Starting Chemo October 2009

Good to know that you are not a newbie on this forum any more! The
6 wigs you bought - are they all identical? J/K.....

Dear Hopbird,

Loved Loved Loved your line "....we need that, more than we need an
empty dishwasher." It is T-shirt worthy! Also, I wish I could be
naughty and attend Halloween parties too!

Dear Jean,

I too feel that using a forum like this makes me more confident
of my treatment and less scared. I stay away from the mets sections
because that could make me anxious. Hope you found the wig to give
you the look you wanted. I bought 2 wigs a month back. I have
now started wearing one of them. I will be going to the wig salon
after my next nadir to have them styled/cut/thinned.

Dear 1L,
Congrats on surviving this far! Keep peeing.

Dear MarieK,
Is that a wig in your pic? Looks fab. Sorry to hear that your PICC line
plastic is not behaving.

Dear MaryNY,

Good to hear your bloodwork and EKG came back more or less normal.
As long as the WBC is in normal range thats fine. They will give you
Neulasta the day after the treatment to keep the counts from
dipping too far below for too long. Good luck for your first chemo.

Ordering a wig from tlcdirect.com is easy. Try a few wigs in a
local salon first to know your size, color and style preferences.
Then order from tlcdirect.com. They are very good with accepting
returns in 30 days as long as you return the wig in same sellable
condition. The 3 most important characteristics of a wig are the
size, color and the length of hair. Styling and thinning wigs is
easy and costs approx $50 at most wig salons.

I don't know why bidets are not popular in America either. Some years
back DH ordered an attachment for our toilet from a company called
biobidet. It is very simple to fit it to your toilet and very simple
to use. The box comes with all the needed fittings and costs ~$50.
He loves it. I personally like to use the shower head to spray myself.
There are flushable wipes made by Kandoo. Then there are those that
love their squirt bottles. Use whatever works best for you. 1 tip if
you use anything other than wipes, after the wash, sit for 1/2 minute
before pulling panties up to let the water drip off or the panties will
be moist and you will risk fungal or yeast infection.

Dear Piffken,
Congrats on surviving this far! Keep peeing.

Dear Valerie,

Every one experiences things a little differently with chemo. It depends
on the specific meds and pre-meds your doc orders, your body and emotional
state, etc. But it is perfectly normal to feel tired, shocked, sleepy,
or energetic, at ease, up etc. Just go with the flow.....if you feel like it
exercise, if not rest your body. Do not go to a gym for a work out.

Re shaving the head when the hair starts to fall, here is a tip: rather than
shaving my head DH just buzzed it down to #1. That gives me a little stubble
which helps hold the wig in place. I think shaving it could make it too smooth.
The stubble does not fall off as easy as long hair.

Dear All,

I will be getting AC #3 on Monday. I sure hope that #3 is not as bad as #2.
I am going to ask my onco to give me something for mood irritability. DH thinks
it is from Lupron. Still not sure if I should enroll in the bisphosphonates
clinical trial (SWOG 0307). Apparently for pre-menopausal women who have TNBC
there is not much expected benefit.

Anyone has any info on supplements/herbs such as Q10, wheatgrass, glutamine,
green tea during chemo? So far my doc has told me that Vitamin D 5000 IU and
multi vitamin are ok and I have not asked abt anything else. But I read somewhere
that Q10 is useful for protecting heart function which takes a hit with Adria and
Avastin; Wheatgrass and Green tea are good for rebuilding immunue system;
Glutamine and Multi Vitamin are good for reducing neuropathy.

Love to all of you.

Good night.

Unklezwifeonty - you are so good at updating and commenting on everyone.  I wish I could keep everyone straight but it's enough for me to pop in occasionally, read what everyone is up to, then update myself.  I may even rememvber to reply to a question or two but I'm blaming the chemo brain on everything these days.

Tonight my husband asked me if our son went out tonight wearing his sunglasses and no sweat shirt.  I saw him leave, I gave him money but he could have been missing a limb for all I remember.  It's very frustrating for hubby these days.  Lucky for me I forget that he's mad and just carry on like it's a new day!

Mary when I ordered my wig through the salon the lady buzzed my hair and then fitted my wig and trimmed it at no extra charge.  The wig came with the bangs really long and she trimmed with thinning scissors.  She even offered to cut it into a short style (like the Uma one) later on if I got bored with it.  Not sure what that would have cost?

In the mean time I found the Uma one online and ordered it so I could have 2 different looks at one time.

No one can tell the difference between the synthetic and partial real hair wig.  Actually most people think they are the same wig - although as I said one is shorter than the other and much darker too.

I don't know that I can justify the difference in price.  We'll see how they hold up after all the wear and tear I'll put on them over the next few months (I have heard that people will wear their wigs for up to a year). 

Actually the synthetic wigs are heavier - the one with human hair has more swing and lightness to it.  The synthetic ones are much shinier and easier to take care of too.

All of them are easy to wash in the sink - I bought wig shampoo - and shake out to dry.  I have a plastic stand that allows for air circulation and faster drying times.

Anyone else want to share their wig photos?  I'd love to see them.

hello everyone im day 2 of my tx and im feeling like crap sooooo tired alllll the time and very sick in morning befor my anti nausia tablets i just feel so unhappy will this lift before i have to face loosing my hair u know i thought i was being very brave 1 week ago  but that has all gone out the window im doing fec x 6

Marie, love the wigs.  I haven't looked at wigs yet, thought I only wanted to do scarves, but may change my mind.  Yours are so cute.

Mary, look for the bottles over  with the salt shakers and stuff like that. They come two to a package and are so cheap.  Good luck next week on your treatments.

I finally got a good night sleep last night.  I did get up about every two hours and go to bathroom, but was always able to go back to sleep.  My DH said I had lots of night sweats, I told him that wasn't unusual.  Hot and cold, hot and cold.  We are going on a picnic today.  It should be a pretty day. 

I hope everyone has a great restful day. 

Juannelle

hi All,

just checking in. Ac3done. Thanks Mary for updating my smiley face.  handling se's.   all who wonder how it goes each time, not bad.  good news, i was waiting too.. it is not as bad. some tells it gets worse.   Thank God im ok. maybe more fatigued than before but resting up and taking easy.

 have good sunday all,.

Well, my hair is shedding quickly.  Since I never did cut it short, the long hairs are very disturbing.  Think I may break my clippers out with the kids today.  But I'm going to cry now before they come home.

This just doesn't seem real.

Laura 

hello everyone

I just had my first chemo on friday after an horrible experience getting my port placed the same morning.  I was told it would being under sedation which I understood was make me relaxed and probably unable to even remember what happened.  It  didn't work at all and despite telling them at the beginning of the procedure I wasn't relaxed at all, they continued.

 When I saw my onc she thought it was awful and even prescribed me pain meds since I was only given tylenonal from the surgeon.

I was given Elmund and 3 other anti-nauseau drugs which didn't work until I called my onc the next days she said I could double up on dose.,  I'm a coffee addict so I knew I would miss that if it tasted yucky like so many chemo patients say.  Mysolution - red bull, since it already tastes like chemicals I didn't think chemo would make it worse, and it works.  I still can't eat but hopefully soon.

Laura I'm so sorry that you are having a hard time with the hair loss.  Have a good cry and then put your big girl pants on and deal with this like a girl.  This too will pass and then you will be so excited when the new growth begins - we'll have to start our own hair growth thread!

I agree with Onty you should cut it shorter - I didn't want the long hairs falling eveywhere and cut it to 1/4 inch and started wearing my wigs out.

But yesterday (Day 20 post first TX of FEC)  the fall out was just too much.  It was in my food and having just gotten my appetite back and looking ahead to a week of being off food - hair in my food was just not acceptable!!

See photo below.  No that is not the family pet in the sink...

This was just standing over the sink and rubbing my head over it. And surprisingly I still had lots of hair on my head after this!

I buzzed it all off - actually my 16 year old daughter did it and my son (14) took a swipe at it too.

It was very sweet how they wanted to help me but I think they thought it was kind of fun too.

Be strong and know that we are here for you!

Marie...good idea to recommend the pillow...I have one and use it too!

Thanks for the wig pics.  If we didn't HAVE to do it, the wig thing could be fun!

 Laura, I agree with Onty, an interim cut is a good idea to get used to the new look without going all the way.  I never did my second cut, my hair was going so quickly I never got around to it.  I would just shower until the shedding stopped and wore a cap around.  When I took the cap off there would be little hairs inside that I shook into the toilet.  The worst was over in a few days.

Joanne, sorry you're having a rough time.  Just remember, there WILL be good days in the midst of this.  I know it is hard to remember when you're having one that isn't.  Just take care of your body and know that it isn't permanent, and it means the drug is probably doing what it should. 

Onty...good luck tomorrow.  I felt just a little worse after number three, but we're taking different drugs and it sounds like everyone is a bit different anyhow.  Hang in there!  And we'll have to wait a few more days before we know if the party was a good idea!  Now that I think about it, that saying IS a good one!  And of course we could substitute LOTS of things for an empty dishwasher, couldn't we!

Nancy, hope the weather clears and you can get some nice, long, mind-soothing, immunity building walks in before Wednesday.

Clarice, don't give up on coffee until you know it doesn't taste good.  My taste buds are off, but I'm still enjoying my coffee!

OK...now I am doing something REALLY dangerous....heading to the grocery store!  Does everyone else carry the little wipe down wipes with them?  I do.  I use them to clean my desk, wipe down the shopping cart, etc.  Those and hand sanitizer are my friends.

one-L  I have been having trouble sleeping flat and have not been able to sleep in my bed since my mastectomy and reconstruction last month. Yesterday I purchased a bed wedge at Brookstone. It is the4-in1- Bed Wedge. It was pricey, but worth it since I was able to finally sleep in my bed. I asked if I could return it if it didn't work and the salesman told me I could. Fortunatley I will not have to return it. Maybe that will help you. Good luck to everyone.

Hi everyone, it's been a few days.  I had my port installed Thursday and then my first Tx Friday.  I felt fine during the treatment, but have been completely wiped out since.  DH and I went for a short walk yesterdy, but other than that I've been sleeping about 16-18 hours a day.  Right now DH is downstairs with a camera guy for some NBC program.  At least I'm pretty sure...I am on enough drugs at the moment!

 I haven't had much nauseau and have been sticking to the drugs.  I already am not craving chocolate as much, which is too bad, since they have me some fancy chocolate-caramal-covered marshmallows at work on Wednesday! I've got tomorrow off from work but am planning to go back on Tuesday.  So far no mouth sores (thanks for all the tips about the Biotene and ice chips)!

I did it.  Braided my hair and cut off the braid.  Unfortunately, I cut too close on one side in the back.  Then I cut it into a bob (sort of cute).  Then I broke out the clippers.  Spent the next hour cutting and clipping and finally just hit the razor.  Four blades later and I am as smooth as an egg.

Wig lady was right.  My head is shaped ok. Just looks weird and white.  I put aloe vera on it because it feels a little dinged up.

Good thing I'm going to that LGFB meeting tomorrow night.

I wish I could say this doesn't suck, but it really, really does.  But I guess I will get past this like all of you have or will.  And countless others who have gone before.  In Hispanic families they usually shave a child's head at 1 years old with the thought that the new hair will be thick and beautiful.  That is what I wish for all of us when this is over!!

Laura 

hi ladies

day 3 after 1 tx i am feeling a bit beter then i have been thanks for all your suport and best wishes you just have to take one day at a time ah  i hope everyone else is doing good yes first tx is scarey just the unknowen and what to exoect i am getting great tips from u all and i dooooo feel the LOVE   THANK YOU ALL

Joanne

Juanelle, Mechelle, I'm on a different drug, but for me the belching, indigestion usually has been worst 2 - 4 days after infusion.  With mine came heartburn at night.  You might want to have the Pepsid nearby just in case!

My taster is off too...but some things still taste good.  I'm sure which ones do change as treatment progresses.  Oh well, at least we can't say any of this is dull!

Laura, I know the hair thing is hard...  right when I think I've gotten used to it, it I'm not.  I can look in the mirror without wondering who is looking back now, and evaluating her.  I look like me now.  But I just ran into someone who took a moment to recognize me, who said how my hair looked different.  Well, yes, there's a reason for that.  I didn't know what to say.  She quickly just told me how becoming it was and moved on....  I just don't know how to work "I have cancer" into a brief conversation and didn't know how else to explain my new do..... 

Sido, glad to hear you, DH and the pup are doing better.  I really, really hope I don't jinx myself but I'm doing really well and have been throughout this first treatment.  I have been battling constipation but I've been use to that for a while now as most of the meds I've been given for the different surgeries effect me that way anyway.  No fatigue, no mouth sores, no bad taste in my mouth and even had no ill effect from the neulasta shot on Friday.  I know I won't be this lucky for very long but am glad I got to feel normal through the first one at least.  I hope everyone has a great SE free week and good luck to the women who are getting their first treatments tomorrow.  Gotta run.  I have a softball game tonight. I hadn't intended on playing but the girl who is my replacement (and half my age) is sick so I guess they need the old lady to play. lol  Have a great week ladies and hang tough.

Dee