Anyone starting Chemo in August 07?
Comments
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Kimmie,
It's great to hear from you. I am so sorry that you are going through this, but to echo the other girls, you really are doing a great job. It must be overwhelming to figure which way to go. Thank God we have Nash and Kaye to educate us. I wish I could be more helpful in that way...but if I can help you in any other way please do not hesitate to ask. My prayer are alway with you and your family. And I look forward to your picture.
Lot of hug, Jackie
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Hi Ladies,
June-of-the-nine-tails....Hallo! Good to hear from you. Keep me posted on the "retirement-rejects" list. Dh and I have started thinking along those lines.
We're thinking Central California.
Or Nash's couch.
Hey, btw, anyone who had rads... is the affected area still really warm for you? I was prepared for the "tan" to last forever, but for goodness sakes, it's been 5 months and Left Breast is still REALLY warm...like when the other one is ice cold (good air conditioning at work and home) the affected one is HOT.
Just wondering.
hugs, hugs and more hugs to everyone...
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Hi, June! Glad you checked in!
Kaye, you're welcome to check out my couch when you come down next week for lunch and see if it's suitable.
And I hadn't noticed until you mentioned it, but my radiated boob is indeed hotter than its friend. How weird. Of course, we always knew we had hot boobs (goes w/o saying), but still. Makes you wonder if we're still being cooked from the radiation.
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"Radiated boob is indeed hotter than its friend."
Thats pretty nice that they're on good terms... Mine aren't even speaking to each other any more.
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Well, that's probably b/c the non-radiated boob resents all the attention the other boob is getting, don't you think?
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Wow! I can't believe I let so much time get away from me before checking in with everyone. Can you tell that it is finally nice outside here in Minnesota?
Kimmie. First - yay on having some hair for the first time in a year! Maybe it will be a sign of new good things to come. I can imagine how difficult it must be to wait and not know what direction to go in, but I hope Nash's info was helpful. (Nash, honey, I don't know how you manage to know so much, but I'm glad we've got you on our side!) Maybe you can get some answers from the BRCA testing or that they can figure out some different protocols for you that work. I think about you so often and send out healing vibrations to you every day. I will work on making them bigger!
June, oh the idea of retirement, even semi, sounds so perfectly nice. I used to think that my job was oh so important and that work would just die without me. I don't think that anymore. I guess that is one good thing that came out of this last year. I figured out what was really important! Not work!
Jackie- glad to hear that you are recovering well, and that you have a new stylish do. I totally burst out laughing at the church-lady part and kept picturing Dana Carvey from Saturday Night Live, but with a chemo haircut. Too funny.
Kaye - I do not have a hot boob. But the one that got radiated was fakola, so maybe that is why. I do, however, have a little pain in the chest both on my fake boob side, and a little pain in the other one. Both in kind of the same place. I've heard of other people with rads having some inter-rib pain that affected both sides. That is kind of where it feels like it is coming from. I wonder too if the tightness in my muscle from the implant affects the whole chest somehow. I do get my new implant on May 30th, so maybe everything will sort itself out once my flexi-boob is gone.
Lilith - When do you have your surgery?
DeAnn
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Well, I have to say that everything I learned about bc, I learned from other people, the internet and practical experience. My mom was on active treatment for five and a half years, over the course of which she was on every drug available. When she was first diagnosed, I started reading www.her2support.org on a daily basis, and the people over there are incredibly knowledgable. Then when I was diagnosed, I started coming here, and learned even more.
I really think it is important to stay on top of things, b/c the oncs don't keep up on things the way one would think. On more than one occasion I brought info to more than one onc before s/he was aware of it (HER2 serum testing and the release of Ixempra). I also learned to read the same publications (Oncology Today and Breast Cancer Update) and pay attention to the same conferences (San Antonio Symposium) that the oncs rely on for info. I find it easier to ask questions and get good answers if I know what info the oncs have.
Plus, I like to research. Both my parents were PhDs--my dad was a history professor and my mom had a PhD in Library Science--so digging around for info is just what I enjoy.
I figure my family has gone through cancer hell for some reason--maybe it's so I can help other people with what I've learned along the way.
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And you do, Nash - everytime. And we're really grateful.
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Wow, Nash... that is quite a few reasons that definitely explain your knowledge. That, plus your interest, your intelligence and your warm heart!
On a different note. I got back the results of the genetic test... I am a mutant. haha. I carry the BRCA2 gene (and probably, so does my mom). I am almost relieved: that gives me a reason for all this ordeal, something I can point at; and by going in for my bilat is the best decision EVER. I might later on (actually, I probably will) take out also the ovaries...
DeAnn, thanks for asking - I'll go to the hospital the 1st, operation the 2nd of June at 8h!!! I'll take a laptop with me, for entertainment purposes... so that I'll be able to have some fun.
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Lilith--that sucks about the BRCA2, but you're right--in a way it's good b/c it gives you a concrete reason for the bc. Definately a wise decision on the bilats. I was told ovaries out for sure had my BRCA come back positive--I"ll be they recommend that for you, too.
Out of curiousity, did your family history and ethnic background suggest that you would be BRCA+, or did it come as a surprise to the genetic counselor? Like I said before, on paper, I look like I'd be BRCA+, but came back negative (although my dad could've been a carrier, and I lucked out on the 50% of not being a carrier. But we'll never know).
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Hi Everyone,
I am soooo happy today. I got the OK from my oncologist that I can have my port taken out when I go in for my implant revision next week. It has just become such a bother to me now that the weather is warmer and I don't have layers of sweaters padding it. Even though I still have Herceptin, I decided I would rather live with a few moments of discomfort here and there for infusions, than having to live with daily annoyance and frustration. My port sticks out almost half an inch and I'm constantly worried about the little buttons poking through my skin. So, bye-bye port. You served me well for when I needed you, but it's your time to go!
DeAnn
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DeAnn, I am really glad for you and the port... it also means that it is getting to an end!! so now, summer can truly start huh? you know, I feel we should all be entitled to a twice-as-good, twice-as-fun summer this year, given how much last one sucked...
Nash. It didn't really come as a surprise. My mom had a very early onset of cancer (at 34 yrs old), and even for me it is early. Also, mom's lineage is from jewish stock, part ashkenazi and part sefarade. there is very little family history known before my mom (mostly boys in the previous generation, and before *ahem* well, it was camp times). It sucks that I am just jewish 'nuf for the illness, not for the Rotschilds' money...
The genetic oncologist was tickled pink when I told him that the bilat is already planned for next monday... he really SMILED (you know oncologists...) As for the ovaries, yes, it is suggested. Being BRCA2 and not 1, it isn't URGENT, but probably still a good idea. In particular, as I haven't got a chance in hell to get more kids given 1.age and 2. chemopause, tamoxifen and menopause... it is a laparascopy and done deal. The consequences of that finding are on my daughter and on my sister (I've already called her, and told her to go for a genetic test).
I don't like being at risk for all the other cancers - colon, melanoma... colon in particular, as having (lucky me) a ulcerative colitis puts me already at increased risk. I am planning a colonoscopy in September ... last one was 5 yrs ago, and perfect, and I have been feeling well since. Lets hope all is clear from that *side* also.
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Lilith, LOL about the Rotschilds' money! Thanks for sharing your background. My dad was a Ashkenazi Jew who died of pancreatic cancer (often BRCA2), so it's highly likely he was BRCA+. That side of the family is very small, and there aren't very many women. They did the "fleeing the Nazis" routine also, with some in camps, so like your case, it's hard to get a good background picture.
I didn't realize your mom was so young when diagnosed. Wow.
That's good that you're getting a colonoscopy this year. And yes, it blows to be at higher risk for other cancers, for sure. I read somewhere that my risk of pancreatic cancer is 27x normal b/c of my dad, or something like that, which sucks b/c it's one of those cancers that it's impossible to screen for and very difficult to diagnose until it's widespread. Sort of like ovarian.
On that cheery note, I hope everyone has a good weekend!
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And congrats on the port coming out, DeAnn!
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Nash... sucks about your dad. Sorry to learn that.
One note: if I understand correctly, you are not BRCA+; so in fact, you may not be at such high risk, you probably have not inherited this mutation... (I like positivity).
I "can't wait" for the colonoscopy, after that clear I'll feel like I have a new lease on life.
I saw my doc today (had the herceptin infusion, and she always comes in to say hi and see how I am doing), and she says that for the ovariectomy we could do it at the end of the year, at the same time as the port removal....
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Lilith, thanks. With my dad's pancreatic cancer, the increased risk for me on that is there whether his cancer was BRCA driven or not. Doesn't that blow? And yes, I did test negative for BRCA, but I had one onc tell me that I probably have some BRCA mutation that they just haven't identified yet. He said I should get retested as soon as they discover another mutation. Ah, something to look forward to.
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Hi gals,
DeAnn I remember the freedom when
I had my port removed the first time!! Hurray!!!! Congrads.
June Retire and Enjoy! I plan to do that as soon as I can. I have a company interested in buying my company but I dont think there offer will be enough. Maybe next time.
I havent been on here as often as Id like but I still hangin.
My follow up is schedualed for 6/4 now. The blood results are suppossed to be in then to. I dont know what to wish for. I can feel my Liver, its slightly swollen and tender. Pain is under control with Darvocet.
If Im not BRCA positive Im going back on some form of Chemo ASAP.
Well gotta go,
Hugs
Kim
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So glad you checked in, Kim. I was thinking about you this afternoon, around the time that you posted. That's happened before--your vibe is making it all the way over here on the West Coast!
I'm glad that you'll have the BRCA results next week. I don't like that you can feel your liver on the outside. Tell Dr. C to put his thinking cap on. I know of many women who have had great results with Xeloda for liver mets. And don't forget to ask him about the Avastin.
<<<<HUGS, HUGS, HUGS>>>>
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Hi Ladies,
Kim...great to hear from you and your always positive attitude. Please keep us posted.
DeAnn....good luck and congrats on your port removal.
Hope everyone else is doing okay. All is well here. I finally got my stitches out and feel so much better. I went to the oncologist yesterday and she said I don't have to see her for 4 months. At first I was so excited but as the day went on I started to panic. Does anyone feel that way? 4 months seems so long. I still have to have colonoscopy, endoscopy and BRCA test, but I guess she was my cushion. Am I acting like a baby? I feel like one. LOL.
Hugs to all, Jackie
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Ladies,
I forgot. I tried to post 3x last week but it wouldn't go through. Please, please think about retiring to New Jersey. Old Bridge, New Jersey....located 45 minutes from exciting Manhattan (I grew up there and can take you anywhere you'd like to go!!!)....30 minutes from the beautiful Jersey Shore....2 hours from Atlantic City and you'd live near me!!! I like to have parties and go to parties...my friends and I have parties for everything!!! Academy Awards parties(where we get dressed up), American Idol parties and tonight we are having a Mother's Day dinner where we celebrate each other(let's face it...sometimes you have to give yourself a pat on the back!!)
Think about it....we don't have earthquakes, mudslides, massive brush fires....we just have sunshine, rain, snow and beautiful foliage in the fall. I hope you're sold!!!
Hugs, Jackie
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Jackie... I'd join you in a flash - sadly, I have many years to go before retirement!!! shoot. 20 and then some... but NJ sounds really nice.
I am loosing my lashes - again. I'd be really worried if I didn't know it is normal... and also, I have already the new ones growing, so it ain't a completely bare look... wierd looking yes, but I see the future there.
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Just enough time to say 'hi' to my gals here. I am thinking of all of you often and glad that we don't post as much since we are all doing the things that life has led us to. Working, kids, continuing the fight, etc.
Kimmie- you are doing awesome! And even keeping it all together. You are such a fighter. I send you lots of love!
DeAnn-- Congrats on getting the port out. I actually mentioned at the surgeon's office about getting mine out in Aug when I am done with Herceptin. The nurse looked at me like I had 2 heads-- "why are you in such a rush for that?" she said. She thought I would want to leave it in for a while or something. In my brain I was like... 'why? Do you know something I don't?!?"
Anyway, I am leaving work late... again. So I will sign off and hopefully catch you all later. To the idol Fans (Jackie...)-- Hooray David Cook! Yes... I downloaded almost all of his iTunes. I am a dork. And my stupid DVR cut off the freakin- announcement! What on earth would I have done without You Tube coming to my rescue to show me who won?!? Frustrating (that happened last year too!!). Stinkin Seacrest!! Move the show along!!
And to the Losties (Kaye...) Season finale! Season Finale!! I am sure I won't be able to stay up for it either. DVR better work on this one!!!!
love to all!! Ang
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Hmmm, no natural disasters....lots of parties....sounds good to me, Jackie! Oh, and the freaking out feeling that one is seeing the onc less is normal. It's a safety net. You are totally not acting like a baby--I think everyone goes through that. Glad you got the stitches out and are feeling well.
Lilith--hope your lashes stop the revolving door routine soon!
Hi, Angie! Glad you checked in! Ignore the stupid nurse who made you feel silly for wanting to get your port out. I'm sure she didn't mean that you'd need it again b/c of recurrence--she probably was just not thinking.
Kaye and I are going to lunch on Saturday with the local lunch ladies. I'm so excited!
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Jackie - New Jersey, eh?......What was wrong with the old Jersey? And really, what's wrong with living in the land of moving/burning earth? It's what we do, duh.
Jackie...NO ONE retires to NEW JERSEY, do they? Isn't it cold in the winter? Hmnnnnn. Cold = no hot flashes....ok. we can talk.
I know what you mean about the every 4 months onc appointment schedule. I feel the same way, and because I feel that way, therefore YOU ARE PERFECTLY NORMAL. ("I am, therefore I stress...come join me.") I don't mind that so much...I just want a CAT scan or an MRI once a month! I suppose it's always going to be there - the underlying anxiety, the concern in the back of our minds - let's face it - things will be different now. All the more reason to really live wisely, and thoughtfully. And take nothing for granted. We've been given a gift, really, when you stop to think about it. Anytime you get a wake-up call, and it's not really "time to wake-up" yet...it's a gift of time.
Hooray on the port removal, girls! I can imagine how freeing that must be. It's like you're getting farther and farther away from treatment, isn't it?
Kimmie - how low would be too low of an offer for the business? It seems just being able to get out from under it right now might be worth it. I know you have a LOT on your mind. (very warm hug to you, girl)
Sorry about those lashes, Lilith. My brows went a second time, but the lashes remained. Unfortunately, my brows never really came back as thick as they were before. It's ok. It's probably because I mocked them mercilessly the first time.
Angie - season finale losties, lol! - you got it girlfriend. toNIGHT is the NIGHT.
DeAnn - would you email me the list of things you throw in a blender for breakfast, again? I'm thinking i need to eat more green, less meat, and therefore you are my new-guru. (not to be confused with a gnu-guru. They are just animals.)
Everyone else - love, big hugs, a few eyelashes, and NASHIE- I'LL SEE YOU SATURDAY! (boy, i wish you guys could all come...! SOMEday we'll get together!)
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Hello Ladies,
I got my new implant this morning and my port removed!! Feeling pretty good if a tad loopy from the Darvocet. I am LOVING having no port (I so hated that little tube than ran up to my neck), and I can already feel the difference with no boob in the armpit. I'm pretty sure I can no longer can perform boob-flexing tricks, and that is awesome!
Loved Lost last night, but alas, always more questions than answers! For those of you into the show, how much do you love the character of Ben? Yes he is totally awful sometimes, but the guy who plays him is such a fabulous actor and he has the best one-liners. "Yes, John. We are talking about time traveling bunnies."
Kaye, I will PM you with some green smoothie details. I'm actually craving one right now and will have to go see what I've got in the fridge to make one!
DeAnn
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DeAnn,
I'm so happy for you. Each step we take makes us feel better and stronger. I'm happy you got rid of the port. So what if you can't flex your boob....no circus jobs for you
LOL!!! Hang in there. Enjoy the loopiness....reality sets in much too quick.Have a great weekend.
Hugs, Jackie
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Hi
Guess what I turned 40 this week ,YEA
Im going to see Dr C on tues 6/4
Comes to find out my insurance denided my clinicle trialand it will take about 40 days to get that straightened out.Im not willing to wait 30 days with so mnay stan ard theripies out there still and I Can feel myself dec;ining.
Antone tried reikey? I did for the firdt time and its making a believer out of me,
Love ya all
hugs kim
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Kimmie, I don't know what to say. Nash may have some smart advice about how to face the insurance... I can't believe they deny it!!! you have been through so much, and now that. Reiki? I don't know. I don't have any experience with that... but I would suggest that if you want to consider it, you consider it along with traditional treatments, not on its own... maybe it can be useful to ease the side effects of other treatments.
I'll be thinking of you. Please keep fighting. You have been so brave, and you have to keep it up. All of us are rooting for you here.
A big hug. Chiara
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HAPPY BIRTHDAY, KIMMIE!!!!!
40 was a good age for me. Use it wisely.
Re the insurance: Is there someone you can ask for assistance maneuvering through the insurance quagmire? Sometimes they have a rep (sometimes it's the one who sold it to you.) who might be able to help. There might even be someone on this board (different thread) who would be able to help because they do that for a living and they just happened to get bc too... I will pray that someone surfaces for you.
DeAnn - thanks for the smoothie info. You ARE the Smooth-Operator. I'll be heading off to the store for green stuff. (The green stuff in my 'fridge used to be of the animal variety...abandoned too long, and now evolved into another life form....maybe plant? Inedible in any event.)
Angie - I heard yesterday of someone else mentioning at the doctors office about having her port removed, and all the medical personnel around her hesitating. It does make you wonder if they know something you don't know. Although I don't think that's the case, really. I just think it's a big thing putting it in, so it must be a big thing removing it, and everyone (except the port-bearer) wants to be reeeeeeeal slow about removing it so that it doesn't need to be put in again. By chance, this gal had had to have another surgery (unrelated to bc) and it was really handy (her words) for that. I hope that's NOT the case with you, and you just get it outta there.
Well ladies, with the horrible year we all had - and Nash losing her mom - i'm here to tell you that she looks none the worse for wear. We all had a great time at lunch yesterday, and each of your names came up with a great deal of wistfulness - someday we are all going to get together!
I HAVE SPOKEN.
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This time, ladies, I am writing from my hospital bed. Tomorrow is the big day, the day I get new boobs (or should I say, foobs!!). Just got the PS in, and she drew the new boobs on me (so now I am all covered with black marks), tomorrow morning I'll just wake up to go back to sleep... guess it will be my turn to be loopy.
As for the port... hmm. I guess I am torn, actually I don't mind keeping it. Unlike DeAnn, mine cannot be seen... and it doesn't bother me, with my veins being totally uncatcheable (they really play hide-and-seek with the needles, and I can't tell you the pleasure...) I am sure I'll postpone taking it out as much as possible...
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