CMF Question
Comments
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Annie- Welcome to our club. This is the Best place for all your questions. This is also my second go round. First diagnosed February 2006. Had lumectomy with 6 rounds of TAC, 6 weeks of Rads and almost 1 year of Herceptin. The beast return in November of 2007. Had Mastectomy in December without Reconstruction. I will have my second txt. on Friday. I have all CMF via my port every three weeks for 6 treatments. (May 2nd will be my last one). So far my only side effects are feeling yucky days 2 and 3 after txt and a little fatigue. This is much easier then the first time. So far have not lost any of my hair. Sometimes I think it was alot easier not having any! Just remember to drink lots of water and chew that ice during treatment. I also brush my teeth and swish with Biotine. All this will hopefully prevent mouth sores. Post often and we are in this together.
Carol- Had a great time in Laughlin. Didn't win any money but that's ok. I would love to get together when you come to Phoenix (Mesa)!Good luck with your txt on Thursday. I have a consoltation with a plastic surgeon tomorrow. Hoping to have reconstuction after I'm done with treatment.
Talk to you soon,
Jill
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Hi Sisters xxx
I am having the 1st Cmf on Tues nxt. I have just had 4 red devil ...my cmf is 2 weeks on 2 weeks off....
What are the general side effects and are they generally worse than red devil.... the chemo has been gruelling me so far...on top of work etc xxx
I hope you are all having happy moments xxx
Much Love xxx
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Wow, thank you everybody, I cried, I was so thankful to have such support and compassion......overwhelming to me.
I feel like it is doable now, I do have one great looking wig I bought already "just in case" which we call "the beast" as it's pretty scarey all by itself...looks like a decapitated me from the back!! Good match tho. It does kind of occur to me, that losing a bit of hair isn't a bad thing if you have this great wig just sitting there...don't have to wash it, color it, style it, just slap it on. I can see the pros.
I also have a very lovely plastic bubble wig a girlfriend sent me that can work
As to what happened to me: ay yi, everyone's got a tale, right? It was a lumpectomy 1st time radiation, (I got a whomping dose, and radiation sickness, turned completely whitehaired...I looked like a smurf) then 5 years tamoxifen. don't you just know, year 6, just when I settle my one and only daughter into college, the same girl acts up. So mastectomy and chemo as only options for me unfortunately. Mastectomy truly OK, as they rebuilt me or almost. It helps to wake up under construction. Chemo is the unknown and to me, really scarey part. But to have all you ladies here, know that I can turn to people that have been there is just wonderful.
It seems like an upbeat, helpful, friendly site, I feel like I've just met a whole new bunch of "bosom" (pardon the pun) buddies.
Thank you so much, guys, I'll let you know how it goes. And Rita Jean, it that's "thinning" hair, wow! You look great! In fact, so does everybody. I am glad to know at 52, with one saggy aggy, and one under construction, that this is sooooooo doable and everybody still looks gorgeous.
love
Annie (p.s.: Is coffee or tea a good idea? I'm getting conflicting info on caffeine) thanks!
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p.s.: to Jill: any reconstruction questions, I am happy to share my experience with you if need be.......as you say, all in this together.
But so far, everything was totally positive, not easy surgery, (8 week recovery and they mean it) but certainly do able.
The fun thing about the plastic surgeon is it's not about sickness, dying, scarey issues, it's only about what will make you feel pretty.
I even got a goodie bag! It was quite a relief after everything else being so gloomy.
Keep in touch, we can be "works in progress" together ........
love
annie
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Sueps and Annie, just had my 3rd infusion today. I'm also on the 2 weeks on 2 week off. I cannot tell of any experience other than the CMF regimen. Month number one was really no problem, I worked the whole time except gave myself a break on infusion day.
I would ward off any constipation prior to being in a "hard" spot . A little Miralax has worked for me. I only had a little nausea feeling on Sats with a Thurs infusion. It was alleviated with just laying down and relaxing (I took a Lorazepam once to help). I do take a Lofran for nausea first thing in the morning prior to taking my oral cytoxan.
My hair is continuing to thin but is not coming out in clumps, I chomp ice during the push of the "M"and "F", and swish with biotene mouthwash. No sore thus far. As so many of the ladies told me prior to txt number one, this is a doable txt and my oncs both believe it has the same effectiveness as the more se filled txts, without the worry of heart problems. Its just a little longer regimen.
Annie, its more the fear of the unknown and hopefully this post will ease a little of those thoughts. I'll be picking your head at a later date for your insight on rads and hormone therapy. Right now I'm just taking it one day at a time, all the best to you and my fellow CMF friends,
Carol
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Oooops, me again, I felt the need to emphasize the "drink like a fish" recommendation. Unfortunately that doesn't include alcohol and caffiene. I've never been so good
! I say keep a water bottle at your side 24/7, and always know where the bathroom is!!!! I figure its well worth the trade off if the se's stay at bay.Carol
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Good morning gals!
Sue and Annie...you will do just fine on the CMF and if you do have any side effects, there are quick fixes for them. Also, I'm pretty sure that you will find the CMF much easier on you than the AC, Sue. I can't believe that they are hitting you with both, one right after the other! HUGS!!!
Jill and Carol...You both have such a positive attitude that I'm sure you'll continue to do just fine. I must admit that my worst day was my third also after treatment. Like you, Carol, I had my treatments on Thursday and if I was going have much nausea, it was always on Saturday and then I felt much better on Sunday.
Well, I need to get to work but wanted to pop in and see how all of you were doing! Hang in there gals! There is life after treatments! LOL
Rita
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Rita,
Hi! I hope you had a great time on your vacation, in Florida!!
Well, I am just popping in, to say HI, before I clean the bathrooms, and finish packing... We are leaving early tomorrow am for Ft. Lauderdale, and the cruise ship!!
I'll catch up with ya'll when I return...Harley
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Hi all, Carol I hope you are feeling OK today, it's me tomorrow.
And you are ahead!
Thanks for all the info, please do feel free to ask anything about radiation (it can get like a sunburn, but no biggie, just use aloe on it) and as I said I did get white hair, but not everybody does at all. I lost alot of hair, noticed it on the bathroom floor and in the drain, but no one ever noticed it on my head. My schedule was NUTS, kid was in 7th grade with all the attendant drama, but I never got tired from it til the end, then whoa. Doing it, was nothing, like a dentist xray, you lie on a table, they pop out, pop back in, done. They either mark your sites with a marker, (which gets on everything and ruins stuff so get some man's XL cheapo undershirts to wear underneath your clothes) or I think now with the itziest tatoo mark.
Truly no big deal, very easy, really. GOOD LUCK!!
re: your caffeine info: is one daily cup of joe OK in AM? A cup of tea in PM? They never mentioned it at all, so am sooooooo confused, I have a vice, and that's it! (and ice cream).
Or did they tell you just no to it in general? sorry to pick your brain, don't mean to be pushy!
Hope this time goes well for you...........I am sure it will!
love
annie
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Annie...as for the caffeine, my onc said to drink it in moderation but there was no reason to exclude it entirely. He said, "If it tastes good, just eat or drink it" while you're doing the chemo. That's what I did. I had a couple cups of coffee in the morning and tea usually in the afternoon or evening. I got along fine.
Rita
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Rita, thanks!!!
that is what I will do, I am a one or two AM coffee lady and I do like tea througout the day.
guess I'd better figure out where every single bathroom or bush is from the hospital to home is!
Hugs to everybody on this board.....off to my #1 chemo tomorrow
My oncologist gave me compazine and zopran to have on hand if needed for nausea? Pretty scarey side effects (like dying) on that compazine...........anybody use that one? Any comments on using either of these? They told me not to take anything beforehand, just eat lightly and drink alot. I'm bringing a blanket, a book and my husband's hand to hold.
thank you.
love, annie
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Annie,
I took a compazine as soon as I left the chemo center and took them as directed for four days. That seemed to control most of the nausea.
The first time I didn't take one until I had the nausea and they do not really correct the problem once it begins. From then on, they recommended that I take them at once and I had no problems.
Rita
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Oops! Hey Harley....I forgot to tell you to have a ball on your trip! You're due for some fun in the sun and mental relaxation. I wish you could fit me into your suitcase. I'd love to stow along. It's pretty cold and snowy here in Illinois. I simply did not stay long enough in the sunshine state.
Have fun!
Rita
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Annie, I take Zofran each morning first thing on a m/t stomach. Then I have a small breakfast and take my oral cytoxan. I like Rita really only had a small bout of nausea two days after infusion day. The Zofran worked great all the rest of the time. I didn't miss a day of taking it so I really don't even know if I would have any nausea without it. I'm taking nothing on my 14 days off.
As far as caffeine, its just in my paper work to avoid it. I don't really rely on it so I just avoided it during the 14 day regimen and had a little when I was on my days off. Figure if I'm giving up my glass of wine at night I can give up my coffee in the morn!!!!
You'll do just fine tomorrow, remind me are you taking the cytoxan orally or by infusion? If it orally the actually infusion time is really short. I'm in and out within an 1 1/2 hrs including see the onc. I'll look forward to hearing from you tomorrow, I'm thinking you be just fine!!!
Carol
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Thanks, Rita! I wish you could come along, too!
Harley
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Any of you ladies do radiation while doing CMF? I read, and my onc confirmed it, that on this regimen both can be done at the same time. Just wondering.
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Thanks everybody, so far they have just said to "take when needed" but I have not gotten started yet.
Off to kill me some cancer!!!!! Only issues so far, as peeing every single second. Yikes. This a lot of water.
Hey Diane , I did not do it at the same time, but I sure think you could, radiation is very very easy. You might have some issues with fatigue doing both, I'd talk to your doc on that one.
good luck
love a
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Good luck Annie...we'll be waiting to hear how it goes! :-)
Diane, I did the sandwich plan when it came to radiation and chemo. I took 4 CMF chemo treatments, then broke for radiation, and then came back and did the last two chemo treatments. It was so hard to come back and do those last two chemos as the rads were lots easier on me than the chemo.
Catch you all later.
Rita
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Hi guys, well one down, seven to go......not bad at all so far, except for very weird "floaty" head and disoriented feeling.......had some stuffiness from cytoxan, but i guess that will go away. Anyone else get this odd effect?
They were all so nice, it made it fine, boring, but fine. I'm a weenie with this stuff and am sitting here waiting to explode or something, but that's just me. I'm sure I'll be fine.
Have to get the neulasta shot tomorrow as my boob still isn't totally healed and they want to ward off an infection! Me too!! I've heard they are not pleasant with side effects (bone acheies) but not too bad. It's worth it to have some peace of mind with infection I think.
Anyway, thanks to all, hope everybody else is hanging in there.
I drank like a fish (water, haha) and am a believer that will really help. So far, no nausea at all.
love
annie
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Annie....Yeah! One down!
Don't worry too much about the neulasta shot. I had to have one after my third chemo. I had heard all sorts of horror stories about the side effects of it and had made myself half sick about getting it. I even tried to talk the onc out of giving it to me. I guess we are all different because I didn't get any of that, so don't stew about it. You will probably do just fine.
Take it easy for the next few days. The chemo puts your body through a lot of torture and now is the time to pamper youself. Within 4 days I bet any minor side effects will be gone and you'll be on chemo holiday. (That's what we call the time between chemo side effects, or lack of them, and the next infusion.) Continue to drink when you can and eat what tastes good to you.
Check back again tomorrow and let us know how it is going! You can do this!
Rita
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thank you rita, i appreciate the quick response...........such the worry wart, and I had expected to feel perfect, not this weird other worldly feeling.
Glad to know about the chemo holiday!!! I'm not worried about neulasta, more worried about infection.
So glad to know, this site is a life saver, and you, in particular, have such a nice, low key way to putting things...makes me feel much better.
Thank you for the vote of confidence!! I can, and will, do it.
have a lovely eve.
Annie
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Annie, glad to hear that all went well today, hope that your "spacey" feeling doesn't last too long for you. I would ditto everything that Rita has told you, especially in regards to eating and drinking. If it sounds good go for it! The guys at work laugh at me with my big bag of lunch goodies... I tell them I'm not sure what will sound good so I'm coming with alot of choices!!! Keep us updated as to how your doing if you can over the weekend.
I'm laying a little low this early evening, I find that day two after txt is my lowest, thank god the dh offered to stop for take out on his way home from work, hope he brings lots of choices!!!
Bottoms up, (with ginger ale tonight), Carol
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Hey Carol, i'm sorry you are under the weather a little....
good for your hubby, mine is getting ice cream for dinner.
Yes, it's a very weird "other wordly" feeling with some slight dizzies and very leaden legs...........I guess this is to be expected tho.
I'll have to see what my worst day is and plan accordingly, getting newlasta tomorrow...ginger ale sounds wonderful!
Feel better tomorrow
love
annie
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Oh, also got the OK (thank you rita) for coffee and tea, just not a starbucks mega grande or something, but they said my two cups in AM was fine. Just drink more water (any more, i'll float!)
Oh this site is a total lifesaver it's so great to have all you wonderful, friendly ladies as buddies and get such "real time" info. Really, really helpful and I appreciate it so much.
Everyone have a good night.
love
annie
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oh, boy, did anyone every get really white? Or puffy faced?
I assume more side effects, but sheesh, one look in the mirror and ugh. At least the floaty head is gone
sorry to blather on tonite guys, bit of a nervous wreck from today.
love
annie
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Annie, havn't heard of the puffy face, do you have a number to call for question to your onc after hours? If it would put you at ease for the night it might be worth a call.
Carol
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thanx carol, i have the oncologist's #, might give him a call tho he's not the most user friendly;.
you have a good night
love,
annie
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Hi all, Had my 2nd txt today and Dr. informed my that my WBC was low and would be giving me a lower dosage of CMF and will have to go all next week for a shot of Neupogen.
Anyone have any experience with this? The nurses assured me that is was more tolerable than Neulasta (did'nt do well with it). I'm hoping so. Still have not gotten my Anzomet approved from the insurance so my Onc. was nice enough to give me 10 samples!! I was so happy. That should hopefully get me through all my treatments. Carol- Hope you have a nice weekend and glad your txt went well.
Annie- Haven't had any experience with the puffy face, hopefully you will get an answer soon from your Dr.
2 down- 4 to go!!
Jill
Talk to you all this weekend.
Jill
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OY, I see Jill you are up late too; I woke up at 4:30 with acid reflux and total insomia, headache............heart palpitations too. I think this may be the steroid they say "wires" you for a few days. Seeing Onc at 9:30 so will run all this by him.
I don't know about neuprogen, but I understand it's easy to tolerate.
I hear some folks do fine on the neulasta, with symptoms ebbing. but that is some schedule, daily, like rads. Maybe they can give you a convenien ttime frame hopefully.
Well I am gonna try to snooze on the couch for awhile....
Good luck everyone.
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Jill, looks like we both ended up with low WBC. Mine wasn't bad enough to have the onc recommend a booster shot yet, hoping that it doesn't sink any lower before Weds. He did talk about tweeking my dosage as well, he said that the dosage is not an exact science. In fact my weight has dropped a bit from the initial pre-chemo appt.
If I end up having to take something for the WBC I'll be here picking some brains!
Hope that your weekend is mellow and se free.
Annie, did you get some answers from the onc office? Hope that you got some rest, I found that I didn't sleep well on infusion night as well. Take care, Carol
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