Starting Chemo October 2009

Oh dear Marie,

Sorry to hear of PICC line troubles. Hoping all goes well tomorrow and they sort this out.

thanks for all your support dear sisters

 am in a much better frame of mind now  - yesterday's chemo is now behind me so i can tick off a smiley face.  I was not amused though, that my hair loss really started to show yesterday!!  Unfortunate tming!

 Hugs to you all and special hugs to those who are not having a good day -hope tomorrow is brighter

philippa

Well I'm off soon for TX #3 - that is if it goes ahead. 

I had a peek at the insertion site - (the dressing is totally lifted off at the bottom - and you should see the welts unbelievable!  The insertion site looks ok so I hope that my TX is not delayed.

Michele I have not contacted Franceluxe for a head scarf.  I had a look and there are so many beautiful ones I wouldn't know which one to choose.  Let me know if they do ship to Canada and I will email them too. 

1L I would love to see your head scarf too - Meredith you look so beautiful in yours and I love the design.  But you could wear a paper bag on your head still look great!

It's nice to know that our hair does not define us and the loss of our hair does not stop our beauty from shining through.  I actually think I look better without my own hair and one of these days I'll post my "bald" head shot!

I'll post again later to let you know if I've earned another smiley face!

Here's hoping for little or no SEs and a great day to everyone!

Hugs to all!

Marie

Marie, hope treatment is uneventful for you today!

Michele, I have the same "full" eyebrows/lashes, and they look even more full without my hair to balance them out!  I started plucking them to thin them out, and it seems that they aren't growing back in.  I didn't want to spend the money on a waxing job!  Also, I noticed just today that I have one spot on my left eye where the eyelashes came out.  It's like a little bald spot on my eye!  Not enough for other people to notice, but I sure did!

I'm going to try and post my bald shot - if I'm brave enough!  May end up being a scarf shot.  

Peace...

Meredith,

You look HOT in the scarf! Is this the franceluxe one?

Onty, yes, that's the one!  I really love it, think I'll wear it to work tomorrow.

Guys, I might be dreaming this, but I think there were some "be careful" warnings about waxing brows during chemo.    Don't really remember what they were......might want to check with your oncologists?

Meredith, love the Franceluxe too.  Mine made me feel so cheerful when I got it!  Yours looks great on.........I'm happy with mine, too, although I will probably never get tekkie enough to take a picture and post it here.

Had my first Navelbine today..........so far....so good. 

Hi Ladies!

I'm back home after my 3rd TX - Mary please update my smiley faces!

The PICC line is still viable but the skin surrounding it is a mess.  I had my dressing changed again and will have to go back on Wed to have it checked and changed again.  I'm praying that the PICC line will hold out for the remainder of the treatments (3 left) and that the reaction will settle down now that they are using breathable dressings and only cleaning the area with iodine.

Other than that the infusion went very well.  I remembered to take my Tylenol just before the Cytoxan infusion and today for the first time I felt the sinus pressure during the infusion.  It made it really hard to focus and I had to take my glasses off and just rest for a bit.

So far so good - I've got my med chart ready to go and have already ticked off 2 doses of meds.  I'm going to make myself the exact same dinner I had the night of chemo the last TX and hoping that I have the same outcome as last time.

My daughter tells me that the trend is thicker eyebrows and that they portray a more youthful appearance.  Great just when mine are starting to fall out!  To put a positive spin on it - I've had a few eyelashes wishes over the last couple of days.  Here's hoping some of them come true!

My eyebrows are not growing either - no need to pluck them - and I have noticed a thining spot on my left one.  I'm tyring to make a conscious effort not to rub my eyes so as to preserve my remaining lashes and brows.

Thank goodness for the LGFB workshop!  I have been filling in my eyebrows and applying eyeliner everyday so that when they do fall out I'll be an expert at it (good thing because I never used the stuff before the workshop).

What about the product that Brooke Shields is promoting - Latisse?  Has anyone looked into that for when the lashes start to grow back in?

Hopbird I think I too remember reading/hearing about no waxing during chemo but I can't remember where.  I don't think I'd waste the money now since they'll probably all fall out, regrow, and maybe fall out again before we're done!

Have a good night everyone!

Marie

Dear Mary,

It took 3-5 days for 50% of my head hair to fall. Once it starts to come off in bunches, DH buzzed it down to 1/2 inch. We did that 3rd day after the start of hair loss. Then 2-3 days after that he buzzed it down to 1/4 inch. This way it does not fall off in clumps, you feel more in control of the situation, you see an even amount of hair all around, get used to the loss in couple of steps rather than being reminded of it every minute, and the remaining short stubble that falls off slowly later is not that noticeable.

Welcome Adnerb,  I know you will enjoy our little support group..It is a great place to ask questions, whine, laugh, and share your triumphs, and have a lot of shoulders to cry on. 

Mary,   So glad that all went well.  I was thinking of you often today.  I have another friend who is on the same schedule as you... I emailed the lady about the franceluxe scarves ane they do ship to Canada, all they ask is that we pay the postage..she was so nice.  When you ordered your wigs on Ebay did the colors match the ones in the pictures?  I am thinking of getting one from the same site as you did.

So I guess I willnot be waxing my brows for now...not sure why, but two of you said it was a bad idea...perhaps for now i will just pluck out the out of controle ones.  Now I am scared to use mascara.  I don't want the lashes to fall out. At the same time. I NEED mascara...Oh the delema..

Good night to all

Bushy Brow Michele

I'm only talking the odd stray..

Hi ladies.   I've been talking with a few companies regarding giving BC.org girls some discounts or at least free shipping on their orders for head coverings.  If you're interested in free shipping on Buffs PM me for the code.  The owner doesn't want the code to get out so I have to ask that you don't post it openly. 

I have one and I love it.  Aside from baseball caps, it's the only one I continue to wear now that my hair is growing back. They are seamless, soft and breathable.   I think they would be great for sleeping caps.  I wear mine hiking and it doesn't make my head hot.

How to wear the buff   http://www.youtube.com/watch?v=-5OBlXWJ2Ek

Order at  http://www.planetbuff.com/  

If there are any other companies I should contact for discounts or free shipping let me know.  I'm happy to do it.

BTW....I'm not working for the company or receive payment in anyway. 

Hey ladies...

Good Morning America did a story on new guidelines for mammograms this morning - recommendation to start at age 50 which would leave many of us is deep s**t with our prognosis.

GMA did speak with me and I had been interviewed and although my quotes were not on the story on national tv, my photo was on.  For those of you who are in central, mt. and pacific time zone, it was the interview at the top of the second hour where Robin Roberts was interviewing Dr. Weiss and Dr. Love.  I am WITH HAIR - top right corner of the foursome on the screen.

I hoped they would empahize my position that early detection was also necessary for Quality Of Life and not just survivor rates.  As we know, once the tumor is large and/or lymph nodes are involved, the treatments are grueling an our productivity and QOL is substantially altered - not to mention the effect it has on our families.  I did see that the woman they chose for the on air interview (she was in NYC and my being in FLorida was not convenient)  - who clearly has had a tough fight, did talk about family so that was brought up briefly.

Anyway, I hope to see the surgeon today to see about the darn Right breast lump issue.  Thanks to all for your positive thoughts( I do feel them and I am so grateful) and also compliments regarding my new profile photo sans hair.

love and peace,

Jaclyn

Anita, hopefully the neuropathy stays manageable.  I did hear a woman yesterday talking to the pharmacist at chemo and it sounded like there may be things they can give to help manage the discomfort if it gets too bad.

I hate the new guidelines too.  Mine was found at 48...hate to think what another 2/3 years would have done.  Sorry, I just don't see how denying people the best they have is going to help anyone advance anything or find anything better.  (The rationalization I've heard on TV.)

Michelle, I snagged a few strays too...  I THINK the non-waxing has to do with skin being more delicate, and the hot wax and being pulled which causes irritation during normal life can cause something much worse now.  If I could remember who told me it would help........sorry.

Renee, thanks for the link to the Buff website - I never heard of these before, they look really neat!  Since I'm going the scarf route (rather than a wig) I'll need some more, so I just might give them a try.

Jaclyn, I saw the story on GMA this morning.  It makes me sick to think that some group has decided that saving a few women's lives isn't worth it because of false positives.  I think I'd rather have a false positive and find out it ISN'T cancer than not have an actual cancer caught by a mammogram.  Even though my cancer wasn't seen on a mammogram, I'd hate to think that if I hadn't happened to feel my lump, that I would have had to wait years before a mammogram would have helped me (I'm 36 years old!).  

Marie, I'm glad you were able to get your treatment, and hope they're able to resolve the PICC line problems soon.  

Anita, I'm sorry you're experiencing the pain of neuropathy.  Definitely talk to the onc/pharmacist to see what they can do to help you.  Several years ago I experienced neuropathy in my feet from a medication I was on, and it was awful.  Not that it was excruciating, but that it was constant and nothing seemed to alleviate it.

Mary, I shaved my head about 2 1/2 weeks ago when my hair was coming out in clumps.  I still have some patchy stubble, but there are areas of complete baldness.  For a while there, I was worried that I had shaved prematurely, thought I would still have lots of hair because the stubble was hanging in there for so long, but in the last several days the stubble is getting less and less.  The weird thing is, I still have all my arm hair!  Anyone else?

Hope everyone here has a great day, with minimal s/e's!

Non-cancer update: I am getting MARRIED on Dec. 12!  We were originally planning a March wedding, but with all of the fatigue and side effects, I didn't think I had it in me to plan a big wedding, so we moved the date up and are making it a very small, intimate wedding of only about 20 people.  We will get married on Marriage Island on the San antonio Riverwalk, then walking to a nearby restaurant for a "reception".  I'm praying that I'll be feeling good that day!  I planned it for the weekend right before treatment, in hopes that I'll have some energy.

Peace...