neuropathy from my previous chemo but nothing here so far. Early days, of course.
In general, just because it's not on the list of side-effects doesn't mean you can't experience it. I tend to get the weird ones too.
JRNJ, there are so few of us on this treatment that we should support each other, Stage IV, III, II or I. I don't particularly care which thread we use. If it's better for you we can use the one in the Chemotherapy forum.
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JRNJ , I think Pajim is right - stage doesn't matter. Anybody going through CMF is welcome to add their comments here.
I am seeing my pain specialist tomorrow and will update what he thinks. The nurses at my MO office say that nueropathy is not a known SE of CMF, but as Pajim said, there is no rule book for SEs! I get what others don't!
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Thanks, and yes the pain is real and somehow related to what is going on. I hate when Drs. minimize symptoms and pain. I had arm pain and side pain before surgery that I know was related to the cancer and they kept telling me not related. But it went away after surgery. I had irritable bowel syndrome from a 14 mm kidney stone that wasn't found for 2 years because IBS is not a symptom of kidney stones, but it certainly was for me. I hope they can help you!
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Update on my Pain specialist doctor's visit. He said the neuropathy was either a side effect of chemo or the bone mets pressing on the nerves. He suggested I see a neurologist for this problem but prescribed Lyrica for the neuropathy. I took one 50 mg tablet and was dizzy the whole day! I stayed in bed most of the day. I think I can deal with neuropathy - not dizziness! Hopefully it will get better by next week.
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Hmmm. One thing you could do is split the pill in half. Might not help or it might.
I've noticed that my toes seem a little worse than before. I'm only on cycle 1 so that's a hmmm. Given all the aches and pains I have in my back hip and legs from my surgical rehab, it's really hard to tell what's a chemo side-effect and what's due to the PT.
Week 3 starts tomorrow. So far I feel like this is the easiest treatment I've had in quite a while. I know it's early days yet.
One thing though -- I'm eating like a horse. Steroids are long gone. Is this normal for any of you?
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s3k5, that stinks. I know most of the side effects from medications that I take are worse than the problem. And it can take a long time to see a good neurologist, hope you can get in quick. I don't have any neuropathy. But ironically I had some before surgery in one foot, which I think was the tumor pushing on a nerve, so maybe the chemo is shrinking them and causing them to push on nerves. I always have my own theories, doctors hate me, lol.
pajim, yes I am eating like a horse. I was hoping to lose weight due to chemo, but no luck for that. Always hungry and treating myself to food I like. I'm off work too, I ate less when I worked. So gaining weight and no boobs and hair falling out. I read on one of the threads fasting before chemo may help the chemo work. I don't know if I can do it, and my MO has been serving lunch during chemo!!
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No idea whether fasting will make the chemo work better but it will certainly make you more likely to have nausea. Putting food in your stomach prevents that.
I lost 30 pounds last year on Halaven. I don't really want to gain more than 10 back but we'll see. Need more exercise. Which is a few months off.
S3K5 are you feeling any better?
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I'm in a conundrum. I don't know whether to gain weight and do DIEP or lose wait and get implants. I'm just trying not to think about it and I eat what I want to eat when I want to eat it.
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You go girl.
I can't help with the recon decision -- I never had one. My Mom went for implants but at her age (about 70) I think that's all they offered.
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JRNJ, go ahead and eat all you want. Enjoy life!
pajim and JRNJ, thanks for asking about me. Last week I was mostly in bed due to nausea, dizziness which I found out was a side effect of Lyrica given for nueropathy and general fatigue. Today, I am feeling much better, just tired.
I finally filed for short term disability from this week since I was getting too stressed out trying to work 8-10 hrs. Since I was working from home, my co-workers kept sending me documents to review. I couldn't keep up, so my MO and my manager suggested to take care of my health first. It is such a relief not to be logged in all the time ! I don't think I can continue on CMF any longer. I have been completely home bound for the past 4 months. It will be nice to feel normal again!
Are you both working? If so, how are you managing? How frequent are your treatments? Hope you both get good results from this chemo. I had a PET scan yesterday to see if the CMF worked - waiting for the results.
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Update on my scan results - the oncology nurse called to say that the PET scan shows mixed results with liver mets. Some lesions look like they have reduced actvity but there are new lesions with increased activity. Additionally there is diffuse bone marrow mets, which was not seen earlier. That's such a bummer!
I had a gut feeling that this chemo is not working, based on the consistent pain under my right ribs (where the liver is located) which seems to have gotten worse. Meeting with my MO early next week to see what she has to recommend next. No more CMF for me!
So far I have had 11 different chemo drugs and Halaven is the only one remaining. Did anyone here had this chemo drug? I will check if there is a Halaven forum . Good luck to all of you with CMF. Hope it works for you all.
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Hi S3K5 I'm sorry about the scan results. Yes there is a Halaven thread -- I spent all of last year on it. I'm sorry CMF isn't working for you. I find it easier than Halaven was, but Halaven wasn't bad either. You go two weeks out of three. Try to convince your MO not to start at the top dose but one step down. I got really really sick the first cycle but found the rest (at 1.1 mg.m2) to be quite easy. Worked the whole time.
I'm back to work now. Not 8 hours a day but still. I've been home rehabbing two hip surgeries. I still have PT two days a week so I miss some mornings. I have an extremely supportive workplace. They're happy to see me whenever I can show up. I like working. I like having something to think about besides me, and I really like the adult conversation. LOL. Not that my husband hasn't done a fabulous job, he has.
Tomorrow we're going to take the car to a parking lot and see if I can drive. PT says to get rid of the cane so I think I'm ready. I walk a little wobbly but not like I'm going to fall. If I could drive to work. . .and treatment. . .my life would improve tremendously.
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S3K5, So sorry its not working. You're at MSK right? They'll find something for you, they are the best. I'm glad you are home resting instead of stressing about work. I have been off of work since 9/24. I thought about going back part time, but my job is too hard part time, they would dump too much responsibility on me. I'm lucky, I work for the State, so I have good benefits, and they won't/can't? fire me, for a while at least. I think a year. My boss is kind of supportive, but freaking because I was in charge of a lot. I'm enjoying being home with my kids, even though they are also driving me crazy, lol. And have plenty to do around the house to keep me busy. Trying to make lemonade out of lemons. I redid my daughters room with her. I'll be thinking of you and hoping for the best.
Pajim, good luck in the car!!
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Hello to all.
S3K5 I’m so sorry to hear the scan results. I would be wondering about the effectiveness too.
I’ve been so sick since my last Treatment. I’d just finished a round of Tamiflu for flu symptoms and got the Treatment and Leulasta too. A week later I was back for IV fluids and Levoquin antibiotics. Pain, fever, nausea, diarrhea. I can no longer tell whether I’m sick from SE’s or Flu.
Hope everyone has a better week
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