CMF Question
Comments
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@Marciniakk, I was on oral cytoxan every day and infusions of methotrexate & 5-FU every week, and kept most of my hair. I had very thick hair to start off with, so even if I had shed quite a bit it would not have been very noticeable.
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curveball, that makes me feel better. I'm Karrie, by the way. Diagnosed in Sept, mast in Oct, chemo started in Nov. Reconstruction delayed due to breast expander removal after contracting MRSA. Reconstruction will be my home stretch, and I counting down!
Curveball, I take three 50mg pills a day for two weeks at a time. How many mg did you do a day? I thought my dose was high since I'm a light weight but my onco nurse says it's not.
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Karrie, I don't remember what my dose was, and it was last year, so the information has scrolled out of my online medical record.
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Thank you for your responses. I've read many of the posts on this thread and have seen your name many times. Cannot wait to be done!! I'll celebrate the end of chemo with summer vacation. It'll be here before I know it, but it seems so far!
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Hi CMF sistas!
I don't have anything much to add--Ritajean posted on her facebook that all went well with her tests. I'll let her fill you in more. I think that all of us hold our breath every time we have a check up at this point and Robin, I'm thinking of you today. I go for my follow up on Monday (January 6).
Lillypoppy: What did your onc say (if I'm right, you went today). I also had terrible nausea because I am one of those who cannot metabolize zofran and that was the prescribed anti-nausea!! . In the end I used a combination of emend (very expensive but wonderful for me) and kytril and did not have the issues again. I hope that your situation is resolved.
Liz: how are you doing?
Marciniakk: Hope that all goes well for you. Like you, I celebrated the end of chemo with a summer vacation--went to Paris and London so it really was a great celebration.
Hugs to all.
Mandy
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Hi gals!
I'm back from the south after our Christmas visit with my kids. I didn't even take the computer as I enjoyed just spending time with my 3 young grandsons. I introduced the oldest 2...ages 10 and 7...to Monopoly and created a monster! :-) Of course they loved it.
When I left I did not know the results of my tests but the results were waiting for me on my kitchen table when I returned. All is O.K. Everything checked out just fine and the mammo was clear. I had the new digital mammo and it's a fascinating thing as it scans over the entire breast area. Anyway, thanks for the good vibes and prayers. Needless to say, I sighed a bit sigh of relief and am now ready to go on with my life until I see my onc in July. I don't think I'll ever get over the "pre-test anxiety." I know that some get rid of this anxious feeling as the years go by but it always seems to hit me a few weeks before. Now we have to get Robin and Mandy through their check-ups so we can all celebrate!!!!
Lillypop, I am so sorry that you are having such a terrible time with the CMF. I think that the inflamed liver bothers me more than the other side effects that you have described. I know that Lisa had some liver problems with the CMF many years ago so I am going to message her on facebook and ask her pop on this site and talk about it.
I am now off to do more laundry. I will be back later. Hugs to all of you!
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Mandy,
Paris sounds like a great way to celebrate the end of chemo. Thanks so much everyone for your support.
Mandy, what was your CMF regimen?
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Mandy - oncologist back from leave today - have emailed him and have appt to discuss Friday. Thanks for advice. Very much appreciated.
Ritajean - great news re test results. Pleased you've had a lovely time with grandchildren
Thank you so much for taking the time to contact Lisa for advice. I too am worried about liver. I feel more settled now but don't want any long term damage. I have always been one of those people who doesn't even tolerate tablets or alcohol very well .... One glass of wine and I'm very merry.. Two and I'm totally drunk (!!) .... What's known in the Uk as a "cheap night out" :-) I think I have a sluggish liver normally ( doesn't sound very glamorous does it?!) so I think my liver couldn't handle 2 full dose infusions in the space of a week. Marciniakk - karrie - I know you asked about dosing of oral cyclophosphamide of 50mg. My IV infusion is 600mg per infusion day 1 & 8 (1200mg total ) ( I too am fairly small, healthy BMI etc) so I would think that 50mg x 14 (700mg) sounds about right. No expert and obviously yours is oral and a more continuos dose but doesn't sound excessive. Hope you're feeling ok.
I must say although I don't wish breast cancer and it's treatments on anyone it's really nice to be here on this board with you ladies who have been there and done CMF and speaking with others who are going through it at same time is helpful too. There is so few women in UK having CMF although Oncotype has only just reached uk September 2013 and I wonder if there will be a return for women who traditionally wouldn't have been recommended chemo but the Oncotype is high like myself.
One thing I have noticed is that you (lovely) American ladies seem to ask many more questions of your medical providers and be more proactive in your own choices as opposed to the majority of (not all) English ladies (I have worked in the NHS in the past). I think it's the way the system is set up here and we just tend to go along with the routine - I had some limited medical knowledge which made me research and question as well as the fact I had private health care. This board and CMF thread was a great help to me and I'll say it again... Thank you so very much xx
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thanks Lilly. Actually I'm taking three 50 mg a day for 14 days which equals 150mg a day for a total of 2100 mg over two weeks. My onco nurse said the dose is higher than IV but equal to it since much of it is filtered through the liver and body. Sigh. This will all be over soon.
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Lilly, Rita sent me a PM about the CMF and my liver ...It has now been over 12 years since I had the chemo..
I ended up with liver disease they think caused by the methotrexate and maybe the tylenol I used for the bone
pain from the neupogen..at any rate it can be serious so please ask your onc about possible liver damage. Mine is
permanent. Are you also taking armidex at the same time as the chemo? they wouldn't let me..I hope you are doing OK now...but please keep a close watch...
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Hi ladies, just catching up on here and it is great to see all of you here although I truly wish none of us had to be here.
Lilly, I'm so sorry to hear of your reaction to the first treatment. Have you had an opportunity to talk to your medical team yet? These drugs can do unpredictable things to our bodies and since we are all so different it is impossible to know how we will each react. Hang in there!
Marciniakk, welcome from another Michigander here! I'm doing the IV Cytoxan so I can't really answer your question. The pill form was never offered to me for whatever reason.
Anyway, Happy New Year to all you sweet ladies! Tx5 is on Thursday...I'm trudging through all this. It just seems to go so slowly!
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HAPPY NEW YEAR TO ALL THE WONDERFUL LADIES ON THIS THREAD!!!!!
Best wishes for a happy, HEALTHY, 2014!
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Wishing all of my sista's a new year of peace, health and happiness!!!
Hugs.
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How often do you all wash your hair? I'm trying to baby mine. Only washing 2x a week and not blow drying or flat ironning. I use nutriox, which is similar to Nioxin. Also take biotin vitamins daily. Has anyone ever noticed hair growth while on CMF?
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I still wash my hair mostly daily. My shedding goes in cycles. If my hair is in its shedding phase, I try not to blow dry it or use a flat iron and just generally treat it very carefully. I've experimented with some different biotin shampoos, trying to find one I really like. One brand I tried I was actually allergic to. I just treat my hair very carefully these days; I don't put it in a ponytail or do anything that tugs on it.
My hair is still growing but it seems to be growing slower these days.
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Thanks, Macy. How much are you shedding a day? Where in michigan do you live?
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I would say at least a 100 or so hairs a day. Like I said it goes in cycles. I usually will notice lots of strands wrapped around my fingers when I'm washing my hair. And, of course, my poor hair in the shower drain that I have to clean out daily! It really freaks me out for several days and then the shedding slows down to almost normal for 3-4 weeks before it all starts again. I live in the U.P., but I'm getting treated at U of M.
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Macy, u of m is a great hospital. I had my daughter there at Mott's and she had heart surgery there when she was 4 months old. We used to live near there. We live in Bay City, MI, now. It's where we both grew up. How far are you into your treatment? How soon into it did you start shedding? Are you having Any other symptoms?
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I just had my 5th treatment today out of 8 and will continue on Herceptin until October. I started shedding about 7 weeks into treatment, after my 3rd tx. But, it isn't constant shedding, at least for me.
My side effects have been minimal. Most of my discomfort has been from the neulasta shot I get for low white blood cell counts. Funny thing was, I was told that I would not need neulasta with cmf because it is less aggressive. Ha! Oh, and a little dizziness, likely caused by the methotrexate.
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I'm glad you are doing good! I haven't had any side effects either, and have been feeling great. I'm also receiving herceptin. I have minimal shedding now, a few hairs on my hand if I run my fingers thru it. Seems like a lot to me, but it's almost the "normal person" amount. Still freaks me out a bit. I'm only 1 month in. I'll be done in May.
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Hi Ladies - My name is Michele. I'm 47 and live in upstate New York. I'm new to your group and had some questions. I'm sure I came to the right place.
I started CMF on 12-27-13. I'm having 6 treatments - one every three weeks. The first couple days after my first treatment I was fine. The 3rd and 4th day after I felt like I had a really bad hangover. Not looking forward to further treatments if the side effects get worse. Scared to death about losing my hair too. So far no shedding. I have fine hair so any shedding will be noticeable. I usually color every 5 weeks. Scared to do that or even blow dry or flat iron it either. Was wondering what to expect and when to expect the shedding to start. Also sort of off topic but does anyone else hate these tissue expanders as much as me? They are so uncomfortable. I've had an infection in my left breast twice now. Can't wait to get these things out and permanent implants put in! Anyway, any information or feedback from this fabulous group would be greatly appreciated!!!! Thank you!0 -
Hi Michelle - there are a few of us here currently having CMF at the same time as you and many ladies who I'm sure you have read much of the thread who are a wealth of support and information. My regimen is different to yours in the respect that I'm in the UK and CMF all IV is day 1&8 and 20 day break and start again for cycle 2. I'm scheduled to have 6 cycles (12 infusions). I started 12 December 13. My first treatment and side effects were much the same as yours but the second infusion I had a week later I had an inflamed liver and was hospitalised. Hair wise I've lost nothing as yet - like you I normally colour every 5 weeks (highlights) but have not coloured since 4 weeks prior to chemo. Roots beginning to kick in but I suppose a small price to pay for keeping hair. I've had lots of good advice from the ladies on this thread. I've not used my hair dryer on hot setting, straightening irons or any products and to be honest my hair looks better than before at the moment - condition wise. I'm washing my hair 2/3 times a week with a paraben and sulphate free natural shampoo. I think if it all holds out I may be tempted to colour a bit further along the journey as some ladies here have told me they did and it was fine. I'm just nervous like yourself.
LIsa - thank you for your advice re liver. I'm sorry to hear you have long term issues with your liver. I have been to see my oncologist today. He wants to monitor my liver enzymes closely as they are still elevated. He said to have repeat bloods today (which I've had) and that often it's the methotrexate part of the CMF which inflames the liver. If they remain elevated or if I have adverse effects from chemo again next week then he may lower the dose of the methotrexate. I will await the results. It's all a minefield of information and decisions to make.
Marciniakk and Macy - glad to hear your doing ok and sharing your journeys - it helps. We will get through this journey :-)
Macy and Mandy - the oncologist said today about neulasta injections and having Emend anti nausea tabs prior to chemo as well as the other antiemetics. I'm pleased to know the Emend worked for you Mandy. I'm keeping fingers crossed. I'm nervous about next weeks chemo but also want to get on with it so I can strike another one off.
I know I'm a bit late but had no internet connection for few days but happy and healthy 2014 to you all. Xx
Lilly x
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Hi Michelle, welcome! Sorry you have to be here.
As for SEs from CMF, hopefully you will experience fewer/less severe side effects from this regimen. Of course, everyone is different and these drugs hit us in various ways. But overall, for most people, CMF is often easier to tolerate than some of the harsher regimens like AC-T or TC. Hopefully you can take at least some comfort in that.
My shedding started about 7 weeks into treatment, after my 3rd tx. I had shedding for 4-5 days and then it slowed down. My hair didn't come out in clumps like what the poor ladies on the harsher regimens experience-but just a lot more strands than usual. The shedding for me started again about a week ago (so about a month after the first shed) and it has continued. Hopefully it stops again soon. I'm sure my shedding is cyclical with the treatments. I blow dry my hair with a cool setting, use 2 types of leave-in conditioners and use the heat tools sparingly. It seems to have helped my hair and like Lilly said, my hair is actually healthier in some respects without all that styling.
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Michele,
I had the same treatment plan as you and I experienced similar side effects. I was fine the first two days after the treatment, but if I was going to have any side effects, they always came on the third or fourth day and only lasted for a day or two at the most. Then I had a chemo holiday until the next infusion. I was told that the steroids have worn off by the third day and thus we have fatigue and sometimes nausea. If you get that queasy feeling, suck on lemon drops. That will help. Also drink plenty of water because that moves the chemicals through your body faster. If you get to the point where water does not taste good, try crystal light.
Most gals do not lose enough hair while doing CMF chemo to need a wig. The shedding is gradual and only my hairdresser and I knew that there was some thinning.
I think you'll do fine on this treatment plan. If you do have some side effects, it's usually easy to find a solution so they don't happen the next time. Hugs to you!
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Thank you ladies for all the info. I'm a little less stressed about it now. Feeling pretty good still. Had blood work done today (one week after 1st treatment) and all was good. Normal white blood cells and platelets so far. Keeping my fingers crossed for no more serious side effects down the road. I'm sure I will be anxious before my second treatment though.
Lillypoppy - Sorry to hear about your second transfusion side effects. Hope you're all recuperated from that. Hopefully that doesn't happen again. Jeez
Macy - Thanks for all the info regarding hair loss. Hopefully mine is minimal too. I'm afraid to blow dry, curl, flat iron, etc. we'll see what happens.
Ritajean - Your diagnosis and mine are almost identical. Glad to see that 8 years later you're still doing well.
I'll keep you all posted on my progress. Wishing you all a happy and healthy 2014. Hugs to you all!!! xoxoxo
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Hi Sistas!
Hope that you had a nice new years celebration and that being in treatment did not interfere too much.
Just wanted to put in my two cents about hair loss. I was on CMF every 3 weeks for 8 times. After my 4th tx, I lost so much hair taking a shower one day that it looked as if a mouse was in the drain--needless to say I screamed and made someone else figure out what was in the drain. When the bad news came back that it was my hair, I was certain that this was it and that I would need a wig. But this was it, in the sense that the hair loss just kind of stopped and I never lost enough hair to need a wig or scarf or anything. I had a short hair cut which made my hair look thicker than it is/was and so that may have helped somewhat. I washed my hair about every 3rd day and treated it kindly--not alot of hot blow drying etc.
Lillypoppy: be sure to take all of the anti-emetics with the Emend. I took kytril, emend, and dexamethasone for nausea and and had to take all of them.
Well I had my regular doctor's appointment today and she declared me to be "healthy." That was such a good feeling that I walked the 2 miles back to my house, even though there was alot of snow on the ground and a real chill. :-) I go to my rads onc for follow up later in the month and will report back then.
Hugs to all.
Mandy
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Happy New Year Everyone! My scans got pushed a week cause here in CT we had a big snowfall, so I don't go for my mammogram and ultrasound til next Friday. Ugh. I just want them to look inside me! lol For you ladies going through CMF now, I wrote a quick synopsis to lillypoppy a page or two back talking about my treatment. But I know you are all asking about hair. I had hair loss, but really, only me and my hair dresser knew. My hair did still grow. I needed haircuts. And I colored my hair throughout treatment. I did it myself at home and did my roots. My oncologist knew and nothing bad happened. I have dark brown hair so I had to do it. I couldn't look as crazy on the outside as I felt on the inside. If anyone wants to friend me on facebook, send me a pm, you can see my hair. I just finished chemo in may. you can see my pics throughout. Robin :-)
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And Robin was one of the most beautiful women during and after her chemo!!!!!
Yeah to Mandy for the good "healthy" report! That's what we like to hear! Congrats! How well we understand that weight that rolls off our shoulders when the results come back good!
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And Robin has a photo of her getting chemo for her last tx in her facebook--she looks stunning (and had lots of hair). I forgot to mention that even with the hair loss, no one realized that I had the hair loss....I think I saw it more than anyone. Just wanted to chime in.
Ladies, take care and let us know how you are doing.
Hugs.
Mand.
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