September 2013 Chemo Group

audra67

Thank you for uplifting encouragement! Scared of unknown effects I guess, and had a dream my just frontal part and top of hair fell out and rest was long and hanging there! Like bozo the clown ish! Nightmare!!!

One step at a time sounds like a good thought.

alfranco

Ladies I know a lot of you have not gone thru this,but I believe I have. I feel I am also battling depression. I have a good support system at home, but I am my own worse enemy. My boyfriend had to have a very hard talk with me. I see what I've been doing and I am working hard to come out of all this. I've always seen myself as a very strong woman and dropped everything when I was diagnosed. I am not writing this to get sympathy, I am doing it if someone else feels like I do, get help keep your mind busy. It's not easy being the one who used to do everything and more, to someone that needs the help. Sorry I am writing so much negativity where all of you are full of so much positivity. This place has helped me a lot. I have laughed with a lot of the blogs and have learned a lot. I just needed to put it out there. 

audra67

I think the key is to stay positive and I have talked to God and read the bible more in the last few months than EVER! You need to not speak negative even, don't let it come out of your mouth, counteract your bad thoughts with a positive, keep practicing that! I have found great help in Joel Osteens book- Break out and also I Declare 31 promises to speak over your life...they make sense they are encouraging and uplifting and I LOVE them....read daily...especially when the negative starts to worry or creep in..

Anonymous

By the way, good news: hair is growing back during weekly taxol. Yay! V

JellyK

HVV really?! How much? I've heard some folks have their hair grow back, but my pharmacist said to expect EVERYTHING to go now, including my eyebrows and all my body hair. Needless to say I was annoyed and depressed hearing that, but your hair is coming back?

knightzoo

Ah, well maybe our navigator needs to be updated! Thanks for the info. Mine was sent to Myriad...and they say my insurance requires genetic testing before they will cover. Pretty sure they could've told me that 3 weeks ago! Grrrrr. I'll have to travel to get that done - there is one that comes here every couple months but not until mid December and I don't want to wait.

knightzoo

I buzzed my hair on week 6 of weekly taxol - now I'm on week 9 and still have a lot of fuzz and can definitely tell that it's growing. I still have eyebrows and eyelashes, arm hair, a little leg hair....

lighthouselady

HVV - that's awesome! I keep hoping to see some growth. I've heard of women having hair growing back during taxol, but maybe it's only on the weekly since it's a lower dose? Nothing on my head except male-pattern baldness. LOL My eyebrows are really thinning out, now, too. <sigh>

Anonymous

My eyebrows and eyelashes fell out after AC and are still out. But the hair on my head is growing back slowly. Not a lot. but all over and definitely growing. When Idid chemo last year it took 10 weeks for my hair to begin growing back in any meaningful way so I don't expect that Iwill have enough to go out in without cover until Janaury but that is better than 10 weeks post my last taxol which isn't until December 12th.

V

KBeee

alfranco, I am usually a very, very positive person, but sometimes there are not many positive things happening in our days! Do not think you need to apologize! I have been venting on here more than ever. It's the one place where people "get it". My mom told me that if I think positive thoughts that I would not have side effects. Seriously. Most people just do not get it. I do try to stay positive around most people, but it is impossible to be positive all the time with all we are going through and feeling. Do not hesitate to ask your MO for a mild antidepressant. Anything that will help you get through this...whether it be meds, counseling, a support group, meditation, spiritual guidance...or venting to us a lot. We are here to celebrate with each other when times are good and hold each other up when times are bad. ((((HUGS)))) My posts this week have not been overwhelmingly positive...at all; it was a rough week; especially in the evenings, and I felt like the week had about 18 days to get to Friday. But Friday is here...7 days out and I am feeling a bit better today because I am in less pain, and so that's why I'm in a bit of a brighter mood today. Hopefully as you feel better, you mood will improve too.

JellyK- My 2 friends that did AC then T both had their hair start to grow back while on Taxol, but lost their eyebrows.

JellyK

Well I guess it's good I've had to fill in my eyebrows with eyeshadow for a few weeks now, cuz they're definitely coming out even more this last week. Ideally enough will stay to guide me where to draw them, lol. Weekly Taxol #2 today, it's soooo nice not to be dreading it - normally I'd already be nauseous just thinking about going in :-) I also confidently made plans for the weekend, knowing I'll be fatigued and spacey but not nauseous and hurting. This feels like something I can handle for 12 weeks, thank goodness.

Viji

SpecialK, thank you for looking over our shoulders, great to have your imput.

I agree with KBeee, we have good days and bad days and I always feel supported here.

Day 5 after TC#3 and have this irritating pain down both sides of the thighs. And can't stand the heat it is 32 degress Celcius. Heavy headed and spaced out.

Hope tomorrow will be better...

PeacockGirl

Taxol DD #1 is in the bank. We checked in at 8:15am and got out at 3pm. Whoa. What a long day. Good news is onco dropped pre-infusion steroids by almost 1/2 the dose, bad news the taxol drip took over 3+ hours. Thankfully I didn't have a reaction. I got emend and Zofran as usual...and I got benedryl and Ativan and those promptly knocked me out for an almost 90 minute nap. Just soooo loopy! I felt totally drunk. Got home and took another 2.5 hour nap. Other than a knot in my neck that I get anyway from time to time I feel quite good tonight. Not borderline queasy, shakey, mouth ick like I used to have on A/C. Oh and I gave up on the stupid lidocaine crème for my port, after last week with the nurse from hell diggin' in my port, I'm pretty sure I can handle any needle stick now. Requested a different nurse today and she nailed it the first time with almost zero discomfort. My hemoglobin is flirting into the 8's...but that might be related to the 14 day heavy period from hell I suffered after chemo #2 and thru chemo #3. Lighthouse: I was encouraged to see your red counts went up between taxol #1 and #2. I hope that for me too. I don't want a transfusion, but I don't want to delay any chemo treatments either.

Alfranco: please just let it all hang out here, we are here with you and we will laugh, cry, be funny and commiserate with you! I am sending you a (( hug ))

Wishing all you lovely ladies a good weekend with minimal SE. I get neulasta later tomorrow (3pm) since infusion ran so late so at least I have a nice long Saturday morning to enjoy before the shot SE of neulasta kicks in and ruins my Sunday.

And SpecialK ..yes thank you for all of your guidance and helpful answers to all of our myriad and sundry of questions! you are the best!

lighthouselady

peacockgirl - Yay for taxol #1! Isn't it so nice not to have the icky, pukey feeling? I was a little disappointed in how long the taxol takes, too. With AC my whole thing from start to finish was 2 hours. With premeds, taxol is almost 4 hours, and I've had my labs & doctor visits on the same day both times. Talk about spending all freaking day there! Let's hope your RBC climb up like mine did. Mine have dropped every time since I started chemo until this time.

kjsimpson

Alfranco,
I don't think my depression over things has fallen to the clinical diagnosis of depression, but it does get to me too.  Before having to deal with all of this, I was an exceptional employee... always on top of things, keen mind, lots of energy.  It has been extremely frustrating to be an 'average' employee now.  My boss has taken me aside twice and reminded me that being average is ok for now as long as I am focused on my health and family (where my priority should be!).  And, we are working out an 'accommodation plan' to help me maximize my work time while taking care of my medical needs.

I am not complaining.  I'm just sharing that it is hard to accept and deal with life changing so much in such a short period of time.  Less than 90 days ago, I was one of the healthiest people on the planet.  But, life is upside down right now.  It is my job to adjust to that, do my best, and prioritize for the right reasons.

I hope you can find the tools and friends you need to get through this.  There are no singlularly right answers and sometimes you have to sacrifice feeling 'inferior' as average so that you can excel at getting healthy again!

My words of wisdom.  Refunds available on request.

kjsimpson

Round 4 on board. Neulasta shot in the morning.  Prepping for the week of side effects.

Doc wants me to experiment with Glutamine for the eye twitch and swallowing problems.  This should be fun.

VintageGal1111

What is with the hair? LOL I still haven't lost all mine, still have some sparse micro mini buzz on my head & body hair. & I am done A&C. I do think there's a couple tiny spots missing on my lashes. Wondering what the Taxol will do. Guess we all get affected differently.

VintageGal1111

kjsimpson

The last two rounds of A&C causes me to have terrible acid reflux/heartburn. And also I feel like I can't swallow. almost like a lump in my throat. That stays with me for 2-3 after treatment.

Hope the supplement helps you!

knightzoo

My post above on the genetic testing should say that my insurance is requiring a genetic counselor to verify the need. So I get to drive 650 miles round trip Wed/Thurs to see one. Fun fun.

Good wisdom from all on the feelings/depression. Hang in there everyone, we will get through this. One step at a time.

knightzoo

Alfranco, hang in there on your feelings. None of them are wrong. I'm sorry, but I can't be positive all the time. Sometimes I walk while listening to my "ANGRY" playlist, lol. I just ordered some books recommended on here...Joy Is A Plum Colored Acrobat (JellyK thanks!) and I Declare (31 promises to speak over your life) (Audra67). I also ordered Eat Your Peas for the Cure - it's a great little book I was given as a gift - it has a spot to put your phone number for someone diagnosed to call you anytime and lots of great little inspirations/tidbits and I wanted one on hand to give out when needed.

Thanks to the steroids, I read through all the LX vs MX threads...I posted this http://community.breastcancer.org/forum/5/topic/811876?page=3#post_3773027 Anything you guys have to share, please do!! Here or there!

I am doing neoadjuvant chemo and preparing to make my surgery choice. At this point (still awaiting genetic testing results) I'm assuming I'll have a choice to make, which I didn't before chemo, but the mass is definitely smaller. From the posts above, I have thought through the following:

1. Radiation: Either choice involves radiation due to node involvement ( maybe a week less with MX)

2. Does recovery time matter: yes - I'm so ready to be past this ordeal! I'm wondering if I do a UMX prior to raditation if I could have the other side done with immediate reconstruction after radiation because I'm concerned the healing time of BMX would delay radiation?

3. Body image: so strange to think about this because in the age of surgeries to reduce or enhance, I've always been perfectly fine with my body. I'm not sure how I feel about the lack of feeling. But I do like the idea of no bounce with foobs, since I'm a runner.

4. In general, I'm not an alarmist or worrier and I don't think having regular imaging would stress me out. It seem though that the studies say LX vs MX have the same survival rates, but the recurrence rates are higher with LX? Because I don't want to do chemo ever again!

Based on that, any additional advice for me? I plan to schedule my BS/PS consults as soon as I get my genetic results. Thanks! Oh, I'm 42 if that helps.

alfranco

Knightzoo- according to my PS they won't reconstruct until 7 months to a year after radiation. Radiation changes DNA and shrinks the part your body they are working on. I was told if they had done my reconstruction right away with the flap method and then radiation, the radiation would have dried the flap and would have to start over from expanders.

lighthouselady

My PS said the same thing. I'll have expanders put in, but no reconstruction until 6 months or so after radiation.

So the taxol/neulasta fun begins. Everything hurts today. I'm having swallowing issues, too. Don't remember having that before, but I feel like I have a golf ball in my throat. Ugh. Going to be a fun weekend.

knightzoo

I don't have a problem waiting until fall for recon. Just wondering if the 2nd side can then be removed and immediately implanted?

PeacockGirl

a coworker gave these to my husband ..because minty fresh mouths need breast cancer awareness too!

kjsimpson

Started the glutamine today.  Bought it while my eye was twitching like a light fizzling out.  It doesn't taste bad mixed with something.  Just a little gritty (even the ultra-fine stuff that I bought just to avoid grittiness).  Probably will help me get more fluids in since I'll have to be intentional to mix it three times a day.  When I was at the pharmacy, picking up yet another refill of something else, I asked for a 3 ounce medicine bottle which they gave me for free.  That will let me take it to work easily.

Had the neulasta shot today.  Know when I wake up in the morning it will be to the joyful bone crunching of white blood cell production (snicker).  I have to say that the neulast shots are working.  My WBC has stayed within normal range for all four rounds.

As for the swallowing issue, it isn't so much that it is hard to swallow.  It is more like the brain not connecting to the muscles to tell it to swallow.  I have to be very very intentional to tell my brain to tell the muscles to swallow.  The silent curse with the instruction usually does the trick.  Aren't my kids glad they can't hear what goes on inside my head right now.  ;-)

This is the month of Thanksgiving and I'm posting a facebook post every day for something for which I am thankful.  Today it was for friends.  Thank you all for being here for me, even though we didn't know each other before, I feel like we have a bond and I look forward to catching up with you several times a week, sharing support and angst, joys and sorrows, and the promise of better days ahead.  Thank you!

kjsimpson

Peacockgirl,

First, love the minty-breast-cancer-awareness pic.

Second, I am going to choose the opposite for surgery.  My cancer is focused exclusively on the left side (IBC).  But I don't want to regret, a couple of years from now, having it develop in the right side and having to redo this whole chapter.  So, I'm going for a radical double mastectomy to improve my chances of non-recurrence.  I'm a DD, so it will be a huge change.  But, on the upside, I've haven't enjoyed being so well endowed and am actually looking forward to taking up some running and faster walking where I don't bounce as much.

I'm grateful we all have choices.  I'm a little worried about how I will look.  But I will cross that bridge when I come to it.  Balancing the options... 'being alive to play with my grandchildren or keeping my well endowed breasts"... no brainer. Grandchildren win.  ;-)  I am risk adverse.  Besides, some of my clothes are going to fit MUCH better in the future.  ;-)

knightzoo

Thanks kj for your input. If any of my

Providers tell me choice is to save my breast or live, I would clearly chose the latter. As of now, I don't believe that is it either or.

Anonymous

Knightzoo,

I chose to have a mastecomy primarily because I am small and I didn 't think my breast would look good once the 2cm tumor plus margin was removed. I also didn't want to risk a recurrance in that breast. Finally, I'm primarily a single parent and I was hoping to avoid 5-6 weeks of daily radiation!

Then I chose umx vs bmx because my MO said that there was a low chance that my ductal cancer would spread to the other breast and that this chance would be reduced further because I will be taking tamoxifen. Finally I couldn't bear to have both breasts removed because , as a single woman, I still hope to have another intimate relationship some day!

These are tough choices and we each have to do what is best for us based on our diagnosis, our values, and our willingness to accept risks. Good luck!

KBeee

Spiking a temp. MO having me go to E R.

lighthouselady

Oh no Kbeee - hope everything is ok!

KJ - I feel the same way. I hate that any of us are having to go through this, but it's the kind of thing that nobody "gets" unless you're in it. It means so much to me to have you ladies to turn to laugh with, commiserate with, relate to, etc.

I think every square inch of my body hurts. My muscles hurt. My bones hurt. My lymph nodes/glands hurt. Even my teeth hurt. Wow this taxol sure is fun for a few days! My poor hubby - our daughter is sick, so he has two under-the-weather females. I'm trying to stay away from her. She has a sore throat and is running a 101 fever. I hate not being able to take care of my little girl.