Chemo Starting Sep 09
Comments
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Dear Neece,
Happy Birth Day! I had mine on the 10th. Celebrated at home with cake which we do each year.
Dear RonnieKay,
Thanks for sharing. The radiation oncologist at Sloan did not mention brachytherapy other than in passing. She offered me the option to get the Standard Radiation (total 50 Gy given over 25 days + Boost OR Canadian Fraction (total 42 Gy given over 16 days) + Boost. Apparently the 12 year results from the Canadian study indicate that the efficacy and risk are identical to standard therapy. I did not discuss brachy. A medical oncologist I saw before had said to me that she'd not recommend brachy for me. It may have been because I'm A cup and the scars would be more prominent than for someone with C or D cup? Could you please share your experience with some more detail? I'll be working from home during radiation, have 5-6 facilities nearby including Sloan and don't have to finish the treatment faster so I may not have the same factors at play.
Re: radiation toxicity to heart and lungs I heard that the face down position reduces the exposure to organs drastically and is the preferred position unless you need radiation to supraclavicular area.
I would be getting 4 biweekly AC followed by 12 weekly T infusions and have already done 2 AC's.
Dear Toni,
Thinking of you too.
Dear Amyooo,
Never heard of someone so excited about OOPH but I hear you and agree that 1 OT visit isbetter than 2. Good luck!
Dear All,
Good luck for this week's infusions... LOVE and HUGS to all.
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Hello Thrivers!!
I have a question for those of us not wearing wigs. I am wearing hats and wraps and my ears are killing me. I was wondering if my ears are just sensitive or this is happening to anyone else.
BarbAnne- I just love the hair color thing. A sale and a coupon. You go girl!
Vickilynn- Thanks for the pep talk
Neece & Melinda- You are both so talented with words. Thank you for sharing your talent with us.
To all my sisters have a Tigger day!! Hopefully going through today with a bounce in our step!
THINK POSITIVE
chat with you soon
Catherine
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Girls, listen up. I've spent all day (yea, I've shirked off doing work for this) looking for proof to back up my liver idea (why poo turns white) and I've found some interesting information that probably affects us all even if you don't have white poo. Increased abdominal swelling and pain are a sign of liver damage. DISCUSS THIS WITH YOUR ONC IF YOU SEE YOURSELF IN THIS ARTICLE!!!
go to side effect section and look for liver dysfunction and liver problems. I'd post the link but I'm too chemotarded to figure out how.
Thanks for your time. Resume le frivolity
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Hi ladies,
I am a two year survivor now and I came to this site with so many questions but still visit just to see how BC is effecting everyone... you guys have had some great discussions on this forum here.... you all ROCK!!! I am here if anyone has any questions about something I have have went through. I started with a right breast mastectomy and 16 lymphnodes removed, three positive. I then went through 4 rounds of A/C then 4 rounds of Taxol..... oh lord the side effects.... I had a lot of them but nothing I couldnt get through, Taxol was much harder on the body... I am now on Tamox for 5 years and it sucks but I take it everyday and never forget... once my Onc told me how much is reduces your reoccurance % I swear by the damn thing..
I am now 1/2 way done with breast reconstruction.... waited one year after then it has taken this long to fill the expander... no hurry doc says then I will have my perm one put in on 1/7/10 after the holiday.. what a process... I an using the expander way of reconstruction!!
Anyways, I wish you all a speedy recovery towards survivorship... take care all of you and let me know if you have any questions...
Kate......
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Thanks Kate.....love the name btw. Named my 19 yr old Katie Elizabeth. I refer to her as Doink mostly, but some people still call her Kate
Catherine, as a biker chic, I can tell you.....you are wrapping your head scarves too tightly against your ears my love. Loosen them up a little so that your ears aren't pushed back towards your head. This should help some......but not totally...especially if you look like me (a voltswagon with both doors open). Good luck!
Who ever said I was too young to be a Granny? YOU ARE RIGHT! I married an older man who already had children. MY girls better not make me a Granny again for several more years. I've already told Kate's boyfriend I'd slit his bag and run his leg through it if he knocked her up before she graduates college. He's afraid of me now.......I can't figure out why.
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Hello SOSisters...I'm back. Crashed on Tuesday, been couch, bed, bathroom, couch, bed, bathroom and so it goes.... apparently this is going to be the way it is on days 5 & 6 for me. I would have ask you to join my pitty party but didn't feel up to typing...
Catherine-my onc nurse said that if you were going to have se's with the taxotere it would be with txt 1 or 2. I hope you are doing well now. My ears have also been hurting and I'm going to take Pamelajo's suggestion and not tie this thing so tight. Just afraid I'll lost it somewhere!
DomeGal - glad to hear you are feeling better.
Melinda - so happy you only have one more chemo to go! I loved your SOS poem, you are so very talented! It most go on the blog and in Vickilynn's book.
BarbAnne41- How are you doing? I love the idea of you and Pamelajo having reset buttons. I want one, need one!
Barbt0323 - almost Friday and you will have made it through the week. You go girl!
Pamelajo - I bet you are the most fun grandma! How's that tree coming along? I hope you are having a good week at work. Haven't visited the website yet, but headed that way shortly.
Vickilynn - I also had an annoying man sitting next to me on Tues. Just would not shut up, we all heard his life history several times. I pretended to nap.
ChinaBlue - I so love your attitude, dinner for 20+. Got extra room for those of us who will enjoy our "bad week" during Thanksgiving?
Toni - I also missed the "Winne the Poo" train. I got on the one with Dr. Suess. How did the bbq go?
Flacracker - so glad you are feeling better. Isn't it great when we come out of the slump? You definitely need to add your haircolor story to the book.
Neece - is this the same woman who said the words wouldn't flow? Your words are so lovely! You keep writing - you and Melinda must be in Vickilynn's book!
Amy - hope you are doing well and having a good week.
RonnieKay - bald is beautiful and so are you! I'll be thinking of you tomorrow and praying for no side effects! I have to do four more treatments and Herceptin for one calendar year.
Onty - Happy Belated Birthday! How are you doing? Hope you are able to get all the info you need on your radiation.
Kate0574 - welcome and thanks for sharing. We will take all the information we can get!
Hope all of you are having great day. Thoughts and prayers are with you!
Jane
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Pamelajo....you are so funny!!!!!!
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Oh Girls...I'm LOL...taking my computer to treatment tomorrow to write to you all...this way I'll be keeping very quiet so no one writes about how loud that lady is in treatment...that would be ME! My 2nd visit - week #2 for Herceptin - the chemo nurse came in and asked me to please keep it down. Pretty much from then on...I've had an enclosed room
Until tomorrow.....HAPPY BIRTHDAY DEAR, SWEET ONTY!!!!
PAMELAJO....I SECOND AMY'S POST.....LOL!!!
ps...decadron at work
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Anyone on taxol yet? If so, how does it compare to A/C?
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Hello Ladies
Pamelajo-Thanks I'll loosen them up.
Not much to report taday. All is Quiet
Wanted to wish everyone a nice peaceful weekend
THINK POSITIVE
chat with you soon
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Experiencing my typical after tx days... SIGH
I am not through with chemo - I finished round 1 only of A/C. Novemer 3 I start Round 2 of Taxol weekly for 12 weeks. the Dr. said Taxol will be easier, but I'm tending to question her assessment these days.
Thank you Pamela for the heads up on liver problems. Hope you had yours checked out.
that''s all my chemo brain can handle today. Love you all. Keep on, keeping on!
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Hey Ladies-
I just wanted to check in and say riding very low today. I only made it through 3 hours of work and had to come home to sleep. Claritin is working, but my knees still feel a little achy and I have a crazy headache, and I am exhausted. How long will this last? Will I feel semi-normal next week?
VickiLynn-sorry for the post tx stuff-i feel ya girl.
Pamela you are so funny-could the liver thing be because this is technically your second go around with this beast?
Ronnie Kay-you look marvelous!!
Neece beautiful poetry.
Toni, Jane, Melinda, Amy, China, Catherine, Onty, Barb and anyone else you are in my thoughts.
Much love-send me some good vibes-I am sending you some too.
Barbara
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BarbAnne41-I feel for you. I missed one day of work this week and every day that I have been here since has been hell. Finished my 3rd AC last Wed. and for some reason my butt is getting kicked this week even though I really have been handling the chemo so well. I am drained physically and emotionally...luckily for me I work for a small law firm that has been amazing and my boss has repeatedly told me since I returned to work to leave whenever I need to...and I think now is about the right time! Hopefully, we will all feel better for the weekend...sending good health everyone's way. Is the Claritin for body aches, or is it for people who are getting Neulasta? I am receiving straight chemo with only 3 days post-chemo of anti-nausea meds.
Will try to figure out how to post a picture over the weekend...Took one of me with my granddaughter who is 10 months old and has more hair than I do!
Kim
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Whew, I just got caught up since my last post. I had to read 3 full pages and laugh and cry, it was exhausting! You ladies are TOOOOOOO much fun! I have had a super busy, kid crazy week. Two concerts, two parent/teacher conferences, and two marching band competitions. Plus 40ish hours of work. I am not doing that great on the exhaustion/nausea front, but I am keeping my head up and looking forward. I am afraid that my persimmons will have gone bad by the time I can make the cookies. I thought I would bake them on Tuesday, but that was before I had an encounter of the annoying kind with the catalog lady at JCPenney. She was the most OCD person I have ever met, and made picking up 5 pairs of identical shoes (for the girls in the showcase choir to wear with their costumes for the concert that night) take about an hour and a half. I have also been having a strange pain in my left side at the base of my ribs. It hurts like an SOB, and I have no idea what it could be.
Okay enough about me, you are all amazing. I love the poetry, I love the stories, I love the love that we all have for one another. You are all going through so much, and yet you are here caring about one another. I am PMing you Melinda. I really hope that we can start the blog so that it will be another way to share. I think we will all be friends for a long time. I love the term surthrivers. I have also heard the term, "cancer vixen". I think we are fabulous, amazing and fantastic, so maybe when our SOS has moved beyond we can be FAB. I think we will always be September Sisters to each other though.
September's Sisters in a shower of sapphires, joy!
Hugs and Love to all of you, I will keep up on posting more often this weekend and next week. I love you all even though I didn't name names today!
Susan
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Cancer Vixen ; Crazy Sexy Cancer Vixens; Surthrivers:
I LOVE THEM ALL !!
Nobody liked my "Sorry my hair fell out in the breakfast wrap story, huh? I for sure thought you guys would give it a little chuckle seeing as I forgot I had NO hair and was apologizing for dropping it in my cookin....Well, honestly the other womens stories were pretty hard to beat !!
I just want to say I love you all very much. Im very tired today. Had my BBQ and it was great but cant seem to recover from fatigue today......My relatives fly home tomorrow and maybe Ill be able to get my second wind before my next treatment on Oct 27th.
To all w/ treatments this week - Virtual Hugs and minimal SE's - and to all getting better or feeling down and to all feeling great...Virtual hugs and much, much, much, much love !!!
Pamela - So what do you drive ? HaHaHa, I LMAO on that one. YOU DO NOT look like a volkswagon w/ the doors left open...we could really cause some trouble together, you know that right?
Neece - you enjoying another year younger ?
Hello Susan, Catherine, VickiLynn, Barbara, Jane, Melinda, RonnieKay, Amy, Flacracker, China, Onty, Domegirl and Barb
If Nels is still w/ us - Hope you are well !!
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Kate -
Bless your heart for stopping in and asking us how we are, if we had any questions, ect. We are a pretty strong group and we (I) appreciate the caring heart you stopped in with. Congratulations on "Surthriving" you are an inspiration to us all.
Love,
Toni
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Toni: I loved the breakfast story. I can just picture the confusion on your face. Your daughter got you......neener! LOL I'm sorry I didn't comment on it earlier. I've been distracted. I'll tell you all more about it later. I drive a fierce and sexy 2008 Chrysler Sebring, named her Sophie.....and with both her doors open, we resemble eachother
LOOK AT MY EARS DAMMIT!!! Stiff wind and I have to make sure I keep "flaps down". Hair covers them nicely, however, I am a little short on that right now. 
Vicki, Barb, Dome.......I'm so sorry you guys are having a rough time. It's not fun at all, we all know. Makes you wonder how much your body can take, but you guys will be okay, you really will. When you have an Eeyore day, just remember, Tigger days are right around the corner! Woohoohoo. Hang in there.......and know we love you.
I've got news. Got a call from my oncology nurse tonight. My dr has decided that my body cannot tolerate any more chemo. They are concerned with my liver and the neuropathy I am having after only two treatments. Not sure they are going to take me completely off the Cytoxan but I won't get anymore Taxotere. They had discussed changing my chemo completely, but decided I've had too much already and no matter the different drugs they might use, the risk of damage outweighs the benefit I may get from it. Soooooooo, tx3 is on hold now. I go the 29th to discuss my "options". LOL I'm staying positive even if it kills me. This cancer is not coming back. I'm just so confused. I can't demand more chemo .... and I can't stand this feeling of giving up, but what is supposed to cure me is killing me. I don't know what to do.
Anyway, I guess I have to trust my dr. If I don't have that I have nothing. I'm not letting this disease take anymore away from me than it already has. Cancer can have my boobs, my ovaries, my lymphnodes......but it can't have my sense of humor or zest for all things in life. I gotta hang on to that with both my numb hands
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Aww Toni- I am so sorry-yes your story made me laugh. In fact I look forward to not worrying about that anymore-have a teenage daughter who sheds like a dog. Aww sweety I loved your story, it is my exhaustion that made me slow
-forgive me?
Pamela- You poor girl, the sisterhood is with you if you want to vent. Oh my goodness please keep us posted and don't hesitate to PM if you just want to vent and rant. I am sending you as many positive vibes as I can. Love ya
Barb- thanks for the camaraderie, I guess this is my down day.
Susan-you are a super hero.
OK ladies I am going back to my sofa and heating pad while I wait to pick up the teenager.
Hugs Barbara
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((((((((((((Pamela)))))))))))),
From what I understand, a lot of benefit can be had from just 2 treatments, and I am glad they are erring on the side of caution, and not letting you go through any more! You are an amazing woman, and I for one am proud of you. I can hardly wait to meet you in person. You of course will keep posting to entertain, and inform us, right? We need you so much on this thread!
I second Pamela's opinion on your story Toni. I thought it was really funny, and I was just to distracted to say so in my last post. Weirdly, I keep finding hairs on my coats and clothes. Are they other peoples hairs, are they my old hairs that I picked up from my furniture, are they dog hairs? Hmmmmmmmm, this is a mystery that may never be solved. Toni you made me want to feed my family breakfast for dinner! Let's see if I can get a mystery hair in someones food.
Okay, I'll let you know how that goes!
Love and Hugs,
Susan -
Dear Pamela,
Sorry to hear you are having such a rough time with chemo. Please don't give up on it completely. Yes 2 doses have some benefit but there is a reason they stick to 4. You may even want to switch to AC. It can be harder on the stomach and the whole GI tract but does NOT cause neuropathy. The good news is that you also have hormonal therapy to lean on. But sweets please do not just give up on treatment without due thought......
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I wouldn't desert you now if my life depended on it! I need you all too! Once a sister always a sister!
I think I'm just going to calm down and let my hair grow. There really is nothing else I can do. I'll be on that pill (whichever one it is) for 5 years now, and I can begin to grow my foobs. I'm just hoping if there was anything floating around inside me, that the chemo I did take killed it. I don't think anything could survive in me at that point.
You guys are the bestest. I haven't started on our tree yet, but tomorrow I'm building the wire armature for it
It'll be done before all of us finish our tx's. I'll bring it to the reunionOnty, I'm not giving up. I'd take it if they'd give it to me...... my doctor is cutting me off.
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If your doctor is cutting you off from T ask him to switch you to AC. OTOH, if he is cutting you off from chemo completely, time to cut him lose and find another
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Well, I've got a top notch doc, and I know my body is taking a beating this go round. This is the second time Ive taken chemo..... my options were already limited.
I won't know for sure about anything till the 29th. Till then, I just have to believe everything is going to be just cherry
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I have full confidence that you and your doctor will make the correct decision. Your spirit will get you through this even without chemo's help, if need be. My tumor shrunk significantly with only 2 treatments. There are always more drugs out there and even more on the near horizon. I am so glad you are not leaving our blog (I didn't think you would).
I admire you. I can't wait to see the pic with the new hair and foobs!
Love always, Amy
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oops, that was for Pamelajo.............as if ya'll didnt know
I think I'll have to sign as,
Ame (this time)
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Good morning SOSisters...well it's a cold, sunny day in NC and I feel 3/4 human. Been having a time with stomach woes, lost 11 pounds this week, not a weight loss program I'd recommend to anyone but I'm convinced I'm on the up side!
Pamelajo - sent you a PM about your chemo. On the brighter side, I have one spock ear and one dumbo ear, have always had a haircut that covered my ears. Never was much concerned about it till this bald head came along. Oh well, a minor blurp on the road. You hang in there, you are our warrior sister!
RonnieKay-hope you are feeling good w/no se's from your treatment. Did you behave yourself?
Vickilynn - I am not sure the doctors can appreciate how tired we get, my PA describes the fatigue as "profound" I'd have to agree. But as we know "this too shall pass".
BarbAnne41 - You made it all week, you go girl. I have been sitting/laying around for a week. See how strong you are?
Kim - isn't it great to work for a company that is so understanding? It counts for so much!
Susan - you are my hero! Concerts, conferences, band, 40 hr work week. What kind of vitamins are you taking? I need a triple dose! Did you call your doctor about the pain in your side? You need too!
Toni - I'm sorry also, I loved your breakfast story and shared with my husband. I meant to reply, really! Sorry you are tired and can get some rest now that your company is gone!
To all the rest of my sisters, hope you are going to have a great weekend, no side effects, just enjoying life!
Thoughts and prayers to all!
Jane
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Hey my crazy, sexy, cancer, vixen, thriver SOS sisters:
I knew if I whined loud and clear I would get you sweet girls to comment on my story.....geeeesh....I felt so left out.
Barbara - I will be thinking of you all day today. I have taxotere and cytoxen 4 times. 2 treatments down, 2 to go. Then 5 years of hormone supressor. My treatment is not as long as yours. If you want to whine and cry and yell do it honey. You dont always have to keep saying "oh well, we can do it" We can but sometimes we sure as hell dont feel like it. SO LET IT OUT. I can hear it inside you !!! Love you.
Pamela - You have been through so very much that the path will be lit for you. You know that right? You are the brightest, biggest star on this thread and in my heart. You, your onc and all the goodness and sacredness inside you will find your way.....I love you so much.
Everyone have a wonderful day. Taking relatives to the airport today !!! Its been fun but its time to go
Love you guys
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Hey All,
I am nervous and need your help. I have to see my onc on Thur before my tx. I haven't seen her since Aug 5th, and she was some what difficult at that visit. She hadn't looked at my chart before I was in the exam room. She didn't like that I had, had immediate reconstruction. She sent me to a radiation onc for a 3mm margin, (which the rad onc had no problem with). Her nurses and staff have told me on numerous occasions that she will call me and she never has. The last time I was in the nurse commented that it is really unusual for her to not see her own patients. I wonder if she doesn't like me, which is ridiculous, because I don't even think she knows who I am. I found her to be intimidating, and I have a lot of questions, but I am afraid to ask them. I am afraid she will make me feel stupid. I'm not sure if she will complain about my reconstructed breasts (which look awesome, and I am happy with) again. She feels that they are in the way of further diagnosis. I don't know. I only saw surgeons before my surgery, and they were all for doing the reconstruction of course. They never even let me see an oncologist. I would like for her to give me a copy of my pathology report, and the report from my oncotype. I know I am going to have to pull up my big girl pants and ask my questions, and ask for the reports. It's just that right now I have a huge knot in the pit of my stomach anticipating seeing her next week, and it is making it hard for me to even think of what questions to ask. I know I have thought of questions as I've gone through this, but now I can't even think what they are. If any of you have suggestions of questions I should ask I would appreciate your letting me know what they are.
I just needed to vent, and I know you will all give me some encouragement. Thank you for letting me come here and ask for the support I need. I love you all so much!!!!!
Love and Hugs,
Susan
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Dear Susan,
Absolutely! Go ahead and ask her for your reports. Be firm. If she gives you a hard time or does not see you at least once a month or if you still don't like her, look for another oncologist. There are many with excellent reputations and you will find one with whom the chemistry will be right. You are important. Don't let this nonsense go on.
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Pamela-I agree with Amy and Toni it has been a long hard road and you are one really brave soul, as strong as I am I am not sure I could have done all you have done. I really believe the right way will happen and I am glad you trust in your onc. We are here for you-love and trust baby.
Toni- Thank you so very much. I actually had a few minutes to myself this morning and cried. It made this terrible headache feel a little better. I am always the go to strong one and I really feel like I am held together my duct tape just to act "normal" around the family. Then my fear sets in that all 5 months I will feel that way and I know it is irrational, but you know how fear is. Thanks for letting me whine. Love ya and thanks for thinking of me., I am thinking of you too.
Jane- I am so glad you are up and around, but 11 pounds holy cow. Is it hard to eat? Or just hard to keep it "in" if ya know what I mean. You take care
Susan- Oh gosh I know when I went to talk to my onc he seemed very intimidating to me at first and I played a little game with myself to get myself to ask what I wanted. Don't laugh, but I pretended I had to be the strong advocate one for myself and I envisioned myself the patient as helpless, and that I needed to make everything go right. It sounds crazy and It can be a bit of a mental jump but once you really envision yourself as an advocate for the "patient" part of you-- you sometimes feel empowered. It really got me through to a point where I was not only happy with my onc but had built some trust, he is very good, just a really serious guy. I also found typing out my questions helped. I also asked other people what they would ask, and if they asked me the question and I already knew the answer, then I scratched if off my list. It can help to have a typed list, then you can look down and say first I want a copy of my path reports. second I am curious why you haven't seen me as patient in X amount of days? Are there other doctors in the same practice? maybe you would be more comfortable with me seeing them? etc.. Don't stress Susan, take deep breaths and think positive about what you want to happen. It will all be OK. I am sending you all the positivity I can muster.
Lots of hugs for all my September Sisters-
Barbara
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