November 2009-Starting Chemo

Hi and {{{{HUGS}}} to all my WARRIOR sisters! Sorry I've been away for a couple of days. I felt like crap on a cracker Sunday night and Monday, so all I did was sleep. Yesterday, I woke up feeling like a new person and hopped off to work. So the pattern seems to be holding that days 4 and 5 are my"out of it" days. The only side effects I am having right now are dry eyes, heartburn/reflux (does it ever go away?) and the most annoying one...when I lie down at night, I feel my heartbeat through my whole body BOOM BOOM BOOM. My heartbeat isn't rushing, I just feel it all over! I am trying relaxation techniques, but I am wondering whether this is a SE of the chemo or of "chemopause." In either case, it stinks.



I had a bit of a brush with fame today and have to tell you about it! I was at a local hospital boutique a week or so ago, playing with wigs and hats, when the saleslady asked if I'd be willing to be a model in a a photoshoot they were going to do. They'd pay me with a wig. Sure! said I, always up for an adventure and a free wig :-). So I show up this morning, and there was a photographer, a director, a MAKEUP STYLIST and about five other people, waiting to take my photo!!! I tried on wigs, shopped for hats, etc. while the photog snapped away and I did my best Next Top Model imitation. They're going to make the stills into a tv ad for the boutique! I came away with a new Rene of Paris wig. I have absolutely no idea when or where it will be on, but anyone in the Indy area, keep an eye out for my little bald head.



I have been thinking about a little "posting game" we can play for fun, so I may be posting some fun questions here in a bit. Anyone up for a smile?



much love to all.....

OK, just for fun, post your answers to these questions:



Thing(s) I miss most while on chemo: Margaritas and antiperspirant!



Thing(s) I miss LEAST on chemo: tweezing!



Most annoying trivial side effect of chemo: Less public hair = more, um, "spraying" on the potty... who knew?



Silver lining: Standing in your chemo scarf holding your tray in the middle of a busy Chipotle at lunchtime gets you a table faster than normal!



Anyone?

BRENDA SHARON, Got your back sis!! I think you and me are on the same wave length!! We always post back to back!!! Hang in there sis, take something for that headache!! ughh!! /thanks for instructions re private messages!! Your assistant is sooooo slow!! Let us all group hug you today, even if from afar!! We are with you sis and we are lifting you up !!! (((((((((((((((((((((WARM TIGHT HUGS))))))))))))

OH MELINDA , i feel so bad that  you are bottomed out today!!! I'm reaching out to you and BRENDA and praying for a better day tomarrow. Take all your meds and hang on tight!! Now I guess you know when you will feel bad, and when that will end!!  (((((HUGS)))))

Hey sister REDHEAD, wow you rock all those wigs!! How great is that that they chose you to model, not surprising by the way, cause you are a beauty!! Let us know if you see yourself on TV. Glad your doing good I was waiting to hear, cause you and me are on TCH. How are your SEs, if any?? Glad your back! HUGS!!!! Hey sis I'm up for the GAME, let the GAME begin!!

ANAMARY1, glad your posting sis and super glad your doing good!!! Yeah I wanted to do weekly TX but the onc said no way your getting the BOMB!! YIKES!! I start in 2 weeks, double yikes!!! I'm really happy your feeling lucky and well!! Keep posting sister we missed you!! HUGS!!!!WARRIOR SISTERS. 

Day 2 of 2nd tx. feel much better than the first tx. I have had no problems with the neulasta I take a claritin24hr and aleve day of and 2 days following so girls its worth a try. I had shaved my hair off but it doesnt seem to be falling out yet and havent had the itching like some of you. Day 3&4 were bad last time so probably will be sleeping the next couple of days.

Best wishes to all who have treatments and praying for Brenda that all is negative.

Melinda ~ I am with you, day 3 post #2 TX and Neulasta yesterday I am wiped out pretty major.  EXHAUSTED. 

Pam ~ I too have that heartbeat thing, ativan helps a tiny bit it makes me nuts and then I can't fall asleep.  I am glad you got to be a celebrity you deserve it pretty girl.

Kimmy ~ sorry you aren't feeling so good, buzz the hair.  I am glad the trauma is over.  It's not too bad ~  a few tears and it is over.  HUGS !!!

Anamary, Doronet, Mommy2two HUGS!!!  Hope you are all hanging in there !  Thinking of you all.

BRENDA BABY !  Sending up big huge prayers for negative results tomorrow.  WE ARE HERE FOR YOU and you will get through this no matter what.  Good luck with the chemo I hope it goes smoothly love ya sista !

Nite all... I'm wiped. 

Hi everyone, I'm finally joining in the posting. This is my first and so it is long. I was diagnosed in August 09 with IDC - a small but mighty tumor: PR+ ER+ Her2/Neu+ Grade 3. With that my Stage 1 (neg on the one node removed) "oh just surgery plus rads will be enough" changed to "the works." At this moment treatment looks like chemo first (18-24 wks), then rads (7wks), then hormone therapy (5 years). Chemo for me is TCH: taxotere, carboplatin and herceptin. All 3 are given every 3 weeks and the herceptin is given every week. So a cycle includes one full TCH treatment plus two H-only treatments. I'm to have 6 cycles. Except it is under reconsideration...

Cycle 1 Day 1 was Nov 5. Getting the TCH was tiring but OK. Like many of you the anticipation was worse. Day 2 and 3 introduced mild nausea, heartburn/reflux, diarrhea, fatigue. Day 4 swept me off my feet. I stayed in bed hoping that if I didn't move...it didn't work. Nausea, vomiting, diarrhea, cotton-mouth, metallic taste. Zophran and composine were wonderful. Then I started adjusting and feeling better. Days 5-6-7 each had 3-4 pretty good hours before the long naps drew me in. Diarrhea remained stubborn and scouring. Day 8 was the first H-only treatment. That night I felt like a steepchase with a dozen horses raced through my bloodstream. In the morning I felt trampled. By afternoon I started having fevers and as they got higher we followed instructions and called the onc. Day 10 my onc sent me to the ER with an overnight bag. I stayed in the hospital 3 nights/4 days and came home yesterday. I had neutopenic fevers. My white blood cell count was too low and the neutrphils even more so. Normal counts for neutrophils are 1800-8300, the danger zone is at 500 and mine had dropped to 36. When my count went back up to 600 it was good enough to send me home. Even though I am on powerful antibiotics, I feel better than since Day 1.

Tomorrow, Nov 19, is my second H-only treatment. The onc thinks this is all related to TCH and not to the H and I WANT to believe him... but in my mind the fevers followed the H, so...I have a bit of trepedation. Tomorrow will be the test.

I meet with the onc next week to see what changes in my treatment he'll recommend. I expect the TC dosage might be lowered (and more cycles added) and I may have to take neupogen to stimulate the WBC.

I also have been having acupuncture and working with a naturopath to build my immune system. I can't take some of the supplements (L-glutamine, CoQu10, L-carnitine) while on this particular antibiotic but am hoping I can get them going before the next cycle.

It has been a full 14 days. I seem to have gone through the book and tried out a good share of the side effects listed!

Anyone else have trouble with WBC, or take neupogen?

Thanks for sharing all your posts - it really is wonderful to have this community to turn to.

Today was a good leaf-kicking day!

BeccaS

Silver Lining : my psoriasis is clearing up !  I was afraid I would be bald and scaley but it appears that the psoriasis will leave before the hair does.

I am going to believe that yesterday was the bad day and that today will be better, we'll see if my powers of delusion are strong enough to keep me upright today!

GOOD MORNING WARRIORS!!!!I been up forever sleep seems to elude me!! Sisters I hope today will be a good day or at least a better day for you all!!!

BRENDA SHARON, today we are all with you in that drip room. We send (((((WARM HUGS))))) and all our prayers for the big NO METS NEWS!!!!!  Hang on sister cause you are the WARRIOR LEADER of THE WARRIOR PRINCESSES!! 

SHEL TX 2 today!! We are with you. Hoping that this one will be easier and minimal SEs!! We send you((((((((((( WARM HUGS))))))))))))) 

Doronet you are exactly right!! They, the ONCS should tell us all about the possibilities and how to fight the SEs and what to expect but they don't!!! I guess like the nurse said " no big deal" well I guess it isn't to them, but how about to us girls. This is exactly why I'm worried about my 1st cause my ONC doesn't believe in giving neupogen or neulasta unless I crash and burn!!! I'm glad you didn't need it!!! ((((((HUGS))))))

ALICIA,PAM, and ALL other sisters suffering with the HEARTBEAT THING, what is that all about??? Have any of you asked the ONCS or NURSES about this??? Are any of you sisters taking your blood pressures during all this??? I'm asking cause when my blood pressure gets out of control I hear that heart beat thingy too!! Check your blood pressure girls and call the dang oncs, they are supposed to be on top of this stuff!!! I'm so sorry you feel wiped out, and I'm praying this will pass quickly. I'm so PROUD of all you sisters who are feeling bad and still posting here, you girls are the BEST!!!!

Melinda, hope today is a better day for you and that you will feel more like your old self soon!!!((((((( HUGS)))))) HANG IN THERE SIS!!!!

IAMMOM2FOUR, Welcome sister, as always we are sorry you find yourself here, but all the WARRIORS welcome you in and will help you in any way they can. Our thoughts and prayers are with you in the drip room this morning, you are not alone. (((((((((WARM TIGHT HUGS))))))))))))))

BECCAS, WELCOME sister!!! Another HER2+ sister. Yikes sis, you are really going thru IT!!!!! I'm so sorry that your journey so far has been so rocky!! I do have a few questions re. your chemo and schedule. TCH X 6 every 21 days, with Herceptin every other week in between??? Is that right???  Well, if it is, Its a first!!! There are several Her2+ sisters on this thread, and some of us get TCH X 6 every 21 days, others have a slightly different cocktail, but no one here or anywhere I've ever seen has H, every 2 weeks and TCH every 21 days. Are you sure they are giving you H with your TC, could it be they give you TC and then H  in the off weeks!!! Let us know!! Is your ONC giving you neulasta shot the day after your TCH, or possibly Neupogen shots? If he wasn't thats why your WBC bottomed out!! Most of the girls here, with the exception of a couple, receive these shots to avoid the WBC problems. Looks like you are an example of what can happen if the WBC wipes out and why most oncs give the shots before that happens!! I too am Her2+ and grade3 one node positive IDC left breast 27 nodes removed. I have a friend, a nurse, who just finished TCH and now does the herceptin alone every 21 days. She has very few SEs with the Herceptin. Your doc is probably right about the Taxotere and carboplatin, those are the ones that cause the WBC drops. However, they need to get this taken care of and if they don't do it right away you need to get a second opinion, which I hope you did anyway in the beginning!! Was the node they took the Sentinel Node?? Meanwhile good luck today with the Herceptin, we will be praying for you while your in there and Please Do let us know your ok or not, we will hope for good stuff for you today!!((((( WARM HUGS))))))))))))))

KIMMY, so glad you are bouncing back!!! Enjoy your day today and you just rock those wigs girl!!! Also, if you want ice cream just go for it even for breakfast!!!! Your the Boss!!!

Well girls, hope all you Warriors have better days today and Pam it looks like your getting a good response to the game. Some of the answers are hilarious!! Be safe and Warm today girls. Remember to have our sisters who get their TXs today in your hearts, BRENDA, IAMMOM2FOUR, BECCA S  and SHEL. alota luv. 

CCNANI - Thanks for the welcome!  I'm a bit late responding, sorry!  I will be more than happy to share any experiences - any questions at all.  Yes, my 4th round of 6 rounds will be Nov. 30th.  This 3rd round was much tougher for me than the first 2.  I didn't think I could get more tired, or my mouth taste worse, but I'm afraid that's been the case.  For those of you questioning Neulasta, I get my enjection 24 hours after each chemo.  The first time, the bone pain didn't kick in until 7 days.  The 2nd round it was the very next day.  This time, it was 7 days again, but wasn't as bad as the first.

Also - I have not had any surgery yet...my Dr. started me out with chemo first, then surgery, then most likely radiation and maybe more chemo.  It's all still up in the air, need to see what the chemo does first.  I have at least 3 lymph nodes that are bad, the PET scan found that.

I have a port, and I'm glad that I have it.  A little uncomfortable at first, but well worth it.  I HATE needles, and the port makes it a lot better for me.

I still haven't lost all of my hair, but it's getting there! LOL  No hair on legs now, or pits, "hair down there" is about 1/2 gone.  Still have my eyebrows, but they are getting a little thin.  Still about 1/4 of the hair left on my head, but I've been buzzing it to 1/4" since it started falling out.

 Oh well, any questions, feel free to ask.  I have company arriving tomorrow, and will be here until my next chemo.  They scheduled it around my good days, which is great.  I'm definately not up for company on the first week.

I will try to check the posts in the morning, as I hope to be out having a great time during the day. <G>

Linda in LV

I've been reading all your posts and though I'm scared as hell I feel encouraged. I put the cart before the horse. Yesterday I went to the onc for the first time (already had the bilat mx last month) and my oncotype was high so I'll be joining the chemo clup. After the surgery the SNB came back clear so I thought I was off the hook. Not so lucky. I decided that knowing the oncotype score and being able to hopefully bypass a recurrence is a good thing. But I'm seriously dreading the whole chemo thing. I hate the idea of losing my hair and I only realized yesterday this doesn't mean just the hair on my head (duh!). Eyebrows and eyelashes, too.

My first session is December 1 so I think I will start a new "starting chemo in December" thread.

Good luck to my fellow warriors out there. I'm thinking of you and relying on your strength and humor.

Brenda Sharon -- thinking of you today and sending you clear vibes for your MRI results!

Becca and iammom2four - welcome to our little sisterhood!  I am sorry BC brings you here, but glad you have found us. You'll find the support here amazing.

 Alicia - I tried ativan and OMG!  I didn't sleep for 3 days. I am wondering whether the pounding is related to a mild anemia duing my nadir week, since I have read that can be a side effect.  I may look for a new multivitiamin with extra iron. I'm going to ask my onc next time we talk.

 Kimmy -ice cream for breakfast is TOTALLY ok! Calcium, dairy, what could be better?  Sprinkle some granola or cereal bits on top and you might as well be eating Cheerios. Eat what tastes good!

 I'm a little wiped today -- between the photo shoot, work and a board meeting yesterday, plus I went to the gym, I tried to do too much.  Won't do that again. I think today I will just hang in my little cubicle and try to catch up on stuff. Sometimes you just feel like putting your head down and taking a snooze, but the snoring might bother my cube mates. 

Instead of hugs today, I'm goign to send out neck rubs, since that sounds reeeally goooood.....

YEAH BRENDA!!!