Has anyone started a forum for Chemo in Dec 2008?

Ok, the hair is gone, and here's the pics - my oldest son and his almost 14-yr-old twin daughters came today and took the scissors, clippers and electric razor to it!  We had a great time, and the laughter made it a lot easier.  I had not yet really started shedding, so am wondering if I'll be able to escape some of the hurting, burning, itching, etc., but who knows...am taking notes on what has worked for others, and already put some lotion on my head

now have to get serious about getting some decent hats and deciding if I'm going to get a wig

simvog - thanks so much for keeping the list up

bold - hope you're feeling better

hope everyone else is doing good, I know I feel so much stronger being a part of this wonderful group

Hi Alyssa, I just looked up Avastin and you really do need to wait until you are healed up before having that.  I don't remember, is this part of a study you're part of?  I know it's been really disappointing for you but it's better to be careful.  I hope Monday can be the day for you.

Colleen, I didn't realize you weren't losing your hair.  Is that typical with CMF?  How unfair for someone to say if you don't lose your hair, you must be ok.  That is only one of so many SEs that we have to deal with.  Not to mention all the emotional stuff too.  I think most of us have ports for our treatments so we don't have to deal with the finding a vein thing.  How many treatments are you getting? By the way, I had a friend come by today and she was saying how great I looked.  I had no makeup on, I was wearing sweats and had a nasty little scarf on my head.  Then she said, "Did you lose weight?"  Ya right.  I've gained 20 lbs in the last 3 months.  I think they don't know what to say or they're trying to make us feel better about not feeling good.  But that hair comment? That is unforgivable.  Hang in there.

Colleen, so sorry about the comment. At this point, I've gotten a few, ready to snap back! LOL! A week into my first tx, someone told me I looked great to which I answered "I might look great but I still feel like crap!" oops!

Cat, the top of my head was very painful and was the biggest reason for me going bald around the house. Everyone uses a pet roller, you can use tape, big shipping labels.. anything sticky BUT NO WAX to get the stubble out. I found that whenever my head would hurt, I would "tape" it and it would feel better. Since they're stubble, you can't really pull them.

msbusdriver, DON'T USE WAX. When I went for the LGFB program, I asked her about waxing my upper lip which is beyond due but never got around to do before tx, she said not to use wax. With tape, you remove what's falling, with wax, you pull hair and it might irrited your skin pretty bad. I would use an electric razor before I would wax. Just my opinion.

Well, I figured out that my dry scalp is really a rash The top of my scalp is dry, but the back of my head from ear to ear is a rash. Red little bumps all over that itches pretty bad. I got a tube of hydrocortisone yesterday, it's barely helping. Called the onc on call last night, she said to try benadryl cream and if that doesn't work, to go in on Monday to show them my head. No fever, altough after telling her no, I took my temperature to find 99.5F! My hopes are in benadryl or it will have to wait till Tuesday as I'm going for my citizenship test on Monday and driving my parents back to the airport after.

About the weight... my dad just told me, that since I don't have much of an appetite, maybe it would be a good time to lose weight!!!

I slept all day and night yesterday.  Aparently the steriod they give me isn't having any affect on my sleeping.  I took an Emend so I have no nausea and I'm still able to drink coffee this morning.  I just hate the smell that gets in my nose after my TX.  It's just yuck and I feell I can smells the drugs for days.  I was sucking on some mints yesterday during TX and that seemed to helped.

My booty rash seems better today.  I didn't mention it to my Onc.  I didn't want him checking him out!  I've been putting Cortaid on it.

Divas, I'm hope you are all doing well today.  Hugs, Elaine

Hi Mary

Basically it is a soak for your tub that helps pull toxins from your body.  Very much like what you would get at a spa.  The soak is made from sea water/botanicals and seawater is very therapueutic.  I have many clients who have fibromyalgia and RA who use this on a regular basis.  Not only does it help pull toxins from your body...it really nurtures and softens the skin.

I forgot to order more before my second TX...I forgot I had given my last packet away! LOL

If you want more information, let me know. It's actually on special this month...normally $65 for 8 packets...this month only $29.  I'm stocking up!

Welcome Mombos!  I have found that the more I exercise and keep active, the less I have the pain from the Neulasta!  I know that sounds counterproductive, but it really works.  I did have one night that I couldn't sleep because of the pain. 

Grancy...you look beautiful!  I haven't even worn my wig...just been wearing hats and scarves....but everybody is different. 

Colleen...most people open mouth before engaging brain!  Sorry you have to put up with that.  People keep telling me, "You don't look or act sick."  I'm not sick!  I had cancer! 

Elaine...glad the booty thing cleared up...I wouldn't want my onc checking that out either! LOL

I'm still enjoying my spicy foods...the hotter the better! LOL

Hugs

Lisa

Colleen:  Sorry you have had to put up with the rudeness of others. I'm on CMF too and I think that alot of people think if you do not lose all of your hair, you can't be on chemo.  At least that is my experience with so called "well meaning" people saying things similar to what you had.

To all of my sisters on this thread,  I would like to wish you a wonderful 2009.  May we all have positive news about our health, positive relationships with our families and friends, happiness,  and peace.  

Mandy

Spicy food is working pretty good for me still.  I just made a Taco Bell run and got my standard tostada.  I couldn't eat all of it.  I took another Emend this morning but my appetite isn't quite there. 

I haven't had too much problem from the Nuelasta shots.  Just some mild pains a few days later but all I'm taking is Tylenol and that helps.  Walking and exercise does seem to help. 

When I was at the chemo clinic yesterday I as sitting there waiting.  An older man who was very friendly started talking to me.  The first thing he said was "So, how's your cancer going?".  That threw me a little bit.  My reply was "well, hopefully it's gone but my chemo is going just fine".  I couldn't shake that comment and it's still bothering me.  Another thing I get is from coworkers.  On days when I'm feeling really rundown and pretty crappy but trying my best to make it through work, I'll get the question "what's wrong?"  "Well, what the hell do you think is wrong???"  I want to say.  But I bite my tongue and just smile and say "the chemo". 

Mary, I'm sorry the "dreaded hair" day is here for you.  You will feel better once you buzz it off.  It was tough on me for a couple of days but it gets better.

Lisa, I would like more info on the detox soak! 

Well I'm going to slap my cap on and take my little dachshund to see the ducks.  It's warm and sunny out today and I'm going to take advantage of it.

Elaine...love the new photo.....you look gorgeous!  I'm thinking hair is highly over rated at this point.  Getting ready to head out is so much faster.  Put on my makeup, choose my hat or scarf and I'm out the door!  Now I know why my daughter gave up on the wigs! LOL

Yes...I'm loving the spicy food!  That and anything salty!  I just talked to my sister, who is 38 and was diagnosed two weeks before me.  She had 6 rounds of AC and is now getting 12 weekly rounds of Taxol.  She can't taste anything salty....but sweets taste good to her.  Strange! 

I'll PM you ladies who wanted information on the soak.  Getting ready to go see Seven Pounds with my family!

Hugs to all!

Lisa

Hello all - I'm happy (well not happy, but you all know what I mean) to read that I'm not the only one who has "friends" who say stupid things.  Sometimes I think they just don't know how to respond.  I plan to take good mental notes so if I ever know anyone else in my lifetime going through something horrible like this, I will remember what NOT to say.

I am still on IV antibiotics for my breast infection.  It is finally clearing up, so hopefully I'll be good to go for TX#2 on Tuesday.   The nurse said I have cellulitis (how did I get it??), which freaks me out a bit b/c I'm reading that many have had to have their expanders removed since the infection did not clear up.  I go to see my PS on Monday for an expander fill.  They probably won't fill, but at least I can have her take a look and ease my mind, hopefully.  Anyone else experience something similar with their expanders?  Is it possible for the skin to reach a point where it just simply shouldn't be stretched anymore?  I'm only at 260ccs, so I hope I'm not there yet.

On the hair front...still lots of stubble with bald spots.  Does it ever just all come out?  Is it not safe to shave it all the way down?  The stubble falling out is driving me crazy.  The lint roller is a great idea but there's still tons on my shirt collar, sink, pillow, etc.

Cebula - Thanks for the warning about the wax.   I chickened out anyway. I got to thinking about the possible irritation and just couldn't do it.  The Noxema I spread all over my head before showering really soothed it so I guess that will be my new routine.

Lisa - I am really enjoying spicy food too.  Hot wings......mmm  Italian food is delicious now, too.  Salt is bitter and sugar is no taste at all.

About friends saying stupid things - I love to torment my friends when they accidentally say something like, "Well, I'll go on and get out of your hair."  I tell them that was so cruel...then giggle........Or if they say something about a bad hair day.  Hee hee........I say, "At least you've got hair."  We just laugh about it.  I love teasing them and they take it so good.  If there is something I don't want to do, I look at them all pitiful and in a whiney voice I say, "But....you know I am sick, I don't want to."  My best friend was talking to me about using the "I'm sick" excuse on my family today and she told me to milk if for all it was worth ......then she said, "Maybe milking it was a bad choice of words"  LOL.  She's the best to joke with.

Welcome mombos to this wonderful group, I hope you will enjoy it as much as I do.

Lisa, I would love to know where to get the detox soak and at that great of a price makes it even better.

Firni, yes the Avastin is part of the study that I will be involved in. Thank you for confirming what I was told that day, I think I was so depress about the whole thing I did not have the heart to do any more investigating about it. Thank you Thank you.

Jordie, I am so greatful to hear someone else went through my situation and has finished, I can see the starting line and can not wait for this to begin, It seems that 4 AC every two weeks can not pass soon enough for me, I am not allowed to go back to work until I start the 12 weeksof T chemo, I am hoping that life will seem closer to normal then.

I am so shocked to hear what some people are saying to  everyone.  Everyone seems like they are handling it with such grace.  I hope that I will be able to be as tactful as all of you and that no one catches me on a really bad day, I may scare myself, sometimes words just fall out of my mouth before my brain can catch them.

God bless you all.

Hi Mombos,  My PS will do fills during chemo but he'll only do them a day or two before a treatment so he's pretty sure the WBC count will be high enough.  He doesn't want to be the reason for an infection.  That's why I'm only getting one fill per month now.  I have two left.  I'll be glad when that is done.  One thing I have noticed with just getting a fill once a month, is that the muscles and tissue around the expander soften and relax.  It's a rather nice change from the hard shells they become right after a fill.  I know there is a point where you shouldn't stretch the skin any more.  It will compromise the coverage of the expander /implant or if the skin is stretched too much, it can allow the implant to have creases and wrinkles in it.  So even tho I have a goal in mind for my implants, I am relying on my PS to be the expert and draw the line if need be.

I still have a few little dark stubbles left and a bunch of really light fuzz on my head.  I'm really not losing any more.  I can roll it and nothing comes out.  Maybe I'll stay a fuzz head.  I  guess that would be ok. 

Alyssa I'm glad you're feeling a little better about everything.

I have spent all but about 3 hours in bed actually sleeping today.  I  can't wait until I feel a little better.

Oh ya, the spicy food?  I've been putting Franks hot sauce on stuff just to taste something.  I can taste that and peppermint.   

Mombos- Sounds like you are on the same schedule that I'm on. I almost felt like I was reading my own post! I too had pain from Neulasta. It nearly made me cry. It took a couple days, but warm baths and Advil (600 mg) helped.I also thought I was going to be one of the lucky ones not to lose my hair and then I started to see that when I grabbed a handful of hair, 10 or more strands pulled right out. I knew this day would come and now it's hear and now I freaked. You all seem like you handled it really well. I'm trying to follow your example. I guess I'll handle it like I've handled everything else - with my head held high! Did you all just take the clippers to your hair? Did you have a guard on them? I think I'll have my son buzz me tomorrow. We go back to school after a 2 week break on Monday.

It's interesting how we all taste different food. I can't stand peppermint! Love coconut & banana though, still having my daily banana milk shake with breakfast, that will be a hard habit to lose.

Lisa, how was the movie? We almost went to see it today than ran out of time.