Anyone starting Chemo in August 07?

katoMato · May 2008

Precious Kimmie - I'm so glad you checked in. We do love you, and we want to hear it all.

Why are you going to your appointments alone? Do you have anyone who is able to go with you, but they just aren't aware of your situation?

If you have no one, would you like me to meet you in Texas?

I'm offering and I will go in a heartbeat.

wackyjackie · May 2008

Kimmie,

Sweet Kimmie....it's great to hear from you. Please don't hold back. As the other girls said, we are in this together..good, bad, crazy, silly or otherwise!! We do want to hear it all.

I'm so sorry you have been going to your appointments alone. If I were you I would take Kaye up on her offer. I know she really means it from the bottom of her heart and she'd be the perfect person (aside from Dr. Nash!) to accompany you.

My thoughts and prayers are with you. And please keep dreaming of the Bahamas because you are very much alive and will get there someday!!!

Lots and lots of hugs and prayers, Jackie

lilith · May 2008

Kimmie, I am thrilled to hear from you - and saddened by your news. It must be tough - tough because it is physically taxing, tough because it lasts so long. and also tough to see all moving on, and you still fighting.

But it is true, this is the battle of your life, for your life. I think of you regularly, and send you all the best vibes I can muster, plus virtual hugs! Hopefully, someone can help you in this, and can come at least at some of your treatments.

Kaye... I am in software... bingo. Not in entertainement, sadly - that would be probably more fun! anyway, NY is for business, and California with my boyfriend (he is from there). I shall apply myself and avoid any business related interference... unless someone offers me a great new job. I am just about ready to drop all here, and move over.

Wednesday I'll see my Plastic Surgeon, in preparation for the June operation... will let you know how it goes (should be non-eventful...).

Hugs, especially to Kimmie.

lilith · May 2008

Oh, yeah: my hair keeps growning, but it aint curlier than before. It is also quite dark, only a sprinkling of white in front - perhaps 10 hair??? my grandma died at 85 with a full black head, so maybe that is where it comes from.

BUT, I am wondering: now that I'll have silicon boobs, maybe I should go blonde, to be finally a SILICON BLONDE.... what do you gals think??? the boyfriend seems skeptical... )

kimmie39 · May 2008

THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU

The pain is decreasing in intensity and Im looking forwards to seeing Dr C next week ( Although I still think its to far away, I wana do something NOW)

My nodes are visabley swollen.

Id like to ask your collective help, ever heard of a gamma knife ? whats that? is it better?

Hugs in Va

Kim

kimmie39 · May 2008

P S.

I have been going to my oncology and chemo appointments alone here in Va. Everyone is so busy and as long as it didnt make me incapable of driving I didnt want to bother them. I dont think much about myself and whats best for me. Guess thats something Im gonna need to work on.

I love you guys.

Kim

Harley44 · May 2008

Kimmie,

I'm thinking about you, and praying that your chemo can shrink your nodes... Who is Dr. C? Is he your THIRD specialist?

Oh, Kimmie, you should NOT have to drive yourself to CHEMO!!! I wish I lived near you, so I could take you!! I went by myself to a lot of my dr. appts, because my dh was still working in Washington DC.

HUGS

Harley

nash · May 2008

Kim, gamma knife is like a laser, except it uses radiation. They use it to "zap" lesions, usually on the brain or liver. Where are they suggesting gamma knifing you? The painful spots on the bones? It's a great procedure and can yield excellent results.

Honestly, if I could leap on a plane and fly to VA to take care of you, I would. I'm so frustrated that logistically I can't. But I want to encourage you to seriously consider Kaye's offer of flying to TX for your next round at MDA.

DGHoff · May 2008

Oh sweet Kimmie. I've been thinking about you so much today, and I'm so glad to see that you have posted that your pain is decreasing a little bit. But, any pain is not good, so I hope that Dr. C can get you relief with something. I have heard really positive things about the gamma knife thing. If that is an option for you, I hope that it can do the trick.

You definitely should not have to drive yourself to chemo. Especially since it makes you so sick. I know how hard it is sometimes to ask for help. If you are anything like me you want to seem strong and you don't want to bother anyone with it, but by golly, go ahead and bother people! I don't know if you have a Caring Bridge web page, but if not, you might want to consider starting one. I can only offer my experience, but that site and all of you in my BC.org family really helped me get through some of my worst moments. Most of my family and friends assumed I was fine unless I told them otherwise, and it is very hard to tell people face to face your fears and problems. The Caring Bridge page allowed me an outlet to reveal what was truly happening in body and spirit. Even though I tried to keep a positive spin on all my posts, I still laid out the situation as it was. It allowed my friends and family to know the truth even though if they saw me in person I would probably have told them I was "fine." It helped people to know when we needed a hand at home and what obstacles we were dealing with. The best part, though, is that it provides a place for people to give you messages of support. Those little comments really do make a difference when you are having a rough day.

Much love and Hugs to you, Kim!

DeAnn

kimmie39 · May 2008

Hi

Harley - Dr. C. is the specialist at MD Anderson. His name is something like Christofanelli ??? So I call him Dr. C. Laughing Thanks for thinking of me.

Nash - No Im not having any pain in the bones these days Smile . My uncle (once removed I think is how it goes) was recently diagnosed with Lung Cancer and his daughter is investigating it. She was wondering if it would be beneficial for me. I'd never heard of it. But I do have a lesion on my liver as of last pet scan ( about a month ago).

How about a magic wand? Im beginning to think I may really need one.

Also any information you guys can find on discount flights. My last organization cant do it right now. Everyone is suffering with the fuel prices.

DeAnn - I feel the EXACT same way. Im gonna look for a site like that so I can get the communication flowing a bit better here. I also get alot of "Let me know if I can help" as an ending to a conversation. I always say oh Im OK. Truth is Im to weak sometimes to wash my kids hair at night. It amazes me how much more difficult things are when your sick for an extended period of time. By the way my moms been coming over pretty regularly and giving the kids a bath including hair.

O K OK OK

Time for some good news!!!!!! I feel really good today!!!!!!HURRAY!!!!!!

I got up at 630 got the kids ready for school went to my office at 900 and came home at 100 and made lunch!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sounds like a normal life huh. Tommorrow is chemo but TODAY Im GREAT.

Love you gals

Kim

nash · May 2008

Kimmie, were you flying on Angel Flight Mid-Atlantic before? If not, let me know and I'll give you their website. If that was who you were flying, I'll try to track down similar organizations and also the cheapest commercial flights for you.

I'm glad that the bone pain has settled down and that you felt good today. Let me know if Dr. C thinks gamma knife (it's also known by the trade name of Cyberknife) is an option for the liver lesion. I personally know a woman from bcmets.org and her2support.org who has recently had several gamma knife procedures done at Stanford, on her brain, bones and liver. I can put you in touch with her if necessary. She's very well educated on the procedure.

katoMato · May 2008

Kim, i'm SO glad you're feeling a little better today. I'm also glad you'll have someone go with you next time. If that doesn't work for whatever reason - the offer is still open.

And everyone else - respectful bow to Dr. Nash, who has once again brought a ray of hope into a dark situation.

(that rustling sound you hear is my hair bouncing off the ground as i bow low from the waist in reverence.)

(waist? WHAT waist?!)

lilith · May 2008

Kim, so glad some days are better. By today, you'll have had next chemo cycle - sending you hugs. It is good to know that normal days are somewhere there - so one can look forward to them!

I've seen my PS yesterday, all is set for my op on the 2nd of June - no biggie though, just a (hopefully little) pain to endure. The doc seems to be very positive on it... and on the bright side, with NO boobs, chances of a returning BC are quite slim. I'll never have another mammo - but of course, regular check ups. And I am seeing tomorrow my gastroenterologist - so that I can plan a colonoscopy (NOT looking forward that one...)

Kaye... waist... ) a figment of imagination much published on fiction magazines.

Hugs to all.

wackyjackie · May 2008

I would like to wish all my beautiful sisters a very Happy Mother's Day. I would never have been able to survive this last year without all of you. You are all special pieces to the crazy puzzle of my life. I thank you all from the bottom of heart. I pray for all of us and all the women on this site to have many, many, many years of health and happiness. I love you ladies.

Hugs and hugs and hugs, Jackie Kiss

nash · May 2008

Thanks, Jackie! Hugs right back at ya. Happy Mother's Day to all.

lilith · May 2008

yes. Happy Mother's Day to all of us. We deserve it. We deserve the flowers, the food, the cheers and the pride for all that we have done and overcome in this last year.

Jackie - thank you for thinking about this.

chemomom · May 2008

Kimmie, I can't even find words to say. Like the other girls said, we love you and are here for you thru it all. Again I don't know what to say-- I just wish I could give to a big hug and let you cry until you felt strong again. Angie

chemomom · May 2008

So gals once again, I have been delinquent in checking in on the boards. Work is crazy. I work in IT at a hospital and we are doing a software upgrade and I have been coordinating the project. So I have been working 11hr days sometimes. Luckily that culminates on Wed. and hopefully things will settle down. i have promised myself and my dh that after this coming week, i will NOT be staying late to work. I want to get home with time to play outside with the kids. Work just isn't my top priority.

Kaye, I have been working out 4-5 times per week (cardio-kickboxing!!) for 2 months and I have lost maybe 2 pounds. Yes-- it is discouraging. But like you, I do find I feel better, so I try to force myself to do it. And it is nice to have ENERGY AGAIN!!!!! Deann, since you are losing too much weight and I have plenty to give, maybe we could set up a donation. I am here for you, my sister!!

Ok all, I have been guilted into doing my exercise today (I was going to skip since the kids got me up during the night and are now veg-ing in front of SpongeBob). But they can handle a few more cartoons so I can exercise & shower. Then we can all run around together!!! So I shall sign off. Love to you all. And happy mother's day! xo, Angie

DGHoff · May 2008

Hello all, I posted a new avatar with my new do. You will note, Kaye, that the sticking up aspect is now incorporated into the overall hairstyle. As they say, go with the flow!

I gotta tell you about my new kick. I have abandoned the green smoothies in favor of... green lemonade. I am addicted to this stuff. I juice up a lemon, an apple or two, some romaine, some cucumber, some kale, and some ginger. Tastes like, well, like green lemonade I guess. Laughing

Hi Angie! Great to hear from you and learn that things are good for you. Kickboxing! Wow! You go girl! I would gladly accept a little extra weight from my friends, but i suppose I have to go about it the old-fashioned way. I am off to go make some toast smothered in avocado! Did you know one avocado has, like, 350 calories? How something green can have more calories than a bar of chocolate is crazy. So, does that mean that the chocolate is better for me? Wink

Happy Mother's Day weekend to all!

DeAnn

lilith · May 2008

Ohhhh! DeAnn!!! Love the new 'do!!! you look great dear!

Angie: looks like we work in very similar areas... I work on SAP HR projects - for a large corporation... "lucky" for me, the biggest project for us went live during my chemo, so I couldn't follow that. Now that I am back, there is nothing interesting.

nash · May 2008

You look terrific, DeAnn!

Angie, nice to "see" you!

Kim--hope you made it to Houston OK. What did Dr. C have to say?

Jackie--how are you feeling post-op?

How are all the girls we haven't heard from in awhile doing? June? Gma? Harley? I know there's more, but my brain only sort of half functions.

And big ol' smoochies to Kaye.

Hope everyone is having a good week.

katoMato · May 2008

Hello Ladies,

I got caught up in the whole living life thing and next time i sit down here i realize a whole stinkin' WEEK has gone by! Whatth? I couldn't even tell you what i was doing. Running LOTS of silly errands. How is everybody?

We saved a baby roadrunner the day before yesterday. We had some brutal winds around that time, and he fell out of his nest. (Or next-sibling-in-line- gave him a brotherly shove) but he was just a bit too wobbly to get along by himself - so we brought him in, and i finally got him to eat after about 24 hours. It was kinda fun. (They are a bird of prey, and he thought that the hand holding the FOOD was the hand to ATTACK, so he did and by some mistake got some food into his MOUTH and he accidently swallowed it. Each time. So every bite was preceeded by growling, clacking (their "warning" call) furious squawking and attempts to dismember my fingers. We feed the adults all the time. They are really tame. They're probably sick of the crabby kids too. I am SO glad i'm not a mommy roadrunner. I thought MY kids were difficult to feed.) So somewhere in there i remembered that i didn't WANT any more pets. Inside, outside or upside down - so off we went to the Living Desert Reserve where they'll take care of him until he's stronger then call me and I'll go get him and bring him back to the neighborhood (where he'll promptly get eaten by a cat.) Ahhh. The cycle of life.

DeAnn, your hair looks a lot like mine... Every day it's a new adventure, isn't it?!

How was everyone's Mother's Day? I had a blast. Our office manager received some chocolate covered strawberries from her son, so DH says with his inimitatable optimism: "Hey. We could make those." I was backing up slowly, panic rising in my chest, and (in my mind) seeing chocolate covering every vertical surface and every appendage sticking to every horizontal one just before the guests (his mom and brother) were due to arrive but i submitted and we had an ABSOLUTE blast. We made them with white and brown chocolate and used coconut as decoration, and I made little tuxedos with the colors and a toothpick and ..I'm telling you...it is our new Mother's Day tradition. Period. I was feeling a little down in the beginning because my mom's not around, but it occurred to me that it's about SERVING a mother, (it's best when it's your own, but anyone's will do) and BEING WITH your kids. Once i figured THAT out, and had eaten a few of the rejects (chocolate strawberries, not kids) I was on a roll.

I'm telling you - champagne, chocolate and strawberries IS Mother's Day.

I can't WAIT for next year.

Hope everybody's doing well {{hugs}}

wackyjackie · May 2008

Hi Everyone,

I am 3 weeks out from lat flap surgery and I feel really great. Still have lots of fluid in my back area and a little tightness, but I have lots of energy and feel okay. Hopefully, in 3 months I can get the implants and get a good night's sleep without these skin expanders!!!

I probably told you ladies but I don't remember, my daughter is a hairdresser and yesterday she dyed my hair and cut it. It feels so great. Even though it's very short in the front (i look like a cross between an old church lady and a very butchy dyke---no offense anyone!!!) it feels wonderful to have somewhat of a style.

Kaye, those strawberries and champagne sound delicious Tongue out !!! I am really trying to diet and behave. It's not working too well. I just can't seem to lose weight. Oh well, I feel good so I don't care.

I hope everyone is doing okay. Have a great weekend.

Lots of hugs, Jackie

nash · May 2008

Glad to hear that you're recovering well, Jackie! And it is nice to have some semblance of a hairstyle, isn't it? I got mine trimmed last weekend, and I'd never been so excited to have a haircut in my life.

Kaye, your bird story is way better than my bird story. My bird story involves a crow who swooped in and grabbed on of the sparrows who lives a nest on my patio cover. The other sparrows heroically tried to dive bomb the crow, and my husband even went out and tried to get the crow to drop the poor bird, but the crow flew off, clutching its lunch. It was straight out of Wild Kingdom, and sort of depressing. What can I say? There's always drama at our house.

Hope everyone has a good weekend. We're having another heat wave here--bet things are toasty for you, too, Kaye.

katoMato · May 2008

Dearest Jackie Lat-Flap, I've been pondering that "Old Church Lady and Very Butchy Dyke"...and laughing though I am, I just can't wrap my mind around it...But as long as you feel like you look good, babe, THAT'S ALL THAT MATTERS. (Huh, girls?!?) I know what you mean about liking some semblance of a style. I'm waiting. Mine just kinda goes in and out of it's self appointed "style" from day to day. It's like having a wild animal on my head. I just hold on and try to ignore it.

I was told however last Saturday at a wedding that I was beautiful. But OF COURSE she said that. She HAD to say something. I had just told her I was recovering from breast CANCER. What's she going to say: "Too bad. I'm sorry. And by the way, you look like hell"? (sheesh!)

I'm so glad you're feeling well - it's so good to hear. I've been really diligent to run in the morning and it's AMAZING the difference it makes in the achy joints se of Arimidex. (Haven't lost a pound. Did lose a pants size though. Yep. But it's too hot to dance in the streets.) Yeah. And now that it's so "toasty" - you nailed it, Nashie - i'm panicking wondering what I can do. Ever the consumate consumer, Precious DH suggested buying an eliptical machine...iiiiiiiiiii dunno. Maybe I'll re-introduce myself to the treadmill we BOUGHT TWO YEARS AGO (and have ignored, faithfully, ever since.)

So. That is the new plan, man. At least we know exercise WORKS. (Makes me feel better. Gets me back into my clothes...)And for that I'm so grateful.

DeAnn - gotta say...every morning I wake up and think of you - and what you eat for breakfast. iiiiiii dunno. Chard? Romaine? dude. And I wonder (yes, every morning) if i ate chard and romaine every morning would I, TOO, be wondering how i'm going to put pounds on myself? I wonder. (But not vigorously enough to actually do anything about it.) I'm more of a lox and bagel's kinda gal. Or Flax meal when i'm feeling lazy. Dh wants bacon, hash, eggs and....something else. I forget. OH YEAH. A SIDE OF BEEF.

ok gotta go. We've taped Lost, (cuz it's on at stinkin' 10:00 at night - snore - so we tape it and watch it Friday.)

Nash - we have a bird story similar to yours that I won't share here. The joys of being a human are: going to the toaster and making a pop tart. Far less disturbing and violent. I'm very grateful we're at the top of the food chain.

hugs and pats on fuzzy heads to all...(special kiss on the forehead to kimmie....how you doin'?)

kimmie39 · May 2008

HI ALL,

Just checking on you guys. DeAnn Im not sure if Ive told you but your hair is TOTALLY cute!!! Im getting a little stubble. Im enjoying it while I can Its the first kind of hair Ive had in a year. Ive asked my dad to help me get a pic on this site. It helps to see who your talking to.

I just came back from M D Anderson. Dr C had me go to the clinical Trial dept to see what they have to offer since standard therapy isnt doing so well on me. My scan shows the nodes under my left arm have doubled and I have new spots on my spine AND the Liver spots have grown plus there are new ones. To be honest the Liver scares the s__t out of me.

Anyway they have a phase two trial the focuses on patients with the BRCA 1and BRCA2 mutations in some DNA, Any beast cancer before age 50 is considered young and Ive had it twicw=e now, Plus my father died of lukemea at the age of 34 and his mother died of cancer in her 60,s.

If I have the mutation they are trying a drug that focuces on that mutation somehow (I dont have all the details yet).

Any interested party can look it up in the M D Anderson web site under clinical trials, The number is 2007-0431. Its being funded by KuDos Pharmaceuticals. Maybe one of you can make since of it better than I can.

So the down side is I have to waigt for the genetic testing and they told me two weeks but when I looking on mhy appionyment schedual Im not schedualed for 3 1/2 wks. Going this long with bo treatments I find nerveracking to say the least.

o what cha think??? I can ALWAYS use some friendly advise,

Thanks alot

Hugs from Va

Kim

katoMato · May 2008

http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2007-0431

Hi Kimmie - It's good to hear from you.

Here's a link to the trial if anyone is interested. And here is the Objective, copied from the site:

The goal of this clinical research study is to see if KU-0059436 given at 2
different dose levels can help to control the disease in patients with
advanced breast cancer that is BRCA1- or BRCA2- positive.

They'll also be studying safety of the treatment at the same time. It looks as though they want to see what the tumor response is at two dose levels. They want to measure something I don't understand: Complete response, partial response and stable disease at various timepoints. They want to investigate how it affects other cells, and to assess it's safety and if it's tolerated well. It also seems as though you'll be able to participate from home, as it's an oral pill.

Regarding the three and a half week delay before you can get the BRCA testing - did you mention that to anyone? Do you think it would be possible to call and "bump it up" a week? We all know what you mean about the waiting being nerve-wracking. It is the absolute worst.

We love you, Kim. You're doing a good job. Hang in there.

lilith · May 2008

Hello Kimmie! looking forward your pic...

Why don't you phone and ask an earlier appointment for the genetic test? maybe it is possible... especially as once the test is started, it may take time to get the results.

I am doing it as well, got the blood sample maybe 2 months ago - but the results aren't expected before end of the year!!! I am sure they can do it lots faster for you, but apparently it takes time to review the whole DNA coding to locate the possible mutation (I ain't an expert... maybe it is a fable, dunno). The doctor mentioned also that a second test (aka, my daughter, or my sister) to just verify the inheritance of the mutation would be lots faster, about 3 weeks vs. 9 months.

Anyway. Kim, I join with what Kaye is saying: you are doing a great job in figuring out all of this on your own. I am really impressed by you! Hugs.

nash · May 2008

Absolutely get the genetic testing pushed up, Kim. The test itself takes at least 3 weeks to process, so you're already looking at a six week delay before knowing if you're BRCA positive and whether you qualify for the trial.

Just a note, too--I look BRCA positive on paper, but mine came back negative. One onc thinks I probably have a BRCA mutation they haven't identified yet.

So my point is, don't put your eggs in the BRCA basket yet, as you don't have the necessary information. MDA is big on clinical trials, and Dr. C does have a point in looking at that avenue now, as many trials will exclude you if you're too heavily pretreated with standard chemo. My advise to you would be to see what else the clinical trial department has to offer other than the BRCA trial, but then to also start thinking about what other standard chemos to bring up with Dr. C. You haven't been on Abraxane, Xeloda or Ixempra. Also might want to ask about combining one of those with Avastin, since you have liver involvement, and it's good for cutting off the blood supply to liver mets. Also, can't remember if you tried Gemzar yet?

So glad you checked in--I'd been thinking about you all week.

Hope everyone has a good day.

yellowtownhouse · May 2008

Hey Everyone,

I've sort of been a cross between a 'nine tailed cat in a room full of rockers' and totally zoned out for the past month or so. I seem to go from superman energy to 'what do you mean I've slept 11 hours????' LOL It feels so good to be able to work in the yard and actually enjoy it. We planted 6 tomatoe plants and I think I've fertilized everything in the entire yard! I got a beautiful white victorian porch swing for Mother's Day and DH hung it almost immediately.....so I've spent a good bit of time just swinging in the breeze and comtemplating life. AND that is good because.............

"I'm not afraid of tomorrow, for I have seen yesterday and boy am I LOVING today!" Now, if I could just figure out how to win the lottery and retire permanently from the corporate world, life would be just about perfect.

Kimmie.....you keep hanging tough just like you've been doing and think about some of Nash's suggestions. What would we ever do without her? Love you and think about you everyday.

DH and I have been taking 2-3 day trips out of Atlanta looking for a possible new city to semi-retire (LMAO) one of these days. Believe me Atlanta is not a city for retirement. We're sort of in that rule out stage and so far mostly everything has been ruled out! But it's been fun even if it is exhausting. DH now starts asking me early on Tuesday, 'well where are we headed on Friday?' Mind you we don't usually get home until 7 or 8 pm on Sundays with work looming Monday morning. Now you understand the 9 tailed cat reference ladies.

My very best to all my sisters

June

Anyone starting Chemo in August 07?

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