Starting Chemo July 2013

Angelanature, sounds like we're on the same treatment plan ;-)

Glad your round #2 went well and I hope you have minimal SEs this time!!!

My hair is already thinning - day 7 - but I'm shaving it Friday anyway.  My hair's already super short, so I've not got MUCH to lose, just don't want it to fall out in clumps and get all over the place (and for my dog to eat it - lol). 

Hi troopers,

I will have my 2nd infusion Tmr Wed. My hair in beginning to thin out it is already short so whatever ? I feel really good NOW! But Tmr is another day. I am doing the Joseph's lash and brow stuff seems to be working yeah happy about that. My prayer go out to all of you strong ladies. please let me know how it goes.

Texas Hugs

Gma04

ha - i can't wait for my chin/lip hairs to fall out!  i'll save some money on threading.

Rambo.. sorry to hear about that.  I have my appt on Aug 2, so we will see what happens then.  

I go for my second AC round on Friday.  I really hope that I do much better this time.  First time I had a super duper migraine which made the first day crap no matter what.  I feel so much better this second week.  My brain fog has lifted but my fatigue is still here. And hungry.. I'm hungry at night all the time! WOW!  I just have to get better hydrated during the day.   

Good luck with everyone who's having infusions this week.  

Love n Light to all.. g'night

OMG, Wilikers!! That's hilarious - I actually just felt for mine ;-). I pulled a couple out prior to my chemo start last week and they've not grown back! And my pubic hair's thinning too. Oh well...



You know, Honeybunny, if the lymphedema is something I have to deal with to live a long and full life, I'll take it . I LOVED my therapist, and am excited to also work with her toward a 100% range of motion goal! I'll be praying for a "good" round 2 for you on Friday



Scribblinhanna, I had some swelling after my first AC treatment, but I guess it wasn't bad enough for a diuretic? Mine was only in my ankles (and face of course), and I was told to elevate my legs when possible and wear compression stockings. That seemed to do the trick for me. I also read it's best to go light on the sodium! I really hope it doesn't happen again!



My prayers are with you today, Gma04!!!



Also, I'm just curious, have any of you been told no raw foods (fruits, veggies, nuts - nothing that's not been cooked) or eating out?



Hugs to all,

Lynn

Go for port-- serious. AC very hard on veins. If you had nodes removed they can only use opposite arm- hard on one arm to take all chemo. Was nervous about port and used lidocaine 1 hr prior to access. Did not even feel poke. Very easy because chemo mixes into veneous vein near heart so easy circulation. I did not initially want port but changed mind hearing others' experience -"miss port every post chemo stick."

Angelanature- we're on the same treatment plan too. I go tomorrow for my 2nd treatment and no hair loss yet!



I haven't scheduled an appointment yet to shave my head. I'm putting it off as long as I can too. So once it starts falling out is it usually just a couple of days before it comes out in clumps? Should probably get an appointment scheduled. My mo said I would still have my hair when I went for my 2nd treatment so I thought I could wait a bit.



Rambo - I was told to wash raw fruits and veggies and to avoid salad bars and buffets. Took my husband out for dinner for his birthday last night so hope that was ok. No idea what my WBC is. They dont check mine until I go for 2nd round tomorrow.



Welcome to the new people. There are so many things going on now that I'm afraid we're missing responding to some questions or problems. Please repost if we don't respond!

Hi everyone,rambo and lark,yes we r on the same nightmare road. Feel bad this morning,like a horrible hangover. Took steroid like a good girl and going for newnasty shot this afternoon. My old neighbors came over last night and the first thing they said was omg u cut your hair so short,nice huh? Wait til they see me bald! Had a weird purple discoloring around my port after infusion,not bruising and the nurses had no idea what it is,anyone else have this? I'll ak to have my onco look at it today after shot,its freaking me out,easpecially since the nurses have never seen this before. Dreading driving to docs for shot,just getting out of bed is hard,but we do what we have to do,right? Love to all my bc sisters,woman power to all.xx

Supermomof6, are you taking steroids on day 5? It sounds like you need to either change the steroids or take a different dose.



Personally I think the direction against salad and fruit is going overboard. I recall having the same warnings when I was pregnant.



Angelanature, I recall my hair started coming out in clumps on day 17 after AC and that was pretty standard.

Hey all, I've been offline for a few days...couldn't get a signal. 

Not being able to draw blood from the port is common.  I was told that the ports are actually designed more for infusion than drawings.  As long as they can get the fluids to go in (I was told if you can taste the saline going in, the chemo will have no problem going in also), you can get the infusion through the port.  There is a injection that they can give that will, most of the time, reopen the port and allow for a blood draw.  However, I don't normally use it because you have to wait up to 30 minutes after injection for it to work and I don't want to wait around.  I have good veins and so I can usually get a blood draw on the first easy prick.  I don't have a problem with needles but IVs freak me out which is why I got the port in the first place.  I'll ask what the injection is that allows for the port to be reopened and post it here after my next chemo session.  Basically what happens is blood forms at the end of the port opening and forms a flap, the fluid going in pushes it open but when they try to draw blood out the flap sucks into the open preventing the blood from going in.  The chemical they inject removes the clot/flap.

The past two weeks I not only had to deal with my bald head but also with a scalp infection.  So I looked like an ostrich with a rash.  Prickly liitle hairs and red, swollen, pus filled bumps all over my scalp, sideburn areas, and upper neck.  Where ever there was a hair follicle there was a bump.  Talk about not wanting to go anywhere looking like that.  Normally I'm not too embarassed about my bald head but I looked gross and didn't want to make people SICK looking at me.  It's only now starting to clear up, after scrubbing my head up to 8 times a day and applying an antibiotic.  Just a few bumps here and there now.

As a Stage IVer, I would recommend fighting cancer aggressively if at all possible.  Yes very few cancers return but when they do they are fatal at some point.  I will be on cancer treatment for the rest of my life and I will die from it eventually.  The only way cancer won't kill me is to be hit by a bus or some other freak accident.  I will continue to fight this cancer for as long as I can and pray for better treatment that will give long term results or even a cure.  Hey hope springs eternal.  The first time around I thought I fought aggressively but looking back maybe I should have pushed for radiation on my lymph nodes since one had a small tumor in it.  I was told the chemo should kill off any cells left after tumor removal and my other nodes LOOKED clear.  I didn't do any rads.  Of course, the cancer could have returned regardless.  You just never know for sure.  I say give yourself all the options available to stop this disease in its tracks and then if it does come back you know you did all you could to stop it.  I don't have regrets because I know I did the best I knew how to do at the time.

I have good days and bad days but for the most part I'm certain that I can survive for a long time.  I don't have a timeline from God for my life so I'm taking one day at a time and have faith that he'll let me know when it's my time to go.  I've been tolerating the chemo drugs pretty well. No real pain just fatigue and constipation.  No real appetite at times (food doesn't taste great) and I get full pretty easily.  I'm fat...okay I'm obese...so this really isn't a problem.  I don't mind admitting this because God designed us all differently and the fat acts like a resource..lol..for when I can't eat much. 

Hang in there folks and try to pamper yourself when you can.  Try to eat what you want, sleep when you want, and definitely vent when you need to.  I know this is hard for some people with commitments that can't be pushed off, but try to find help where ever you can.  In some communities the American Cancer Society provides some assistance with housework and other resources.  Please avail yourself to whatever they offer that might help you. 

Also if someone says something to you that is insensitive or darn right cruel, try to ignore it because you can't stop stupid.  Use it to make yourself stronger.  If you feel like you have to respond, remind them that cancer can happen to ANYONE and how would they feel if they were in your position.  You could be their mother, sister, wife or even child.  That usually shuts them up.

Man this is a long post.  I guess I'm a little hyper today.  I'm on my week off of treatment so I flying high.  Wishing you all the best.

Hi again,Rambo sorry about ur lymphodema,i had a severe hematoma at my node dissection site,my incision even opened up but my surgeon didnt drain it said it would resolve. Well,then a week later i developed these weird rope like things,very painful in my armpit and down the inside of my arm to the elbow,diagnosised with axillary web syndrome. A month later its alot better with alot of massage and exercise. Now Im at high risk for lymphodema,especially during my radiation(after chemo) i have a port in my right arm and the AWS  in my left, nurses have been taking bps with a wrist cuff and my bps have been really high 140/90,ive always been low 100/60,anyone else with this problem? thanks marsha for the heads up on my head. aaso,that sounds so horrible was it after shaving ur head? I sooo feel for u. Ang

Angela, I had cut my hair short and when it started falling out in the shower all over me I had my husband shave it and then went to work. Shaving really does not require a hairdresser or any kind do skill, just a set of clippers.

I believe the scalp infection was there when I had hair but didn't spread because the hair prevented it from getting to the other follicles.  After I shaved my head it started to spread because whenever I rubbed my head the bumps would break and spread the infectious pus to the other follicles.  A lower immunity didn't help either.  It is getting much better though.  I made the decision to shave my head when I was covered in my own hair while taking a bath.  It looked as if a yeti had its hair cut in the tub.  It was gross and I worried about the plumbing getting clogged.  I figured do it and get it over with.  Did the same thing the first time I had cancer.

Rambo, please don't blame yourself for being BRCA positive.  It isn't anything you did and nothing you can do to stop it.  It is good that your daughter knows about it because then she can keep an early watch, early mammos and such, to catch any changes before they become life threatening.  Sorry that your numbers are in the toilet.  Is your ONC going to delay the chemo treatments in order to let your WBCs improve?  My ONC won't let me have any chemo if the WBCs tank.  They get low at times but never down to the level you're at.  Sending best wishes your way that things improve for you. 

Rambo- so sorry that you have had such bad day. It really sucks and some times it feels like we just can't get a break. I hope your WBC get better soon and they you continue to feel better. Do not ever apologize for feeling bad or negative. We all consider this a judgement free zone and we are all here to support each other. Sending you and your daughter tons of hugs!