January 2013 chemo group

Anonymous

Shannon~My AC has been every three weeks X 4. I don't get Neulasta because I have an extra week to bounce back. My MO gives it to all her patients like that. It also lessens the chance of getting leukemia farther down the road.



Nicole gives great advice.



Blessings

Paula

kingboo

Going in for my first TC

I have done my weekly household chores preparing for tomorrow and the days after.

I also have taken the flu and the shingle shots, bought claritin, and a very expensive reishi mushroom pills.  Hopely these are going to make me feel more human.

I am bringing in my laptop, maybe I will post something during treatment.

Bryona

Shannon, I hope your pug Jedi powers (courtesy of the marvelous LeeA) are with you over the next few days. FWIW, I pee red -- actually, it's more of a burnt orange -- the first time I pee after the red devil, and then it goes back to normal. Also, if you get a headache from the Cytoxan, ask them to slow your drip next time. I had a sinus headache the first time until they stopped it and restarted at a slower rate (they started it as a 30-minute drip), but the second time they ran it for 45 minutes and I had no problems. Little change, BIG difference.

Mandy, with any luck at all your white cells will have totally rebounded by the day of the party. It's actually probably the best one you could have chosen...although you should still play it safe by avoiding contact with the adorable germ factories -- er, I mean children -- and using Purell liberally. Are you on a 2-week or 3-week regimen, and will you be getting Neulasta/Nupogen shots?

Nicole, congratulations! No more red devil for you EVER!!!!

Bryona

Good luck, kingboo! You show that bartender who's boss!

Bryona

Shannon, in light of LeeA's pug pictures and in honor of your general attitude towards the world, I give you... YODA.

I don't know which one of you I love more.

gd2shuz

Smethot, in regard to pulling out a scarred boob...if I wasn't afraid of being arrested I so would pull up my shirt and show her my no boobs. And speaking of being arrested, I feel as if no boobs and no nipples is not really nude. For me, it's the nipples that made it "real".

Skigirl72

I fondly refer to my left as a 'barbie boob'. Nice and round and perky with no nipple... LOL

Nicole503

Skigirl72 ~ I love hearing about your 'barbie boob'.

Anytime I get a compliment on my wig, I always say.  "Thank you, but I should let you know that this is chemo barbie hair."   We gotta get our laughs where we can, right?

martha323

Nicole, Congrats on finishing AC! Best wishes for few side effects with T -

Shannon, I hope your next few days are as much of a let down as chemo - really!

Bryona - 'A shit I do not give ..." Hmmm ... sounds familiar. I know, wrong interpretation ... Can't help it. I really will change the topic at some point and tell the group about some of my other interests ... lol ..

kingboo - Best wishes for a first TC and keep us posted.

SherylB - Chili for us last night as well and then heartburn on and off from 2 a.m through the rest of today. Hoping I didn't trigger something in my tum other than a longer than usual bout with indigestion.

Labs today and looking forward to results tomorrow.

Sending wishes for an uneventful night for all - Martha

 

cancernoway

Skigirl - Cheers to infertility for us both!  I'm 43 and am not gonna be using any of it so it needs to go ahead and shut down.  I'll take a power surge over a period anytime.

Shannon - So glad that everything was less than you expected and hoping your next few days are uneventful. 

Nicole - So happy for you that your AC is over.  Hoping your SE's are better this time. 

Kingboo - Good luck to you doll.

Bryona - Yoda cracked me up.  Hilarious.

Went to my adorable Onc today and my WBC was an awesome 10.5 so the Neulasta worked exactly as it should have and I only have to see them the day of Chemo an hour before treatment.  He is giving me another anti nausea on treatment day through iv to help with day 3 yuck.  So excited and hoping it works. 

Good luck to all and minimal SE's all around.

Nicole503

Martha323 ~ If you do not already have a prescription for prilosec, you might want to consider asking for one.  I had BAD heartburn after my 3rd treatment and my MO's nurse helped me to understand that because chemo targets fast dividing cells, the cells in the GI tract are especially susceptible to "collateral damage".  I really recommend treating heartburn pretty aggressively, based on my journey.  When it gets bad, it gets BAD. 

Good luck!

Anonymous

Hope49 - here i was thinking...I've got this.  Instead, I got seriously derailed with this rash.  A rash.  I mean really, how bad can a rash be?  In addition to the rash, this taxotere is starting to burn me from the inside out.  My hands and feet are on fire and the nurse said, yep, that is basically what it is doing.  They put my on steriods to do away with the rash.  All i'm wondering at the moment is how i'm going to get through 4 more treatments

I've seen some of the ladies have had some serious issues...well beyond a rash.  You all give me hope i can get through this.  I love this group.

Nicole - congrats on being done with the AC!  YIPPEEEEE!  And i'm stealing the chemo barbie line!  I can't think of a better description for my foobs and wig!

cheers ladies!

ablydec

While we're at it, do any of you have teary eyes.  And most annoying, a twitch in my eye muscle (which I have had before, when I don't get enough sleep, but never for this long or this much.)

Anonymous

ablydec, yes my eyes have been twitching too. I was attributing it to the Brian Joseph's, which is my brow/lash "stay put" magic (hopefully). But, maybe not. All bets are off on trying to tell what's what these days.

Shannon, welcome back from the bar. Are we seriously the only group in the world that feels we need to laugh a little through this? There is enough shit on our plates without making it all doom and gloom - especially in these horendous 70's like hospital rooms. Seriously, can they not come up with some cheerful colors or decor?

 

Got the results back from the BART today. Okay, so I really don't get it. I had the BRCA done almost two years ago. So I knew I was negative for the BRCA1 and 2 already. Now all I know in addition to that is they have looked at some outlying rearranagements, but don't have any data to support or look at what it means. Okay, really? And that just cost me and the insurance company another $$$??? how much?? Basically all I know now that I didn't before is that maybe they will have more information on these additional mutations in the next decade. Guess it is good data to have for my girls, but I could have stuck to the BRCA for that.

Chemobiyatch

I started my Chemo today. Already feeling exhausted. Writing a humorous blog to keep my and other spirits up. Hope it helps. 

http://chemobiyatch.blogspot.com

Chemobiyatch

I just started today and had runny, itchy eyes. They stopped the treatment for a while, gave me allergy meds and then continued at a lesser pace. My eyes are still itchy and watering. And I was there for 2 more hours than I should have been. Oh well day one gives me lots to write about. http://chemobiyatch.blogspot.com

Jubby

skimommi, interesting hearing about your genetic stuff.  Sounds like a similar story to me.  "We are sure you have something but we don't know what it is yet".  Hmmm.... like you say, I so hope they find it in time for my daughter.

smethot, good news on your first treatment.  Hope the smooth sailing continues.

Everyone else, I have a question re hair.  To buzz cut or not?  My hair was cut short for chemo (think Michelle Williams short - well actually I look more like my 69 year old Mum but hey...) and it is now falling out in clumps.  No bald patches, just big fistfuls of hair if I touch my head and wash it.  I am wondering if it all falls out or if you go bald in patches?  I guess everyone is different but even losing it when it's short is a yukky thing. I am thankful I had it cut short but wonder if by not buzzing it, I am extending the moult/pain? My scalp feels very sensitive and if I buzz it I wonder if it will feel more tender.  I think you said something along these lines skimommi? I'm leaning towards the buzz but would welcome hearing from others about their experiences. 

SherylB

Martha323,

Get something for your stomach. Ok with MO first but we all seem to need something for our GI tract. Prilosec (omeprazole-generic) is sold at walmart for about $13-15 for a months worth. Most Rx co-pays are more than that and you don't need a Rx. I also use tums for the breakthrough heartburn. Plus the alkallinity of the tums soothes my burning mouth.

PS. My mom was a twin, Martha Jane and Mary Jo

Sheryl

martha323

Nicole and SherylB , thank you for your timely help - I'll get in touch with my MO this morning. Sounds like this may not be an isolated event and that it's best to ask for something now! I may be getting a bit of the dry mouth thing as well so I'm glad that I have Biotene mouthwash and toothpaste - and someone mentioned a spray as well.

smethot

I feel like i'm waiting for a bomb to drop...overall, i feel pretty damned good.  No voming (thank god and knock on wood) and i slept BIG TIME last night.  A solid 8+ hrs with additional bed-lounge time.  I love bed lounge time.  I woke up every 3-4 hrs to pee (normal colour) and i'm taking all my anti-vom meds as prescribed.  I'm eating well with just a wee bit of heartburn that i'll mention to the nurse today when i go in for my Neulasta shot.  I also have a low-grade headache but i have no idea if its from chemo, no coffee for 2 days (i loves me coffee) or from the KICK ASS SNOW STORM that is burying Southern Ontario (and a buch of the US) right now. Holy crap-on-a-cracker!  Its a monster out there...who picked a good day to work from home???  Because of pre-existing nerve damage i always predict the weather with my body (picture husband's eye roll here) and the headache could well be from the snow so i'm gonna pop some Tylonel and see how it goes.

Does anyone else think LeeA is a goddess for being able to get THAT MUCH protein into her daily?  I'm at 21g right now and feel like a superhero...100g is HARD!  And a question...aren't we supposed to stay away from orange juice (antioxidants) or am i misinterpreting something?  Clarification, pls.

And Bryona...my yougest is gonna LOVE that Yoda...and it is pretty applicable.  I find it funny that there are so many people here who get me...i ususally don't get along well with "normal" women.  They find me WAY too over-the-top but i swear, you ladies here all have the same attitude and sense of humour (for better or worse) that i have.  So much for my boss saying i intimidate all the men at work (what???  All 5' 2", 130lbs of little blonde me???) and that i do not play well with others.  Up yours!  They call me the Pit Bull at work and the joke is that i have bigger balls than all of them...more than one person has said to me that bc picked the WRONG person to f*** with!  Gooooooo CHEMO!  xoxox Shan

Zorina

Yeah Nicole!  Last Dance, Last Chance with the Devil, and you made it. I hope that next week at this time I am celebrating a similar victory. (How appropriate is it that I am doing this on Valentine's Day??) Take care, and just grin because you beat the red devil! For taxol, I am going to start with the high does every two weeks.  I suspect they will do a slow drip automatically because I had a slight reaction to Cytox the first time.  If I don't handle it well, my MO said we can drop it down to weekly smaller doses.  I am willing to try the high dose just because I want to get out of chemo before my birthday in May.  I may not make it, but I am not going give up on this goal easily.

Shannon - I think the wait and the unknown are what make the first treatment so anti-climatic.  You go in, it happens, and wow, nothing seems that much different.  It will in a few days, but make sure you drink lots, and if you get really, really tired  (barey able to move), go in for a bag of fluids. Sorry, I keep repeating that, but after haing my BP drop to 80 over something, I consider my bag of fluids as essential!

Skigirl72

I just remembered some thing about Prilosec. Try to have your primary dr or MO write a script for the stuff. I remembered my insurance will cover a regiment of reflux meds. at least it will save you some $$.

smethot

Today is very cold here (hence the avatar change).  -17 with the windchill.  Celcius that is.  Brrrrr.

Skigirl72

Smethot- are you guys under a storm watch too? I am in Rochester, NY. We are supposed to get up to a foot of snow. Snowing pretty hard right now but I live right next to the lake. Fun fun fun!!!

LeeA

Re: protein -

1.) I don't count every gram but if I eat the better part of one of the largest Fage containers and then eat meat for dinner I'm fairly certain I'm coming close to 100 grams.

2.) I failed to do this during the 4-5 days post-treatment #1 (I primarily carbs which probably wasn't the smartest thing to do).

3.) I add very little orange juice to the yogurt.  4 ozs max.  I explained the brand/formula, etc. to  the integrative physician at the Disney Center and she had no problem with it.  I've gotten the impression that antioxidants from food sources are not of concern but everyone should check with their own oncologists/integrative physicians when it comes to antioxidants.  The children's vitamin that the integrative physician recommended had 200% of the RDA of vitamin C.  Before I opened the bottle I showed it to the medical oncologist to make sure he was okay with it.  He was fine with it (which is good, since they more or less work together).  As an aside, the integrative physician used to be a radiation oncologist. 

smethot

Massive storm here.  We rec'd +20cm (about 8") overnight and another 20 cms coming today.  SOOOOO glad I don't have to shovel.  The OPP (Ontario Provincial Police- like your Staties) told everyone to stay off the roads, if possible...its nasty.  I live along the 401 corridor (the busiest hwy in North America, if you can believe it) and the OPP have shut down major sections- lake effect snow, blowing and accumulation have taken visibility down to zero.  And its supposed to be a temp of +7 by Monday...wierd-ass weather...and if you Southerners pop in and tell me its 85 degrees in the shade where we are, i swear i will hop on a plane and drag you back to live in my garden shed...after i hit you!  (joking- i don't want to pay your airfare...and if i go someplace warm, i will not come back...)

Debbie- is your Skigirl72 your birth year?  If so, we're both 1972 babies.  I don't know why i LIKE finding younger people with bc...i don't WANT you to be here...but its nice not to be the ONLY one, too...

And i got my BRCA testing paperwork in the mail today (go posties delivering in the snow!!!).  They want to test me because of my age and grade 3 highly agressive f'ed up bc cells.  yeah.  Thing is, NO ONE in my family has this.  Only immediate cancer in my family is my grandfather who died of lung cancer in his 70's after smoking for 60+ years.  Other than that, the only cancers are siblings of my grandparents, born in the 20's and 30's.  Some died of lung cancers- they lived in Thetford Mines, Quebec- world's #1 producer of asbestos for almost a century.  No one knew that free floating asbestos IN THE AIR for generations woud cause lung cancer.  You used to be able to pick floating balls of it out of the air with your hands, like cotton candy...so no great surprise on lung cancer there.  The other cancer deaths were liver cancer- heavy drinkers.  So i'll do my BRCA testing but i'm REALLY hoping for a big NEGATORY.  Totally suck to finish up this crap-tastic round of chemo and rads to heal up enough to go for BMX and a full hysterectomy.  That said, you do what you gotta do (and kudos to those of you who have already done it) but givien the option, i'm putting in my request NOW for BRCA NEGATIVE. 

Off for Neulasta #1 this aft...thankfully the hospital is only a wee bit down the road...normally a 5 minute drive.  Gonna try and get them to FINALLY give me my receptors today, too.  I put in my order for ER/PR+ and HER2- so we'll see how good those docs are at following orders.    xoxox Shan

milkyway2

Good to see you around smetthot im from canada milton close to cambridge and this may i will b 39 i m done with texotere #4.i was on bed from the last week i really wanted to go out side for a change i am stuck snow day today so kids are home

hope49

chemobiyatch...so glad you joined our group!  Your blog is hilarious and I think fits the humor of our 'crew' nicely...ladies, be sure to check it out!

Shannon, it's nice you call us 'normal' LOL!  I like to think we're exceptional  Based on some of the other boards I've peeked into I do think we are having a lot more fun here and I'm so happy to be a part of it!

regarding twitchy eyes, I do have that and am not using any eye stuff...from what I've read it's a kind of nerve SE from the taxotere which will eventualy go away after treatment, in the mean time I did wonder if the older gentleman sitting across from me at the MO today thought I was winking at him when I said hello...never a dull moment!

Anonymous

I'm at the Stephanie Spielman Breast Center. Today is my last dance with the Red Devil!!!!



I asked the nurse if they were going to put silly hats on and sing & dance or something. She said not until I finish the 12 weekly taxol. Oh well.



I was disappointed when they told me the SEs are pretty much like AC 3... Holy Crap!

Not that again!!!



Shannon, I hope your week continues well.



My son, Shawn, who brought me today, just went to get me Chinese for lunch. Yummy!!!



Blessings

Paula

Nicole503

Paula - So glad to hear you are there and ready to get your 4th AC infusion over with!  I threw a private party for myself when I walked out yesterday, and made a commitment to bring flowers for the infusion nurses when I am completely done with chemo.  My nurses are so great! 

I keep a caring bridge blog about my breast cancer experience.  It allows me to keep family and friends who want to know in the loop without having to innundate everyone with my story.  Here'a a snapshot of what I wrote today: 

Right after chemo I always feel like I am standing at the edge of a downward spiral, unable to see how far down the bottom is.  With each round, I've experienced a deeper, more difficult bottom and I don't expect this time to be any different.  What is different is that I really learned some things the last time:

1. say no to every obligation/"new opportunity" I can and rest, rest, rest. 

2. Hydrate, hydrate, hydrate. I'm sure I will pay for all the Odwalla Mango Tango I am drinking when I bother to care about the scales, but for now, it is nectar of the Gods!

3. Good sitcoms are a good distraction and the best medicine!  Downton Abbey is also a phenomenal distraction, best shared with Tim & Jazz.

4. Call my oncologist's office when I BEGIN to feel a new kind of bad, don't wait until I am good and truly suffering ~ there is no need to go there if they have a medication that can help. 

5.  Find and share the happy stuff that happens in the midst of the journey. The picture I got today from Corrina's teaching assistant is a case in point. (My oldest daughter is autistic and I am thrilled that she is making new friends in high school) So was Sierra's locker project at school last week. (My middle daughter coated all the lockers in her K-8 school with "You're beautiful" post it notes).  So is Jasmine's (my youngest) adorable absorption in the Twilight series, which provides many a quiet contented evening in our living room as Tim does a puzzle and she reads next to him on the couch.

With experience comes wisdom and I am counting on this wisdom to see me though the next week. Wishing the same for you!