Who is starting chemo in September 2016?

Sr2295

Hi everyone,

First infusion day was incredibly long day - but not as horrible as I expected. I'm headed to my MO office for neulasta shot this afternoon. Feeling ok but waiting for the se to kick in. I'm not sure about when to go in to work. I guess I just have to see how this cycle goes.

Sam - glad to hear things are improving!

VLH - stay strong- you'll do great!

AngelaKS - glad you're starting to feel better- great info that the neulasta se may decrease in later cycles

Have a great day everyone! Hope everyone has at least one really good laugh today

lmencken

Acs74..thanks for your candor..Guess I will play it by ear!?? I have 2 coworkers here who worked through chemo...so I think my boss will think I should too but the D is a deal breaker..I have to see patients for testing so..awkward if I run out!

Lisbeth...haven't had that test yet so maybe if it's positive I will go your route. I cannot believe tamoxifen will be worse...really??? Ugh....that's such a long term thing! I really hope not.

Sam...wow..you are such a great advocate for Emily..wish we could all have one of you!!!

KD..still thinking of you on your first day..hope all is well!

Bagsharon

I have an embarrassing chemo brain story to share. The dreaded diarrhea started yesterday afternoon. I tried my hardest to just tough it out because I really, really do not want to add any more chemicals to my system but after a full nonstop 24 hours I gave in. I went to the grocery story around the corner from my work, got some coconut water, some cheese, some baby wipes and then perused the aisle of intestinal woes. I looked at the prices of generic pepto and saw that the bottles of milk of magnesia right next to them were half the price! Score! Get back to the office, swallow a swig and then proceed to read the bottle. It's a laxative.

Right now I feel the perfect storm brewing in my gut. It's going to be a long night.

LisbethS

Oh NOOOO Bagsharon, that sounds like something I would do. Can you get a friend to buy you some imodium and try to counteract it?

Here's my D tips to prevent a sore bum from my gastro. TMI Warning: My gastro gave me these instructions years ago for preventing my bum from getting sore with colonoscopy prep and it has worked great. I'm just recovering from 5 or so days of bad D from chemo and my bum didn't get sore once. My tummy was a different story.

Use Balmex (white thick diaper cream), not vaseline, not Aquaphor, only Balmex. There are probably diaper rash creams comparable to Balmex but I don't know their names. The key is Balmex is a THICK zinc oxide diaper cream NOT a petroleum based ointment. Anything but zinc oxide based cream, wipes away too easily and doesn't provide a barrier of protection. The barrier of protection is the key. Slather a large dollop (don't skimp) of Balmex right on the opening (for lack of better word) and leave it there. After you clean up from each episode of D, slather the Balmex on again (and after showering). Use cotton flushable wipes only, NO paper toilet tissue at all. If you already have an issue, follow the above but also use Cetaphil Cream (comes in a tub) on a flushable wipe to GENTLY clean your bum instead of plain wipes. Balmex is in the baby diaper cream area of Target, maybe Walmart. I buy mine in a tub so I don't run out and don't feel inclined to skimp. It sometimes is hard to find and I have had to get it at Babies 'R Us and even Amazon. This has gotten me through my last few colonoscopies without a painful bum. And no, I don't work for the Balmex company, LOL!

Dennyj

I am joining the September 2016 group. I am receiving a port on Monday and begin Chemo on Tuesday, the 20th. Anything I need to know about the port? I have read some of the discussions....but what is something important that I need to bring with me on Tuesday for chemo...Has anyone had any luck buying hats / beanies / scarves?

Ware

Tomorrow is round 2. I am really hoping for a nice easy ride.

Welcome Dennyj! Sorry to meet you this way. The port was not too bad. Kinda sore for a day or two. No biggie. It's been two weeks since I got mine. Still is tender from time to time. Can kinda sleep on that side finally. For chemo I took water, comfy socks with nonskid stuff on the bottom (I went to the bathroom a lot because of all the fluids they pumped in me). Extension cord for my electronics. I took reading material but couldn't really focus on reading. I took a snack. Hospital provided lunch. Take a sweater or jacket. I was cold. I got some wigs on a going out of business sale at chic wigs. They need trimmed up a little it think to frame my face better. Haven't made it that far yet but I better step it up. My hair is shedding. I got some cute hats from tlc. Haven't gotten any scarves yet.

I will report how round 2 goes tomorrow.

Hahlyn

-BagSharon that would totally be me..already a little absent minded...scared to see how the chemo will effect my already absent minded brain. Will start my chemo next Wednesday September 21.

Sr2295

welcome Dennyj - I brought my iPad and charger ,phone, and some work.also, hospital had great wifi and individuals each have a tv. They supplied water, breakfast and lunch. I also brought some flavored waters and peppermints. Lots to keep you busy the first time. Good luck with the port - tell us how it goes!

Bagsharon sounds like something I could do -hope you're feeling better.

Ware hope all goes well tomorrow

Anyone have a timetable on se after neulasta?

Trying to figure out a tentative schedule for work.

Hahlyn good luck on Wednesday!

seq24

DennyJ-welcome to this board. The more the merrier I guess, all things considered. Sending best wishes for your first chemo. I agree with the other ladies of what to take. I packed a whole bag and didn't use any of it. No time to read because of so many interruptions of running to the bathroom! Infusion center provided drinks and lunch. The only thing I wish I would have had was a jacket. I had a blanket but a jacket would have been so much better. Will remember next time. As far as the port, it was tender for awhile and it was hard to get comfortable to sleep. Mine was put in during surgery a month ago so it had plenty of time to heal before they accessed it the first time. My best advice for you is to drink a lot of fluid before, during and after your infusion. I was told to drink 2-3 quarts per water a day anyway, but that day I know I drank at least 4 quarts. I really believe it helped a lot with the side effects. Which chemo regimen are you getting?

misslil

As far as the Perjeta with TCH before surgery, I'm not sure if that is universally added or at the discretion of the team. 

In my case since I had extensive treatment for DCIS 8 years ago including mastectomy + radiation + 5 years of tamoxifen and still have a new BC this year on the same side I had the mastectomy (uncommon but does happen), they aren't holding back a lot trying to kill it off again.

Labs were good today which was a big relief. MO said more than likely SE types for round 2 and all the rest should be variations on what I saw the first time, not anything wildly different. It would be nice if that's the case so it's at least more predictable which should help manage. One of the more bothersome things I had with the D which contributed to dehydration and weakness. For this round, I've learned to take more Imodium than I was originally to try and stop it.

Had a surprise with the port - it worked fine through everything in round 1, but did not work today for the lab test.  The nurse tried several iterations of flushing it, having me maneuver into different positions, etc. to promote the blood draw. Nothing worked, so she wound up doing a normal blood draw out of my arm to get the labs.  They are going to try running an anti-clotting medication early tomorrow to get the port working again so I can have the treatment. Not sure what plan B will be if that somehow doesn't work.

I attended the LGFB class tonight. It was fun and useful, very pleasant team presenting it. Only thing was I would have liked it a little earlier in the day, didn't make it hope until after 8 pm which is tough these days.

Kechla

Misslil. 8 years was the magic number for me as well. I often wondered if I should have had radiation or tamoxifen at the time... But they said they had clear margins and it wasn't advised. Mine came back in the same side and same place. Looking forward to the day when a blood test or scans will reliably identify any remaining rogue cells. Due to family history (but thankfully no genetic markers), my daughter will have to start being screen in her mid twenties. Hoping for better screening by then.

Good luck with your port tomorrow

Sr2295

misslil - glad the labs were good!

misslil

Kechla, it's hard to know what to blame these things on. I don't have any family history of BC other than myself, and when I got the genetic testing back in 2008 it didn't show anything concerning.  Eight years later, not sure whether to view the new case as something from the original deal that wasn't fully killed off.  Or more instead that whatever made me disposed to have it the first time, is still around enough that I could get it again. And the odds of getting it could have started to increase as I went off the tamoxifen as the last active countermeasure.

On the other hand, some chance I could have gotten a major risky SE from tamoxifen. I had a high level endometrial pre-cancer in 2013, which was treated with a full-up hysterectomy taking pretty much everything out down there. The gyn pre-cancer was a listed side effect for tamoxifen in small percentage of cases.  But could have been caused instead by who the heck knows

lmencken

Welcome Dennys and Hahlyn

Bagsharon..sooooo sorry....hope lisbeths helpful hints work for u!!!!

Ware good luck tomorrow..going for my first tomorrow so will be thinking about you in PA...Thanks for the sock and jacket heads up!

Kechla

misslill. I know. I am also worried about tamoxifen. MO is recommending 10 Years. I already have endometrial adeneomiosis. MO says I can stop immigrants my symptoms get worse. But there is a chance it could also make them better. Fingers crossed. Wow. Wide awake tonight after a day of steroids... Usually sound asleep be 9:30.

Kechla

good luck tomorrow Imencken!

lmencken

Kechla and Misslil..did ypu guys have LVI do you know?? I am doing this chemo trip because of that..and I had a similar oncotype as u Kechla...and thanks for the good luck!!!

Jiffrig

misslil, your new diagnosis seems more common than any one would think, at least on these boards. Most go from Her- to Her2+. Do they think you were misdiagnosed at first and thus not given correct treatment? Or do HER scores change over time. Sorry for your new occur acne, but you know you can do this again. That was a long time between.

Seq...look at you all confident and giving advice! We told you that you could do it!! Glad you are having a good time of it.

I am half way through treatment. Done with A/C and on to DD Taxol. Hair is hanging in there (PCC) but has been shedding lots. Through all up to today's labs, I was doing great on WBC and RBC, but now have lower than average red and hemoglobin. So I am anemic...bring on spinach and liver, yum! I have shortness of breath going up stairs and dizziness for those of you playing along with the s/e game! I think taxol is easier, adriamycin kicks butt and hair! Glad it's over

ACS74

Welcome to all the new faces I've missed.

Lmencken- As evidenced in this thread, everyone responds differently to chemo; it would be very unfair of your boss to have any expectations of you. My advice, listen to your body and do what you are physically able to do. I wanted to work through it and my boss pleaded with me to at least stay home through the first round. I'm so glad he made me promise that I would. They would have been paying me to sit on the toilet and sleep, lol. Best of luck for a smooth treatment tomorrow, I'll be thinking of you and also WARE. You ladies have got this. The blanket/jacket is a must have. I had to have two blankets. I took water and juices in a cooler because I had no idea our center had anything. I also took a book but couldn't focus. My best take along was my baby girl to talk me through it all and keep me laughing.

Sam-glad Emily is doing better!

Michelle-Sorry the big D has hit you, too!

Bagsharon- Oh my goodness! I'll take the blame for that one for mentioning it and getting it in your head. I hope your visit with the throne isn't too lengthy. Refrigerate that mag and you can use it if your bum gets too raw. The diaper ointment works (I used that, too,-bourdreoux's butt paste works wonders).

LisbethS-you're an endless wealth of knowledge and I so appreciate you sharing it. You can find Balmex in the tub at Winn-Dixie if you happen to live near one.

Sr2295-For nuelasta SE-In my case, the minor pain started within hours, the heavy pain within 24 hours. Make sure you're taking the claritin. For me, motrin just didn't cut it and on the advice of my MO I switched to hydrocodone leftover from my surgery. That made it so much more tolerable. When the pain meds wore off I soaked in a tub of warm/hot water to ease the aching. You may get lucky and not have any pain. Mine lasted for 3 days and then transitioned to muscular pain for the next 24 hours.

seq24- holy shakiness batman! You are so right about the steroids. I may hulk out before my 12 day sentence is up.

Jiffrig-HALF WAY DONE!! Hang in there, you are phenomenal.

Kechla-I'm with you on the wide awake after steroids kick. May we both find some peaceful sleep soon.

Misslil-I hope they can get your port working with no problems. I freaked when my MO suggested one yesterday after reading all the stories on here and talking to my sis-in-law. I only have three sessions left, I want the IV route to work so bad.

Update on Se's- I'm on the upward trend. I have noticed a decrease in body hair as well as some minor shedding. I have been experiencing the worst breakout of acne I've had in my entire life (face, neck, chest, back and arms), which my hormonal preteen son finds quite amusing, as well as some redness and soreness at my IV sight. My MO said that I had a reaction to my chemo and prescribed steroids yesterday. I'm already noticing a decrease in redness from the first dose. Unfortunately, it brought back the D, but I do have a prescription for that now if needed. Major shakiness, and just an overall feeling like I'm weak, when I know my legs are strong. I went for a short walk today it was nice to get out and enjoy the sunshine.

Sweet dreams ladies and gents!

Kechla

lmencken, not sure on Lvi. On my first diagnosis they do sentinel node biopsy but did not find any evidence of lymph invasion. The 2nd time they did not do a node biopsy because my lymph have passageways were destroyed by my BMX. We did ultrasound and radiated the lymph nodes, just in case. Makes me nervous..

LisbethS

Imenchkin, This is probably too late, but this is what I bring and use: I've only had one infusion but I've had 4 IVs each 2.5 hours, so I've spent a lot of time there.

Ipad and headphones (with movies uploaded), Kindle, phone, reading glasses, small antibacterial gel (to use before eating a snack), a small snack (my place supplies them at my place but I like to bring my own), water (again they supply them), mints or lemon drops (when they flush the IV between meds, it gives you a bad taste in your mouth), warm socks, light jacket, shirt that allows easy access to port if you have a port, small lap pillow for propping iPad on for movie, small tissue, and chapstick. I don't bring a blanket anymore because they have as many warmed blankets as I want, and nothing beats a warmed blanket. My place also supplies ice chips.

Not sure I'm going to ice next time but if I do:

2 oven mitts to put ice in for icing my hands, they supply the ice bags

2 ace bandages for tying ice packs onto bottom of feet, they supply the ice bags

Jiffrig

lisbeth, what are the infusions for? I have been threatened with that for dehydration.

Ware

All hooked up. Lots of shedding this morning. I told my husband it is a trifecta day. Chem day, started my period and lots of shedding. Guess it all in one day makes for only 1 bad insread of 3.

seq24

Ware--good luck today. Sending best wishes. Keep us posted. Is this your second infusion? My second is next week.

ACS74

Ware-positive vibes and thoughts sent your way!

ACS74

Not cancer related at all, but have you guys stumbled upon the SILK Nutchello? I got the caramel, almond and cashews milk and oh my goodness! I put it in my banana and peanut butter smoothie this morning and it almost made it non-disgusting. I really hate bananas!! I hate D even more, so it has become necessary ;0

Sr2295

hi everyone

Sending good thoughts your way Ware

Thank you Lisbeths I am stocked up with Balmex now!

ACS74- thank you for the neulasta info. I'm doing pretty well so far but haven't hit the 24 hour mark yet - thinking positive thoughts! I'm taking my Claritin. Last day for steroids today so I'll see what tomorrow brings....

Going to try the SILK - sounds good

Going wig shopping- feels kind of strange to try to figure out how quickly to do this

lmencken

lisbeth..not too late..I am so prepared..I am coloring now getting 2nd med...so far so good..lots of instructions but I already knew it all from you guys!!!! Thank goodness I could digest this awhile before 1st treatment! I forgot to ask about neulasta though..gonna flag a nurse down! Thanks so much!!!!

Ware..good vibes to you also!!

ACS74..thanks ..I will play it by ear at work..true it could be very different for me.

Kechla...take it day by day..move forward with your plan and know you are doing everything you can...positive vibes coming your way...

Kd...how are you doing..hope you are well

Bagsharon..hope you are feeling better.

Hugs to all!!

Feeling foggy now halfway through!

Bcrohde

Hi there - I'm new. I've been a stalker of the board for a week or so but am biting the bullet and actually writing. First board post ever for me...I guess cancer does weird things.

I started chemo 9/8 and I have to say I'm a little surprised and discouraged at how bad I feel. I'm normally pretty active, like go to the gym 1x a day active, I love my exercise classes - they're my hobby, but I feel like I've been run over by a mack truck. My MO said the TC chemo was a "more doable" chemo and it would be easier to deal with...really most days I want to call him, yell "liar!" into the phone and hang up. But then I remember I'm 44 and probably shouldn't do such things. Plus let's be honest, they don't answer their phones anyways.

Anyway, my chemo was on a Thursday - Thursday night and Friday were rough (um, hiccups & heartburn, for one. seriously?) but I thought the weekend was doable. We went for a short hike on Saturday and while I huffed and sweated more than usual I could do it. I had general nausea and lack of appetite all weekend but forced myself to eat and drink as much as possible. Then Monday came and bam. Things haven't been the same since. I've had what you all refer to lovingly as the big D, fatigue, still having nausea, etc. I like to describe it as morning sickness meets the flu meets food poisoning. I have a pretty slack job so I'm going to work every day, really just to keep my mind off how I'm feeling. I tried going to the gym on Monday but paid for that Monday night. Last night I slept from 6-6. I just keep waking up telling myself "today is the day it gets better!" (exclamation point for forced enthusiasm)...which I hope it really does.

I didn't mean my first post to be such a debbie downer - I do think it's going to get better. I guess I was a little cocky with myself in that the chemo wasn't going to be that bad. I am a little worried it will be even worse the next time but I'm 1/4 of the way there. Oh, my hair is definitely shedding more than normal - I saw a bunch of it in the shower and thought surely it was someone else's bc it seems too early for mine to go but considering my husband has short hair and my 9 yo son never showers, well, it must be mine.

Cheers to everyone who is here - it's a great place to hear your stories and know that we're not alone. This afternoon I'm going to swing by the Walgreens and get those wristbands and my new script for compazine - oh, does anyone go loopy on Zofran? I swear I shouldn't even drive on that stuff. And I'd like to hear more about acupuncture - I went this week and am planning on going at least 2-3 xs the week before my next chemo. Just curious what others have done.

Thanks

lmencken

Bcrohde..welcome..you have same.meds..and doing this Thursday..so will be wary on Monday..lol....thanks for sharing..and please vent..no judging here..we.can pump ypu up when needed or vice versa!!! Wow I am foggy. Is this normal . weird

Anyway...I am now a.wig hog as they ordered me another free one during treatment...I feel bad..but it's out of a catalogue so I thought it would be good in case one stinks....