CMF Question
Comments
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For those who still had periods before starting CMF, did it stop them and if so by what week? I wish mine would stop. I won't miss them.
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Dianarose, if you are still having periods, that makes it even more important for you to take Tamoxifen or an AI once you are finished chemo. I had been having regular periods prior to chemo but I never had another one once I started chemo.
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MaryNY- I got my period when I started chemo on 5/30 so we will see if they stop. After 41 yrs of having them it is time for them to go. I will have my ovaries out when I do my TE exchange even if they do stop. Lobular likes to go to the ovaries. Are you taking tamoxifen or Al's?
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Dianarose: I took Tamoxifen for two years. I'm now taking Aromasin (exemestane) which is an AI.
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Hi
Ritejean, you must be so excited to stop the arimidex. I am now on 5 1/2 years. My onc says I can stay on if I want to and we will revisit this every 6 months. I dont know what to do...I am too scared to stop it. Well, I am glad all is well for you.
Hope everyone is well, today.
I am going for endoscopy and colonoscopy tomorrow...yuck! Well, today is the yucky part and I really think it is barbaric...lol. I had one 4 1/2 years ago...I am supposed to repeat every 3 years but I had my hip replaced last year and couldnt do it.
hugs and prayers to all
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Hi- I finished round one of the cmf and after I stopped the following week my hair started to really fall out. I was devistated. My hair was long and when I washed it or combed it, it came out in clumps of long strands. I always wore it in a pony tail to work and yesterday the elastic wouldn't even stay in. I had it chopped short last night because I couldn't handle it. For those who had hair loss did it continue after each round? If it does I will be bald. I am having a harder time with the whole hair thing than losing my breasts. I have been using the Nioxin shampoo, conditioner, and some other foam that came with it that you don't rinse out. This totally sucks. MO said I wouldn't lose my hair on the regimen I am on. I take the Cytoxin in pill form.
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HI Dianiarose!
That is a bummer about your hair. I had cut mine short before I began chemo so I probably did not notice everything. I was on the IV every three weeks regime.....at the 4th treatment, I lost alot of hair. When I finished my shower, I literally thought there was a mouse in the drain--but it was my shedding hair. My scalp tingled and I thought I'd lose all of my hair. But just like that, it stopped failling out. I wish you the same luck. Just remember that whatever happens, your hair will grow back. So don't let that stress you. Hugs to you. Mandy
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Thanks Mandy- I had the IV twice and 14 days of the pills. I have had nothing for a week and it has been the past 4-5 days that it all began. I really hope it stops and doesn't continue when I start the next regimen on the 3rd. It was just the last straw for me. It has been a long road up to this point and I just had a melt down.
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Hi Dianarose!
We all have our moments as we go through this bc trip. Feel free to come here and complain--it is the one place where everyone will understand what you are going through. I certainly spent alot of time complaining while I was in treatment. Losing your hair can be very symbolic and upsetting so your reaction is very understandable. Take care. Sending a huge hug to you.
Mandy
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Dianarose:
I can't say I wasn't devastated when I lost all my hair 16 days into treatment, but at least it was a reminder that the chemo was working. In some ways it's easier with those chemo regimens when you know for a certainty that you will lose ALL your hair rather than coping with the fear that you may lose it with CMF. For me the period when it was falling out was a lot more stressful than when I was completely bald. Once it was gone, I just had to deal with it. And there was a certain freedom about not having to worry about hair from then on.
My guess is that you will not lose any more. I know when I started CMF (after four rounds of AC) the oncologist said my hair might even grow back while going through CMF. I did get the beginnings of some downy hair but it realy didn't take off until I'd finished the CMF too.
In the meantime, the short cut is a good idea. It's bad enough dealing with hair loss when the hair is short, but when it's long and it comes out in long strands it's really upsetting. I know you said you work in the food business, so wearing a scarf while at work would be very acceptable and would relieve you of the worry that others might notice any thinning. Your insurance should cover the cost of a wig if you want to go that route -- there's usually a maximum amount allowed, in my case it was $400. But a wig can be hot and uncomortable and probably esp unpleasant to wear while baking. But you could get a nice one to wear in your own time.
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Well, I forgot to take my two Cytoxin pills yesterday that I am supposed to take daily. I'm sure I am not the first woman to forget and I guess it won't kill me, haha. I see my mo on Wednesday. I can hardly wait to tell her---not.
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Did any of you lose hair any where else besides your head while doing cmf? I still have to shave my legs and arms. My lashes are still there too. I hope they don't go.
Jeannie- I would like to forget them everyday LOL.
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I lost hair everywhere, except eyelashes, but that was from the AC. It was great not to have to shave legs or underarms. I lost eyelashes and eyebrows a couple of weeks after CMF treatment ended. AFAIK, typically one doens't lose them with CMF.
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I am trying to find information on why my MO is giving me the cytoxan in pill form verses IV but I can't seem to find much information other than the side effects are harsher when taking the pill form including hair loss. Does anyone know if the benefit is better one way or the other. I am still losing my hair and it appears most of you got your dose IV verses the pill. I am calling my MO tomorrow to ask him, but would love some information from someone who has been through this. Also when getting the IV for every 21 days, how many times did you do this.
I would love some feed back.
Thanks, Diana Rose
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Candie, I can stop the Arimidex on August 10th, which is my 5 year Arimidex date. My onc doesn't like to go over the 5 years because he thinks there are too many side effects and not much that shows it continues to be effective. It sounds like your onc is going to keep a close watch on you. That is good.
I'm off to golf in the Ladies' Evening League. I love summer!
Hugs to all of you.
Rita
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Hi everyone. I have been gone from the forum for awhile. Our only son was married April 14, plus I have done really well throughout CMF...what a blessing. had last treatment June 18. My onc has me starting on Femara to take for 5 yrs. I assume this is similar to Arimidex...an aromatase inhibitor?
One other question, please. I have been always fortunate to have looked younger than my age. I now have wrinkles I did not have when I began CMF. has anyone else experienced this....if so any suggestions?
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Packy- I noticed this too and started using RoC retino A products. It helps. Did you have Cytoxin in pill form or infusion and did you lose your hair? Congrats on finishing your chemo.
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thanks, Dianarose. IV Cytoxin.My doc preferred this over pills. I had six treatments - 3 weeks apart. had to go an extra wk twice, as platelet count was low.
Lost some hair starting about half way through, but luckily I have very thick hair, so you really can't tell.
How are you doing?
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Packy, Congrats on your son's marriage and on finishing your chemo! I'm so glad you did so well with the CMF. Yes, Femara is very similar to Arimidex. Arimidex was around first but they supposedly do the same thing.........get rid of (block) the estrogen in our bodies.
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Hi all .. Last treatment today .. Woo hoo .. All is well .. Minimal side effects .. Hair still shedding but still there .. Curls do help .. Roux color mousse helps cover gray but only lasts until next shampoo .. Eyebrows and lashes thinner but still there .. Will start AI's in 3 weeks .. here come the hot flashes again,yuk .. Good Luck to all still getting treatment .. You'll get through it fine .. xxoo to all!!
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Yea smva! Done! Finished! You did it! You're a true inspiration to those still going through the treatments. It won't be long and you'll be feeling like yourself again. it does take some time for the chemicals to get out of our bodies. I remember that I wanted to feel perfect instantly. Nope, didn't work that way!
I didn't lose all the hair on my legs or under my arms, but it sure grew slowly. I really didn't have to shave very often while doing the CMF and in the weeks immediately following my treatments. That was something that I didn't mind at all! :-)
I'm off to meet a friend for a glass of iced tea and then to get a hair cut. Have a great day!
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Diana, my MO says the pills work better than the IV but I guess every doc reads various studies and makes up their own opinion. As you know, I'm not losing any hair after 5 weekly treatments.
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So how are you feeling, Jeannie, now that you're really getting into the chemo program? It's great that you've had no noticeable hair loss!
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Got my wig today. It feels nice to have hair. I got a long sexy one. If I have to wear this for a long time, I wanted something I felt good wearing. At first they said my insurance was going to pay 350.00 of it and found out today that they won't. I was not expecting to pay the full 950.00. I better work some more hours this weekend and from here on out to make up for it. BS is expensive.
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Dianarose: did you get a prescription for the wig (cranial prosthesis)? I brought my Rx to the wig store and they did the paperwork. My $400 wig was fully covered.
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RitaJean,
Thanks for asking! Physically, I'm doing pretty well. I am much more tired, though. I'll be fine and then all the energy drains from my body. I'm trying to get some exercise, which ironically is supposed to help. I've had some, hmmm, bowel issues but I'm getting that under control. My mind is a little fuzzy. They lowered my Cytoxin dose because my blood tests are trending down, which means it's working too well, I guess. I really don't want the possible pain from a Neulasta shot. Emotionally, it's been hard. Time seems to go by so slowly because I am not doing my regular activities, for the most part. It was nice to have a milestone of sorts with being halfway through this first round. But I forgot I have supposedly ten years of antihormonals to face when I'm done. I will be an old lady when its all over. But I will be alive.0 -
Hi Jeannie, glad to hear you're doing well .. I think you'll get through this fine .. One question though, why 10 years of AI's? I thought it was generally 5. Good luck with the rest of your treatments.
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Just a follow up about having wrinkles that weren't there before CMF..........has anyone else, especially those who have completed CMF some time ago, experienced this....and hopefully had it reverse after getting over chemo?
vanity, vanity....oh well
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Packy- there is nothing wrong with a little vanity. I didn't think mine was with my hair until it started falling out. I am only on my 2nd regimen and I see a lot more wrinkles, so maybe it is more the stress than the chemo. How long ago did you finish your chemo?
I am already tired of the whole wig thing. It's a pain in the you know what.
I wasn't as tired with the 1st round, but had nausea. This round I am tired and not much nausea (yet) to speak of. Does each round effect you differently. I do the 14 days on then 14 days off.
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Mary NY- I called my insurance and they pay nothing towards wigs. I am applying to The Maine Breast Cancer Coalition to see if they can help. They helped me with some bills my first round in 2004. They are a great group who help a lot of women here in Maine.
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