June 2011 A/C & T Groupies Unite!

Bracababe hope you are on the low end of SE's. I feel bad pretty much 4 or 5 hour after tx for at least 5 solid days. I stack any help I can scrounge (don't have much local help either) on those days. But others have not been knocked down as badly, you may not either. It feels like it's cumulative, my last one is next tues and each time it's taken a little longer to get back on my feet.



Laura

Hi all, I had been posting on the chemo june thread but I also wanted to join here as I am doing ACx4. I had my first infusion on 6/13/11 and had a very difficult time.  I needed constant care for my 5 year old daughter for 7 days before I started to be able to care for her.  My doctor thinks I had a reaction to the compazine and the steroids. She is changing the Compazine and cutting down the steroids and states she is hopeful that this time will be better. I am so scared! My next infusion is monday and I am praying it will not be so severe.  I am usually a pretty tough person so this really blew me away. For  newcombers though, please don't be scared by my post as it seems like most people are not having the severe SE I did the first time - I really hope I am not scaring anyone!!

The good news is that I feel great today! I also got my hair cut really short and love it! I know this should only last a short time before it starts falling out but it is wonderful to like myself in short hair ( I have always had long hair). It makes me feel hopeful that once it grows in it will not take so long before I start to feel attractive again.

brca1babe - I understand  your concerns about your 4 year old. I am also worried about my 5 year old but she does seem to be handling it well. On the days I feel well, I am very focused on her and our relationship. In fact, instead of focusing on getting through day to day tasks like we usually do the focus is on us and she said to me this morning that she thinks I "am becoming a better mom and she likes it". This is the same little girl who also told the babysitter the other night that Mommy smells alot ( she is talking about the gas!) How embarrassing!!!!

I'm really curious - just how much Decadron/steroids is everyone getting?  I'm getting just 6 mg as a pre-med day of treatment only.  I would say I did much better than expected on that small dose.   I wonder how much is overkill?

Michelle

Paula - basically, dose dense means every two weeks instead of every three weeks.  There is some science that indicates it is more effective, especially for triple negative cancer.  One advantage is that it doesn't take as long. 

Michelle

Hi Ladies,

I am also new to this thread. I was diagnosed at the age of 27 at the end of April, then had a lumpectomy in May and now onto chemo.

I'm starting AC dose dense tommorrow...finally!!! It seems like forever that I have been waiting for this day to start...but now that it's here, I kinda feel unprepared despite all the research I have been doing. I have been pushing so hard at school the last couple of weeks (intense pharmacy program) that I forgot to make myself a "chemo kit". Any tips on what I need for AC?

All of you ladies seem to be doing great, and SEs don't seem to be as bad as expected. I hope the same goes for me!

Just had all my scans done...all CLEAR! Thank God (truly it was many many prayers that has gotten me through the first part)

Goodluck ladies and keep your spirits up!

Hi Kyroheal, sorry you had to join our group!  How sad, you are sooo young but your attitude is great, and you are right, God answers prayers.  Many of mine have been answered as well. The good news is we are all here to help, you will get thru this and live a long, happy cancer free life!! 

Sounds like you did your homework!!!  I've only had 1 AC so far, doing every other week, total of 4 treatments.  Then taxol every week for 8 weeks. Side effects so far have been minimal.  There is a great thread that has a great "shopping list" for different side effects..I will find it for you.

As far as a chemo kit to bring with you, I brought my own lap blanket, a book or MP3 player, mints or gum, bottle of water, small snack - crackers or if you are there at lunch time maybe something light.  I did eat a light breakfast and a little protein before I went.  My infusion center has a big screen TV and lots of mags, but also has Wi-Fi so you can bring your laptop if you want...they also had a variety of goodies, cookies, etc and coffee and tea.  The time went by quickly, maybe cause it was my first time and I think if dozed off a couple of times...about 2-1/2 hours total.  I am sure others will post with more great tips as there are some amazing women on here with a little more experience than me. 

Good luck, you will do great. Make sure you listen to your body, rest when you need to, be sure to eat when you need to and drink alot.  I drink whatever I can get down, today it's gatorade, yesterday iced tea (diluted with water, too sweet for me). Your taste will change too.  Take the anti-nausea meds before the nausea sets in, keep that under control.  Sorry for the long post!

Yes, there are some good tips on how to prepare for chemo.  I will say, though, that every chemo lounge is different.  Mine provides warmed blankets, a fridge stocked with different beverages, different lunch items for patients including sandwiches, soups, and snacks.  I brought a drink container and my hubby or daughter kept it full the whole time.   I brought my laptop because there is wifi access, pretty common now at most centers.  And each suite has a flatscreen tv mounted on the wall.  Of course, with both my hubby and daughter in attendance, I didn't do much except chat with them.  It was my first time and they were "ever-watchful"   And my chemo nurse was frequently checking on me.  I don't think I could have napped even if I had wanted to close my eyes.  And in my center, you can hear other people's conversations and see what's going on, unless a patient has closed the curtain. It's not exactly a "private" experience.

Michelle

Wendy, I thought any fruit with a thick rind was safe. I've been eating watermelon and melon all along.

My doc said nothing about fruits and veggies!  Hmmm.  I will say I made what I'm calling my chemo soup.  I was craving it last round but had no energy to make it.  Lemon chicken rice spinach soup.  It's just right.  Very simple.  And the rest of my fam will not touch it!  I found it on allrecipes.com.

I asked about the fruits and veggies issue and was told that as long as I wasn't neutropenic (low white cells) it wasn't a problem.  Since I automatically get Neulasta the day after treatment, I'm not expecting to have a problem.  Being diabetic, fruits and veggies are a big part of my diet and it would be a problem for me if I had to avoid them.   I do think that watermelon would be OK because of the thick rind.  Same with cantaloupe, citrus fruits - anything that you peel.  Just be sure to wash the outside carefully.  I'm eating my strawberries, blackberries and blueberries until and unless I develop a problem. 

I've read that some people give themselves the Neulasta shot.  My center doesn't encourage it...the shot is $3000!  And it has to be kept in the fridge and administered within a certain window after chemo.  I am just 20 minutes away, so I'll let the experts handle it. 

Hugs and healing,

Michelle

kyroheal - congratulations on first one done! I hoping for minimal SE for you!

 I was told to avoid fruits and only eat cooked vegs from my nurse. I am sticking to this for the most part.

I just got my hair cut - short and cute. None has fallen out yet. I really like the new cute, wish I could keep it a little longer.

I go for 2nd infusuion on Monday. Hoping it goes better than last time!

My best to you all!

Kks_rd - can't answer the question about chemopause.  I'm more than a decade past natural menopause, so fortunately I am not suffering any hot flashes.  I think it would be hard to tell what's causing what with all the chemicals circulating around in our bodies! 

I, too, have a fabulous family and friend support system, and I am so glad we made the quick move back east to be with our kids.

Hugs and healing,

Michelle

kks_rd: I'm also triple negative and have been drinking lots of soy milk. However, I started taking Lupron shots before chemo to suppress my ovaries in order to make them less susceptible to chemo. I didn't want do the IVF procedure and wait an extra 3 weeks being triple negative, so it was the least I could do I guess, bc I really want children one day if all goes well with the BC. The point is, that puts me into menopause as well. I have been feeling hot but I completely understand not knowing what its from. The steroids also make me feel funny, I think I may get a prescription for sleep meds. can't seem to fall asleep

I'm starting neupogen as well. I'm hoping to do be able to do it myself because I don't really want a nurse coming to my house everyday. How are they???

I also remember you mentioning in earlier posts about feeling random pains in the area, and yes before I had my lumpectomy, I felt random zings and zangs, maybe its the triple negative thing, I know they grow a bit faster so maybe the tissue around it can't keep up. Glad you're starting chemo now

@ Singlemom: I'm glad you like your haircut, isn't it interesting to see that we might enjoy other styles that we may have never tried before? I will be cutting my hair this week as well. I bought a wig though as close as my natural hair - just dont want to deal with unecessary questions like "OMG when did you cut your hair, let me see...why? when??" especially with people I didn't want to share my story with. Anywho when I was at the wig place, I tried on shorter ones and actually loved them!! Maybe eventually I will slowly trim the wig and make it a short one.

 Best of Luck everyone!!!!

hey everyone!! well its what, day 5 for me since my first dd a/c..well day 1 & 2 were ok day 3 def tired and day 4 I was wiped out (couldn't keep my eyes open) and had nausea..got that better under control last night and today (compazine) don't know how long this will last as I hate feeling like laying around...did walk across the street to the park and back for some exercise..my appetite has been very little as well which is probably not helping with my energy level...hope day 6 is better!!!! glad you all are doing good