CMF Question
Comments
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Hi Ladies: I hope someone out there can give me some info. I am 46 and was diagnosed with BC in Sept. I had a rt.mast on 10/23. I am doing pretty good since the surgery. I was told last wk that I would need chemo and also tomixfen. My onco is recommending that I do IV CMF I can do it once every 3 wks. for a total of 24 wks. She also said if I wanted I was a candiate for the dense dosage which would be once every 10 to 11 days for a total of 80 days. I would also have to give myself an injection of neupogen every day to boost blood counts. Has anyone had this dense dosage and are the side effects worse then going every 3 wks. I am really scared and I not sure which one to do. I have two children ages 13 and 10. I live on Long Island and am getting my treatments in Mercy Hosp. at the Sloan Kettering Center.
I hope someone out there can answer some of my questions!!!
Thanks,
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Colleen,
I did the IV treatments..........6 of them, once every three weeks. They are very doable. Although it seems like it takes forever to get through them, I always had a very good week and a half between the treatments and sometimes an even longer "good time." I only had to have one neulasta shot to boost the white blood count....between treatments 5 and 6. Side effects were few.
I have read and heard that the dose dense does have more side effects because the chemo process is cumulative. They put in more before all the last treatment is gone and so the level of chemicals in your body automatically piles up over time. Therefore it seems that those having the dose dense treatments have more side effects. The plus side is that it is over sooner. That is what I think you're going to have consider when you make your decision.
As I said, I can not speak from experience.....only from what I've heard and read and everybody is different. On the three week cycle, you will feel some fatigue by the end. You will not lose all your hair, and most women are able to handle the daily issues pretty well. If you have any bad days, they are usually the third or fourth day after your treatment and they are "doable." I don't know about the hair loss issue with the dose dense but I think it might be something worth questioning before you make your decision.
Please let us know what you decide and regardless of your choice, come back and visit us during your journey. We will help you all that we can. There are many wonderful ladies on this thread!
The hardest part will be making the decision. Hugs to you!
Rita
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Hi, just popped on thinking of Jill and sending good vibes and prayers. I will keep you in mind all day tomorrow Jill, just to hold you in my heart.
Let us know....I believe all will be well, you've been thru so much, you must have alot of good karma coming your way now.
xoxoxoxo
annie
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p.s to Scarp:
I was relieved to hear from Rita that chemo brain keeps on comin', I was thinking I had altzheimers' like my dad!
I usually jot notes to myself when i think of things that need doing on a big daily reminder, then cross them off as they get done. Otherwise, I'd be a basket case and driving around the block 50 x in a row or something.
I like to think of it as a "cougar moment" just like the hot flashes can make you a Red Hot Mama.
best
annie
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Hi All,
I hate to complain about anything while we are waiting to hear from Jill on the outcome of her U/S, so I'll keep it brief ...
Been down for the count this weekend, my port removal was a little more than I had bargained for. For some reason I am experiencing some pretty significant discomfort. Today is definitely better than yesterday, as it was a doozy and actually required me to hit the pain meds (Yuck!!!)
Colleen, Wish I could give some insight on the the dose dense regimen, but I did the 6 month full meal deal as well. I can say that 6 months seems like a long time to be doing chemo, but in the long run it is pretty doable, if you work you probably will be able to continue on without missing too much, and with two kids to care for, feeling decent is probably an important factor.
Glad to hear that your doing well after your surgery, we just have to take this whole journey one step at a time. I know this great group of women here will help in any way possible both with emotional support as well as a wealth of information to help you along the way.
Jill, you've been in my thoughts throughout the weekend, I'm hanging on the theory that "no news, is good news".
Carol
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Oh Carol, I am really sorry to hear the port removal was so difficult, I was hoping for that to be a breeze for you.........I sure hope you feel better now. Pain meds are a drag, but they are there for a reason, so take them if you need them, hon. Better blue skies ahead for you!!
love ya
annie
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Good Evening Ladies,
Just got home from my appt. with my surgeon. (only a 2 hour wait in the waiting room) Well the ultrasound I had on Friday came back as showing as a cyst! My surgeon wants to make sure and is trying to schedule outpatient surgery for this Friday. I just hope and pray that it is a cyst. I asked her about getting my port removed at the same time and she wants to wait until the pathology report comes back. Which I'm in agreement with. I will a 3 month follow up PET/CT scan done the following week to make sure everything else is clear. She said that all the lymph nodes feel fine- yeah!! I ask for your continued good vibes and Prayers Please!!
Carol- If you and Kent have any free time, Craig and I would love to see you.
Thanks again for all your continued support. I don't know what I would do without you!!
Jill
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Jill:
Just popped on this minute, this is what I was waiting to hear about..........
So far, it sounds positive, but I am starting a novena right now. I have faith that this is not the c word again, I am going to pray that it is just a cyst, and it sounds good that those lymph nodes feel OK.
How much more stressful could this get, waiting in the waiting room for two hours!!
sending every good vibe I can think of to you and positive thoughts flying your way for Friday.
Hang in there, ((((((((((((((((((((((HUGS TO YOU))))))))))))))))))))))))))))))))))))))))))))
xoxo
annie
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Colleen:
I had the IV 8 txts of CMF and one neupogen shot which I had no SEs from whatsoever. It's a good shot, it'll keep you healthy and safe during your txts.
I second every single thing Rita has told you, her advice and good counsel was invaluable to me and still is....these ladies here will get you thru it. Everyone here is so kind and so giving of their wisdom and experience. I know more will chime in as you begin. Just keep on posting here and one or more of us will be back to you really quickly.
I don't know what I would have done without them, they kept me sane. There are angels on these boards and alot of them are right here on this thread!!
But really, the worst part of any chemo txmnt is the name...it's scarey sounding. We say CMF or txts, and you have a few yucky days, most of the time in between treatments is life as usual.
The only bad part of it really is that you'll look OK and act OK, so people will tend to think you are perfectly fine. You'll need to speak up to get support and help during it. Dont be shy, tell people you'd like the help ahead of time. You will probably be able to work during it, and go about your daily routine during the chemo "holiday" time (the two weeks between, the week after is a bit iffy but you could still work) I just needed a nap the day after chemo as the steroids will keep you and Craig Ferguson on late night TV best buddies. Carol did laundry one night and I was on the computer buzzing away, we laughed about it afterwards. I never had a lick of nausea but they'll give you a script for anti nausea drugs, you'll want those if you need them. Rita had advised lemon drops and I sure used those, they worked wonderfully for me.
You will be OK, the decision between dose dense and the longer regimen is yours alone, I did not have the dose dense tho my onc suggested the stronger chemo as "it was shorter and I'd get it done faster".....I wanted to keep my hair and not let the chemo take me over, so I opted for CMF which has been proven to be just as effective as the other regimens. He said that was perfectly fine.
Don't know if you are going to go for recon, but if you are, I will be more than happy to steer you thru that one, lots of choices, Harley on here has done it also, so whatever you decide, we are at your service!
Don't be frightened, get mad and go get 'em!!!!! You can do this!! We'll all be here cheering you on.
xoxo
annie
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Jill, YES ... so far good news ... although a biopsy is not what we would all consider fun ... it will be reassuring for you to know what is going on and draw a line threw it. You know that probably many years ago none of us would even want to the word cyst and now we consider that a good thing !!!
We arrive in the Valley of the Sun on Thursday afternoon 20th , will be staying in Mesa until Sunday, then heading up to Surprise for a couple days. I'll give you a ring while we're in town, I'm assuming you are working and I know we have a holiday thrown in as well. Maybe just a quick visit will work out, we fly out very early on Sunday the 30th.
I'm so glad you popped in tonight to share your positive news.
On to my less than worthy news ... the ol' chest-a-roo from the port removal is feeling better all the time. One more thing to cross off the list !!!
Night All, Carol
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Jill..........It sounds very promising! My prayers will continue for you. You've had enough worry over the past few years to last you a lifetime. I think it's time that good news arrives on your doorstep. Hang in there!
Carol, so glad that the port area is doing better. I didn't have a port so I wasn't aware of the withdrawal procedure. It's gone! That's one less reminder of the journey you have completed!
Annie..........our bright and shining star! You always perk up everyone on this thread. How's it going for you these days?
Harley, look for some question samples in your email box this week. I am down to the proofreading of the book and have half of it completed! I'm cracking open a bottle of wine when it's done!
Colleen, we hope to hear from you soon about your decision. Hang in there! You can do it!
Gotta run........
Rita
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Thanks for all the replys. I still have not made up my mind yet. I spoke to a lady over the phone yesterday who had the CMF every 10 to 11 days in the same place I will go and she had little to no side effects. But like she said everyone reacts differently so she said of course the choice has to be mind alone. I want to make a decision by the end of today. I want to get started asap so I hopefully can move on.
The plastic surgeon started the reconstruction during the mast. surgery. I opted for the tissue expander. I have had 2 fill ups so far and I go for my 3rd on Friday. Since I need the chemo I will not be able to go in for the permanent expander until 6 to 8 wks. after the last chemo. So much to deal with and so many decisions. I feel like this has been going on for months when it has only been since the middle of Sept.
My family and friends have been great. I am from a large family - I am the youngest of 9 and my husband is the middle of 10. So everyone has been great. I am actually waiting for my brother to get back to me. He works in a hosp. and has a lot of connections, he was taking all my path. reports and having the bc center look over them. So it is like getting another opinion without having to actually go through it all again.
I will keep you posted on what I decide and again thanks for everyone's support.
Colleen
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Woke up feeling great today, 7 days after the first treatment. I am hoping to go away this coming weekend to visit my daughter at college and see her in a performance.
Good luck with your decision Colleen. My onc didn't offer me the dose dense but I'm alot older than you so that might be the reason.
Thanks all.
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I made it thru the 2nd round today. I suppose the decadron they put in with the aloxi makes me peppy. So I feel good. Hopefully I won't crash tomorrow. The good new was that my blood looks great and they said it wasn't necessarily cumulative and that I should get thru the next 6 rounds feeling like I did after round one and two. Fingers crossed round two will be as good as round one.
Colleen...good luck with your decision. I felt making up my mind was the most difficult part of this whole process.
Jill - If they think it a cyst, it proabbly is. I had a fibroadanoma on '07 and they knew it was a cyst. When I had the ultra sound in '08 they knew it was more..
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Colleen
Yes, I had reconstruction also, so if you have any questions, and want to pm me, I would be glad to answer any questions you have!!
Good Luck!!Rita,
Waiting to hear more from you, about this project... must say that I'm intrigued!! The Reach to Recovery training is on hold... Denise, the woman who is in charge of the program, has been in the hospital, and no one knows when she'll be back... I'm frustrated!
Harley
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Really sad tonight.
I had to put my 19 year old kitty to sleep. Allie has been my buddy since straight out of college and we went through so much together. I remember while going thru my first bout of bc and the wretched A/C chemo, I watched a lot of videos that summer. She used to sit on the cushion above me and wrap herself against my (bald) head-- and purr. Sounds ridiculous, but it was so comforting and I imagined, intentional. As if she knew.
So yeah, 08 has been a crappy year in some ways. I lost my breast and my cat.
I think I miss my cat more.
-julieb
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Julie
I am so sorry to hear about Allie. Losing a pet is like losing any close family member. How hard this must have been for you. And yes, she probably did know when she wrapped herself around your head.
Let us know if there is anything any of us can do.
Mandy
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Oh Julie! My heart goes out to you. I have a 16 year old cat myself and I know my cat knew something was wrong after my surgery and chemo. He also cuddled up with me, so I'm sure your cat also knew. She was giving you comfort when you needed it. 2008 has been a rotten year for you. It's a good thing that 2009 isn't too far off! Hugs!
Scarp.... 2 down! I bet you're going to sail through this chemo just like Carol did!
Back to proofreading for me.........
Rita
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Julie - I am so sorry about your cat. A few years ago my dog Buster died at 16 1/2. I think it was one of the roughest times I went thru. I tear now even thinking about him. After he died, I swore I would never get another dog. I made it like 4 months and now have Rudy a 4 year old mini labradooble. Funny thing is he has an almost identical personality as Buster. You'll never replace Allie but maybe getting a new kitty might do wonders for you.
Rita - I certaining hope I sail thru this. Positive thinking. I am tired today cuz the decadron kept me up for a bit last night. Plan on turning the house phone off about noon and taking a nice long nap so I'm good for when the kids get home from school
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Julie, I am so very very sorry. I just emailed you about Allie.
It is losing a family member. You did the best and kindest thing for your Allie you could have done.
love to you.
annie
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Julie: I am really sorry about your cat. I have a bichon (dog) and I know how terribly sad I would be. I hope the last few weeks of 08 will go fast and 09 will be a much better year for all of us. I have to call and speak to the Dr. and talk about my treatment schedule. I will get back to you later and let you know what I decided.
Colleen
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Julie,
So sorry about Allie! I know it is SO HARD! About six years ago, my first cat, Axel had cancer, and we had to put him down. It was the hardest thing I EVER had to do!! He was supposed to come live with us at the beach, when we moved, but he didn't make it. He was suffering, so we just had to let him go...
Rita,
I am staying off the computer for awhile... I got your email, and will try to reply, but I'm going MIA for awhile... this neck pain has gotten worse, and I don't know what to do about it. I'm terrified to go and get tested to find out what it is... Seems like NOTHING is helping with the pain.
Hugs
Harley
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Hi Jewels,
Well, its "CATION" time once again. Although I have been fortunate to have taken a couple of cations already this past year, for some reason it seems like its been ages. This will be the first time that we have been gone over the Thanksgiving holiday. For our kids, it makes it easy to decide which household to chow turkey at !!!
We are heading to the airport tonight, the hassle of catching a ferry or driving around the peninsula for a 7:30am flight gets my knickers in a knot. The stay and park packages are a wash as far as the price to park in one of the lots for 10 days, and we'll be a quick shuttle ride away from the airport.
We have a tee time for tomorrow afternoon, I unfortunately don't think my chest has quite recovered from the port removal to be whacking a golf ball. Hopefully by the weekend I will be up and running. Hey, somebody should be sitting on the patio enjoying a "rita" cheering those golfers on !!!
I'm really hoping that I will be able to see Jill while we're in the AZ if even for just a short visit.
The dh will have his puter with him, and lucky me I can now surf the site with my phone, I've got a long ways to go to be fast enough to post with the Blackberry.
Just a couple quick shout outs ...
Julie, my thoughts are with you ... are pets have always been more than just pets to us as well. May all the great memories of Allie help heal the fresh pain of losing her.
Mandy and Scarp, so glad to hear that your both doing so well after your txts.
Annie, who's in your avatar pic??? How bout sharing a larger one ???
Take care ladies, Carol
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Hi gals:
Carol! How nice to e hear you! I am glad you are on vacation and recuperating in true carol fashion from that nasty port removal. You deserve to soak up some sun and fun.
The avatar is from left: me, my daughter, my hubby. I don't know how to make the darn thing bigger........grrrr so computer impaired, but I'll try later.
I hope you get to see Jill, a friend is always the best help and you guys are close. Please give her a hug from me too.
Harley, if you are around, my neck is like an Igor neck; sign the arimidex is working I hope. I find some good stretches about 3x a day really help me. I've always had a crappy neck, it's exacerbated by poor posture when I am reading or driving or on the computer. Is any of that going on for you? Also a heavy handbag will really do it. Feel better hon!
Scarp and Mandy, you gals hang in there and post us how it's going, OK?
Rita, hi!!!
love to all
annie
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There you go, Carol, a better avatar, my kid, my hubby and moi.
You're right, that other one was ridic
xoxo
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Annie ... Awesome pic gal, I can even see that one on my Blackberry!!! It's so nice to put a beautiful face with your words. Sitting here on the ferryboat to Seattle, kinda funny as the dh is typing away on his phone, and I as well.
Be well my friends, I'll be checking in!
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Annie,
My dh says it's because I'm on the computer so much! I have given up the heavy handbags, since I always stuff them, and that was when I noticed some neck and shoulder pain. I think this time, the neck pain started when I got up from laying on the bed suddenly, and I had this SHARP pain! OUCH! Anyway, it has been like a real sharp pain, in the back of my head! It was on the left side at first, but then it moved to the right. It seems better today, but I don't want to aggravate things. I've been putting a heating pad (ok, a water bottle) on it at night, and that seems to help some.
Carol,
Have a great vacation!
Rita,
I'll try to get back to you later... Those questions are HARD! Oh, and I'm not very smart!!
HUGS
Harley
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Carol...have fun on your vacation! Unwind and just enjoy the season! If you get the chance to see Jill, give her a big hug from me!
Annie...Hey! Love the new avatar. It's hard to tell who is the mother and who is the daughter! :-) And reading between the lines, I think I see where you've cracked open that Arimidex bottle. I'm proud of you, gal!
Mandy and scarp....hope things are still going well for you. Keep us updated!
Harley, I'm sure your neck problems are caused by misalignment from those purses or the computer. I've had that several times because I refuse to give up my over-packed large handbags and I can't pull myself away from the computer screen. Try not to worry!
Well, I need to get busy. I was just checking in to see what's been happening here. Now I'm jealous after reading about Carol's vacation and thinking about the Thanksgiving Dinner that I still need to plan and get cooked! LOL
Catch you later, gals.
Rita
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Hi All - I just wanted to let you know that I have decided to go with the CMF dense dosage every 10 to 11 days. I spoke to 3 different onc.and they all agreed that this was the best treatment for me. If for some reason I can not tolerate the treatment they would take me off the research and spread the treatments to every 3 wks. So I am starting after Thanksgiving. Defintely very scared, but I have a good support system. And I am getting to see my family this year for Thanksgiving. And I am looking forward to that. I will let you know how everything goes.
Colleen
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Colleen,
Don't you feel better now that you've made your decision? I'm so glad that you will be surrounded by family over the holidays. By doing the dose dense treatments, you will be done before you know it. We will be here to help you along the way and offer support and encouragement. You will do fine. CMF is so doable!
Rita
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