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CMF Question
MargaretB
Member Posts: 771
I thought it was better to post this under this forum rather than the starting chemo one, so hope you ladies can answer a question for me. A co-worker is now going through CMF and having a really difficult time. I gather she is on a 14 day regimen of pills; she gets something like 6 Kytril pills for nausea, so she saves them for work days. I have given her the advise I could but it may be different since I was on AC. She still has her hair and has been through two treatments; she wanted to know if she's going to lose it completely, not lose it, or lose just enough that she has to get a wig.
I figured you ladies would have the answers for me.
Margaret
I figured you ladies would have the answers for me.
Margaret
0
Comments
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If she needs more nausea meds, she should ask for more and not have to ration them. I hope she get help in that dept.!
Take care,
Hattie0 -
Margaret,
CMF chemo has a few different regimens. I did the "classic" CMF regimen, which was 14 days of cyclophosphamide (Cytoxan) pills and intravenous methotrexate and 5-fluororuacil (5-FU) given on day 1 and day 8 of each 28 day cycle.
I had 12 infusions over a course of 6 months, I lost about 50-60% of my hair. I never needed a wig but my hair did look thinned out. I used Nioxin hair products to make my hair look fuller.
With your friend doing the Cytoxan in pill form it's really important that she drinks a lot of water. Also taking the anti-nausea meds can cause constipation so what I did was start taking stool softeners 2-3 days before my infusions and continue a few days post infusion. If I needed to continue my anti nausea meds for more than a few days post infusion I continued taking the stool softener too. If your friend needs more anti-nausea meds tell her to ask for more, I was given a script for 30 pills with 2 refills and directions on the label 'use as needed'. Nausea wasn't a big problem for me, I never had to get a refill on my meds but it was nice to know they were available if I needed them.
Fatigue hit me about the halfway through treatment, that & the constant battle to keep constipation at bay were my biggest problems while doing CMF.
Best wishes to your friend.0 -
I started the CMF regimen on 1/13. I have everything in my IV drip, no pills. Heard the pills were a little harder on the body. I (knock on wood) had no nausea, just tired. I will go back every 3 weeks (2/2 is the next) for 6 treatments total. The first one was relatively easy. But you have to take a day at a time. She may want to ask about doing everything in an IV drip but there is probably a reason she is doing pills (I had a choice of 4 different CMF versions).
I agree with Hattie that she should have better nausea meds and ask for them. I have Aloxi in the IV drip and was sent home with Ativan (anti-nausea/anti-anxiety and sleeping pill) and Compazene (anti-nausea,which I didn't even need to take). Another good one she could ask for is Emend (very expensive and not all insurance companies cover it. Mine does but he wanted to try the Aloxi first followed by Ativan, and it worked fine for me so far.)
Give her hugs and kisses and tell her to e-mail me if she needs more help.
Rae0 -
Margaret, your friend will get many good suggestions on here. There are quite a few of us that do/did CMF. And yes, plenty of water is a must. As far as the hair, everyone is different. But she can expect 25-50% loss which I hear is normal. Constipation is a problem. I use Senekot when I get constipated. Kats, StrayKat and I can all share our knowledge, can't we gals..
Good Luck to her and you also.
Rae0 -
You ladies are awesome. Thanks for the quick responses; I'll send her an email right now.
Margaret0 -
I did the CMF too...I had the opposite problem of diarrhia..I was particularly tired in the last two months, but I never lost all my hair..about 50 percent.but it wasnt' healthy looking hair. I also had problem with white blood counts and had to take neupogen shots with which I had a few problems..as everyone says drink lots of water!!
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I am also a CMF veteran, I did the exact same regimen as Kats. Had no major problems with doing it, just a little dizziness in the 3rd month, My Onc changed my anti nausea meds and it went away immediately.
I also lost about 50% of my hair, but it is really thick, so wasn't noticeable to anyone. All the new hair came through curly and in great condiditon.
I found the fatigue was cumulative and got worse month by month.
I agree with the ladies......she needs more nausea meds... and she should be taking them BEFORE she feels nauseous. Drinking lots of water is a must.... and it helps flush the chemo through the body.
Lorna0 -
Hi Margaret:
I'm on the 4th month of the same CMF regimen as your friend. During the 14 days of cytoxan pills I take Kytril everyday and have Compazine as a backup. My nausea sets in about 2-3 days after each infusion and continues through the 14 days of cytoxan pills. In my case I have lost most of my hair. My oncologist was shocked by my hair loss so I guess severe hair loss on CMF is more unusual. Because I thought I wouldn't lose my hair I didn't get a wig until my hair started falling out in clumps which was about the 2nd month of treatment.
As others have said please tell your friend to drink lots of water! I slacked off in the 3rd month and got a bladder irritation. I got sick of bottled water and now drink Pellegrino which also helps for the nausea.
All the best to you and your friend.0 -
I had what my onc considers standard CMF, 6 tx three weeks apart. I had to have one Nuelasta shot after chemo #4, and had no side-effects. When I first came to the boards I read a message that said CMF is sometimes referred to as Chemo-Light, so perhaps my expectations were a little higher than those I would have had if I were given AC.
I sent a PM to trooper Rae when she first came on the board, describing what my experience had been. Here's that message:
Well, it's been a little over 3 weeks since my last chemo and I had my first rads on Tuesday. Whew! Quite a ride.
Here's a list of the problems, small and large, I had while on CMF. It's easier to list them now that I have some perspective of the entire treatment procedure.
Mouth sores - I knew to expect them so when I felt the first one, I called the onc immediately and got Magic Mouthwash. It worked instantly. One bottle lasted through the entire treatment period. Also bought Biotene toothpaste - supposed to help to prevent sores. They weren't painful, just annoying. Small problem.
Mouth taste - some describe it as metallic, but I can't quite place it. It started sometime after the first chemo and I still have it today. I never had any problems with it changing the flavor of food, thank goodness. Small problem but a lingering one.
Hair loss - maybe 25%, not noticeable to anyone but me and my hairdresser. Small problem.
Infusions, blood tests, etc. - I have a great vein in the crook of my left arm. It was used for everything and is still healthy. I don't have any particular aversion to needles, so that wasn't a problem either. Am glad that I didn't elect to have a port - my onc thought that I wouldn't need one but that I'd get one if any problems developed. No problems.
Nausea - none. Took the meds prescribed when I was supposed to. Ativan and Compezene. No problems.
Vomiting - none. See above.
Heartburn - some at times. I don't know if it was caused by the chemo or the weird diet I placed myself on. Took Tums for relief. Small problem.
Appetite - lost about 20-25 lbs. I'm 5' 7" and currently weigh 117. Far too thin. My skin is sagging on my arms, butt and thighs. I hope to fill out! I had to remember to eat and my daughter called a few times each day to remind me. The thought of it was overwhelming, like I couldn't 'do it.' I thought that meant nausea, but it wasn't. Just a total lack of interest. I bought a case of Ensure and had a few cans each day (250 calories per can). I drank lots of liquids, iced tea mainly. When I finally had a craving for food, I'd often go out, order something, take a few bites and have the remainder boxed to take home. Every week on garbage night I'd throw all the boxes away. I have no explanation for this! When I felt a little weak I'd remember to eat and the weak feeling would go away. Big problem.
Constipation - this has been on-going since chemo number one. I took the advice of some on the board and bought a mild vegetable-based laxative/stool softener. (Can't remember the name of it right now. Starts with 'S.') This worked pretty well. Nothing close to regularity though. I took them every day, not just around the treatment days. I'm slowly starting to feel normal again. I didn't have any cramping, but an urge to go and then I couldn't. Frustrating! Small to medium problem.
Insomnia - I sleep only 2-3 hours at a time. Sometimes I just get up, go to the bathroom, back to bed and sleep. Other times I can't sleep so I read or watch TV for a few hours. There was one short period - 3 days - where I had a total of 4 hours sleep. I took Ativan and it worked well enough to get me back to my 2-3 hours routine. This is exhausting and just drags me down. Big problem.
Fatigue - goes with insomnia and is also an additional chemo response. This has been the biggest problem of all and I'm not over it. Here's something from breastcancer.org that discusses it: http://www.breastcancer.org/fatigue_intro.html
This discussion board has been my lifeline, my therapy group. I don't post often but read everything. While waiting for treatment to begin, I sometimes 'over read,' and that scared the hell out of me. I'd stay away for a few days and then come back.
One of the problems I didn't mention in the message to
Rae but subsequently discussed in a message to her was chemo-brain. It was scary and lots of fun at the same time! It was big time after tx #2, 3 and 4 but abated during the remaining tx. I still have memory blips that my family and friends find amusing, I less so.
Hope this helps!0 -
I'll be going for my 4th CMF tomorrow - infusion every 3 wks - for 8 cycles. Mostly loss of appetite and constipation has been my problem - and some fatigue. I was prescribed Kytril also - take the night of the treatment and then 3 days. Sometime take compazine after that - had more nausea last treatment. I don't think I drank enough water. I take 2 colace (stool softener) every day - since I started treatments. So having a couple a down days every 3 weeks isn't bad at all (I'll remind myself of that on Friday!). Have not noticed thinning of hair - only the gray because I don't dare color it
I'm going to treat myself big time when I'm done with chemo in April. Straykat - thanks for words of wisdom - helps alot. There wasn't alot about CMF on the boards when I started. 0 -
Ladies, thanks again. I have sent her all of your responses. For her, this is a recurrence; she had a mastectomy 7 years ago, followed by chemo and 5 years of tamoxifen, and now this, so she's been quite upset although is handling it very well. Scares me though since she did take tamoxifen.
Margaret0 -
Ladies - I'd like to keep this thread going, if you don't mind - we are all at different stages so it's hard to go to each month chemo started. I've learned alot here - many of the threads are about A/C, taxol, taxotere,, etc. I like having this resource for help, encouragement,sharing, etc.
I just had my 4th treatment yesterday - half way through. The put the cytoxan in slower and gave me some antivan for later to take with the Kytril - much less headache, slept great and certainly not as queasy as the last time. I would not have thought to ask about the slower rate unless I read it on these boards. My onc also told me that if my nausea gets really bad they will give a patch typically used for sea sickness! Does that I mean I get a cruise when this is all done
Thanks everyone for your sharing0 -
Yes, I also like having a thread for CMF regimens.
I had my blood work this morning and again, my counts remain good. I know I am just going to start my 2nd treatment next week but the oncologist feels very encouraged that my counts are staying up.
Margaret, keep us informed on your friend.
Marcia, hugs and just think, you are 1/2 way through, YEAH.
We can and will all get through this.
Rae0 -
Marcia
You have already received so much good advice on CMF chemo. I completed 8 rounds of the straight IV regime in June 2004. It was long, but do-able. I am just offering you some encouragement. There is a light at then end of the tunnel.I had to get Neulasta after each chemo due to low white counts. It worked and I never skipped a chemo or got sick with a fever, etc. I did battle quite a bit of nausea as well. It took me about 2-3 months after chemo was finished to really have my energy back and start to feel normal. But it did happen!
Good luck.
Sue0 -
Sue - thanks for the encouragement!
Rae - sounds like things are going well for you, too.
Glyn - hope things are going better.
Margaret - hope your friend does well.
My blood counts have been so good - I only have to do bloodwork on the days of chemo. I'm really doing so much better with the Antivan - I should have called last time when I was feeling so crappy - learned my lesson. Should be back to normal again by Sunday. take care everyone0 -
The 5-FU can cause mouth sores, I used Biotene mouthwash and toothpaste it's antibacteral and available over the counter. 5FU can also cause dry eye which causes excess tearing of the eyes. I had alot of tearing & was told to use artifical tears eye drops which sounded contradictory to me because I already had a lot of tearing. It did work though I had much less tearing when I used the artifical tears.
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Yes, 5-FU can cause the mouth sores. Biotene is a life saver. My dentist will probably give me a big "Thumbs Up". My teeth never looked whiter...I think I will keep using this even after everything is wrapped up. I am very faithful about keeping my mouth clean and so far so good.
Hope everyone is doing well. My next round is Thursday (2/2, and No. 2). My daughter is taking me so hopefully we can watch our soap (All My Children) as my appointment is at 11:30.
Rae0 -
Hi CMF ladies:
I've done 4 cycles of Classic CMF and am switching to IV CMF starting with this Wed. infusion. Could those of you who are doing IV CMF tell me what to expect with the infusion side effects? I did the cytoxan in pill form and am worried about what it will be like to have the cytoxan in the IV.
Thanks0 -
Glyn, I am doing the IV CMF. Outside of a little headache with the Cytoxan as it went in (just a little bit), no infusion side effects. Headache went away when I got home with 2 extra strength Tylenol. Will have my second one on Thursday. My nurse told me to eat ice and drink water during the IV which I did. Guess it keeps the mouth sores at bay. Haven't had any but it has only been one treatment. Take the antinausea pills they give you. (They have me aloxi and decatron (?) in the IV) and outside of being a little goofy for a couple of hours afterward, I did fine. They also gave me Ativan and compazene but only needed to take the ativan for night time.
It was nice having everything in one IV (at least I thought).
Good luck and keep me posted. Maybe StrayKat will respond. I think she did IV CMF also.
Rae0 -
Hi Glyn,
I just finished my 4th IV CMF last Wednesday. I also get aloxi and decadron in my IV. I had a bit of a problem with the cytoxan headache at #3 but they just slowed it down for me this time - helped alot. The also gave me ativan this time as I was a bit more nauseous last time - it helped but it sure makes you sleepy - not a bad thing at night. I also have Kytril and compazine to take. Back to work today - but was a bit tired - will take it easy tonight. I haven't had any real mouth sores - if I feel something not quite right - I do an extra rinse with Biotene. I don't have great veins but really don't have a problem - glad I didn't do a port. Like Rae said - take the anti-nausea pills. Good Luck - I'll be thinking of you on Wednesday
take care0 -
Ditto everything Rae said!
I just looked up the drug on Lance Armstrong's chemo website to see if there would be an explanation for why some was given in pill form and the other in the IV. I couldn't find a clear reason to explain the differing methods.
One thing I did notice was that the pill form requires it to be taken with food, which might be difficult for those who for various reasons find it difficult to eat (I did) or have trouble with nausea or vomiting.
Another is that it's just something else to do and remember. We have enough to do of that!
Here's Lance Armstrong's website for future reference:
Chemo Care - Lance Armstrong
Best of luck to you!0 -
gayle~ so you decided to switch? I don't think you will have any problems. You know how it went with my iv CMF infusions. nausea was my biggest problem and emend helped with that. email me if you have any other questions. Are you doing 4 more? or just 2 more? I didn't realize there were so many of us CMF sisters here
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Thanks to all for answering my post regarding IV CMF.
I am very anxious about the infusion tomorrow. But your replies made me feel better. I'll let you know how it goes.
Thanks again!0 -
Good luck for tomorrow glyn, I'm sure everything will be fine!
Lorna0 -
Yes, good luck girl.....it will be fine....chew or suck on the ice and take your meds. I will be following on Thursday (2/2).
Rae0 -
I did 8 rounds of IV CMF. I started in Jan '05 and finished in May'05. I did my first 3 infusions every 3 weeks and then my onc switched me to dose dense CMF. I did my treatment at Sloan Kettering in NYC and the onc. said there were studies going on looking at dose dense CMF and it seemed to have good results. I lost about 50% of my hair. I did get mouth and throat sores but they weren't as bad as traditional canker sores. My onc suggested that if I felt ok to exercise as it would cut down on the fatigue. So, i was religious about it...albeit somedays I would come home from the gym and sleep for 2 hours..but that was the extent of my fatigue. As far as the chemo headache, the chemo nurse gave me a tip...make sure the meds are pumped into you slowly. That will cut down on the headache and the metallic taste (which I never got). Also, DRINK. DRINK, DRINK your water BEFORE your infusion and don't go on an empty stomach!!!! After my 1st chemo I suffered from horrible constipation. So, next time, I took a Senekot-S the night before the chemo and the morning and evening of the chemo. Because I was doing dose dense I had a very low wbc and had to take the Neulasta shot 6 times. That made me feel worse then the chemo. I haven't had a period since March'05. I did rads (Canadian Method) and am now taking Tamoxifen which I have no side effects from.
Kats and Lornauk were so helpful to me when I was starting my CMF. I hope I can be as helpful as they were!
Steph0 -
Well, tomorrow is round 2 for me. Hope I do as well as after the first one. It was kinda scary I have done so well. I know something will hit eventually and with everyone's support I will make it (just like everyone else does). I got a great document from StrayKat which really made me laugh about attitude....we have to keep it up....
Wish me luck and everyone have a great day. Will post tomorrow.
Rae0 -
Glyn - how did it go?
Rae - good luck tomorrow - I'm sure you'll do fine
I have to admit that even though it's been a week since my treatment - I'm dog tired this week - but then again it has been a bit stressful at work so that could be part of it too.
Steph - good info - I didn't realize they did dose dense CMF but I guess that would make sense. I just had my 4th out 8 treatments. What is Canadian method of rads? I'll be doing rads after chemo, also. Haven't had a period since Oct and so hoping they don't come back - I'm 44 and have 3 boys - 16 and 19. No side effects from tamoxifan sounds promising.
Hope to hear how you did, Glyn and Rae0 -
Hello all:
I made it through the infusion today--my switch from Classic CMF to IV CMF. Most of my fears came from if I was doing the right thing for me. Well, now I've switched so I can put those fears behind me and move on. When I got home I was queasy. The nurse told me not to take the Kytril until Fri. but I took it now because I didn't want the nausea to get out of hand.
Rae, good luck on your treatment tomorrow. I think that's a good sign that you did well on your 1st treatment. It will hold you in good stead through the entire regimen. I'll be thinking of you tomorrow. Let us know how it goes.
Love to all0 -
p.s.
Marcia--thanks for thinking of me. Sorry you are tired--please take good care of yourself.0
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