CMF Question
Comments
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Hi Dianna, Welcome to the CMF thread. I'm so sorry that you had to come searching for us but glad that you found us. The women here are amazing and you'll find the answers to most of your questions.
CMF chemo is very doable. Oh yes, we were all scared at the start of it but most of us have made it through with flying colors! Your onc is right. Most women do not lose all their hair. It does thin but most people won't be able to tell that you've had any hair loss. You will notice it and probably panic as you see the loss when showering and washing your hair. That's a pretty common reaction. I used Nioxin hair products and I think they helped make my hair appear fuller and more manageable during the chemo sessions. They can be purchased online and rather cashy but it was worth it to me. Most women never need a wig and the hair loss will be so gradual that you'll know in plenty of time if you think you're going to need one. Unless it just makes you feel better to have one waiting and ready, I wouldn't suggest buying one right now.
During the days following a treatment, you will need to drink lots of water and fluids. You might want to stock up on some beverages. I found that lemon drops helped me with the nausea and like Crystal Light, too.
Constipation is a major issue with CMF so you might want to have a supply of laxatives ready and waiting.
You also might want to purchase Biotene mouthwash and toothpaste to use. It's supposed to help prevent mouth sores. I used if faithfully the entire time I was doing chemo.
I never had any problem with dizziness at all and if I took the anti-nausea pills that they gave me as soon as the treatment was finished, I had very little nausea. I just felt very tired and "out of sorts" on the third and fourth day following an infusion. Then I seemed to bounce back in time to have another one!
You will do just fine with this regiment. Come back often. Ask anything.....there are no stupid questions about this and tell us a little more about yourself.
The first treatment is the scariest because you don't know what to expect. After that first one, you'll take it more in stride.
Hugs to you!
Rita
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Hi Dianna, Welcome to the CMF thread. I'm so sorry that you had to come searching for us but glad that you found us. The women here are amazing and you'll find the answers to most of your questions.
CMF chemo is very doable. Oh yes, we were all scared at the start of it but most of us have made it through with flying colors! Your onc is right. Most women do not lose all their hair. It does thin but most people won't be able to tell that you've had any hair loss. You will notice it and probably panic as you see the loss when showering and washing your hair. That's a pretty common reaction. I used Nioxin hair products and I think they helped make my hair appear fuller and more manageable during the chemo sessions. They can be purchased online and rather cashy but it was worth it to me. Most women never need a wig and the hair loss will be so gradual that you'll know in plenty of time if you think you're going to need one. Unless it just makes you feel better to have one waiting and ready, I wouldn't suggest buying one right now.
During the days following a treatment, you will need to drink lots of water and fluids. You might want to stock up on some beverages. I found that lemon drops helped me with the nausea and like Crystal Light, too.
Constipation is a major issue with CMF so you might want to have a supply of laxatives ready and waiting.
You also might want to purchase Biotene mouthwash and toothpaste to use. It's supposed to help prevent mouth sores. I used if faithfully the entire time I was doing chemo.
I never had any problem with dizziness at all and if I took the anti-nausea pills that they gave me as soon as the treatment was finished, I had very little nausea. I just felt very tired and "out of sorts" on the third and fourth day following an infusion. Then I seemed to bounce back in time to have another one!
You will do just fine with this regiment. Come back often. Ask anything.....there are no stupid questions about this and tell us a little more about yourself.
The first treatment is the scariest because you don't know what to expect. After that first one, you'll take it more in stride.
Hugs to you!
Rita
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Hi Dianna, Welcome to the CMF thread. I'm so sorry that you had to come searching for us but glad that you found us. The women here are amazing and you'll find the answers to most of your questions.
CMF chemo is very doable. Oh yes, we were all scared at the start of it but most of us have made it through with flying colors! Your onc is right. Most women do not lose all their hair. It does thin but most people won't be able to tell that you've had any hair loss. You will notice it and probably panic as you see the loss when showering and washing your hair. That's a pretty common reaction. I used Nioxin hair products and I think they helped make my hair appear fuller and more manageable during the chemo sessions. They can be purchased online and rather cashy but it was worth it to me. Most women never need a wig and the hair loss will be so gradual that you'll know in plenty of time if you think you're going to need one. Unless it just makes you feel better to have one waiting and ready, I wouldn't suggest buying one right now.
During the days following a treatment, you will need to drink lots of water and fluids. You might want to stock up on some beverages. I found that lemon drops helped me with the nausea and like Crystal Light, too.
Constipation is a major issue with CMF so you might want to have a supply of laxatives ready and waiting.
You also might want to purchase Biotene mouthwash and toothpaste to use. It's supposed to help prevent mouth sores. I used if faithfully the entire time I was doing chemo.
I never had any problem with dizziness at all and if I took the anti-nausea pills that they gave me as soon as the treatment was finished, I had very little nausea. I just felt very tired and "out of sorts" on the third and fourth day following an infusion. Then I seemed to bounce back in time to have another one!
You will do just fine with this regiment. Come back often. Ask anything.....there are no stupid questions about this and tell us a little more about yourself.
The first treatment is the scariest because you don't know what to expect. After that first one, you'll take it more in stride.
Hugs to you!
Rita
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Rita -- Thanks so much for all of your suggestions! I think I will make sure I have everything you mentioned on-hand just in case! And I will be sure to pipe up with more questions as they come up! I think this was all just a shock because since before the lumpectomy, I've been told radiation only but now ... this. My oncotype score was 22, by the way, so it sounds like I am in a group of similiar people! I still have to have surgery again on July 26 (because of an unclear margin) but then the chemo will start on August 3. I think the oncologist also said that we could start the radiation sometime after the second or so chemo. Has anyone else experienced that? I hadn't noticed it on this thread but there are a ton of pages to read through!
Again -- many, many thanks!
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Welcome Diana.....I can't really add anything to what Rita has already said and she's right, everyone on here is great and always willing to help and answer any questions or concerns you might have. Personally, I was scared to death before starting but it did actually go okay. Hair loss was not to bad for me but I did thin quite a bit but basically I was the only one that noticed. I will be honest and tell you that I was more than a little scared after the 3rd and 4th treatments, which is when mine seem to really thin the most. BUT it was okay and not as bad as I thought it was going to be. I'm a little shocked that they are talking about doing radiation at the same time as chemo (if I'm reading your post correctly). That just seems like a lot on a person but I'm not a doctor so I guess I shouldn't be making those types of comments. Good luck and don't hesitate to ask whatever is on your mind.......
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Hi Diana, I just started CMF on July 6, so far so good! I haven't had nausea, just "foggy" brain. ritajean's info is great and other wonderful women here helped me get all ready. It is doable and you'll be fine!! (Sorry you have to be here, but it's a great place for help!) Wishing you all the very best!! ~Beans
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P.S. I'm a jogger and actually got back out today for a short slow jog - it's been since end of March due to all the surgeries, etc.
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Thanks, again, eveyone!
Beanius: I just noticed where you are from! I am originally from Ferndale, WA (up near the Canadian border) but went to college at St Martin's in Lacey, WA, and taught at Grays Harbor College in Aberdeen for a few years. Long story but now I live in St Louis (via Tokyo and Mississippi actually!).
The oncologist did say chemo and radiation together (with radiation starting later in the process). It's possible I mis-heard her but my husband heard the same thing. I don't know anything specific yet -- this was our first meeting. Anyway -- I was just wondering if anyone else had done the two together ....
Again -- appreciate all the advice! Just feeling a little nervous since my hair is so thin to start with! Cheers, Dianna!
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And, Beanius, I am so glad you are back to jogging! That gives me tons of hope! I haven't been running more than once since the lumpectomy at the end of June (jiggling = not good feelings!) but have been out on my bike riding (or on the stationary in the gym). Exercising makes me feel so much better! Glad you are out there too!
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Diana, welcome! I will be doing my 3rd CMF this Friday. The first one is the scariest. It really was a breeze in comparison to the crazy, scary scene I had going on in my head. Be sure to hydrate well before you go, it's easier to find good veins. RitaJean is the queen of this thread. She gave me great advice and her tips for you are great too. Be sure to have laxatives on hand, because she wasn't just whistling Dixie about CMF and constipation! Unbelievable! Ask your Onc what you can take when you go for your appointment. I suggest writing it all in a notebook, especially the post chemo meds. You will be understandably nervous and will doubt what you heard later. I would ask if steroids are necessary. Many of us are doing without them as they have their own set of side effects. I have never heard of anyone doing chemo and radiation together. I would definitely ask if that is what your Onc meant and do some more research if it is. These ladies on this thread are great. You are going to do just fine, you'll see.
Beanius- Jogging! You go girl! With this blistering heat in NYC I can barely walk out there!
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Hi English Teacher!
I just returned form a trip but I wanted to chime in --- I had rads and chemo simultaneously. I had a total of 8 treatments of CMF. After the first 3 treatments with CMFm I had the rads---the rads went through about 2 treatments of CMF. During the rads, my onc changed the formula of CMF to just CF because the M can cause some major skin discoloration during rads (or at least that is what I remember).And then the M was added back in for my final 3 tx of CMF. I was a bit more tired doing the rads simultaneously but outside of that, I don't think there was any problem at all. I found rads fairly easy to tolerate. If you have any questions, private message me.
Cyber hugs to all.
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Hi Dianna,
I'm not back to jogging (you go, Beanius!) but I get out and walk for an hour early every morning before it gets too hot and sunny. I walked the day after treatment number one and I think it's been helpful.
Hope you're all doing well.
CMZ
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Diana - yes, post lumpectomy jiggles were uncomfortable, so now I'm taking it slowly. I got three different onc opinions before I felt like I was comfortable with the treatment plan. Now I think so highly of my oncologist and it helps with my confidence. I've been in WA for about 5 years and came from CA. I'm in GH County in Ocean City! Small world. All over the states I keep hearing of heat waves, it's always cool here. I'll be doing rads in Aberdeen and I go to Seattle for chemo. How do you like St. Louis? Sounds like you've gotten to travel quite a bit. BTW, Designermom is not fooling about this tx causing backups. Thankfully I was warned about this ahead of starting; even so I've have a couple days that gave me trouble. My last resort was senekot at bedtime. Lots of dried fruit, fiber, fluids, etc. are highly recommended. Another BTW, I have gotten steroid at the time of infusion and so far it didn't bother me, however, if you can do without any extra meds I think that's great. At this point I'm just following Dr.'s instructions.One last BTW, I'm getting MF infused and C by pills. It's a 28 day cycle with 14 days on chemo and 14 days off inbetween - total of 6 cycles. Yahoo!!
Designermom - thanks again for "holding my hand" as I got up to the chemo #1 plate!! You were right and so helpful. I did get out for a teensy jog yesterday and I'm planning to try again today. It feels so good.
Thanks to ritajean too and all the great women here who have helped me!! Much gratitude and appreciation!!!!!
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cmz - I was nervous to try again but it's been almost 2 mo since my last surgery and my oncologist encouraged me to get back into it. I was so happy. They said that activity would help to counteract the fatigue. It's also really cool here which helps. I hope you can get back to jogging, but I'd check with your doc, of course. It makes me feel a little back to normal after all this crazy stuff.
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Beanius -- I miss Aberdeen! I loved teaching at Grays Harbor College but I needed a FT teaching job and so that is what I followed (and, indeed, I have been lucky to travel a lot -- easy enough to do when you are single with no kids!). I eventually moved to the St Louis area for a job and along the way met my husband and have now been in St Louis for 10 years (with lots of quick trips out to WA!). So this is a small world, just like you said!
So constipation is probably going to happen? (and sorry for asking but what is "tx"?) I think I will be getting all three drugs via IV (nothing oral) but I am not absolutely positive.
I so appreciate all the commets here -- I don't really know anyone who has been through this and I feel like I have so many quesitons and concerns. It's obvious that there are some wonderful people here! Thanks again, Dianna!
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Hi Beanius,
I had a mastectomy with a tissue expander which was replaced with a silicone implant last month. I'll have to hold off on the jogging for now, but this too shall pass.
Hope everyone is doing well.
CMZ
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Diana, the ladies are right....constipation was really bad but I used senokat(?) and did fine. I don't think any of us can tell you how important it is to drink, drink, drink lots of fluids while on this treatment. You want to flush out as much as possible. I drank lots of water but did get a little tired of it towards the end. Also, it's totally natural to have concerns and for me, also scared too death but it went really well and I am so thankful that I went through with it. Now, I know that I've done and am doing with the Tamoxifen all that I can do to keep this from coming back. It gave me an incredible piece of mind to know that! You're going to do great....keep us updated
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cabmom: Thanks! I will definitely make sure that I am prepared for the constipation! (which is odd for me because for the last two weeks I have had the exact opposite problem with the antibiodics I have been on from the infection I picked up during lumpectomy #1).
I will make sure I drink lots of water! I used to be a big Diet Pepsi drinker but stopped the habit (as a result of a trip to India two years ago!) BUT when I am stressed, I tend to head toward the soda. I need to stop that. I am an avid runner and bicyclist so you would think that I know better! So I will certainly to take the advice here to hydrate and stick to mostly water.
I have another surgery a week from today to take care of an unclear margin and then I start chemo in two weeks. I appreciate all the kind words of encouragement and am at least thankful that I have some time to get all the items you all have suggested!
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Hi all. My name is Stephanie , I am 37 years old and I am starting CMF this wednesday 7/21. I had a double mast. with tissue expanders on 5/24 and am doing very well. Oncotype came back at 16. Thought it was over, but I want to be aggressive as possible, so decided to do the CMF. Was toying b/t CMF and TC, but onc. at Sloan was very persistent upon not TC as he didn't think it was necessary, but I wanted to know I have done everything totally possible to avoid distant reoccurance. I am scared but reading these boards makes me feel a little more at ease. In addition to drinking LOTS of water and eating LOTS of prunes, what else should I be ready for? Someone said there was a CMF "shopping list" but I can't seem to find it. Any information would be helpful. Also, my onc. didn't really tell me what to bring with me to the appt or tell me what meds I would be on after the treatment. I am hearing to avoid steroids if possible. What do they give the steroids for? Again, any and all info would be great! Thanks in advance and I'm looking forward to "meeting" everyone on the boards.
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stephsal-Hi Stephanie, I'm glad you found this thread. These ladies are the best and will help you with everything. I, too, was concerned whether CMF was the right chemo for me. After researching, I ended up more concerned about the possible TC side effects. My Onc wanted to do TC. After researching and finding out that Sloan and Dana Farber and others still use and believe in CMF, I am happy I chose it. Did they do the Oncotype test on you? Mine was 16 which is relatively low. I might be wrong, but I think TC is better on more aggressive tumors and CMF is great for slower growing, less aggressive ones. It doesn't look like you have any lymph node involvement, did they say chemo was mandatory? In my case, even though I had one node positive, they left the decision up to me. I chose CMF and believe it will give me the added insurance I need.
As it sounds like you are about to start in two days I would definitely call your Onc's office and ask them to call in prescriptions for post chemo meds you will need. You need those in the house. Mine are Zofran which I take religiously for two days after treatment andI have not had problems with nausea. I also have Reglan for any breakthrough nausea, but have not needed it. You DO NOT want to wait until you feel nauseous. It is hard to knock it down then. Take the post chemo meds as prescribed. I asked if I needed steroids. I get a little in the chemo infusion and also Kytril at infusion time. I have not had to take more steroids and am glad. I am due for my #3 chemo on 7/23. This is very doable, you will be fine. Make sure you hydrate a lot before chemo. It will help them find good veins. And be prepared to drink enough to float away after! We will be thinking about you!
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Stephanie, my CMF takes about 3 hours, so make sure you bring something to drink, and some light snacks, and something to do, like a book to read or a craft project to work on. I also have someone drive me to mine; I get very sleepy from the Zofran they give me. (I get my Zofran through the IV before the chemo.)
My hair has thinned a little, but it's actually still growing too; I had my hair cut in April and I noticed last week that I need to get my bangs trimmed! But they aren't as thick as they were either, so I think the growth rate has slowed down more than normal. On the other hand, I have been noticing I don't have to shave my legs as often lately, that's a good thing for summer!
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Hey Mandy, I'm so glad you spoke up about having chemo and rads at the same time. I knew somebody on here had done that and couldn't remember who it was! As for me, I had the rads "in between" the chemo sessions. I had four CMF chemos and then broke for rads. The bad part was that after the rads I still had to come back and do the last two chemos, which I certainly didn't want to do!
Welcome to you new gals. You will find lots of support here!
Hugs to all of you...
Rita
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Thank you all for the info! I will keep my fingers posted that all goes well and I'll keep you posted and ask questions. Thanks again!
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Stephanie, Welcome! We will all be cheering you on......just a couple things that I thought I'd mention. You will want something for constipation, I used senoket and it worked great. Also, if you're concerned about your hair, which I was.....like many others on this thread and it's also what many on here suggested for me, was the Nioxin products. It worked great and you just want to treat your hair kindly while doing chemo. My hair thinned quite a bit but no one could really tell but me and my hairdresser but I will tell you that I was extremely nervous a few times. Thankfully, the ladies on here helped me get a grip on my emotions and realize it was normal and it would be okay and it was
! You will do fine and like you I wanted to know that I was doing all I could to keep this from happening to me again.....doing chemo and radiation, gave me that piece of mind. I hope it does the same for you! Good luck on your treatment and let any of us know if you have any questions or concerns. 0 -
Figured I'd share my constipation recipe. I ate stewed prunes every night for dessert. I stewed them with lemons and they tasted quite good (to me at least). I only ate about 5 or 6 prunes because more was too many. Then the night before my treatments, I started by taking a colace pill (stool softener). I took the colace for the next days (just one a day) until I was no longer on any anti nausea medications. And I kept on with my daily portion of prunes. The anti nausea medications cause constipation---if you google them, you will see that it is a side effect. It is also a side effect of decadron. So if you figure you are taking two anti nausea meds plus decadron, it makes for alot of constipation.
As for drinking liquids, it is really important. But for some reason water nauseated me during my chemo. So I drank ginger ale (the strong kind); aranciata (an Italian orange soda which is really orange juice and sparkling water) and sparkling water. I brought lemon flavored Italian ices with me to the cancer center and sucked on that during my treatments---keeps the mouth sores away.
Everyone is different and will have to figure out what works for them. But these were my basics.
Cyber hugs
Mandy
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English-teach - Aberdeen has so many nice people, must have been fun to teach there. Best wishes for an easy surgery next week and clear margins!!!!! (tx is for treatment)
cmz - wow, yes, I would hold off jogging until the doc gives the go ahead. And, yes, this too shall pass (Thank God for that!!)
hi stephsal - sounds like you are all set, good luck with #1 tomorrow, you should do great! Oh, if no one mentioned it, I recommend asking for ice chips to suck on for 30min during the infusion to prevent mouth sores.
mom2acat - how is everything going for you? your scans were unchanged? hope all is well.
ritajean - I was wondering why they put the rads in before the end of chemo, I'm curious about that for myself so I can get the expensive rads done during this year when my insurance deductable has been met...???
Mandy - thanks for you constip recipe, that is some good advice.
Designermom - you have another treatment this Friday? How are you doing? I'm wishing you the very best.
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Beanius, to answer your question about rads in the middle of chemo.......
My first surgery did not come back with clean margins. At that point, I wanted to consult a breast cancer specialist....a female surgeon who's very highly respected in a larger town. I had to wait about 3 weeks to even get into her. She performed my second surgery and as soon as I was mended I started on chemo. My oncologist wanted me to have the radiaton sooner than it would be if I completed all the CMF treatments because of the initial waiting and consultation period. He had a certain time frame in mind that he wanted the radiation completed, so we stopped the chemo and did the radiation. Then I went back to finish the chemo. At the time I thought this was pretty unusual but since then I have discovered that it's not really that unusual at all. You might talk to you oncologist about the rad scheduling for insurance purposes. I'd give it a try if I were you.
My thoughts are with all of you who are doing chemo this week.
Rita
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Rita - thanks for the explanation and for all your other help and advice here. I think I will talk with my oncologist about it, that could be a good option for me financially.
Peace, love, hugs, health, happiness to all.
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Along with what Beanius said, that's why I am sort of glad about doing the two together (CMF and rads). As I look at the calendar, starting the 18 week chemo regiment in August puts me in the middle of December. My (very high) insurance deductible starts all over again in January. This plan of doing both at the same time might get the rads done before the chemo is all the way finished (I think). So, in other words, I could be done by Christmas. And that would be very cool indeed. It kinda sucks that we have to think about the money aspect as well as everything else.
Thanks to everyone -- your words of advice and encouragement have helped me a great deal during the last few days. Cheers, Dianna
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Ok. Well I had my first treatment (CMF) this morning. It was fast and I feel totally normal. When do the side effects come? I am taking the anti-nausea meds every 8 hours. What else should I be "waiting" for? I'm happy but scared with the unknown. What about eating salad bars and frozen yogurt from the soft serve machines? Did ;anyone hear to stay away from this? I wish everyone luck with upcoming treatments this week. Is anyone from the New York/ Long Island area?
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