CMF Question
Comments
-
Harley, I think people want and need to believe everything is great and that we are cured (and we may well be
) Just think in reverse, if your husband was the one with cancer, you would so want everything to be ok after being so worried for him for so long (this is a long journey). Like Carol said, it is really hard for others to relate to our feelings if one has never had cancer. I remember feeling similar and I had a heart to heart with my dh about my "fears" of recurrence. I told him it was not over for me emotionally. It is important to share this, I think. This helped him understand why I was not back to "normal" after my treatments had finished. But I also realized that expressing my fears to him a lot was hurting him and me too (I don't mean it is good to be in denial, but with time, I started to appreciate each day and decided I don't want to "ruin" what ever time I have (and no one really knows) with fear. I try and consciously chose not to do things that keep me thinking about bc all the time. I think I'm sounding a bit "preachy" here (sorry) but I hope this helps in some way. I even had to take myself off these boards for awhile and stop myself from over researching on the net and books... I, in no way, have gotten this all figured out, but these things along with prayer have really helped. Annie, you are so funny! I love the alien comment---hilarious! "Men are from Mars and Women are from Venus". That's the other part to this piece. Not only have they not been through the c experience themselves, they are also men and therefore they think so differently than we do. I also agree it would be great if they had or would seek out support for being a husband of bc. I guess we can be their support though, when we feel stronger and are able. This takes time though. Prayers for you that the beach time is very healing for you both.
Carol, about rads and swimming... I love the water too and was cautioned in the beginning. So I think for the first week or two I didn't go in the pool (at least not underwater---just kind of up to my waist). But after this you can kind of see how your skin is reacting. I did swim in our pool (not a lot) but when I did I just went inside and washed off the area where the chlorine touched my radiated skin. I kept moisturizing after radiation and before bed too. I did not have any real issues with my skin. I had a few tiny bumps (like pimples) towards the end (really no prob at all!) and put some cortisone (1%) cream on and they cleared the next day. So all in all, I think you shouldn't rule out enjoying the water altogether. The enjoyment of it is a healing thing too!
Hi to Rita, Jill and Lisa...and everyone else here.
Hugs,
Ginny
P.S. Yes Annie the "healthy garden" comment was a Freudian slip---a real good one. I do feel so much better emotionally and physically. It will have been a year in the beginning of August, when all my treatments were finished. I am enjoying every minute of this summer! And yes, I believe there are many blessings that come out of this difficult journey (as with all our different difficult journeys in this life). It takes time, though, to really start to "see" them!
Hang in there everybody
0 -
Ginny...I LOVE YOU HAIR and your new avatar! Super style!
Carol............a 44??? You are way out of my league! That is so awesome! Just keep them coming. I played this week with a gal that shot an 86 for 18. We had lots of fun durimg the round and I just loved watching that ball soar down the fairway and onto the greens.
Hi Annie and Harley.............I think everyone has expressed the male/female/hubby differences so well! They really don't have a clue sometimes! That's why it's so good that we found each other.
I'm off to hustle up some dinner. More later......
Rita
0 -
I'm just bumpting up our thread and wondering about all of you. I hope that everyone is doing fine and is just busy. How you doing, Annie?
Carol...what about the rads??? A breeze, eh? I bet you're speeding out the door and racing on to finish your day! LOL
Harley...Did you sigh a big sigh of relief when you walked out the door of that dress shop for the last time???
Gotta run but wanted to check on everyone. Jill...you've been MIA latetly. Please check in!!
Rita
0 -
Wow Rita, are you phsychic?
I just was e mailing my sister, (the very self involved one) and chatting about this and that and in the thread of the convo, happened to confide that I had just tried on a nightie for the first time since i was reconstructed and that while not great, I was OK with it and my body and felt like it'd be OK>
NO reponse. Chatted away about everything else, but it was like I had not even written it.
I know we e chatted some about this, but did anyone else ever have this complete denial of the situation happen to them? I am just flabbergasted.
AGAIN SO THANKFUL FOR YOU LADIES!!!!!!!!!!
I think this makes a big point to me about how the "outside world" can't often deal with what we go thru...in fact, our supposedly near and dear, often don't even want to discuss it. Boy am I wise to this now. They weren't like this the first time and I am just gobsmacked. Didn't answer the email, but thanks for being there guys.
Hope all are well, good to hear from you rita.
xoxo
annie
0 -
Hello Ladies,
Rita, thanks for the bump ... rads is going well. The last couple appts have been rather lengthly, yesterday to see the doc for some additional setup. They made a bolus for me that I will be wearing for each txt. I didn't really understand the purpose of it until today. I guess it helps to give the area a more intense zap closer to the outer skin. It can lead to a worse case of burning, the tech just told me "we'll get you through it". Easy for her to say!!!
I brought the rad office some fancy Norweigen cookies from our local bakery. They seemed genuinely appreciative.
Oh and the golf game was not the norm, my handicap is about a 24, which would have me shooting much higher. Figures when there is no money on the line I do well!
Ginny, your looking great there gal. I'm looking forward to my hair to stop thinning, then it will be time for some color, the gray is driving me nuts!
As far as exposing my rad area to salt/pool water, I think once things start to get toasted I'll try to avoid anything that might cause undo irritation. This new news about this bolus thing kinda has me worried that this might not be the breeze I anticipated.
I remember reading the book Men Are From Mars ... there certainly is a lot of truth to it.
Annie, hoping your outing to the "retreat" for the weekend is just what the doc ordered. Enjoy yourself, with a houseful!!!
Harley, you got it, I'm training to do 60 in 3 Days, YIKES ... I've been trying to get some good long walks in now, who knows how I'll be feeling in a few weeks. Hitting the pavement this weekend for a 10 miler on Sat and 12 on Sunday. Sure doesn't leave a lot of time for golf!!!
All for now, since I'm still at work!!!
0 -
Hi girls, I could really use some help with this new wrinkle....
(before I get going here, Carol, it sounds like you have it in control,,,I have not heard of this new apparatus, but it does sound as tho rads has come a long way in being able to really pinpoint the areas, since I had it six years ago....It shouldn't interefere too much with your training or your life, it's not that bad, or at least mine wasn't. Dont worry too much, most people sail thru rads, really.
I do think you are wise to watch the water a little bit, but they check your skin daily, I will pray for you as well, I really think you'll do great!
I am just in tears (sorry, another pity party)...I didn't mention this, but this weekend during one of the parties all my family was there at my mom;s. While I get that alot of people are so uncomfortable with this cancer stuff, not one soul even asked me how I was doing, or how I was feeling? I went around to everyone and asked how they all were, their kids; is this something else you guys have encountered as well? I thought I had gotten it into perspective, but my sister just flat out refusing to even acknowledge a moment about my feeling semi human I guess that has really gotten to me. Normally I am more upbeat than this, but I feel hit by a truck.
Ginny, I went back and re read your post about forgiving and letting go, it helped alot. It makes me even more determined than ever not to let another woman have this feeling. It was not easy to try on that sexy nightie and make peace with what is, and I thought I'd share the moment with her and she would be happy for me. Wrong. It even extends to this!
Well, reach to recovery, here I come. I'd love input if anyone has any to share on this stuff, it's worse than I had even thought. It's like we are lepers or something! I will come around, I always do, but I think I need a week at the seashore away from seemingly uncaring family more than I thought I did.
I won't be around from sat=sat, so I will miss you guys, Harley, hang in there, Ginny, thank you for your insight, Rita, keep on being your lovely upbeat self, Carol, rads will settle down and they will make sure you are safe I know. Jill, I haven't seen you on here in a day or two I hope you are well. You sure sound it!
sorry about the downer e mail guys, I had to turn to you bec. the world seems to be kicking me out!
love to all
annie
0 -
sorry, still rambling on, but I have to get this out of me, it's hurting too badly to leave in....this is almost funny if it wasn't....my sister was sitting NEXT TO ME talking on and on about how she is helping a friend of hers with chemo, how this woman is so grateful to her, how she drives the kids around....I told her I thought it was great, and I do. I just wish she had even noticed what I went thru the last six months. I don't need the help, I am blessed with my hubby and daughter, it was just the acknowledgement of what had happened even being on her radar. She sent her 11 year old over with the laundry for me to do the AM after my last chemo! My husband, bless him, did it, but I guess it was the blatant fact that obviously she had no clue or did not care when I had chemo. I had been kidding myself about that. Same with my mom.
But still in light of this, nothing to me about "hey, how are you doing with chemo?" even thou She is SITTING RIGHT NEXT TO ME TALKING ABOUT CHEMO. Is it me, or does anyone else find this just bizarre/hurtful?
I'm a mess and will get off. Sorry girls, this has been one eye opening week. Wow.
Well, on the plus side, I look OK in a nightie, I can sort of balance myself with stuffing, and the foob's coming along and only one more chemo. Looks like my celebration will be amongst hubby and daughter and that's enough I think.
Wow, pity party extraordinaire, sorry! Have a good week girls, I won't see you for a bit.
xoxo
annie
0 -
Annie,
I think it is HORRIBLE how your sister is acting!! That is just wrong! I just don't know what to say... She is obviously very self-centered, and can only think about herself, and how she is helping her friend, and on and on... I have a sister who is alot like that. I only hear from her when something has happened to her, and she wants to tell me all about it.Sending HUGS your way!! I'm thinking about you, and hoping you have a great weekend!! You only have ONE more chemo!!!! YAY!!! Soon, you'll be FINISHED!!
Just wanted you to know that I'm thinking of you and praying for you... We are all here, to support you, whenever you need us!!
Enjoy your weekend getaway!! You deserve it!! Just remember, even if others don't get it... WE DO!!!
HUGS
Harley0 -
Annie, okay this may be a stupid thought, but .... unless you loose all of your hair and look sick, I think many "forget" (maybe not the right chioice of word), what we are going through, especially through chemo and other txts. I have gotten alot of support from those who have followed my journey (via a group e-mail), I have given updates along the way, shared a few pics (such as the ones I post here), and those family and friends usually give me some words of encouragement. But as far as others, unless I we're to bring up the topic, many (including neighbors, many at work, parents from my son's skate team, etc.), have no clue that I am even being treating for bc, let alone have had my breast whacked off. Its that every once in a while when I'm feeling kinda down that I want to announce to the masses that "hey, you all have no clue what I'm going through both mentally and physically".
Yes, I would personally expect more from my family, and I am saddened beyond words to hear about the lack of compassion from your sis. Makes you want to shave your head, just to see if that might be a wakeup call for some!!!
I really hope that you have a good get-a-way, enjoy the time getting "reacquainted" with your dh and hopefully your daughter keeps the music to a dull roar!!!
Thinking of you my friend, Carol
PS, I tried your home phone, message box was full, left a msg on your cel. I have a heck of a time trying to voice the right words in text!!!
0 -
Annie...have a wonderful "get away!" I'll be thinking about you! For one, I am very impressed that you've donned the sexy nighty! Dave bought me one for Valentine's Day and it's still in the box. I just can't make myself get it out and put it on. You give me hope!
As for your sister and family, I think Carol is right. We didn't lose all our hair so it's not so obvious that we, too, are suffering through this journey. The loss of hair screams "CANCER!" and gets everybody's attention. Other than that, we have all the same hurdles to jump. Most of the people who acknowledged my journey just commented on how well they knew I'd do with it since I was such a strong lady. I just wanted to say, "I'm so tired of being the strong one. I just want somebody to lean upon." Perhaps that's what I just should have told them. Instead, I'd just nod and move on. When this happens within the family, it's even sadder and it does hurt so much. Try not to think about it this next week. Just go and have fun with those who truly care. You'll have plenty of time to deal with the issue later. My Danish grandfather always said, "Nobody can hurt your feelings unless you let them." I think he was a pretty wise guy! Enjoy your time away!
Rita
0 -
Hi guys, I am still here, we leave in the AM and won't be on here for a week .
Just jumping on to say THANK YOU SO MUCH.
Rita, It had not occurred to me at all that yeah, I am viewed as the "strong one" and yeah, I do still have all my hair, you can't see a thing. Visibly, all that has happened is about 15 lbs. on. So thank you for pointing that out. Rita, when you wrote "I am tired of being the strong one" boy did that resonate for me. I am tired of it too, and that is how the family views me. They never paid any attention to the loss of my son either, just my daughter. After that first bc, they were sort of nice, but no one wanted to talk about it. This seems to be the way they cope. I am here for venting to and fixing things. That has been my family role. Thank you so much for pointing that out, and oddly, my norwegian grandma said the same phrase "No one is allowed to make you feel bad about yourself unless you give them permission" .....gave me chills to read that your grandpa said the same. It felt like a little "hello" from the other side for me.
I love the Dave bought you the nightie. You should take a private moment and try it on. Yeah, you'll cry, but you'll also notice that you are still here to wear the nightie, and not only that, Dave obviously thinks of you as a very sexy lady if that is the gift he chose. And I bet you'll look lovely in it.
Carol, I am so sorry my message box was full, I was so freaked, I took my daughter out to Borders to buy some books which always is cheering. I got your sweet message on the cell, it was off inside my purse, I don't always turn it on unless my daughter is gone. Thank you so much for your insight and kindness and no, it's not a stupid thought. It makes so much sense and is so healing to put it that way. CMF is not an "obvious" regime, and with stuffing and prostheses, no one can tell for which we can be glad. I too, often feel like putting on a sign that says "dealing with cancer, here, kindness and tact much appreciated." You are such a sweetie pie, and I know you've had a tough road which has been dealt with with amazing grace. Thank you also.
Harley, you are just a darling, plain and simple. Your words really meant alot to me, and I am shocked that your sister does this to you as well. I am sorry. Mine only calls for favors also. You don't give yourself credit for how very strong you actually are, but please take the credit for how kind and giving you are! I appreciate you and i thank you.
I appreciate all the kindness and support more than I can say, gals. Mine is always here for you as well. Perhaps we lose our boobs to uncover our hearts more, because it seems to me that the love and compassion on this board is extraordinary. Must mean those hearts are more accessible.
I am going to have a good day packing, and will be back soon. If any of you need me, please call my cell, I promise to have it on while I am gone.
Love to you all, heartfelt thanks and peace.
xoxxo
annie
0 -
....guys, it occurs to me, that I don't want to be like my sister and therefore, today, I am going to view the people around me differently.
Like us, the scars and pain are not visible for most of the world. I am going out of my way to "practice random acts of kindness and senseless beauty" today.
thank you again for pointing my head back in the right direction.
love you all
annie
0 -
Annie, sounds like Rita's grandfather was a wise man. Go and have yourself a great time, as today is a new day!!!
Carol
0 -
"Like us, the scars and pain are not visible for most of the world. I am going out of my way to "practice random acts of kindness and senseless beauty" today"
Wow, Annie, you go girl!!! Amazing!
I think that is such an important revelation: the scars and pain are not visible to the world. So many people think we "look great" because we have not gone bald and lost all our eyebrows and eye lashes. If we have always presented ourselves as "strong", then others will not know of our pain, unless we open up and tell them how we feel about it. Have you tried to tell your sister how this is hurting you and that you really need her emotional support? It is such a good lesson for all of us to get that there are many people out there, that appear to be fine, and yet under the layers, they are hurting and need support. In fact, I think this is common to all of humanity. We all have different internal scars and pain. We all need love and support. I think BC has a way of opening our eyes to this in others. I know all of us here will be there for others who are going through bc, or any other type of hardship.
I understand how much it hurts to have people you love appear to not acknowledge your suffering during bc. Either, they just can't handle it (for whatever reason---and there are so many) so they avoid, or just don't know what to do and in a sense are almost "frozen" and therefore avoid, or they are just self-centered narcissist (which unfortunately exist in more places than I would like to believe), or they just don't understand how we feel, because we have not articulated how much we need them and how hard this has been on us....I guess the thing to do is test this out by sharing our vulnerability with them and give them a chance to step up. If they do, you have formed a deeper, more meaningful relationship---yeah!, if they don't---pray for them because they might need help.
I think it is a wonderful first step trying on your sexie nightie! You are on your way to accepting and loving the "new normal". I'm so happy for you! Your sister, for whatever reason, is avoiding---sorry that this hurt you so much Annie. We are all so proud of you. My prayers that you have a really special weekend with that dh who loves you so much!
Harley, I hope I did not offend you in anyway in my last post. I was trying to help.
Carol, all the best to you with your rad treatments. Your post really made me laugh.
Carol and Rita, your Danish grandparents are both so wise! Neat connection!
Thanks for the hair compliment Rita. Just wanted to show that our hair all comes back! This is my hair just a year and a bit after finishing cmf chemo. Thick again (but still have some funny dark, curly hairs---almost all gone though---one more cut!
Blessings,
Ginny
0 -
I hope everybody had a great weekend. I met with 6 of the Illinois gals from the Illinois thread at Starved Rock state park here in Illinois on Saturday we had a great lunch and lots of fun. If you want to see pics go to Illinois Gals Facing Breast Cancer under the Help Me Make It Through Treatments.
The bonds that are formed on this site and bc.org are amazing and a true gift.
Rita
0 -
Rita, just a quickie tonight to let you know that I really enjoyed seeing all the smiling faces from your pics from your Illiniois site. That is too cool that you all meet up, I really hope that some day that will be a reality with you all I have made some special bonds with. I'm defitnitely willing to travel to give that real life hug to so many that have helped me with my adventure, while dealing with their own life's journey.
Off to bed tonight, hitting work at 6:30am and jetting out to rads at 8:00 and back to work, hope to get on line sometime tomorrow.
Be well my friends, Carol
0 -
Hi Ladies,
I'm assuming and hoping that the post has been quiet due to life moving along with a positive spin.
Annie, looking forward to hearing about your weekend get-a-way. Did we get a chance to wear that new nightie????
Rita, hoping your hitting the links, my dh had to get another partner this weekend for a 54 holes tourney (I was busy on more training walks), he ended up with a 61 yr old lady who was "steady eddy" down the middle. They ended up taking 2nd place in their div. I better watch it or he will be trading me in on a new golf partner more often.
Harley, havn't been seeing you much on-line here lately, hope all is well. Any news on the job search?
Jill, hoping that gardening, dogs and getting back to a "norm", whatever that is has you doing well.
Ginny, I'm looking forward to my hair coming back in a bit more normal. Boy the last few weeks its really been on a shed fest.
Off to day for rads at 11:15 and then to the onc's office at 12:00. Need to get my port flushed, ask my doc about removal of it, when to start tamo, timing for a hysterectomy, future tests/scans, etc.
Will check back in tonight, Carol
0 -
Carol...Since you didn't really say, I'm assuming that the rads are going fine for you. I played 18 holes this morning. I bought a new driver and had some decent shots which tells me that I can hit it with more practice. Overall, my score was pretty pathetic. I got into a steep bunker on #11 and that was pretty ugly. Finally I blasted out and clear over the green to the other side. What a way to mangle a good game.
Harley...time to check back in with us. I worry when you're gone for too long.
And as for Annie...this thread doesn't seem the same when she's away, does it? I hope she's enjoying herself and taking a mental vacation from bc. :-) Can't wait to hear from her again.\
Jill, hope all is going well with you. Keep in touch.
Lisa and Ginny....hello. Everyone enjoy the holiday. I'm heading to my Dad's house in Tennessee. He has several projects that need to be tackled and the extra day to the weekend makes the travel feasible. I'll get to see my little grandsons, too so that is a plus.
Have a great holiday gals. Stay healthy and enjoy this weather. Summer is speeding by too quicikly for me!
Rita
0 -
Hi everyone,
I have been reading, but not posting. I just seem to be getting so busy, with all these dr. appts., and that is depressing, because I thought they were supposed to become less, not MORE!
I have another dentist appt., an opthalmologist appt., my onc appt, and a ps appt., which is just for a photo shoot... I feel like a model!!Then, I have jury duty the week of July 21st... I was supposed to see my onc on the 22nd, but he made me reschedule it, so I could go and do jury duty. I thought something good should have come from this bc dx... like a get out of jury duty card.
With all these dr. appts., I guess it's a good thing I'm not working much. But, I DID go to pick up my last paycheck from the fancy dress shop. My boss says she wants me to come back, but I am not sure. I don't seem to be doing very well with my job search, so maybe I should just continue there until something else comes up... who knows, maybe just a couple of days a week is just fine for me, working these 1/2 day shifts.
Did I mention that I am also an arrival hostess, working on Saturdays, inspecting condos out on Ocean Isle beach, and greeting renters to give them their keys? It is alot of running up and down, and driving from one end of the island to the other (Uses LOTS of gas! $$$).
Hope everyone is doing well. Annie, where are you?
Have a HAPPY JULY 4th, everyone!
Harley
0 -
Hi ladies,
Just checking in. All is well on the home front! My dh and I are on our way up north to escape the heat. (114 today). Sounds like we are all busy, busy busy. Also been organizing a food drive for our locate food bank. It's going really well.
Carol- Hope rads are going ok. Let me know what your doc says about the removal of your port. Been thinking about that myself. My next follow up is in 2 months. It feels very strange to not have to go weekly. (sometimes scary) I know that sounds kind of strange. My garden is going great. I soon will have watermelon!! We ate all the corn and am able to get a tomato or two every couple of weeks. Squash plants are still going strong.
Rita- I love Tennessee!! We drove through there a couple of years ago and I just fell in love. BEAUTIFUL!! Have a great visit with your family.
Harley- Your jobs sound like a lot of fun. Oh to be at then beach!!
Annie- Hope you are having a plast on vacation!
Have a GREAT 4th everyone!!
Jill
0 -
Hi,
I just had my first mri since my treatments have all finished. They had a problem with the machine and it took 1 1/2 hrs (ouch!)
I hope everyone is doing well
Ginny
0 -
Hi everyone,
I've just joined this board and have been reading through all the pages and finally have the courage to introduce myself. I am about to start CMF on Friday and as this is actually my second bout with breast cancer and chemo, I'm actually more terrified than the first time.
History-- diagnosed originally in 00, age 33, w/ 3.5 cm tumor, stage 2, triple neg, no nodes. Lumpectomy, 4 cycles A/C, on lupron to protect ovaries, radiation. Had a very difficult time with the chemo- esp. a violent reaction to Decadron. Lots of emotional scars too. But, miraculously, ovarian function came back and I have two amazing little children, now 4 and 6. Now- 8 years later, cancer came back. New primary in same breast. Unbelievable- even after full breast radiation. Smaller- barely 1 cm, no nodes, still triple neg. Brca test came back neg. Am scheduled for nipple sparing, subcutaneous mast w/ reconstruction- implant-in late Sept. But will now start 3 cycle of CMF before surgery. (onc would prefer 6, but finds my decision "reasonable" and better than doing nothing.)
I have so many questions and would love to correspond with a group of ladies who know what it's like to go through this. I'm in Illinois- Chicago northwest burbs- and despite a very supportive husband- feel very alone. I have friends- but no one close enough I can go through this with. I work full time, manage a good portion of our income and carry the health insurance. I have to somehow manage to keep my job, manage the kids, maintain the home etc through all of this. I was in a strange situation during my first bout where I was in btw jobs and had a good severance package to live off for a while. Not so this case and I'm terribly worried about being able to manage this all and keep well. The hair situation is also very distressing to me. I managed last time with a very good wig, but I hated it and felt very humiliated and ashamed. I do not want my children to see this either- my son in particular is quite sensitive. I'm wondering as I'm only to go through 3 treatments if I can get away w/o a wig- or does whatever is going to happen happen after the first treatment. I have very fine shoulder length hair that doesn't make for a very thick ponytail, so I'm not sure I'll survive this too well. Emotionally-- I'm not in a good place at all. It's so much more difficult with my children now...there are times that I think that if it weren't for them, I would not go through this again.
I know a lot of this has been discussed in the thread and I don't want to bore everyone asking questions that have been asked continually. Is there a way to share email addresses so that someone could respond privately too?
thanks so much...
julie
0 -
Very few CMF patients lose all of their hair, just hair thinning. I underwent high dose CMF treatments - full treatment - in 2001, and although it was rough at times, it was very doable. My children were 16 and 9 at the time. I went though all treatments and never lost all of my hair. In fact my hair didn't look bad at all, just looked thinner (some women have thin hair anyways) and dry. Make sure you use a good moisturizing shampoo and conditioner.
0 -
Julie sorry to have to welcome you to our CMF posts, but you have come to a place with great ladies who will be here to share your ride.
A littlie history about myself, I had a mast/node dis in Nov and Dec, I started my CMF regimen in January, and just finished up 4 weeks ago. Although everyone has different responses to the meds, I was told from some of the ladies right here on this post that its a very tolerable/doable txt. They we're ABSOLUTELY right.
I know that there are a few different regimen of CMF, mine was given as oral Cytoxan for 14 days, and an infusion of "M" amd "F" on day 1 and eight of those 14 days. Then I would have 14 days of no drugs. This went on for 6 months. I took one Zofran pill in the morning prior to taking my Cytoxan and had NO nausea. On infusion days, they did put a anti nausea med in the drip. I can't for sure tell you what is was. I remember leaving after my first infusion and waiting to start to feel crappy ... it never happened.
My hair did thin, it took about 3 weeks after the start of the chemo, I initially thought that it was coming out fast and furious, but it mellowed out and subsequently each month I lost some of it, but to others they probably don't even notice.
I did have some problems "regulating" my GI tract, meaning I needed to take something for constipation (new to me), I ended up taking Miralax which worked pretty good. No mouth sores at all.
I was able to work the entire six months, starting my days off at 5:00am. My white count on my second to last infusion was too low for txt, so the doc had me wait 5 days to re-check it, which it did and I continued on with my txt. I never had to have the Nuelasta for WBC's.
Within this post we also have a couple of survivors that are dealing with this for a second time. I'm hoping that they will read your post and be able to share with you as well.
I'd be happy to answer any other questions for you and I'll be here with an open ear. Feel free to PM if you chose.
Take care, Carol
0 -
Hi ladies!!! Im back from vacation and boy was it ever great! Lots of laughs, beach, fun, bonding, teenage kids to enjoy and a teensy bit of reconnection with hubby...at least we talked about it re: intimacy. He's a little bit freaked out by the whole reconstruct thing, which I can understand.
I missed you guys, but the "head break" in the middle (or end, Wednesday is LAST CHEMO) of all this was so helpful. I'd reccomend it for anyone.
I hope everybody is as happy as they sound! Carol, how is Rads progressing for you? Rita, you sound like a happy golfer and it is great you get to see your dad and your grandkids! Harley, I know how that feels, unfortunately, everything that was put on "hold" during chemo has to get done after and it is a bit of an exit whirlwind this will calm down soon.
Ginny, I so appreciated your thank you note. You are such a sweetie pie. What beautiful hair and you look so great. Sorry about that MRI, but it's a life saver, it was for me!
Julie, welcome with open arms.........I am doing this for the second time as well. Still flabbergasted that it even happened to me again, but hey, what are you gonna do. The good news here is you won't lose your hair, (I have great tricks to hide thinning areas if you need them) you know what's going to happen this time and are more prepared. You will also know ahead of time how to deal with your kids. If I can add anything, my daughter was 12 at the time and needed more info shared than I gave. As with anything, the unknown is more frightening. All kids are different.
If I can help you thru this in any way whatsoever, please post here or send me a PM. All the best to you, you can do it, these women have been a literal lifesaver for me. It "normalized" an abnormal situation as you go thru it. You will make some of the best friends you have ever had on here, I know I have. They are truly angels.
I also had a violent decadron reaction (kidneys "froze" and heart racing) so they cut my dose to 1/4 of the normal one, then I did just fine. Not one single moment of nausea at all, (aloxi in the drip) but the day after chemo I have to take a nap in the afternoon. It hasn't been too bad for tiredness, I've kept exercising and I think it helped alot. Got my hair cut short to deal with the shedding, but it looks as thick as ever to others I am told. I do have a mop so it was OK. I bought a wig anyway, just so I could feel prepared, it helped psychologically.
Truly, all will be well, I am sure. Keep posting and we will all help you thru it. My last chemo is Wednesday. I had a skin sparing mastectomy (lumpectomy and radiation the first time, also five years of tamoxifen) with a reconstruct in progress now. I had a lat flap procedure as the skin was irradiated. It can be done, don't worry. When you wake up, you have a boob in progress and oh my, for me anyway, it helped so much to know that. Actually, after having to do this again, I think I'd have been OK with a straight mastectomy as well, I was so po'd.....it was like "oh for god's sake, could we not have been done with this the first time?" Very pragmatic. Others are more emotional. Everything is normal.
Have a lovely day everyone, and I am happy to be back with you all. Thank you again for the support last week with my sister, it meant so much to me.
love to all
annie
0 -
Hi, Sorry to ask these here--- how does one PM? I added my email address to my first post, but received a message indicating it wouldn't go through that way. I appreciate the immediate responses!
One thing at large I forgot to ask- DOSING QUESTION:
I was given a choice of the oral cytoxen for 14 days or the IV. I understand that with the oral protocol, it's day 1/ day 8 for the M and the F, pills 14 days and then off two weeks. I thought the IV choice was everything once every three weeks--and this would be my preference as I think it will be easier to manage the fluid intake (ie- not having to manage the pills, fluid etc while at work,...) BUT- see that my Onc has me scheduled for day 1/day 8 and then again this two weeks later. Is this some kind of dose dense protocol? Is the C given on both day 1 and 8? I'm really not interested in the DD as I want to avoid the Neupogen etc as the side effects from that will probably keep me down. Are you somehow given more C with this protocol? I will of course be asking my onc this-- but would like to be armed with information regarding other possible schedues. Could anyone who did the IV route elaborate on their schedule a bit? I'm also trying to make sure that I have an immune system to go into surgery with in Sept...
thanks so much.,
0 -
Julie, to send a PM you click on the person's screen name you want to PM. It will bring up there personal profile if they have one. At that page you'll see Send Member a Private Message. When you log on you should see a (1), (2) or however many msgs you might have that are private. Just click on the number at it should come up. I sent you a PM, just as a test.
Carol
0 -
Annie, WELCOME BACK GAL ... I'll be shouting out in a bit, trying to work on my fund raising letter for my 3 day event this morning!!!
Carol
0 -
Hi Ladies,
Julie- You have come to the right spot for all your CMF questions. The ladies here are filled with unbelievable love and support and have all the answers!.
I was dxt. for the first time in February of 2006 with IDC 2.5cm grade 3 er/pr- Her2+++. I had a lumpectomy, SNB in April 06 followed by 6 txt. of TAC, 35 rads and 11 months of Herceptin. Then the bugger decided to return in November of 2007. Same dxt. had a masctectomy and 4 more lymph nodes removedin December. It was a local recurrance and all nodes are clear. I started CMF in January for 6 months every 3 weeks the IV method. I finished May 1st. Like the others, I did not loose all my hair, but did have hair loss. I had my treatments on Thursdays (total infusion time was only an hour) and I knew that I would be down on Saturday. I also worked through all my treatments. This treatment is very doable compared to TAC. Nausea was very minimal and like Carol I had constipation issues. Please feel free to PM me anytime if there are any questions you may have.
Annie- Glad to hear you had a great vacation!!! WHOOHOO for Wednesday. I'll be thinking of you!! I'm with you on taking a break. It sure does help clear your mind a little bit.
Jill
0 -
Carol,
You sure sound busy!! Between your rads, dr. appts., and training for the bc 3 day walk, you must not have much free time. I hope to hear regular updates from you though.
Annie-
Welcome back! Glad that you had a good time on your little mini vacation. It helps to get away from everything for awhle. I am glad that you had a chance to re connect with your dh.
So this over-loaded schedule of dr. appts. is also normal?? That is good to know. I also had a trans vaginal us TWO weeks ago, and my dr. NEVER called me with the results, until I called the office, and then they just left a message asking me to call the office. Of course, they didn't call til THURSDAY afternoon, when I was at the pool, and I didn't get back til after the office was closed. I can't help worrying, since I have these uterine fibroid tumors, and even though they are supposed to be benign, now that I've had bc, and now that I'm taking Tamoxifen, I'm worried that they will grow, and that maybe I will be at increased risk for uterine cancer, because of them, and now I am scared, because I am having some issues with bleeding after sex; my solution has been to not have sex with dh, and that is not a very good solution.
I did move my onc appt up to FRIDAY, July 11th, so maybe I'll ask my P.A. about it. I won't see my onc, because they alternate, and I see the onc once a year, and his P.A. six months later. I know if I don't get my test results by then, all she has to do is call, and they will send the report ASAP! It is probably better that I am seeing the P.A., because I can talk with her easier than the onc about these 'intimacy issues'.
Good Luck on Wed., I'll be thinking of you! YEA, it's your LAST tx!! I'll definitely check in and see how you're doing.
Ginny,
No offense. I haven't been posting much, only lurking and reading the posts, trying to keep up with everyone else's progress. I am also staying off the boards in general for awhile. Seems like there are just too many women with mets, and I just can't handle reading about it any more.
Rita,
Hope you are had a very happy Fourth of July! I know you must be busy, golfing. I am not on the Boards as much these days, and I'm not posting as much, but when I can, I do lurk, and read, so I can keep up with all your news!
Hope everyone has a great week!
Harley
0
