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CMF Question

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Comments

  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Hi Rita, doing great so far. It has been fun, actually, going to rads with a friend. They are so sweet there, and my rad doc is so nice, she even bought me a tea yesterday!Skin is fine, a little tiny pink, but otherwise doing well.

    When do you start your last treatments? I know you will make it through and be on the otherside really soon! What a journey! It has been a real comfort going through this with you Rita. Even though it is over the internet, it is really wonderful.

    Happy 4th to all my American friends. We had our celebration July 1st, and like you Rita, I am like a kid about fireworks. We had my brother, his wife and kids over and for the first time had fireworks in our backyard. What fun!

    Sending out hugs to everyone here...(((hugs)))
    Ginny
  • b445
    b445 Member Posts: 980
    edited July 2007
    Happy Fourth To all!
    Fireworks are so much fun. I miss not being around the kids this year but had a grand time at the Zoo with my hubby then walked the rose garden.
    I'll stand outside later tonight and watch the neighborhood light up. It against the law here but two bloks away it's ok so they will put on a light show for us!

    I'm doing good. A bit tired but when I don't stay up half the night and get some rest then I have much better days!

    Hugs and Prayers for all
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Cheryl, So glad to hear that you're doing O.K. and coping with the treatments. My thoughts and prayers continue to be with you. I always look forward to one of your posts.

    Ginny, I start my next chemo on July 12th. I have one week more of chemo holiday. How very much I am dreading it! I know I can do it. I've already done the first four, but I just hate to go back to it. Still, I know that it needs to be done and there are only two more.

    I hope you all enjoyed the "active sky" last night. The little town down the road from me always has a fantastic firework display and I thoroughly enjoyed the show.

    Take care everyone. There's a few of you that we haven't heard from in awhile. If you are lurking, please pop in and let us know how it's going for you.

    Rita
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Rita, just wanted to wish you well on your chemo this week. 2 will be quick, before you know it you will be done I had about 9 and am on the other side. You can do it! Remember you will soon be enjoying the "chemo holiday" in between. Hope you can get some good rest through this Rita. I think the rest is so important. Helps your body rebound.
    Your in my thoughts and prayers (you too Cathy and everyone else...LR are you still coming to this site?)
    Ginny
  • iamonly39
    iamonly39 Member Posts: 10
    edited July 2007
    Rita,
    Good luck on your chemo this week. My last one is Friday and I can't wait to be done. I just want to be done with this stuff and go back to normal is that is possible.

    Right now I am waiting to see if my insurance company will cover a mastectomy on the "good side" . I want to do everything I can to cut down my risk.

    Ginny I hope your rads are going well. How may do you have to do? Hopefully you will be done soon

    I turned 40 the other day, but I told my husband I didn't want to celebrate until I was chemo free and feeling back to my old self. So maybe sometime in August we will celebrate.
    Hope everyone is doing well
    Take care
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Thanks Ginny and LR for your good "chemo" wishes. Hey, LR...this week is it for you! That must seem wonderful! Will you be taking Tamoxifin or any related pills when the chemo is over? It's really to good to hear from you again! Hang in there with this last chemo and look forward to the normality that will return. I don't blame you for waiting to celebrate your birthday.

    My birthday is the end of August. Two of my friends and I are flying to Vegas for 3 days in early September to celebrate my birthday and the end of chemo. It always helps to have things to look forward to when facing the wonderful chemo treatments!

    Ginny, I hope the radiation is still going well for you. Are you feeling much fatigue with it yet?

    Yesterday I went and had my hair trimmed and colored before this last chemo dual starts and I shopped for some comfort foods today so I guess I'm ready to plunge ahead again.

    I'll keep in touch. Hope all of you are doing well!

    Rita
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    LR, you are almost done, 2 days---terrific! Happy belated 40th Birthday! I celebrated my 45th birthday a couple weeks after my last chemo, and a few weeks before radiation. I had less energy, but had an amazing time. I'm sure your celebration will be really fantastic.
    I know how you feel about having a mastectomy on the other side. I have had this desire too. My aunt, who had a mastectomy 26 years ago, encouraged me not to do it. She had 26 years with one breast free of cancer. She did develop a new cancer, got it early (as we will all be monitored well for years), decided to have another mastectomy (she is 76 now) and is doing really well. Just thought I would put that out there for you too. She had stage III 26 years ago! We all have to chose what is best for us, hope you don't mind me relaying this story.
    This Friday I will be half way through my rads (25 in total)I will be all done the beginning of August. Things are going well so far. I'm a little pink, no pain or real discomfort. The rad techs are great and my volunteer drivers make the trip really enjoyable. So, so far, so good. Rita, yes, I am definitely more tired now. I usually have a nap when I come home and get less done than I would like to....but this is just temporary and rest, if you can get it, is good for recovery.
    Rita, your birthday plans sound like a lot of fun. What a great thing to look forward to. Before you know it, you will be packing your bags!
    Is your hair still thinning Rita? Mine is still, not as much as before, but gradually becoming less as time goes on. I figure by Christmas my thick hair should be back. Funny, my husband says he loves my thinner hair better. You must feel "renewed" after having your hair done.

    All the best to everyone, hang in there, we are surviving this---one day at a time.

    Ginny
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Rita, your b-day plans sound wonderful!!!
    LR, just to put it out there, I had DCIS, stage 0 cancer in my right breast. I opted for the double mastectomy. I had an invasive tumor in my left breast that did not show up on mammo, sono or MRI. This is why I am here and doing the CMF. Who knows what would have been. When I was making my decision and seeing many doctors, one said to me "cancer hides in dense breasts". It kind of stuck with me. That coupled with the fact that 18 years ago, the day after my mother's mastectomy for non-invasive cancer, she said that she wished she took them both. Now, thank G-d she never had a problem with the other side, but she always wished she had done it. I don't say this to scare anybody but to inform.
    Ginny, feel good.
    I had my 5th infusion yesterday, can't believe i'm actally this far along. Thank you all!
    -melanie
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Hi everyone....

    Melanie, we are getting through them, aren't we? Still, it is a long journey. By the time I am through in August, it will have been 10 months for me to get everything completed. (if all goes as planned) Ginny said it the best of all, I think.....we are surviving this one day at a time and today was a lovely day in Illinois.

    Ginny, my hair is still thinning a little and of course I wonder what it will do once I start in again tomorrow. I'm hoping that it doesn't thin alot more. I had my hair dresser cut mine in fairly short layers (for me) and it's not nearly as puffy as it once was. Still, I feel fortunate that I still have hair and have realized that there is no longer any bad hair days. Some days are just better than others.

    I hope everyone is having a good day.

    Rita
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    O.K. LR and Melanie....I might be joining you, in doing another mastectomy. Just after reading your response Melanie, I got my results of my mammo that I had on my "good breast" on Tuesday. While it appeared that nothing was there, they did note my tissue is "dense parenchyma". After looking this up, I realize that it is like looking through a cloud (my tissue). So really the mammo and mri might not pick it up (like you experienced Melanie). This type of breast tissue is more likely to become cancerous as well---not another tough decision, thought this was over with my last radiation sessions (13 to go!) It seems, on these boards anyways, there are other women who have had a similar situation as you Melanie. Now I'm really concerned!!! O.k., I'm a bit freaked out today. I am going to talk to my surgeon, when I see him in a few weeks, to go over these results, about having a mastectomy next year (want to heal from the last 10 months), in the meantime also ask for an ultra sound. I talked to my aunt (the one I referred to in my last post) and she thought that this decision was probably a good one.
    Any other ladies have any feedback about this?

    P.S. Rita all the best tomorrow!

    Blessings,
    Ginny
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Hi everyone.

    Oh Ginny....these decisions are the worst, aren't they? I can't really advise you on this as my situation is quite different but I've met several on this site who have opted for the double mast. for exactly the reasons you have stated. I think what it will eventually boil down to when you do your research and talk to others is that "you have to be comfortable with your decision." Once you are totally comfortable with your decision, you will continue in whatever manner is necessary. I hate the decisions that we're faced with during this journey.

    As for today...what a nightmare! As soon as I got ushered into the chemo room, I knew I was in trouble. They put me in the only section that has the "incompetent nurse" who is as sweet as peaches and cream but needs to take a refresher course in IV insertion. She tried three times with no success. Then she went and got the supervisor who got it in on the first time. If there would have been an empty seat, I would have asked to move when I saw where they were putting me but all chairs were occupied. Then they pushed in the M and 5 Fu with no problems but I had to sit and wait for 40 minutes for the cytoxin to come out of the lab. The batch they had did not want to mix...now isn't that encouraging?????? It was a long day by the time I got home and collapsed on the bed and slept until just about an hour ago. Hopefully the side effects will not be as bad as the actual experience.

    Thanks for all you good wishes. I sincerely hope I have done the right thing. My white blood count was only in the low normal range today after all the week off of chemo so I don't know what is going to happen there. I will be so glad to get these last two finished.

    CY.. I stumbled onto your picture thread on the Wagons forum. What a great idea! I poured through and met your family, saw an updated pic of Hayden, and marveled at your wonderful landscape photography and vegetation prints. They were simply gorgeous. Have you ever thought about selling some of them? I think you have a real talent. I send good vibes your way everyday and hope that you're dealing with this new regiment as well as possible. Hang in there and be sure to check in often as I worry about you.

    Hang in there gals.
    Rita
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Ginny, I know that you can get very different responses from every doctor. 2 docs looked at me as though I had 4 heads when i suggested a double mastectomy for DCIS. I had 2 others saying that it was really up to me. I guess I just said to myself "which choice can I make where I CAN'T lose?" That's the same thought I had when deciding to do chemo or not.
    Look, nobody has a crystal ball, you just have to go with your heart.
    Rita, I am so sorry that it was sucha rough day for you. It really stinks when thigs like that happen. I hope you are doing okay.
    Thinking of you all,
    Melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Hi everyone,

    Why do they refer to this CMF as "chemo light"? My surgeon told me that I might get just "light chemo", but never gave any additional details. Now that I am learning more from him (he has to put in a port first), and the first oncologist I saw gave me only a few details, but none of the options sounded "light"! With "light" chemo, do I get only 2 or 3 months of treatment? Is this the one that you may not lose ALL your hair? it sounds like that, from the thread I have read.

    Thanks for any info. you can give me. My new onc. says he doesn't care if I skip the chemo, but my surgeon is really pressuring me to do the chemo., and I am just so SCARED!

    Thanks everyone!

    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Hi Harley,
    "Chemo Light" or CMF is a lot easier to take. I am on my 5th of 8 treaments over 6 months (1 every 3 weeks). Only I know that I have lost hair , although it does vary.
    I am shot for a few days following treatment and then pretty much okay for 2 weeks.
    It's what we all say, it's do-able. And believe it or not , it goes fast. I can't believe that here I am at my 5th treament giving advise to others. I feel like I just started.
    Good Luck!!!
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Hi Melanie,

    Thanks for your reply. I am still not sure whether I should get the chemo, since it was ER+/PR+, node negative, and only .8cm, grade 2. I'm having the Oncotype Dx test done, and they should have the results soon, since I skipped the insurance approval (my insurance won't cover this test!).

    Geez, I was hoping to be finished in 2 or 3 months! Six months is a long time! I feel that I will NEVER finish all the treatments! I'm having reconstruction, too, since I had a bi-lateral mast., and I just want this to be OVER! I have spent the entire summer just laying in the sun, which should be fun, but with all this hanging over me, I can't really enjoy myself.

    Thanks again for the advice! See, you are already a 'veteran'!

    Take care,
    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    It sure is crazy when things go longer than you anticipated. Believe me, I know. I am ER+ Her2- .7cm
    node neg. and 16 on oncotype. It sucks to do CMF, but this to shall pass. Look, they really don't know what to tell us in the "grey" area, which seems to be a lot of us. That is why they are doing the TailorX trial.
    Go with your heart!
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    I was HER2 negative also. Geez, I really had hoped since the lymph nodes were negative, I might be able to escape the chemo.

    My surgeon just keeps telling me "You NEED to do the chemo!"

    I guess I'll just see what the results of the Oncotype DX test are, but looks like I will have to prepare for possible chemo.

    Maybe we'll be doing this together, and maybe I'll be starting soon... sigh....

    Thanks!
    Good Luck to both of us!
    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    I can't believe that my 15 minute long, heart felt, post just got lost. I clicked on something else for a second. Oh well, let's try again.
    Harley, I too, am dealing with reconstruction. I had the expanders put in in Feb. during the mastectomies. I was filled for about 8 weeks. For a few reasons I didn't start my chemo until mid april, after fully expanded. I am more sore now around them due to the chemo, but it is just another on the list of things we deal with day to day, that we CAN deal with. I am the biggest chicken, really. Everybody I know says that I am their hero and so strong, I really have no idea why. I am just taking things one day at a time. I really have made that sort of a mantra...one day at a time. It works for me. I am in NY, Harley, where are you?
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007

    Melanie,

    Thanks for your messages! They are really helping me! After talking to my surgeon on Friday, I was almost ready to tell him, "go ahead and put in the port." But, as you say, one day at a time. I have to get the results of the Oncotype test first, and I'll ask my new oncologist LOTS of questions about the reliability of the test before deciding.
    My dr. wouldn't put the expanders in just yet. He's waiting for my decision about chemo. So, do they hurt much? I am a big chicken, too, but so far, I've been lucky because my mast. surgery was easy, and I didn't have very much pain at all. I had the numbing block in my back, so I didn't feel much pain. That is a good thing!

    Everybody I know has been telling me the same thing... that I am amazing, and they can't believe how easily I have gone through this! I believe that it's been God, helping me, every step of the way.

    I am originally from Maryland, but my dh and I moved to North Carolina in October 2006. This bc diagnosis happened in March 2007, and my life has been turned upside down ever since. I like living near the beach (we are only 3 miles from the SC border!, and only about 5 miles from the beach!), it's usually sunny and warm here, and the winters are mild! My husband is in the Navy, and he is stationed in DC, so I don't get to see him very much, but he comes down and spends a few days every other weekend. Where in NY do you live?
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Hi Harley, I am on Long Island. My son is in Greensboro NC right now at a tennis tournament. The expanders are basically something you just have to get used to. Basically like your bra is too tight at the end of the day and you want to take it off, but that's right, you're not wearing one. It's good that you don't have them in yet. If I had known that I was going to do chemo, I probably would have waited. They have been in since Feb. 7 and I won't be able to make the exchange until about Nov. or Dec.
    "One day at a time!!!"
    Melanie
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    One more thing. With cmf, they don't always put a port in. I don't have one and my veins aren't typically great, but have been fine for the chemo.
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    I have always wanted to spend time in NY, especially Long Island! Gee, does it really take THAT LONG to do the breast reconstruction, or is this just because you had the chemo first?
    Yes, one day at a time! I am having to learn patience throughout this whole ordeal, and it's not my strong suit!

    Thanks for the advice about the expanders, that sounds very uncomfortable! I guess you have to sleep on your back, am I right? I can't sleep on my back, so that will be interesting!

    Thanks for the great advice! I am getting kind of nervous, waiting for the Oncotype test results, but I have to just take a deep breath, and wait some more...

    HARLEY
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007

    Hm.... My surgeon seems to think they will need to put in a port, regardless of which chemo we choose... I am definitely not looking forward to that!

    Oh well...

    Thanks!
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    No, the reconstruction doesn't typically take that long, but they can't do the exchange during chemo.
    I always slept on my stomach. The first couple of months I learned to sleep on my back, now i can sleep on my side.
    I use lots of pillows,lol.
    melanie
    Sorry to throw this in, but during chemo you will need to stay out of the sun. Still, we have to throw everything we can at this damn bc.
    Let's just wait for your Oncotype results.
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Hi Melanie,

    Good to know that the reconstruction won't take too long, if I have to get the chemo first...
    I had to sleep on my back after the mast., so I guess I'll have to do it again, if necessary. Yes, pillows will help! I was using 3 pillows at first, and it helped keep me elevated, so when I DID start to sleep again on my side, my scars didn't touch the bed, so I could sleep painlessly, for the most part.

    Yes, I heard that I will have to stay out of the sun while I do chemo... but, as you say, whatever we have to do to fight this bc!

    I guess it's just another case of "hurry up and wait!"

    Thanks!

    Take care,
    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Harley,
    Are you anywhere Greensboro?
    Guess I should have checked a map since that is where my 11 year old is,lol.
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    I live in southeast North Carolina, in the town of Carolina Shores, or Calabash. I believe it is about 5 hours, or 250 miles away from Greensboro. Some of the people who live here in this new community are from Greensboro, but there are also a lot from NY, NJ, PA, and MD!

    When does your son go back to NY?

    Another question:

    Did you have the nipple from one of your breasts sewn onto your leg (groin area)? I did, and it is SO disgusting! I can't imagine having this thing here on my leg for 6 more months! YUCK!!

  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    My son will come home whenever he loses in the tournament, near the end of the week.
    Goodness, that must be interesting. My doctor actually doesn't believe in doing that...but I did ask.
    Hang in there!!!
    melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    I hope your son WINS the tournament!!

    You asked your surgeon about the nipple? So, how's he going to do it? Will it be a tattoo? I hear they are very realistic looking. My PS will tattoo the aureola (sp?) on.

    My PS told me that if I wanted, he would tattoo the nipple on, but my general surgeon insisted I do it this way, because he said that I wouldn't be happy with it if he did it any other way!

    He is really an opinionated man!, and even though I like him, it is so frustrating, because he has insisted I do everything he says, every step of the way! I have done EVERYTHING my surgeon has said, through this whole ordeal, but now I am thinking that the next step is NOT his decision, but the oncologist's and mine. I hope this is making sense.

    I have never had a choice about any of this, but... I guess we really don't have a choice...

    Good Luck to your son, in the tournament!
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    The funny thing is, I had nothing but choices for months. Nobody gave me a definitive answer about anything, from surgery to chemo and more. I went for so many opinions because nobody gave me definite answers. I WISHED somebody would. It is so funny, I guess no matter which kind of surgeon we have, bc is tough to deal with.
    I will have tattooed and built up nipples eventually. They said that they could use either lambs wool (believe it or not, hey you have a nipple on your leg I guess you could believe anything) or just skin from my leg. Actually my breast surgeon felt that my own nipples were still breast tissue so better to not use them.
    Thanks for the luck for the tournament.
    melanie

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