Starting Chemo, November 2013 Group

bec65-

I spoke to nurse today and asked about neulasta and she said dr said I will get it next time -woooohooo!

I voiced my frustration at feeling soooo ill and tired and missing events as my wbc so low...she told me to

'lower my expectations and rest'...WOW! I am tired of resting and tired of feeling like crap....

on a happy note my husband cut my hair! I look like the new willie wonka!!!! SOOOOOOOOO funny! First laugh I had in awhile ...

Good evening ALL.! It took me a few minutes to read thru all the posts! Yall been busy today!

First note the laundry...my MO gave infor about especially the first 72 hours after chemo dose to make sure that you clean your laundry seperate....especially areas touched by bodily fluids. Sheets, undergarments, towels, etc. Some of the chemo can be both toxic to some or just plain acidic....(I guess left long enough it could eat through it??!) The literature did not say too much after the first 72 hours. Also if you get any body fluids other places...ARF UPS...or Bottom ARFs....make sure you clean those areas using gloves...caretakers double glove. If you have laundry you cannot was right away....seal it in a plastic bag seperate from others until you can wash it. Wash the exposed clothes twice in hot water. Do not rinse/wash by hand.

Do not share or reuse towels. this goes for entire treatment but especially during the first 72 hours. It makes sense! The germs we leave behind on our bath towels can be extensive...even though we just bathed!! When our resistance is down some of those germs that are normal in our home can cause the nastiest infection! Better be safe than sorry...Take it from one who almost died from a hospital caused MRSA systemic sepsis and spent 74 days in the hospital. My MD cried when I left because she said it was a miracle I survived! I now a fanatic with clorox wipes and cans of lysol. Whenever I go ANYWHERE...I have wipes to disinfect. ....We can normally fight off most germs but now with our immunity suppressed....again better safe than sorry! We cant overlook areas of our homes either...especially the potties, bath, kitchen, fridge, sinks and microwave! I keep disposable gloves and disf wipes in the kitchen, and bathrooms.

Generally....we do my RN hubbyies laundry separate as a rule. He leaves his shoes outside and I NEVER touch his stuff! He drops his shoes before he steps in the house...goes to the laundry...puts his clothes in the washer...PERIOD! This began in 2005 after the "incident". You cannot even imagine the buggggssss and nastiness in hospitals and drs offices! ICK....

Anyway....you cant let it run your life but you can do things to help alleviate possible problems!!!

Ok...Now Hi Everyone!

Audrea- sorry about your wrist...hope the doc got you on some good meds! Virginia and yall with the boob refills.....I cant imagine how frustrating that must be....like you're on the runway in holding....PomPom....yes I too feel my heart stronger...part of that may be because the line that comes out of your port is close to the skin at a point. I can make you more aware of you heart...especially in certain positions. Pat...How is your cat bite?...Edlicore HI:::: welcome! Ink I had to have my blood drawn from my arm....boo hiss because there is not an RN at the closest Quest....How are you today Amazon? Audra...cool about the hair! lol!

I cant keep up with yall! I have a dino computer...hubbys using the fast one!.lol!!

Bec65....I agree with the decadron. Any steriod pumps you up! To me it is a freedom because it supresses my autoimmune problems. The downsize long term side effects SUCK....make you swell up...loose bone mass...increased infection....SLEEPLESSNESS!...but those effects are not at the doses they give with our treatments....except the sleeplessness...and it makes your crave SWEETS!!! HUNGRY! Lots of temp energy....but when you come down youre tired....The benefits of curbing the side effects of treatment are worth it!

PomPom....call your doc...have him/her prescribe DIFLUCAN for the thrush/yeast infection. It is the only thing that will take care of it systemiclly. I ALWAYS get yeast problems on antibiotics. For those who are unsure on thrush...It is worse than just the Chemo nasty mouth. It causes a white, creamy look to your mouth. It feels real slimey..you can literrallly scrape the gunk off your mouth and tongue.....things taste even worse...yes worse than chemo taste. As it progresses....you can get a sore throat, furry feeling mouth, mouth ulcers and just RAW MOUTH! the DIFLUCAN is a pill! I am on one a day for five days but suspect it will be longer! Hey Melrose! Hey Lorrymom! Hey Gia!

Sorry Wallymomma about the delay.....How are you doing...Lorrymom?...

Do not forget your local American cancer society....there are diff ones...so if you have close towns check them all! I know in my area they even have BOXES and BOXES of all size BOOBIES! So those of you who need alittle filler to pass the time or have decided not to rebuild those puppies...they are available! They also have all kinds of wigs....ALLL FREE!!!!

They also have a "looks good feel great" makeup/makeover class where they work with you and give you free makeup, teach about scarves, wigs, etc. If you have a local chapter of the ACS...check them out!

I've felt rather punky today...my port is bleeding a bit...so we need to check the site after my fluids tonite. Still queezy and dull headache. FIngertips killing me...they split open when cooler out or too dry....OUCH! Its like a hot dog that bursts in a microwave...little splits! I have this from time to time but...BAD NOW!

I have a pet peeve.....Whats with it with these thermometers! I cant get a consistent reading off of ANY of them...I have from the old fashioned glass to the new fangled ear jobber. I will get anywhere from 95.5 (which is NOT abnormal for me) to 99.7 (which is HIGHLY abnormal for me) anyone else finding this????

Ok...I'll shut up! I need to VENT and saw HI to the world! I am praying for you all!!

Huggs!

T're!

Is anyone taking L-Glutamine? Its supposed to help with neuropathy, diarrhea and vomiting during chemo.

I would like to ask a question of you ladies that decided to get both removed, if you don't mind. What led to that decision? I understand that it's a personal choice, and to be honest my very first reaction was "Take them off!!" My surgeon says that the survival rate isn't that much different, but from this side a 5%-7% difference looks huge. I've got 6-7 months before I have to make such a decision and it may come down to what the genetic tests say. It got my mom, although she was very old and in such fragile health that a lumpectomy was the most they could do for her. I'm just not sure what facts, much less emotions, should even be taken into account. On the lighter side, I really can't wait to lose my hair. I've never had any talent doing anything with it, I've always kept it pretty short, and always said that I'd shave my head if it wouldn't cause a divorce. Now's my chance to see what it's really like. I've decided that the first time a find a clump on the pillow, it's gone. Not sure if there's a Visible Changes in town or not, need to check. I also need to call my navigator to see about wigs I guess.

T're- I'd go with the old fashioned thermometer. New ones may be accurate (or so thy say) but sometimes the old stuff is just flat better.

Wallymama, I think it's such a personal decision for everyone. For me, I decided years ago that if I were ever in this situation, I would want both breasts removed. I felt about my breasts like you do about your hair. I didn't consider them a defining part of me, and they certainly didn't get any better looking after nursing three kids! When I was initially diagnosed, I didn't have a choice and had to have a mastectomy on my left side b/c at the time, they thought I had multicentric IDC and couldn't do a lumpectomy. I'm only 48, and my youngest kid is 13. I told my surgeon I wanted everything removed that improves my risk of recurrence, no matter by what percentage. I'm waiting for insurance to authorize genetic testing. If I need to have my ovaries removed, sign me up. I'm a stage IIIa, and there is no such thing a small percentage for me.

I heard exactly what Inks said about symmetry when I went to the prosthetic bra fitter. The fitter said she sees women all the time who had a single mastectomy and have a hard time getting a balanced look and feel. I don't know this first hand, but it can make sense. On the flip side, I'm sure there are LOTS of success stories too. For me, not having to match my pathetic-looking right breast is a relief! I have great foam prostheses that are better-shaped than I was and are super light-weight and comfortable that fit perfectly in a Coobie bra. My silicone prostheses which I wear in a pretty lacy bra are even better. I tried getting a bigger size than I was (after my 19-year-old daughter said "go big or go home!"), but I like the look of me as a B-cup with a fabulous full shape. I used to have to get mega-pushup bras just to look normal, so I'm glad to have the same feel on both sides.

If you decide to have the other breast removed, there are other practical benefits. I definitely enjoy the feeling of "freedom" when I go bra-less. I'm a pretty average-sized person (5'7", 140 lbs.), and I feel really comfortable going out for my power walks rockin' the Flat Stanley look! Also, I still have bra strap issues with a sore I developed on my port, so it's nice to be able to go bra-less while it heals.

So, that's my two cents' worth! Whatever makes sense to you is your right thing to do.

Morning everyone!

Well Happy Birthday to me! I am hoping my hair will hold out one more wash and blow out before I start any excessive loss!

My look good feel great is the beginning of Dec. They said Id get my kit there! I guess they all handle it a bit differant but heard great things about it! Glad you got to go Lissy!

Virginia...my MO took me off any suppliments that were not regular vitamins...not ?

How is everyone today??

I agree about the thermo's.....I have one but those buggers are hard to find. I treat mine like GOLD!!!

One thing about the stuff at the american cancer society....They had bra's, prost, wigs, hats and more. Everything is FREE!!! I hear the makeup is top notch and they are very helpful.

Another odd question....since my kids birth I have that wonderful present left behind of Hmrds.....they have been ok for years...but since starting all this I have one that is bugging the butt off me! Anyone with that odd side effect? lol!!

Also....remember...with the chemo...sometimes you think you have a cold because your nose runs...but it because the small nose hairs fall out that normally catch all the "stuff". On the same line...when you do get a cold it will seem much worse because off the same reason!

BIG HUGGS to eveyone!~Hoping to feel well enough and not suseceptable enough to enjoy my B-day celebration!

T're!!

Paulette23- I also had the wonderful side effect of "herrhoids aka hemorrhoids" because of the constipation side effect from the Zofran.  I did talk to my onco about this and she said to get the constipation under control.  I ate 1-2 Sunsweet Ones individually wrapped prunes with breakfast, lunch and dinner, increased my fiber intake and fluid intake.  Sitting in a tub of warm water also helped. Fortunately, they were a minimal problem.

Joanmj58- If you have questions about the Herceptin B-47 clinical trial, please feel free to private message me.  I participated in that Herceptin clinical trial and was randomized to receive the Herceptin.  My chemo regimen was Cytoxan/Taxotere.

wallymama- I elected for a lumpectomy the first time bc it was not emotionally ready to make a radical decision with such a small cancer. With that being said, I have thought about/obsessed about cancer since I am 14 years old (when my mom was Dx'd). I was just too "chicken" to have the mast in '07. Flash forward to this year, when I got my new dx, there was never an inkling of a question in my mind that I would do a bmx. Turns out my cancer came back in the same breast, so mx was the only option for the right. My surgeon was not pro taking the left "healthy" breast, though there was some suspicious cysts in the left. she also quoted me similar stats as ur surgeon did... I basically lost it in her office stating how I've lived in cancer land since I'm 14 and that I was convinced that I would get cancer in the left.....so basically she agreed to the double mast to save the sanity of her patient (though I feel like I am quite ready for the loony bin) .

I originally wanted to do the diep recon, but the earliest I could do that was Dec 6th and my BS said that I could absolutely not wait that long for recon....that the cancer had to come out of me ASAP bc I am TN. turns out my ps said I was not a candidate for diep bc I don't have enough belly fat! (I went on weight watchers and lost 50 lbs). In the end I did bmx with immediate reconstruction- tissue expanders. I had my last fill this past Thursday and can get my implants 8 weeks post chemo (so hopefully mid march for my exchange).

why do I not get yalls post till all at once??? do yall get mine? I'm starting to feel like a red headed srepchild who doesn't belong.....its wacky!!!!!

getting ready for Bday dinner......so far hair is behaving! one last yahooooooooooo!!!!!!!

Paulette --This was posted on the April/ May Chemo 2012 discussion thread by dancetrancer which may help you to determine if you have Neutropenia ( low white blood counts.)

So here's the scoop on the whites. It is not just your WBC.

The number you want to examine is your ANC (absolute neutrophil count). ANC = white blood cell count X % of granulocytes (they are also called neutrophils). There is a more complicated formula, but this one gets you close enough and is the one I use.

For example - say your white blood cell count is listed as 3.0 K/uL (scale is important - so look and see how yours is listed) and your neutrophil/granulyte % is listed as 25.2%. You convert the WBC to 3000, multiply that by .252 and get an ANC of 756. This would be Grade III neutropenia.

Grades of Neutropenia

Grade 1 = 1500 to 2000 = slight risk of infection

Grade 2 = 1000 - 1500 = minimal risk of infection

Grade 3 = 500 - 1000 = moderate risk of infection

Grade 4 = < 500 = severe risk of infection

SpecialK - I get your point now. If you decide to do anything with the healthy breast you are taking extra risks that something can go wrong. So pretty much it's a catch 22 situation for those who need a mastectomy, you are damned if you do, and you are damned if you don't.

On a lighter note - my PS gave me a thick handout about the risks of all post mastectomy reconstructive surgeries, some I clearly was not aware of but one made me laugh... you may not be able to breastfeed after the surgery..... wow that one came as a big surprise. But apparently warnings like that are just as necessary as warnings on coffee cups about the contents being very hot.