CMF Question
Comments
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Rita,
I also read this about CY earlier...so very sad! I agree, we need to find a cure...this bc really stinks! I hate to read about losing another one of our own sisters.
May her spirit be in peace...Harley
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Hi
I,too, am sad at Cy's passing. She was the first to help me on an old CMF thread. Then that one phased out and this one began. There were two Cheryl's at the time, Cy being one of them.
Rita, thanks for giving the news here in the tender way only you do best.
May Cy rest in peace.
Hugs and prayers,
Candie
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What are your best tips for that nauseous feeling? I've got Ativan, Zofran, but neither helps for very long. I've also tried lemon drops and ginger snaps. Anything else might work?
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I had classic CMF (two weeks of oral pills and 5 minute IVs on Day 1 and Day 8) - then one week off (I think - it was a long time ago). I did not lose my hair - it thinned a bit. I was slightly nauseous during the two weeks of treatment each cycle - and found that melting an ativan (lorazepam) under my tongue - (also called taking it sub-lingually) helped a great deal with the stomach upset.
I think hair loss might be more common if the treatment occurs once every three weeks. As far as color is concerned, I would recommend waiting until the treatment is over - or just use a wash in color (without peroxide or amonia).0 -
Please I need some advice. I am finding the CMF much WORSE than red devil...my freaking mouth is sore and blistering...why is it doing this... I feel like my gums my teeth are rotting in syrup yday ...and now I am full of sores... will I have this all the time or will there be a let up ... the cycle is iv two weeks on two weeks off .... I am despairing ... so despairing ... xxx
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To My Fellow CMF'ers, I would just like to express my sympahy to those of you that had many exchanges with Cy. I did not have the opportunity to chat with her, but have gone back through past postings and she really sounded as if she was a true gem. I also felt a tiny connection after reading about her battle and that she was a northwest gal. She passed away in the U of W hospital which is where I started my bc journey at. My condolences to all of you during this difficult time.
Sue, I was bummed to hear that your having such a bad time with the mouth sores. I'm assuming that you have tried biotene mouthwash and toothpaste, or the baking soda rinse. Did you crunch on ice during your infusions? I don't really have any other tips, hope something gives you some relief soon.
DianeB, I have only had a couple of very small bouts of an upset tummy, but when I did I also used .5mg of Lorazepam and layed down and it subsided pretty quickly.
Jill, how you doing with round two? I'm getting excited for the round three to get started ... just means that our Arizona trip is getting closer.
My big news this week, got my new boob!!! I'm amazed how great it feels, and how nice it is to actually have "top notch" bras!!!
Thanks for all of you for keeping this thread going ... Carol
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Carol....yeah! A new boob! Don't you just feel like a new person now?
Sue...so sorry that you've had the terrible mouth sores. I avoided them. I'd like to think that it was the use of the biotene mouthwash, toothpaste, and the ice chips that I downed during the chemo treatments bit who knows??? This is a complete crap-shoot. One person does just fine and the next has a terrible time. Hugs to you dear! I do know that one of my friends got the mouth sores and took Lysine, which can be purchased over the counter here. They took care of them for her. You might want to check with your oncologist before taking them but it might be worth inquiring about as it sure helped her. Also, Sue, the affects of chemo of any time are cumulative and you have had ALOT of chemo so your body has really been hit with a whammy. I will send positive vibes your way and hope that you'll soon be feeling better again. In the meantime, hang in there and post often so we know how you are doing.
Hello to everyone else. I have Saturday morning errands to run and need to get moving! I'll be back later this weekend. (Yah, I know, you're all saying "Thanks for the warning!") Have a good day.
Rita
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Good Saturday to all.
Diane,I had a tough time with nausea. I tried all that you mentioned,also.I had 12 tx and by the 4th tx, I tried compazine and the only way it worked was to take it 2 days before the infusion and to continue until 3 days after 2nd infusion ( 2 infusions per month). I also had to eat something dry every 2-3 hours. So, I was going thru them like water. But if I didn't, I would be nauseous constantly and it made me feel so sick.
Carol,congrats on new boob
Sue,hugs. I was able to avoid sores by using Biotene toothpaste and mouthwash. The nurses also gave me a cherry ice-pop during infusion. My onc had told me that if I developed sores (which I didn't) he would give me a script for Miracle mouthwash. Perhaps you can inquire about that.
Rita, hope your errrand day is going smooth
Have a grand day,everyone
Hugs and prayers,
Candie
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I am having trouble with my body ...my mouth my throat...my head is lolling to one side and I am very drowsy... I am bleeding when I go to the toilet and my teeth are full of holes. I cant really feel my feet and my legs are weak. I really dont know whats supposed to be. I am not sure if I am risking too much..
please is this normal for CMF xxx
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Hi girls, just checking in........just read about Cy, and I am so sorry to read this...I did not get to have the pleasure of knowing her but having read a few of her back posts, she seems like a very special lady...condolences to all her friends on this board, she will be missed I am sure.
sue, I am so sorry you are having such a tough time...you seem more than due for some good stuff to begin for you. I am assuming you are in close contact with your oncologist? I would put any and all your concerns to him or her and see what they can do for you.
I do know ginersnaps, fresh crystallized ginger, and old fashioned sourballs do the trick for me with nausea, but perhaps they can prescribe something for you as well. Good luck sweetie.
Carol, congrats on the new boob! Mine is a work in progress and will need to stay that way til chemo is done, but it does let you feel pretty, a very helpful thing. I'm told the nipples they can make are amazing, my ps is a peach and so great. It was the silver lining in all this for me. I can't wait to buy a pretty bra, right now I have to wear a grandma pulley and joist number to support his work so to speak while under construction.
and congrats on the third X mark too! I'm right behind you!
I'm going on friday for round #2, hopefully the steroid adjustment will make a big difference, from 12 down to 4 mg. I know I'll feel sicker, but I hope it is a change for the better. So far, no hair loss that is noticeable, but certainly alot in the shower and on the floor.
That was a tad disconcerting. I do have a wig ready that looks a little bit like Carol brady, but it's there if needed. Maybe not, can't tell yet. However I said the hell with it, and got my hair highlighted (tough on the root, but doesn't get in the bloodstream) and cut. Still here, so that seems OK. Fanciful color by Roux is a rinse in, shampoo out, no amonia temp color if anyone needs something, very very gentle, covers gray pretty well. doesn't last, but neither does the hair (haha)
Well, good luck to everybody, spring is coming, hang in there all my CMF lovely ladies.
Sue, an especially good wish for you to have a turn around soon in how you are feeling!! Seems like you may have been thru a bit too much for your body not to object to it. Please have that talk to onc. and see if they can't help you.
love
annie
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p.s.:
Has anyone on the board gained weight? I am turning into a piglet, here, and I do not think I can blame it on one chemo tx. Steroids?
It's kind of weird. But of course it has nothing to do with all the ice cream I am eating in the throes of feeling "oh poor me" ....hm. Still it is a problem.
Also has anybody else done what I just did and in complete defiance said "oh the hell with it" and gone and colored their hair? I also slapped on so much makeup that I looked like I was trolling for clients...my oncologists did not recognize me I think. did a bit of a double take and made a comment about me staying on the steroids.
Are these the "normal" (and I am being subjective here) phases of going thru this treatment and the emotional backlash?
I'd like to believe that.................
love
annie
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HI
Sue,please callyour Dr right away. He needs to know about these things. I will check here tomorrow to see how u are.
Annie,good luck on tx#2. I think we do what we need to do to get thru all this. Yes,others I know from bc.org have colored their hair while doing treatment.I wore alot of makeup while on chemo..it made me feel better and I felt I looked better.
To all...have a restful night. Sue...call your Dr.
Hugs and prayers,
Candie
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Sue, Candie is right! Call your oncologist and tell him what you just told us. You have had massive doses of chemo and your body has been through alot. Your oncologist needs to know that you are having problems. Please call him/her as soon as you can and then let us know what they tell you. Hugs!
Annie, I gained weight during chemo! My onc said that it was the steroids. They told me not to worry about it while I was doing the actual treatments but then encouraged me to get it back off once the treatments were finished. Besides the steroids, I know I wasn't as active during the treatments as I usually was and that was probably part of the reason I gained. I have gotten most of it off now.
I hope everyone else is doing well. Good luck to you gals who are doing treatments this week. Just keep marking them off your calendars!
Catch you all tomorrow!
Rita
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Rita, wanted to let my fellow golfer lady know that I'm hyped because my new right hoot stayed put with a full golf swing. Not once did I have to rearrange my bra in nine holes ... whooo hooooo!
Boy, I'm sure feeling lucky that so far so good in the se dept. I hope that a others start having a little easier time with their txt. Great advice to call your onc's immediately if your having any se that are not tolerable.
I have a pretty active job (truck driver) not long haul but on a Navy base and I spend alot of time getting in and out of a truck, loading supplies etc., so as far as weight gain, I have actually lost 15lbs since diagnosis in Oct. I have stabalized since starting chemo in Jan. Don't want to lose anymore, but would be thrilled to stay right where I'm at. My sweet tooth has pretty much not quicked in, craving the salts much more. Plus, I have chosen not to drink any alcohol which had in the past attributed to quite a few calories.
Candie, love the pic from your resort in Mexico, looks like paradise to me!
Jill, how ya doing gal?
Carol
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Sue, checking in to see how you are? Hope we hear from you soon.
Rita, hi!
Carol, oh yes, Mexico was heavenly.
Have a great day,
Carmela Dean
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Sue, I do hope you have talked to your onc. by now. Really, only a dr. can help you to know about if CMF treatment is giving you these adverse reactions and if it is worthwhile. I hope you are getting some relief. Hang in there!
I had some mouth sores and found great relief with "magic mouthwash" it is something your onc. must prescribe. It helped bring relief pretty quickly.
Diane B., I also struggled with nausea. Sorry you are experiencing this. I took compazine, Kytril (I think in the US this is Zofran), lorazepam at night for sleep, grazed all day (melon, pretzels...) and finally got steroids added to the mix. The steroids help the other meds work stronger. That did help me a lot. Others it bothers them....maybe worth a discussion with your onc. Bottom line, keep telling your onc.that you want relief...let them come up with something that will help you. Also, believe it or not, this too shall pass. All the best to you!
Re: weight gain. I went down during chemo and went up after rads (over 15 pounds). I think a combo of (steroids), fatique and just eating things you like (after awhile, saying "to heck with it"). Good news is that it will come off, if you work at it, when you start to get your energy back. I joined weight watchers, worked with a trainer at the gym and lost all weight. Believe me you will be more motivated than ever (I sure was). Hang in there.
Just left a message on CY's thread.
Blessings,
Ginny
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Sue, was hoping we'd hear if your onc could supply some relief from your se's. Hope your doing better as each day passes ... thinking of you as well as our other CMF friends.
Carol
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I am being admitted to hospital tomorrow...xxx I am going to bed now..it is nearly 3am . If you go to
Just Diagnised and Please Help thread ...I have updated there...
Thankyou for all your help sisters... I will keep you posted xxx
Much Love xxx
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Sue, I am glad you contacted your Dr. I will keep watching for a post from you. My prayers are with you.
Hugs and prayers,
Candie
to all: as you see above I signed a post Carmela Dean. That is my right name. Everyone calls me by my nickname I was given at birth "Candie". I was at work when I posted, hence I typed my legal name...lol. Didn't even know I did that til I came on to post again.
Have a good day.
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Hi everybody:
sue, I am very glad your dr. is going to hospitalize you, no one should feel this crummy, and you've had a rough road. They can figure out how to "calibrate" you better there I am sure. Hugs to you!! Please post and let us know how you go on.
Carol, you sound like the new girl is working out well.....congrats!!
Thanks everybody re: the weight gain. I think it might be the tons of ice cream I ate during the initial "oh no, it's not cancer" period .
Hubby helped and he gained too.
I did drive 3 hours to see my daughter in college two days ago and am just dog tired.........isn't it a bit early to get hit with this fatigue from chemo? i'm also on week three (having it friday) and confess to a fair amount of nerves as last time went so badly. Maybe it's something else, like hormones? I thought week three it should be out of your system pretty much?
Hope everybody is having a good week, and hanging in there.
love
annie
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Sue, I'm glad that you went to get help with your situation and I"m so sorry that it's hitting you so very hard. Hang in there. CMF is usually not so terrible. Hugs to you dear!
And so we have a new gal...Carmela???? LOL I do like your official name, Candie! Reminds me of a valentine that I got a few years ago from my significant other. He was filling it out at the City Building where he works and signed it with his first name, middle initial and last name. How romantic is that????
I'm so glad that the rest of you are doing well as you mark off these treatments. We've got to get you all finished in time to enjoy the summer months. Hang in there. You can do it!!
Hi Ginny! Always good to see a post from you!
I need to get something done around here. I bowled this morning and have just been lazy alll afternoon.
Catch you later.
Rita
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My question of the day that goes through my head quite often is why did my/our onc's choose to put us on CMF vice some of the other regimens. I was told that I have "garden variety" of cancer, ER/PR+ and Her2-, so there is not a need to go with the AC type treatment, I will actually be getting my biggest benefit from a HT after chemo and rads are through. I have noticed that so many other women have "garden variety" tumors yet they all are on the other regimens.
Any comments as to what your docs may have said ... I hate to say it but sometimes I think no pain/no gain. So far I have been getting by so easily that I wonder if the CMF is doing anything!
Would love to hear your stories ... thanks,
Carol
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Hi golfer779,
Sorry you have to go through this. As for your question. I had CMF for 8 treatments which took 6 months. About the 4th treatment on I started to get very tired and by the 7th & 8th it really was getting to me. My hair thinned and I put on 15 lbs. it really got to my gut. My onc said that it only helped with reducing my reoccurance rate by 2%. I was borderline on chemo with a onotype score of 19. But the Hormone Treatment helps by another 6% leaving me with a 4% rate of reaccurance over the next 5 years. I wanted to do whatever to help my chances. Hope this makes sense to you and helps.
Dx 4/07 mastectomy 5/1/07 - 6 months chemo (CMF) Stage 1
no nodes involved, IDC & IDCS 1.8 cm
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Hi Carol:
I had the same diagnosis as Desny and my oncologist said I had scored on the recurrence scale as right in the middle with a slightly higher risk of recurrence, so he said I could do either one. It was me who chose the CMF.
As far as I can see, CMF is a lesser dense dose, but works exactly the same. I believe some oncs like the more intense version to get it over with faster or it's a more aggressive treatment? I don't know, but it seems somewhat personalized or what your oncologist believes to be better for your scenario? I have since read often that the ACS has ruled CMF just as effective as the more aggressive type.
I would think you've been lucky and you're in great shape so it's not affecting you too badly? These are all really good things!
I asked for the CMF bec. I wanted some semblance of a life during it and I know the more aggressive one can really affect the quality of life for some people (well, most people) and CMF can be "life as usual" or not. So far, seems OK, except for the weirdly tired bit, but I'm only down one, I bet some of our girls here have different tales. I would think the garden variety comment is meant to be a very reassuring one, I would take it that way!
But there's no getting away from it, this is scarey stuff but we have to keep our heads above water, (or keep treading it) think positive and try not to think too much about it all I believe. That said,
Tx #2 for me friday and I am scared out of my brain.
hugs!!
annie
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Hi
Carol I had IDC...stage 2...grade2...er/pr+,her-
The lump was 2.5cm and I had a partial mastectomy.
My breast surgeon referred me to an onc. But I wanted 2 opinions. I went to someone else before the refferal and she suggested AC and rads. Dose dense, she thought I should hit it hard. Then I went to the one the surgeon referred me to. He suggested CMF. He said I didn't need the AC as I had an early stage cancer and they were satisfied that they got it all. He also told me that should I decide on AC, I could never have the A again. So should I ever have a recurrence they would have to find another cocktail of chemo. If I decided on the CMF,then if I had a recurrence I could then do the AC.I told him I needed to think about all this. I started researching here at bc.org,which I had already joined and I made the decision to do CMF---12 treatments. Another reason I made the decision was that I really liked this onc. I even went back to my surgeon to see what she said and she told me she couldn't decide for me but she trusted what the onc said that she referred me to. I didn't like the first one--she was too pushy and going too fast for me. She had her office call me about 3 times after my visit with her, and the nurse told me I was making the wrong decision!! Well, I was ok with what I decided. I never looked back and trust my onc whole-heartedly. I think it really depends on all the stats of the cancer. I didn't have the oncotype test done cause my onc felt I should do some kind of chemo either way. And I think at stage 2, he is right. I had the brca I and II done also. brca I came back negative and BRCA II came back inconclusive!! So I am toying with having a hysterctomy or not. The docs says it is up to me,again, they will not tell me to do it or not to do it. When I go to my gynocologist in June, I will discuss it with her then. Too many decisions,aren't there? I hated CMF towards the end and I can't even imagine what AC must be like. I shudder whenever I hear someone has to do chemo.
Annie, hugs. It made me tired from the beginning too. You will be ok.Just take it one tx at a time. Don't think ahead...pretty soon it will all be in your past. Just listen to your body...rest whenever you need to...I worked during my tx but I also vegetated alot when I was home. I was scared with each tx,too. Let me assure you,you will get through this. It is doable.
Big hello to all,
Hugs and prayers,
'Candie
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Thanks Annie and Desny for sharing your stories. I was also told that many people do not want to do the regimen that takes 6 mo as well. I'll just count my lucky stars that so far this is quite tolerable. Go get um on Friday, and mark one more txt down!
Carol
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Thanks for sharing your story, Candy, I think you made the right choice. I would have blown out of that oncologists' office as well.
As to that nurse, who said you were making a mistake? Wow, some people amaze me with the things they come out with. Yikes.
I had BRAC and it was inconclusive with a slight tilt to recurrence and since I had already had rads and tamoxifen, chemo was all that is left. I feel fine, today, vegetated yesterday, I wonder if it was hormonal, cuz i got a big hot flash before the tired part. Ah who knows, but I am encouraged to know you kept on working during it.
I am middle aged and overweight and hypothyroid, so perhaps that all plays a part...as Rita Jean says, it is a total crapshoot.
Carol, I have since heard alot of people say they don't want to take 6 months with this. Its seems quite subjective. And there you are, reconstructed, playing golf, working, loading trucks.........I find you quite an inspiration!
I will mark friday off and am so happy to be down two! The boob continues to be inflated which is a happy thing. My husband calls me his "fiat" meaning "looks flashy, but always in the shop"...hey, you have to laugh at some of this, or we'd go nuts from the stress. An awful lot of bad boob jokes flying around here, we aren't meaning to be irreverent, just coping............
thanks for all the support girls, and Sue, if you see this, feel better soon!! you've been thru too much for one person, but I bet this will kill it all......think of chemo as your personal mobilized army marching thru your veins to get the bad guys.
Hey Candie, where is that photo in NJ? We vacation at the jersey shore, always have, at LBI. I adore it there! Soooo looking forward to dragging my butt down there at the end of all this.
thanks for all your info, I had the full enchilada re: mastectomy, but am being rebuilt. The lumpectomy I had before (2001) they called a "partial", is that what you've had?
Good luck all CMFrs...........what a club we have here, huh? I'm proud to be part of it.
love to all
annie
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Candie, I'm at work this morning, had to sneak a quick peak, I'll be back tonight, need to re-read your story word for word!!!! Thanks, Carol
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Good morning, ladies!
My onc firmly believes that 6 (or more) CMF treatments are equal to 4 AC treatments for early stage cancers. He prescribes the AC for patients with larger tumors or for patients who have lymph node involvement. Since my cancer was under 2 cm and was early stage, he gave me a choice: lumpectomy followed by rads and Arimidex for 5 years or lumpectomy, 6 CMF chemo, rads and Arimidex. Because my cancer was stage 3 (faster growing) we decided to do the chemo. We went with CMF because AC can cause heart damage. My great grandmother, my aunt and my mom all had bc, but they didn't die from the bc. Every woman on my mother's side has died from heart related problems. Thus we wanted to avoid the AC. Also, I was told that once you have AC chemo, you can never have it again, so we gals have it in our arsenal if (heaven forbid) we ever need to to treat another cancer.
Our cases are all so different. I think we just need to have faith that we've made the right choice and not look backwards. Carol, you are so lucky to have no major side effects. I tend to believe that you were in really good shape to begin with and that's "a feather in your cap." The CMF affects all of us differently. I have a friend who was diagnosed 14 years ago. She took the CMF chemo and didn't have hardly any side effects. We went shopping together on Monday. That proves that CMF does work. I guess we just need to think about how lucky we are that were candidates for it.
Well, gotta get moving here! I'll check in later. Have a good day, ladies! Hang in there.
Rita
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Wow, I see we have a lot of new CMFer's. It has been a while since I have been on. Sorry you all have to join our board, but there is wonderful information shared on this site.
I just got back from my Oncologist check up this morning and everything is going well. Hard to believe I am almost 2 complete years away from my last chemo. You girls will all get there. I can't believe how the time has flown.
I basically did the same chemo as Ritajean (lumpectomy, 6 CMF chemo, rads and am now on Aromisin). If affects everyone differently; I was one of the lucky ones....no nausea, just some hair loss, constipation.
Just popping in to wish everyone well and let you know I'm doing good and there is an end.
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