CMF Question
Comments
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Mandy - Your vacation sounds fabulous. Don't you hate after being home for a few days the vacation seems like a distant memory!!!! We are leaving tomorrow for Albany with a stop in Saratoga. My son is participating in the honors choir for NY State. We will go to Saratoga on Sunday and then spend the next two days bringing him to practice and then the concert late Tuesday. The big problem is one parent has to remain with him during practices, which run all day. But it is a great opportunity for him.
I am doing pretty well. I have been getting really bad pains in my feet and again I am not sleeping that great. If things don't get better int he next few days, I will call the onc. when I get back. I will go back to have all testing in about 5 wks. or so. I am definitely get antsy. Maybe that is causing the lack of sleep. I can't believe it will soon be a year!!!
Well I hope everyone has a great weekend and I will check back after Albany.
Colleen
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Sherri,
RE: Arm movement
I had 11 nodes removed June 29th, after sentinel nodes (I had two) were found positive. This week (week 5 from surgery) was the first that I really didn't notice the tingling/numbness and found my range of movement almost normal. Just a little "pulling" sensation when I raise my arm really high. I didn't do physical therapy or anything very special, just tried to use my arm as normally as possible but stopping any movement at the point it caused pain.
Patty
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Mandy........WOW! What a wonderful trip! I'm so glad you had the chance to go!
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Thanks Ritajean. It was a wonderful trip. But as I've already said, I never would have made it through the chemo/rads without you and the other wonderful gals on this thread. So thank you for your support and advice.
Mandy
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Yes, Mandy, I understand. I came here during my darkest days, too and the gals here pulled me through this journey. That's why I stay around in hopes that I will be able to say or do something that will help somebody else. The whole trip is so scary and it doesn't seem like there is a light at the end of the tunnel while you're going through it. The light finally does appear, though and we're all a little different after making the trip. I'm so glad you're done and doing well. HUGS!
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Hi MSMPatty,
Thank you for sharing this with me. That is very good news. I am now threes weeks postop and the numbness and tingling are decreasing. I am starting therapy next week but I suspect that with time it would improve on its own. If you don't mind sharing .. what chemo treatment were you offered. I was offered AC + T or TC. I wanted CMF X6 IV but my oncologist said he would only do a 6 month oral regimen. I am going for 2nd opinion soon at Dana Farber.
Warmest of wishes,
Sherrie
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Sherrie, did your onc give you any reason for only doing a 6 month oral regimen of CMF? Just curious....as so many of us had the 6 infusions.
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Hi everyone- Okay I have another questions- are ya'll tired of me yet?- (that's not my question LOL) How long after chemo did your hair stop falling out? I'm 5 weeks out from chemo and mine is still coming. At this rate I'll be in a wig in a month,
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Hi RitaJean,
He said it wasn't as effective as the 6 month oral CMF regimen. I researched it and the disease free survival rate and overall survival rate at the 3 three mark are a little better for the oral regimen but at the 5 and 10 year mark there is no difference and there is much better compliance with the CMF IV X6 infusions regimen which is my preference. My onc and surgeon will not do an oncotype even though I think it is important information to have in making a treatment decision regarding chemo. I have an appointment at Dana Farber Thursday so I am hoping to get clarification. :-) I think my age and node positive (1) status is their concern.
Thank you!
Sherrie
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Sherrie, I will be anxious to hear about your second opinion. Some handle the oral CMF just fine. We are all different, I guess. I took the infusions right from the start but some of the gals on here started with the oral regiment and then switched to the infusions because they were having a hard time with the oral routine. Hang in there. These decisions are the worst.
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Hello All: I have not been on in quite a while. Went to Albany and back. My son did very well in his honors choir. It seems like this thread has been quiet which I hope is good meaning everyone is out enjoying what is left of the summer. I do have to share this with you on Sunday (16th) was my 23rd wedding anniversary and my 11 year old son had a surprise party for us. It was so cute he invited all the people and then had my sister-in-laws help him with the food. When I questioned my daughter why she didn't help much, she said I told him it was stupid because you will be married 25 yrs. in two more yrs. But he said whats the difference about a how many yrs. he just wanted to have a party. These kids are so different it is amazing that they are related. Well just wanted to pop in and say hello!!!!
Colleen
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Ah Colleen! What a sweet son you have! That will indeed be a memory to cherish! I'm so glad his choir did well.
Like you, I am hoping that everybody is doing well and that's why the thread is so quiet lately. I find myself getting outside more as summer draws to a close and dreading the harsh Illinois winter.
Enjoy what is left of the warm days!
Rita
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Just bumping up this thread so it's here for anybody who needs it!
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Colleen - you do indeed have a wonderful son ! So thoughtful at an age that kids can be self centered.
Sherrie - I had cytoxan orally, but the M and F thru infusion. It is interesting that so many oncologists have their own special way to do things - kind of like mad scientists! I also had my cytoxan daily and the infusions weekly. So happy that is completed.
Hope everyone is well. We went on a nice vacation to Galiano Island - inbetween Vancouver BC and Victoria. A very beautiful place.
Radiation simulation tomorrow along with a plastic surgeon visit.
I am wondering what exactly the simulation is - and of course found the answer on BC.org!
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Hi everyone: I was beginning to think I was the only person on here taking CMF. I have read quite a few posts and learned a lot. I had my first treatment August 18 and did really well. It almost scared me I did so well....was wondering if it was working or not. I am on IV CMF every 3 weeks for 6 treatments. I'm thinking if it doesn't get any worst than this....which it probably will I understand....then this is a doable thing. I was scared to death to start. Now I am just glad the first one is over and looking forward to the last. Take care to everyone and I'm glad I found this thread. --- Pam
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Pam - so happy you found this thread! I felt the same way when I was starting CMF - I was the only one on the January chemo board, and honestly had not much to report (as far as side effects etc).
I think you will find that CMF is tolerable and if it isn't, the nurses (and oncologist I should add) are well versed to help you.
I don't know what I would have done without this group of women - who have "been there, done that" so to speak.
It sounds like you are doing really well!
Susan
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Thanks Susan. I am glad I found it too. There really doesn't seem to be that many people on CMF. My onc told me it would be good for my rheumatoid arthritis with the methotrexate in it. Thank goodness for this site.
Hi SusanFL: I am also a diabetic on CMF and my blood sugar shoots up too. It's the Decadron they give before the CMF that does it for me but after a couple of days it is back down. I am diet controlled and on no meds. I am going to see my primary care next week to see if he wants to put me on something while I am on chemo. I am getting the exact same chemo as you are with Cytoxan IV and Methotrexate and 5-FU push. I haven't really had any symptoms except my mouth is a little sore. My first chemo was August 18 and I have them every 3 weeks. This seems pretty doable to me. I just hope it doesn't get any worse. Good luck with your treatments. --- Pam
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Pam, Welcome to the CMF thread. Yep, there are several of us who have had or are doing the CMF regiment and it is quite doable. Did they give you some ice chips or something cold to chew or suck on while having the infusion? If not, ask for them next time. They (the cold) will help ward off mouth sores. I also purchased Biatine mouth wash and tooth paste and used them religiously during the chemo months. It can be purchased at Wal-Mart/K-Mart or over the counter at drug stores. I firmly believe it also helped keep the mouth sores away. It sounds like you did real well with your first treatment so you've got a good start. Come and post often and we will help you through this part of your journey. There is always somebody who has experienced the same things that you will go through and the ladies on this site are awesome! Hugs to you!
Rita
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PamsPromise - After discussing the blood sugar increase (200+) after the 2nd treatment, my oncologist decided to remove the decadron. I just hope it doesn't mess up anything else because I've been doing so well with very few SEs.
I got one mouth sore inside my lower lip after my first treatment and found suggestions in this forum about Biotene mouthwash. I use it 2-3 times a day and the mouth sore is gone. No more have surfaced, so I'm sure it's the mouthwash that cleared it up. I will probably continue to use this mouthwash after treatment.
After my 2nd treatment (last week), I've experienced a few more side effects. 1) Diarrhea for about a week after treatment. 2) Heartburn, mostly at night. 3) I was having a lot of trouble sleeping. I don't want to become dependent on sleeping pills, but tossing and turning and getting up and down all night, was driving me nuts. Sunday night was the worst because I had to get up at 6:30 for my son's first day back to school. I think I got two hours sleep. I had a doctor's appt. that morning, so he prescribed Pepcid twice daily, and Restoril. I slept like a baby last night and was not groggy when I woke up 7 hours later.
Also, I had to stop wearing dark tops. I wore a black t-shirt over the weekend, and my back was covered in long strands of hair! My sister took me to get my bloodwork Monday, and then treated me to lunch and then we both got short hair cuts. At least my hair isn't coming out in clumps, just a few strands here and there.
This treatment is definitely doable. It's the rads that I'm not looking forward to.
Take care.
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Thanks for the welcome. I can't tell you how much better I feel knowing others that have taken this kind of chemo. I did use ice when I took my first chemo the entire time. I also got one tiny sore inside my lower lip and used the Biotine toothpaste and mouthwash and its gone. Today is day 8 for me and I truly am not having any symptoms at all other than being a little tired. I don't sleep but about 5 or 6 hours a night though. I am going to get my hair cut shorter as I don't want the long strands of hair everywhere either. I have a really silly question to ask and I know this is totally not relevant right now but I am naturally completely gray (I Am 55) although no one knows that but me and my hair dresser. I am dreading those white roots and the "skunk" look as my hair grows out since I am dark headed. Have you heard of anyone dying their hair while doing this chemo? I know its just vanity and I am definitely not a high maintenance person but I just can't imagine not dying my hair for 4 months. I have colored it since I was 30 so its just a part of my life. Anyway I thought I would ask and see if you all knew anything about it. Strange that I doing chemo and that would be a issue and I feel silly asking it. I was so afraid of this whole chemo experience that I feel blessed to be doing so well and getting the comments from you all that you are doing well too. Good luck to you all and again thank you for welcoming me to the thread. I may not post a lot but I promise you I will be reading everything. I don't want any surprises. And Susan.....I too am worried about the rads. I got a horrible infection in my lumpectomy incision and it reopened on its own and had to close by secondary intention. It was horrible and I was in the hospital for 2 days on pain meds. They said I was allergic to the sentinel dye and it literally burned the edges of my incision.....almost like a thermal burn. The edges turned black and had to be debrided. It took 2 months to heal with wet to dry dressings everyday. Then I became allergic to any tape home health tried when dressing it. It was a real mess. Because of the sensitivity of my skin my docs are concerned that the rads could really be a problem and I may have to do them 2 weeks on and then a week off. Worries me that it may reduce the effectiveness of the radiation. Take care all of you, Pam Sorry this is so long
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Pam - I have (had) dark hair, and was 44 when I started chemo. My oncologist warned me not to use permanent color while on CMF as she has had clients that do so lose all or most of their hair due to the additional toxicity....however, I don't really know if it is true or not. I had been thinking of going grey so decided this would be a good time to do so. There are non toxic dark hair dyes that salons can use - non amonia is what I think my oncologist told me to use if I was going to.
So, I went cold turkey - in May (5th month of CMF) I went ahead and had my stylist foil in dark to blend my grey better (this was the non toxic dark). Last week I had her do it again, but this time foil in permanent dark color - once again, to blend it in better as it grows out. My hair is very thick and wavy. Honestly, I think it looks pretty good. I plan on continuing to foil in dark at least until I am 50!
I lost plenty of hair (all over my bathroom) but it was not noticeable to the general public.
I have my concerns about rads - just got my radiation simulation done today which included 4 tiny tattoos - my first ever!
This is the home stretch so I am looking forward to having them behind me more than worrying about them at this point!
Hope everyone is doing well!
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AprilGirl: Thank you so much for the information. I will talk to my hair stylist about it. Good luck to you with your rads. I hope everything goes well for you and congrats on getting to the last phase of this fight. Take care, Pam
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Pam...I had my hairsylist color my hair as usual during the chemo. I have very thick hair and had no repercussions of any kind. My oncologist saw no problem with this as long as I felt no scalp burning, which I didn't any of the times I had it done. Instead of doing it every 6 weeks, I tried to go at least 10 weeks between coloring but sometimes I cheated because I guess I'm pretty vain, too. Ask your oncologist for his opinion on this. They all think differently, which continually amazes me. However, I had no problems.
As for the rads, I found them much easier than the chemo. They have wonderful creams that they can give you to prevent skin damage and burning now. The worst part about the rads was having to show everyday (except for weekends) for 33 days and feeling like a slab of meat as they tugged you first one way and then another to get you situated exactly where needed on the rads table. It took longer to get you situated than it do to have the actual treatment. I think you may be surprised when you get to that part of your journey.
I hope both you and Susan are having a good day today. I'm down in the back (probably from too MUCH golfing and summer activities) and am going to the chiropractor to see if he can help. You know I'm down and out when I seek out a chiropractor because I'm pretty much a baby when it comes to adjustments and pain! LOL
Hugs to all of you!
Rita
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Thanks Rita for the information. I hope your back gets better. Take care, Pam
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Hello my CMF friends,
With no surprise it looks like you've all been taking good care of one another ... with great advice (tips of the trades) and emotional support. As I read along I've noticed when someone had a question or concern it was intelligently addressed.
I'll have to give a "two thumbs up " to our the fearless leader Rita. I truly believe that it takes a village ... and so many of us are lucky to have you in our village as we have taken this journey. Thanks, Gal !!!!!!
I've continued to sneak a peak at the post, but have also tried to keep my head from totally being buried in the "puter" in the eve's. Okay I'll admit that I have bounced over to Facebook as well so some of that eve time is chewed up there.
I've recently added "my two cents" worth of support to help two acquaintances recently diagnosed. Neither seems too interested in the on-line type of support (which is sad IMO). I'm hoping I can do justice to pass on some encouraging dialogue to help ease some of their fears.
On a personal note, visited with a PS last month. I am a candidate for the DIEP procedure to reconstruct my right breast. I am currently trying to get a referral for a second opinion (why stop now with those 2nd ops?). The doc I initially saw is scheduling this type of surgery almost 12 to 14 monthss out. There are just a handful of surgeons in the Seattle area who perform this specialized surgery.
Life on Femara has greatly improved. Yes, I still deal with achy hands and feet but typically as the day moves along so do my joints !!! I look like I'm about 90 when I climb out of bed in the morning though !!! Had my 3 infusion of Zometa a couple weeks ago, felt a bit "flu like" for about 24 hrs afterwards but in the grand scheme of things "a no biggy" !
I've once again this summer spent A LOT of time doing long training walks. The 3 Day/60 miler is just 2 short weeks away (YIKES). I've been very humbled by the generosity of friends and family (in fact between the 08 and 09 event I've been able to raise over $8,000) which reminds me of "Why We Walk" !!!!
Spending a little down time at home today with my ds. Poor guy just had 4 impacted wisdom teeth pulled yesterday ... boy, can he power down the icecream !!!!!
Health and Happiness to all of you, Carol
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Hello Everyone,
I was also away from this thread for too long, but all goes well. I'm almost half way through (4th tx this week). Except for some hair loss (including the despised chin hair - good - and eyelashes and brows - bad) and a couple of sick days, I'm feeling fine. Just wanted to stay a presence here and say HI to all of you. And to Rita, of course. Thanks Rita for staying here and giving encouragement to all of us. I also was the only one of the many July chemo-starters who chose to take the CMF regimen (I think this is in reference to Pam's post, but not sure.) stay well!
Elisheva.
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Oh Elisheva, I'm so glad that you're doing well with the CMF. Hey, you're almost done! Then we can do the NO MO' CHEMO dance for you! Will you have to do radiation when you finish the chemo or are you completely done then?
Annie and Carol,.....Thanks SO MUCH for the cards. I think the world and all of you two and your cards made my day. You are both sweeties and such great gals! Hugs to both of you and thanks for brightening my mailbox!
Rita
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Hi all: sorry to have been so MIA, life gets crazy doesn't it? But took our DD back to college this weekend so am back now. I tried to be not on the computer as much as i was while she was here.
rita, so glad you liked the card! A very, very, very happy birthday to you! May this year bring you renewed happiness and of course, wonderful health!
Carol, so glad to see you, too! We are "old Ladies" here on the CMF posts...I see alot of new gals, and they seem to be doing very well getting thru it. It really is such a doable regime, tho not fun of course. Heartburn was my worst issue. And the up all night Decadron jazzies (Carol, remember the laundry nite?)
I was driving home from PA when I decided I should check out my remaining hoot;;;of course, i felt something. I do have tons of fibroids in that girl, but I called my BS pronto to get in tomorrow for a check in. We all know the drill; probably an early mammo, maybe an ultrasound. Since it wasn't in the nodes, and is not genetic, I am hopeful it is just one of the old booby lumps, but if it isn't, good to know now. I have plans for a prophy anyway, so would simply proceed. Kind of thinking since I've been on Arimidex (thank you to Rita who pushed me to get on with it already) since January, it would be rather difficult for something to show up while on that. But of course, the gift that keeps on giving makes us do our check ins. A little tired of it tho, and more than a little worried, but I know all will be OK, whatever is going on/not going on.
But I will change the subject! Welcome to all the newbies on here, and CMF is the best of them out there. It works, it's doable, and with all the encouragement I got from these wonderful ladies on here, I got thru it. Granted, I did buy some fake eyebrows in a moment of goofiness but did not end up using them, as they really looked kind of strange. I just drew 'em on. I used Revlon Lash Fantastic which has a cool little macara like brush also along with a very good pencil. All the hair just thinned by about 1/3 but it's all back now and I look once again like a hobbit with all manner of tons of red frizzy hair. Ah well, it's back. And yup, I am coloring, found a color in the natural store without amonia that works, I too tried to dark red streaking but was going white so fast I was going broke doing it. did anyone find that once you stop the CMF in about 6 months or so your hair grows like gangbusters? Yikes!
Carol, hope your DS feels better soon! We juuuuuust squeaked by not needing DD's out this summer, tho one is still debatable. time will tell.
Happy birthday again, Rita, and may I dare to hope that all tests came back aces?
love to all
Annie
annie
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Hey Annie, I'm with you in spirit today as you get the other "gal" all checked out. I'll be thinking about you and hoping that it's just those nasty fibroids. Please post as soon as you know.
Hugs and prayers going out your way!
Love.....Rita
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Good AM my dears...yes, just another nasty fibroid. Thank god. Wiill recheck in 6 weeks to be super sure.
Thank you Rita, you are the best.
My surgeon is NOT on board with my plans for a prophy mtxmy. To me, it made sense, to him, since not in the lymph nodes, and not a bad oncotype score, and no genetics, he would vastly prefer I get an MRI every year. MRIs are now catching cancer at a cellular level ladies. How awesome is that!
Anyway, perhaps a reduce and lift in the summer, otherwise, just a "hat" on my new girl so i do not have a barbie boob anymore. Not like I walk around naked, anyway, but you know what I mean.
Thanks for the support gals, I was rethinking chemo after lurking and reading and today, I heard myself tell the BS "well, it wasn't fun for sure, but it was perfectly doable". Yup, it was. In retrospect, it certainly was the most doable regime there is and I feel lucky to have been able to get CMF instead of other ones.
With the help and support of all of you, that is. Thank you, i love you guys.
xoxoxo
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