November 2009-Starting Chemo

I hope I'm not being repetitious, I already posted on some other threads but since I'm starting chemo in Nov. I wanted to get on here also. Let me start by saying, boy you girls have a lot to say. I am not able to go back and read all you've posted already, but plan to. I hope it's okay to be here since I am a recurrence and not a first timer.

 I was originally diagnosed in Nov 08 with carcinosarcoma in the breast. Had Mod rad mast, 8 act's, 7 weeks of rads..... pet ct a few weeks ago showed activity in the lungs. Two biopsies later, my pathology came back. Somehow they still didn't get enough tissue for all of the tests. I guess that is a good sign because it so small they can't get much of it. 9 tumors in my mastectomy side, two in the other with 1 large +node. The sarcoma aspect of the tumor has been ruled out. Now it is a poorly differentiated carcinoma. It is now considered a Triple Negative Breast Cancer mets to the lungs. They were not able to test for the HER2 receptor because of the lack of tissue but the Doc believes strongly it would be negative. The Doc gave me a few different options including a clinical trial in Birmingham (its all over the country but that's the closest.) 4 hour drive... If excepted, depending on the drug plan I would be put on, it would be a twice a week trip to B'Hama week or once a week. This trial includes a new drug that is in stage III testing called a PARP inhibitor. It shows a lot of promise when combined with gemzar and carboplaitnum chemotherapy. But it is not recruiting yet!

So, instead of waiting, I'll be starting my treatment here at home, Friday the 13th. I'll be getting Abraxane every week and Avastine every two weeks. The length of my treatment is undetermined. It's different than what most of you 1st timers are doing for treatment. And not sure about the side effects yet. I hear its easier than ACT.

Wish you all the best and I've been through the ACT and then some, if anyone has questions.  

Kimmy are you taking anything for your nausea?  I found the Compazine worked best for me.  I too am always freezing, but I think it is the breast tissue gone for me.  *bilateral mx here.  I find a scarf helps keep me warmer.  I hope you feel better.  I am day 9 here.  And feeling a lot better.  So I shall hope the same for you. 

Good luck today you first chemo girls !  YOU CAN DO IT ~ and it will be 1 down!!!!!!!! 

AroninMia and SLV Sherri, we will be thinking of you today.  At least the uncertainty will be over and you will know what you are up against.  Wishing you all the best.

Also the schedule says that ReadheadPam is up for her second TX.  If so, you will be the first of us to go for the second round.  Best of luck.

Shelley

Cafelovr..So sorry to hear about liver. Stay strong and positive and be a Warrior we are here for you.

My wig I bought is a really cute cut.  It is just so much hair even with my hairdresser thinning it out.  I ordered a thinner monofilament wig ~ It looks nice.  It is by Rene of Paris and called the Regan style.  I HOPE I like it.  My kids don't want me to be bald.  A few more days ~  ugh.

Toyah ~ I am glad you are ok with the shave down, and I am sure you look great in your wig! 

((((HUGS))))

Thank you for the well wishes! It means so much!! The Cafelovr does come from my love of coffee. Keep you frappacinos, espressos, and foo foo coffee drinks. I want Juan Valdez at my bedside every morning. Can the drs. add coffee to my port drip? Hmmm.... Since I haven't started chemo (Nov 17), I don't know what my taste will be like. I've cut WAY back to a cup a day since I've heard caffeine is dehydrating. I've got my friendly little water bottle with me everywear I go. I'm going to start floating!!

My treatment is exactly the same: AC TH, but he may add Zometa to protect my bones. The mets is in ONE TINY LITTLE SPOT on my darn liver! I don't even like liver  Pelvis, Abdomen (ex for liver), and Chest are all clear!

 Bring on the fight. My Warrior Spirit will conquer!

BrendaShar...can you call your onc about the dizziness?  And re: prickly hair...I got a satin pillow case in prep for hair loss and am using it already, even with just the shaved-head stubble.  Is more comfortable than the reg. case.  And I agree with you, I'll be pissed if I am one of the few that don't lose my hair!!!!!

JustMeAlicia:  I have a Rene of P "Allison" and I love her!!!  Monofill. is the absolute only way to go.  My wig-lady really thinned it out and it's still is more hair than I used to have, but I'm leaving it alone until I wash it the first time in case it does something funky.  I figure I can always go back in and have her thin more, but ya can't put it back!

I, too, am starting to think about the next TX, though I really think I might not even need an Ativan this time since I feel better knowing what will happen.  I'm jealous of sisters who can accompany sisters to their TX.  However, I"m still fortunate because a good friend and neighbor of mine will be taking me to the next one. I figured if she and I can talk for 3 hrs. over coffee on other days, then we can sit in a dr. office with me and an IV and visit for 3 hrs. there, too. 

Cafelovr...I used to live for coffee.  I always had 2 cups in the A.M. and one in the P.M.  Since TX, I've totally lost my desire to drink it.  The thoughts of drinking it board on repulsive, however, after I make a cup and start drinking it, it's okay...though nowhere near as delicious as before.  I still try to have some kind of caffeine in the afternoon to keep a caffeine-withdrawal headache away, but I'm drinking Mt. Dews and my daughter told me about Crystal Lite Energy that has 1/2 the amount of caffeine as coffee, so I'll try that today and will start with some teas, too.  No doubt I'll eventually wean myself off of it, but I'll miss it!!!

Brenda, I second that you should call your onc.  I think they really want to hear about this stuff.  You could be lightheaded due to lack of calories or something.  Like I said yesterday, I am having trouble with my PC monitor seeming to vibrate (better today).  We are "on drugs" so these kind of vertigo feelings may be natural.  Take care of yourself.

ReadheadPam, congrats on being two down and yeah to cake (and naps)!

Brenda ~ any headache or sinus pressure?  I am a bit dizzy, I think it is low blood count and my headaches.  I'd call the Oncologist.  Maybe they can see you and do an exam.  Hugs SISTA

RedheadPam ~ yeah glad all went fairly well... that darn allergic reaction.  Get some much deserved rest after your tx # 2 ! Halfway done woo HOO ~

Oh Caffeine... yup they think my headaches are from caffeine withdrawal as well.  So I had 1 cup of regular coffee today and felt like I was on SPEED.   

Doronet glad you have a friend going with you for your next TX.  My hubby is my chemo buddy thankfully he owns his own business and can take the time !  And I think I will be needing an ativan for TX# 2 Monday ! 

Good day loves !!

Cafelover  and Anamary (welcome, by the way.)   I have a little story.  My son's best friend's mom was diagnosed with breast cancer when they were in middle school.  She ended up with mets to the brain.  The boys are 23 now and she's NED.  Perfectly fine.

Naturally, like most women, I didn't know anything about breast cancer when she got it.  I didn't know staging or anything and I thought breast cancer was just breast cancer.  I had no idea how scared she must have been and how much she went through. But, she's fine, living life, watching her son do well.

Keep fighting, this could be you.

BrendaSharon, please call your doctor about the dizzy SEs.

The American Cancer Society called me and said that they didn't have room for me in the Look Good, Feel Better class.  So, I'm out.  Just my luck.  They are sending me a wig voucher.

I have had a horrible day.  We had to put my dog of 13 years to sleep today.  He was a big ol' boy, 125 pounds of chocolate lab.  He had hip dysplasia but was doing okay on painkillers until last night.  He started suffering, acting confused and couldn't even get up on his front legs anymore.

He was the charmer of the neighborhood. The MOST friendly dog you have ever seen.  He once busted through a screen door to get out to play with some other dogs.  Because of his size, it scared the owner - until they got to know him.  Everyboddy loved Fudge.

 I'm not sure how to inline a photo on this forum, and nothing seems to work.  Here is a link to a photo an hour before he was put down.

http://farm3.static.flickr.com/2522/4098290883_c6a2344915.jpg

 1 down, 14 to go!  (gotta get me a bead bracelet, I like that idea!)

First, BrendaSharon, MeNeverMind, Melinda41,JustmeAlicia,Shel. and anyone else I may have missed above.  THANK YOU you all for your kind words and support, am just home from my 1st TX, and it wasn't bad at all!  Not sure if it was the lidocain cream my onco RX'd me, or just that the chemo nurse was so good at what he does.  Didn't even feel the needle go in the port.  The only issue they had was trying to draw blood back from my port, so after much fuss, they tried the other (I have a dual and didn't feel the prick into that one either!) same results.... so then they put in what he lovingly called caterter 'draino' and then both worked fine.

 I will admit to a moment of weakness and fear when they brought me into the infusion room.  I was just so well lit and clincial, with all the machines around the chairs (one of which I later found out was a personal TV set, duh!).  So got a little teary for a moment or too.  But they came over, hugged me and moved me to another chair further in the back so people didn't have to see me freak.  Like I said, only lasted a few secs, and did make me feel a bit foolish later.

After the port was working, the rest was a piece of cake.

First they gave me some saline, then they added in an anti-emitic (I had already taken my first Emend pill as prescribed, so wasn't expecting even more aniti-nasea meds.)  Then the added in he called 'very light' steroids, so will have to see if I become an eating machine in the next few days like I've heard some of the other warriors do!

One more surprise was Adavan, to relax me (wish they would have given me that when I was out in the waiting room!!  They let me rest for a 1/2 hour, then the real stuff began.  First the Fluorouacil, quick and easy, one large syringe, then the Epirubicin, 5 large syrynges, that he injected into the line, one by one, stopping to pull the plunger back to pull blood out every so often.  Guess this is the bad stuff, that they don't want to anywhere else but into the port.  Lastly the Cyclophosphomide, and little bag that dripped into the port line nice and slow for 30 mins.   So all in all about 2 hours of actual chemo.

How do I feel? Well,he did tell me any side effects probably won't start until 6 to 8 hours after. But I feel fine, a teeny bit, I don't know how to say... but disconnected,not dizzy, perhaps a little drowsy, maybe a 'very light foggy' would be the right term.  So that is where I am, and most of all

I AM SOOOOOOOO HAPPY THE FIRST ONE IS OVER, and now I know at least that the actual procedure is no big deal at all...  I have had less comfortable breast exams!

Oh, Sharon, thanks for the tip on the mets, mine was like yous I had my onco called a less than 2mm micro metastis in the 2nd of my two positive nodes when they did the ALND.  Will change my diagnosis too... and now you are right we match even more!

So my next TX is Dec 3rd, and the last is Dec 24th (Happy Holidays!), then three weeks later I go onto another chemo I think it is Taxotere for the next 12weeks, then chemo will be done.

Well, now it is waiting and watching.  My husband will give me my nuelasta shot tomorrow afternoon (the pharmacy delivered it) can see driving all the way to a center just to get shot. Oh and not sure if this helps ccnani the onco nurse said they don't always prescribe neulasta and emend, but some chemo combos has a much higher incindence of servere nausea, and it turns out that the epirubicin, I guess is really nasty on the stomach and system... so I think that is why they just RX'd it automatically.  Not sure the cocktail you are getting, but perhaps you  are lucky and getting a lighter version with lower nausea side effects!

Later, Warrior Princesses!!.... will see how it goes in the next day or two, and check back in with you all.

Thank you all for all of your help!  And Brenda yes, the fear ended today!

Brenda, one more coincidence!  we both have the same birth year!  My day is in Dec, and I see yours was at the end of August, just 4 days after my iniital sugery.

Too weird.... oh, and then there is always the FL thing, but every one moves to FL!

later!

CoolBreeze,

I am so sorry to hear about your dog.  Our dog died in 2005, of cancer of all things, and we miss him so much.  My heart goes out to you.

Hugs,

Ang

Hi Everyone,

Went to see my Radiation Oncologist yesterday he says I will be getting the treatment for 6 weeks (5days a week) after my chemo.

Getting over my opp very well and back to driving the car. Start my chemo next Thursday 16th so sent my DH away to our caravan for 6 days ( he is a mad fly fisherman(trout)) as it looks like its going to be a bumper season and he will no doubt miss most of it. It's a 5 hour drive away and I didn't feel up to it. 

 I have an Education Session at the hospital on Monday, I'll find out then what sort of cocktail I'll be getting.