June 2011 A/C & T Groupies Unite!

716bobbiejo

Hi, everyone!  I started Taxol on Thursday, 6/2/11.  I'm having 4 Taxol, followed by 4 A/C.  I was supposed to get A/C first as that is typical protocol, but evidently there is a shortage of A/C, so my onco switched my treatment around giving me T first.

Let's use this board to discuss side effects, emotions, provide support, whine, share good days & bad days!

Welcome aboard!  Together we'll make it through this! 

dsnydawn

Hi Bobbie Jo, Thanks for starting this thread.  Well I'm getting my port wed and will start my A/C next wed.  Getting more and more nervous as it gets closer..I really haven't let myself cry too much (only in the shower..is my rule) figured I don't want my kids upset...but I have been very emotional this week..I guess it is the fear of the unknown...well that is why these boards are so important to us all..no one else can understand our "language" and it's helpful to vent sometimes too!! thanks again

716bobbiejo

Welcome, dsnydawn!  I wish I had some words of wisdom for you regarding A/C, but like I said, my treatment has been reversed.

I wasn't sure if I'd lose my hair with Taxol or not.  Well, this morning in the shower I started shedding.  Just now I got a handful out.  I thought I was prepared for this, but now that the time has come, I'm super bummed... 

neecee

bobbiejo - I just popped over to say "way to go" for starting this thread.  You will find the mutual support from people on the same chemo cocktail to be a great help!  See you around on the other boards!

LuvRVing

Michelle's here, and I am starting on Wednesday.  I had my port surgery this morning and so far, so good.  It's not too uncomfortable and it's bundled well.  The surgeon left the needle in so they wouldn't have to stick it on Wednesday, an interesting concept.  I guess I won't be sleeping on my right side tonight.  And the left side (BC side) hasn't been comfortable since my BMX with TEs. 

Bobbie Jo - I had my hair clipped down to about an inch or less yesterday.  There aren't very many things we can control along this journey; I decided to take on the hair issue on my own terms.  I have a great wig, and my family seems to be getting a kick out of my salt and pepper color, which had been seen only by my hair colorist.   When the rest of it starts to go in a couple of weeks, I'll be ready with a lint roller.

Michelle

cider8

Thanks, Bobbie Jo.  I have 4 rounds each of AC and T, every 2 weeks.  I had my first AC this past Wed and I've been wiped out.  My infusion itself was not bad.  I think I was wired from the steroids and I made a friend so I spent most of it talking and laughing.  I don't think it's going to be quite so fun later!  I was feeling sorry for myself today, feeling SO tired.  I'm honestly not sure what to expect!  I can't keep from crying in front of the kids, though I really try to manage it so as to not scare them.  My 10yo is on the autism spectrum and I'm not sure what she gets.  She did ask me Saturday, before she left for the weekend, if I was done with this 'weird stuff' yet.  Something is getting in there.  I know it can't be easy for them to see me sleeping a lot.  My 7yo has been giving me lots of hugs.  She's surprised when she sees tears on my face.  I explained to her that the medicine will make me tired and hurt for a while then it will be done.  She seems to accept that.  I found when I pushed myself it backfired on me.  I simply need the rest!  I've been needing 2 naps a day; I'm like an infant.  I was sobbing to my husband earlier and he sort of chuckled and said of course you are tired!!  You're getting chemo!  The Dr told you you'd be tired, etc.  Yeah, well, it's still hard to accept being sort of helpless.  My husband is really stepping up to the plate though.  

I feel like Mr Burns from the Simpsons.  I feel so weak.  Not what I expected.  I had a hard time plugging into one of those safety outlets---that really pissed me off.  lol  I have been walking the past 3 days.  It's slow, but I did walk over 2 miles this evening.  I find I have more energy in the evenings.  I start PT for my mastectomy pain tomorrow.  I've been able to prepare my own simple things to eat and church is delivering dinner twice per week while I'm on chemo.

I didn't answer the phone calls from the infusion office today!   She left a nice message checking on me and hoping she wouldn't hear from me, but to call if I had questions or issues.  

I'm shaving my head into a long mohawk later this week, or weekend.  I'm going to let my girls and nephews color it, too.  I need to make a party of it!  Port goes in next Monday.   

ThingsChange

Hi...Starting AC this Friday 6/17 every two weeks, 4 doses followed by Taxol every week for 8 weeks - then radiation. Scared to death I can hardly breathe.  Side effects sound so horrible. I am so happy that I found this forum, there really is alot of good information and support. I guess everyone is scared before they start but it's such a lonely feeling.  Praying for strength for all of us.

716bobbiejo

Well, ladies.  The hair is gone!  It started falling out yesterday, so I went to the salon & had it shaved.  I must admit, it's pretty freeing to know that I took care of it myself instead of dreadfully waiting for the clumps!  I'm a happy girl today!

716bobbiejo

Cider8,

LOVE your hair plans!  Might as well make it fun, right!  :0)

I also like your reference to Mr. Burns.  Hilarious!

Glad to hear that you have such a supportive family.  Your children sound just wonderful!  Where is your 10 year old on the spectrum?  I teach special ed & have a tender place in my heart for special needs children. 

singlemom1

I finished my first round of a/c yesterday and so far so good. Was very tired yesterday but that could of also been from lack of sleep the night before. Overall feeling good. I am off to feeling food looking good today and then my shot. thinking of you all

dsnydawn

Thingschange - I'm right behind you!! I feel like I'm in line for this giant roller coaster and I can't get off... (actually wish it was a rollercoaster, as they only last a few minutes haha)

Singlemom - glad you didn't have too many se..hope all goes well today too : )

Did anyone buy clippers to do your hair at home? wasn't sure if I wanted to go somewhere or try to do it myself

singlemom1

We can all get through this together! It is nice to have support of people who know what it is really like. Feeling off today - minor flu like symptons - but could be worse. Very tired and bad knee pain. You are all in thoughts! Praying for minimal SE for all of us!

716bobbiejo

singlemom1, Ssssooooo thankful that your SE's seem minimal & your spirits seem a bit brighter!  How are things going with your child???

dsnydawn, I didn't buy clippers because they're just not something we would really ever use again. My "cut" cost me $12 at our local JC Penny Salon.  About the same price as clippers.  :0) 

cider8

Bobbie Jo, my daughter is high functioning on the spectrum but not aspergers.  I'm blessed to have awesome teachers for her.  She spends a couple hours a day outside the classroom.  She's made great strides this year with writing (putting pencil to paper) and is finally at grade level reading.  She's graduated from speech therapy but still meets with the teacher for language/social skills.  I think all her medical issues (deaf left ear!  severe seasonal allergies!) helped me to to be a great advocate for her, in turn making me a better advocate for myself now.  Thanks for asking.  I think most special ed teachers are a blessing.  I am a grateful parent.

I was reading some more about the A.  I think I was under the illusion it wasn't the ass kicker that it is.  It's hard not to compare myself to others.  But take heed:  don't do it!  I think even just yesterday i was trying to be superwoman.  Now I feel more accepting that it's going to be hard but I CAN GET THROUGH IT.  So what if it's sleeping through 4 days or napping every day.  My body is being hurt and I need to let it heal.  It is temporary.  My body is not your body.  My body has a great capacity to heal and I am grateful.  I say a lot of prayers.  One day at a time.  Accepting some of those things I mentioned has helped me release some of that fear.  When I can recognize my thoughts or behaviors are fear-based I can with-hold the power I give to fear and re-direct that power to somewhere else positive.  I actually find myself laughing a lot and smiling a lot.  The time I spend crying or reacting fearfully gets shorter, I think (I hope!).  

I haven't bought a clipper because my sister cuts her little boys hair with a clipper.  She has a Flo-bee, too!   

FGCUfan

Hello all, I had my mediport placed today & will start A/C every 2 weeks X4 then T X12.  on 6/23/11.  I'm getting the haircut tomorrow but unsure how short!  Just ready to get this going.  Is everyone having Neulasta the day after the chemo?

I know it's gonna be a bumpy ride but I'm in to win it!!  You'll all be in my thoughts.

Suzanne; Dx: 5/23/11 - Metaplastic BC with modified radical mastectomey on 5/26/11.   4.5cm Grade 3, 4/18 nodes, triple negative & HER2 FISH neg; Ki-67 100% ; Stage IIIA 

dsnydawn

Hey Suzanne, getting my port tomorrow...more & more nervous... I'm getting the neulast shot the day after also (I start on 6/22)  Are you getting emend? they are giving me something else ,but when I asked about emend (which everyone raves about) she said if I had a problem I can switch to that...I feel the same way as you, lets get this started so we can finish!!!  Well hoping we are all SE free!!!

ssmith37

Bobbie Jo, thank you so much for starting this thread!!  It's exactly what I logged on to look for, lol.  I met with my oncologist for the first time yesterday and he gave me the news that this is my regimen, dose dense, every two weeks.  I'll get started right after the July 4th holidays.  I'm so sorry you started losing your hair already.  But then again, that's just one more anxiety you probably don't have anymore.  Always a bright side, right?

FGCUfan

I was just going through the mound of paperwork & realized I'm also going to be getting Gemzar.   I haven't had time to study up on it but I missed it somehow.  Hang in there.  Gemzar is an additional chemo drug.  The antiemetic I'm using is Zofran, looks like I'll take it just before startnig the chemo & then every 8hrs as needed plus she gave me a scrip for Compazine which is an old drug but has been pretty effective.  Sorry for the confusion.

ThingsChange

dnsydawn,  I had my port put in last Thursday, very uneventful, don't be nervous about it. It's been just sore but not painful.  I read Claritin helps alot with the SE from neulast shot so ask your dr about that. I have a prescription for Emend...I get nausea easily so hopefully that will help. I have my first treatment this Friday, high anxiety for sure.  Such great info on this forum, it has helped so much.  Hang in there, praying for all of us.

LuvRVing

I will be leaving for my first treatment in about 30 minutes.  I'm bringing my laptop and will chronicle the events so you will all know what to expect.  I'm scared silly, but I find that blogging helps me cope. 

ThingsChange - I heard about claritin, too.  And I plan to take one this evening, and the next two nights.  I asked my doctor and chemo nurse about it and they said it won't hurt anything.

FGCUfan - I think everyone on the DD plan gets Neulasta.  There's not enough time for a natural recovery before the next treatment.  I got my hair cut on Sunday - it's less than an inch long.  If you want to see pictures to get an idea, you can check out my blog at

www.mch-breastcancer.blogspot.com

I'm hoping it's short enough that I can use a lint roller to clean up the fallout mess.

Dsnydawn - I went to a salon with my two daughters and my best friend for my cut.  My daughter also had hers cut for Locks of Love. She's been growing it for a year, so she had more than 10" of ponytail.  We had wine, cheese and crackers and strawberries.  The stylist is a friend of my kids and she was wonderful.  It was nice to have the place to ourselves, and I handled things fairly well.  I keep telling myself it's just hair, and it will grow back. 

Cider8 - you're right about giving in to the need for rest. I am not a napper -  I've been fighting breast cancer for a year and I've probably taken two naps since starting this journey. It's about to change, though. And I bought a new sectional sofa with a chaise so I can do it comfortably.

I'd better go pack up my supplies. I hope everyone has a good day.

Hugs,

Michelle

marial

I saw this thread and wanted to stop by even though I finished my chemo almost 2 weeks agp..I just wanted to say that I have very little side effects from the AC..no nausea, no taste alteration..just mainly hair loss and a lower WBC..Everyone is different, but I just wanted to say it's not a horrible cocktail for everyone..I even still went to the gym 4 to 5 times a week



I know how you feel where you ate at now..I felt like I was going to be homebound..but I was pleasantly surprised ..and I hope you all will to..best wishes to you all

ThingsChange

Marial, thank you so much for posting that.  I am starting on Friday and am terrified of the side effects....it is so encouraging to hear your experience.   My dr prescribed Emend along with two other meds...I'm hoping that keeps the nausea in check, that is one of my biggest concerns.  Thanks again and congratulations to you, enjoy yourself now, you deserve it!!

LuvRVing

I am home after having my first treatment today.  The treatment itself was long but a non-event.  I've got enough anti-nausea meds that should get me through the rough days (Aloxi, Emend, a Scopolamine patch and 6 mg of Decadron).  I chronicled the whole day and will post it on my blog later today.  My chemo nurse Lisa is very nice!

Marial - thank you for your post!  It gives me hope that I can get through this with minimal side effects.  Did you get a Neulasta shot the day after treatment?  I will have one after every treatment.

Michelle

cider8

It's been one week since my first infusion.  I feel much better today than I have in the past week.  No nap!  I think my main side effect has been the fatigue.  I'm grateful for others chiming in about their experience.  I think it helps me to realize that there are various degrees of side effects.  

I did get a lot of soft tissue work done at my first PT session today.  I still have pain from my mastectomy.  Hopefully working on that will only help with my chemo side effects.  Just one session has been amazing.  

I have no idea how to differentiate between Neulesta SE and chemo SE.  I think I'll be eager to see what my blood counts are next week.  

Dawn, let us know how getting the port goes.  I get mine Monday.  I'm just wondering what kind of nuisance it will be for the two days it's left 'open' for my Wed infusion.  

marial

LvRVing - no, I had neupogen shots for 7 days following each treatment..each treatment was ever 2 weeks..



As far as anti nausea meeds, I received zofran and decahedron as premeds, then took those for 2 days after. I also had compazene and Ativan to take as needed

LuvRVing

Still doing ok after dinner.  Hubby made boneless pork chops, salad and cole slaw.  Thirty years of marriage and now I find out he can put a meal together     For those of you who have not yet been in the chemo chair, here is a link to my blog which outlines how my day went.  I am guessing yours will be similar.

www.mch-breastcancer.blogspot.com

 Wishing everyone a good day!

Michelle

FGCUfan

dsnydawn, I received  my Emend today to go along with the Zofran.  looks like I too have enough antiemetics to handle the nausea.  Now my worry is how to pay for it!  I'm on Medicare & in the donut-hole.  My price for 1 3 day dose was $183 just for Emend, the Zofran was $35.27 for 60 tabs so I may have to stick with that one after this time.  I'll discuss with onc later.  Also as sore as the port site was yesterday after the insertion, this morning it was fine & now it's only tender if I bump it.  I'm sure yours will go as smoothly.

Michelle, I had my haircut today & it's about 1"-2" & I love it, don't know why I had let it grow out before. 

Tomorrow is Chemo Boot Camp--someone has to teach me how to play well with others.  I went to school for 18+ years & I still have trouble with that.  I have lots of questions but I'm sure they have lots of answers.

Hugs to all, let's have a good night & aa great tomorrow! 

ThingsChange

Michele, I read your blog. I am so happy you had a good first day.  I hope your night went just as well.  I start tomorrow...ugh, so much anxiety. Keep up the good work and keep blogging, It helps so much.  Wishing you a wonderful day, it's beautiful here in Connecticut.  Cheryl

dsnydawn

Michelle, Thanks for the blog & pictures (love the pink laptop!!) so glad you have your daughters and great husband.  I was living on Long Island (my mom re married & moved to upstate NY 10 yrs ago) but luckily this past Feb my husband got a transfer (still an hour but better than 4 1/2) and March 5th I felt the lump...just so grateful to be closer as we were never more than 4 blocks apart since I was married.. and as far as my husband...boy has he really stepped up..I heard him talking to men in our family and they asked him after my surgery how he was doing, he replied, it's really tiring to be Dawn!!! (I should have gotten that on tape haha) I'm thinking about doing a blog, never have, but seems like easier way to let everyone know details without getting lost in translation (my mother is famous for that)

FGCUfan -  You know I do remember the nurse saying something about the cost of the Emend During A/C I start with Aloxi (iv),decadron (premeds) compazine & ativan at home as needed

I also have to take Zantac everyday for my entire chemo..anyone else

and of course Neulast shot on day 2 during A/C(is this when you took claritan?)

During Taxol  - Premeds  Decadron,Aloxi, Pepcid,Benadryl

Well did have my port placed yesterday...being bumped an hour and my IV were the worst part..everything else was pretty uneventful.  I had my 8th grade son's graduation last night and didn't want anything in my way of getting there...I was still a little drowsy and slept like a baby last night.  I joked to my husband that now my boob wasn't bothering me at all as the port was sore lol.. this morning it is tender but manageable and all nurses told me that they would def do the same thing and when all is said and done I will be thankful to have it...well so glad you all seem to be doing good!!! I hope & pray I do too!!!

LuvRVing

Thanks,Cheryl.  I did well overnight, except I woke up extremely thirsty around 3:30.  I knew that would happen because I'm wearing th Scopolamine patch, so I had the water bottle right there.  I took an Ativan last night as a precaution.  I usually take Restoril, but the Ativan has the added "anti-nausea" effect. 

It's a beautiful day here at the lake.  But we need to return the uHaul truck and take a couple of things to my mom's, so I won't be able to sit outside until this afternoon, after I get the Neulasta shot.  I'll need to use a strong sun-blocker as apparently the chemo makes you sun-sensitive. 

Staying positive, but recognizing that things could change any minute.

Hugs to all,

Michelle

dsnydawn

Michelle, I made myself a blog (wasn't too hard) still playing around but nice to be able to keep family up to date..thanks for the info    dawnfightslikeagirl.blogspot.com