January 2013 chemo group

smethot

I hear you, Debbie.  I've no idea if i'll have the balls (or ovaries as the case may be) to go commado-head...but i don't know what a wig is gonna feel like in 35+ degree weather, either.  Just fun as hell, isn't this??? 

And Zorina, wouldn't it be soooooo much fun to be able to whip out a scarred boob, flash the complainer and say, "I'm beating the s*** out of breast cancer and going through chemo...I WIN!  Now sit down and shut the hell up!!!".  Shan 

Skigirl72

I cant wait to figure out how to put on eyebrows and lashes. UGH! LOL FUN FUN FUN!!

smethot

The eyebrows are my frickin' kyptonite.  i bought the box 'o eyebrow kit and it has stencils and instructions but i know i'm gonna go through hell and back to look even partially normal.  I swear i'm stressing more about eyebrows than hair...worst case with hair, i jam a hat on my head and be done with it...eyebrows?  Riiiiiiight.  I look like Cruella DeVille or Brook Shiels on crack.  Great look to be sportin' while bald.  NO ONE will stare...

The eyelashes on the other hand don't LOOK too hard.  That said, i have yet to try my less-than-steady hand at that either.  I may end up with eyelashes stuck to my forehead instead of eyebrows...who knows.  Being folically challeged sucks.  Shan

martha323

smethot - I was very anxious, to put it mildly, before my first chemo last week on January 31st. When I'm anxious I talk too much and often laugh at inappropriate moments or for no reason at all ... so I was chattering away and asked the nurse why they don't give Versed before chemo like they do before a colonoscopy or that nice little bit of sedation before surgery so that awareness is obliterated. She looked at me closely, smiled warmly, and asked if I would like some Ativan in the drip. Of course, I said .. and then I relaxed. I may feel anxious next week on the 14th, but if I can do one AC, then I can do the 2nd, and then the 3rd, and then the 4th. I can't even think about the rest of my treatment at this point - when I do it looms so huge that my imagination freezes, fortunately, and I go back to peeling carrots, or drinking Miralax, or whatever I'm doing.

Baby steps for me ... as in "What About Bob". Your description of Neulasta as "weird-ass, etc." cracked me up ...

You'll be in my thoughts and I hope that everyone is graced with what they need to feel some peace this evening.

Martha

LeeA

Of all the headcoverings I've amassed the most comfortable is the ski cap (sans pom pom) I bought at the 99 Cent store.  I even wore it to bed last night.

honeybair

For those who will undergo radiation, I will share my experience with it 11 years ago.  The worst side effect for me was the very burned skin on my breast, but I had a really good burn gel which helped immensely.  My skin healed beautifully and I look as if nothing was ever done.  I am also supposed to have 25 treatments following chemo and mastectomy, but my radiation will be targeted to my lymph nodes of my right arm pit.  I am very leery because I have learned from a post on the lymphedema board that radiation can destroy all the nodes and that this condition will be permanent.  The RO did not mention that  side effect.

As to wigs, I have one which looks really good, but I don't wear it.  I wear cotton knit turbans and a cotton hat at times.  I find these to be very comfortable.

For all of you with young children, my heart goes out to you and I admire your bravery in coping with this illness.

Thanks to all of you for posting your experiences and sharing helpful hints.  Loved the one about using Tums.  I will try that.  Today I received Adriamycin and Cytoxin for the first time, so it is drink, drink, and drink some more.

Hugs and love to all of you.

chgogemini

Hi ladies



Have any of you heard about nioxin. It's supposed to help with hair follicle growth. I read some older posts and there's shampoo and scalp lotion.



Just thought if throw that out there. It's 44 bux at ulta and comes with three items.



G

Bryona

Hey, ladies! Guess who has no pneumonia! Me, that's who! (And, boy, did I say, "I told you so!" a time or two. Yes, it's almost painful to be right so often, but it's a burden I try to bear with dignity...)

LeeA, I'd love to see that rads protocol you were talking about. How are you doing, anyway?

Jubby, awesome news about that BRCA negative!

3littleangels, I'm sorry your children are having a rough time with this, and that that's making things more painful for you. I hope that, with a little bit of time to adjust, they become more comfortable. Hugs to you all, honey.

Zorina, sorry to hear this round is giving you such trouble, but hang in there. Everyone says Taxol is a much easier road to travel, so in many ways, you're already halfway home. (And is it terrible for me to say that I'm not sure it was good that you were too tired to say STFU to that woman? I think she might have learned something from it, and I'm just looking out for her best interests...)

ziffy, my hair loss sounds a lot like yours, and I never bothered to buy a wig. I'm like Skigirl; it just seems like more of a fuss than I'm going to bother with. So far, I've mostly been wearing a buff at home (too cold to wear nothing!) and putting a baseball cap over it to go out. I have a half dozen other hats, but they all seem so fussy. They're cute, but I feel like I'd need to coordinate an outfit, and I'm really more a jeans-and-hoody girl.

Skigirl, they can't give chemo for two weeks after a Neulasta shot, so no Neulasta with the weekly Taxol. Woohoo!

Shannon, as a fellow klutz (did I mention that I fell running down the hall at school one day and broke my face? Bet you didn't even know that was possible!), I feel your relief. That's awesome. Know what else is awesome? A daisy pug!

Bryona

honeybair, I hope your AC SEs are tiny, little, miniscule, boring, invisible nothings. That's my story, and I'm stickin' to it.

Martha, "I go back to peeling carrots, or drinking Miralax, or whatever I'm doing." Yes, drinking Miralax is a big event these days, and one that requires full attention. lol

LeeA

Bryona - 

The first two links include the complete list but in the search process I found some other posts that might be helpful.

Many thanks to omaz for being the guru of rads.

 

http://community.breastcancer.org/forum/80/topic/764183?page=74#post_2463352

 

http://community.breastcancer.org/forum/80/topic/764183?page=142#post_2810892

 

http://community.breastcancer.org/forum/80/topic/764183?page=206#post_2972403

 

http://community.breastcancer.org/forum/80/topic/764183?page=411#post_3297735

 

http://community.breastcancer.org/forum/69/topic/578284?page=400#post_2730755

 

http://community.breastcancer.org/forum/69/topic/578284?page=383#post_2686431

hope49

Thanks, LeeA...you are the best researcher! Another gal swore by corn startch...I'll get more info on that and share.



Yeah, Bryona...no pneumonia!!! So happy to hear that, and hope you kick the rest of whatever it is quickly.

Anonymous

skimommi - the glutamine is supposed to help with the taxol/taxotere muscle aches and pains. I can't promise it did anything, but round two was considerably easier than round one so i think I'll stick with it.  It's pretty yuck (in my 3yo's words), but i put 10 grams in about 2 ounces of juice and drink it like a shot.

Hope49 - (My chemo sister - we are getting the same treatment on the same days).  You must not be having the mouth issues i am! lucky. I would LOVE to be able to eat any one of those things you listed.  Just enjoy and have a sloppy Joe for me please.

Shannon - i don't even know what to say except every single one of your posts crack me up.  Your sense of humor will certainly get you through this.  I will admit, my hair was the hardest thing to lose...still is. That is until my eyebrows/lashes go!  So far they are hanging on after two rounds, but barely.  I am terrified to even touch them because i fear they will fall out faster.

Honeybair - thanks for sharing your experience with radiation. I know it's a while off for most of us, but they already sent me to see a RO. I am very concerned with the long term effects of hitting my lung and disabling my lymph nodes. I know 3-5% is better than 0...but i've been on the internet WAY too much reading articles about the pros and cons of radiation therapy. I so wish it was more black and white for me!  And...i should just do what my drs say and stop looking online.  Yeah, i'm that patient

Anyone have a cure for a tender mouth?  I don't have any sores, but it feels very raw.  I use my rinse 4 times a day, brush with all baby stuff multiple times a day, use biotine mouth gel.  I think next round i'm going against dr's advice and sucking on ice chips.  Yeah, remember, I'm THAT patient.

take care ladies!

cancernoway

Jubby - I'm doing really good.  This week I feel normal, mouth is back to normal except a little tastebud deaden, but the tongue burning is gone and the spicy foods don't taste like salt anymore.  Thank you for asking.  Getting prepared for #2 next week, but trying to enjoy the time off in between.  How about yourself?  Congrats on the negative results!!!

Bryona - WooHoo, no pneumonia.  Now the cold needs to GTFO. 

LeeA - Thanks for the info on the Rads.  Appreciate it very much.

To all of you with youngsters, I hope that things are getting easier for yourselves and the kids.  I don't have any kids but am very protective over people that I care for so I can imagine how I would feel if I did.  You are all remarkable women and I'm positive your children are as well and with such amazing role models they will all come out okay in the end. 

As for the Neulasta shot, I had some neck pain and some hip pain, but nothing that wasn't doable.  I was sick as a dog one day, but not sure it was Neulasta or Chemo.  I had a runny nose for two days that just ran, no cold symptoms, it just dripped for no reason.  The aches and pains lasted until my WBC dropped low enough for it to kick in and when they did and it did, I felt better immediately.  You can actually tell when it starts working. 

I'm a hat, buff, scarf girl myself.  We have 4 weddings to go to this spring/summer and I'm contemplating a wig for those only because we don't know many people other than the bride and groom in all 4.  I'm still on the fence because I don't give a frogs fat ass, but I don't want to make others uncomfortable at such a special event for my friends.  Any body have any thoughts?  My insurance will cover a wig 100% so I don't have to worry about "wasting" money for 4 days, but in my head I still feel like it's a waste and it's something that I swore I wouldn't do. 

cancernoway

JulesDenver - I use the Biotene mouthwash as well and it helps a ton.  I rinse with it probably 10 times a day when my mouth is sore and it really helped.

LeeA

cancernoway - I don't really have any ideas but I sure am laughing at not giving a frog's fat ass.  Please know that I will be using that in conversation as soon as possible with my husband.  He will laugh as well.

bryona - I have skimmy eyes, as opposed to rheumy eyes - meaning, I missed the news on the pneumonia in the first skim.  Great news! 

Bryona

julesDenver, your doc recommended that you NOT chew on ice? That's wild -- my MO, her nurse, and every nurse in the chemolounge (whaddaya think of my new word there?) told me to chew or suck on ice the whole time. Sometimes you just have to say WTF. As for some immediate relief, I think SherylB suggested letting one or two Tums dissolve in your mouth. Maybe that would help. Good luck!

cancernoway, I think I'm going to have to add a new t-shirt to my collection. This one is going to say, "I don't give a frog's fat ass." You're awesome! And I think it's reasonable to want a wig in order to not be a distraction on your friend's big day... but I also think it's reasonable to say that you shouldn't have to hide your craptastic experiences to sooth other people. (Way to stay on the fence, Bryona. Nice one.)

Anonymous

bryona - love the hair by the way. You are rockin' the GI Jane do!  My dr's are the most conservative dr's on the planet.  They claim cooling anything (even the mouth) increases the chances of mets.  Well hearing about all these ladies successfully doing cold caps...I decided to go the the handy dandy internet and look up the risks of this "cooling" thing.  The risks appear to be miniscule if any at all.  Since it is way too late to do the cold caps, i think i'm going to try to save my mouth the next go-around.  I'm wasting away here  I'm gonna try a tums now and see if that can get me through a decent dinner.

cancernoway - thank you for the recommendation!  I just ordered the biotine mouthwash.  I hope that and ice chips do the trick.  oh how i'd love to enjoy a sloppy joe right now.  

chgogemini

My mo has me taking two steroids twice day but its 2 doses of 8 mg 16 total for the day. Does it sound right

gr8flmama21

Wow these boards are too fast for my slow brain.

Cancernoway-I got a wig specifically for a benefit at end of March. I know thats the only time i will wear it. I havent lost my hair yet but i think its coming. Had my 3rd weekly taxol today.

Bryona-that is awesome news.

I have had no neulasta with my taxol.

I too am scheduled for 33 rads three weeks after i finish my 12 weeks of chemo. Thanks LeeA for the links

Did get some migraine meds today so hoping they help with headaches. My dr told me chemo will magnify previous issues (eg migraines) sometimes. Woohoo.

Shannon love da pug

hope everyones se are quiet for them.

SherylB

hope49,

Love your tongue in cheek humor. All the junk food and organic juice. Got a good laugh thanks. I myself had the first things today that have tasted good for awhile, sausage biscuit from Hardees and chili with corn chips for dinner. Don't even want to think about the calories because I just had to melt cheese all over the chili. Oh well had no appetite for days so figured I would get the protein in today. LOL

Sheryl

SherylB

julesdenver,

Tender mouth: For me letting a tums or two dissolve in my mouth seems to change the ph and ease the tender burning feeling. I too use the baking soda/salt/water rinse about 4 times per day. Discovered the tums by accident. Felt like I had a bit of heartburn and popped two in my mouth, heartburn eased and mouth felt less tender. Have tried it a few more times and seems to help me.

Sheryl

martha323

Bryona - Good news - no pneumonia! Miralax appears to be starting to work now (just the news you want to know this evening!) and Nicole offered what works for her as well - thanks again. RumbleRumble  "Chemolounge" = good.

LeeA - thank you for the info re: magnesium - I forgot the rest of the name already - but I'll look at your post again - and the info about radiation as well.

Question: When should I chew on ice? Sounds important! I'm on dose dense AC four times ... and then paclitaxel for 12 weeks. And then more ... getting ahead of myself again!

By the way, have any of you checked out stupidcancer.org? I found it by chance - it's for young adults 18-39 (that would not be me). A website that has a very serious mission to help people in that age group + irreverent humor - well, I enjoyed browsing through the site.

Rest well everyone  - Martha

Nicole503

Hey Zorina,

I am day 13 past AC #3 and I never recovered my energy level.  I also struggled hard with nausea and heartburn this last round, although these things have resolved.  I just saw my MO and got the green light to do #4 tomorrow.  I dread the downward spiral because I imagine that I might find myself in a new bottom, but it is the last time I have to go there and I will hang onto that.

My MO recommended the 3 hour infusion for Taxol because she said it is easier to tolerate than the 1 hour infusion.  I'm hoping she's right!

Anonymous

I hope I'm posting this right. It should be how to do your eyebrows after chemo.







http://m.youtube.com/watch?v=U4lajZWeEyE&feature=relmfu



Paula

ablydec

I didn't realize the runny nose might be chemo-related.  It's so weird to have these random side effects.  Kind of like being pregnant, I haven't had anything drastic, thank G-d, but rather a collection of random stuff.  Like my body has been taken over.

Speaking of,  has anyone else had their monthly cycle get weird?  Like a longer period? Is this related?

cancernoway

Thanks for the input, guess I will go dead cat shopping in the near future.  That should be an interesting day. 

Feel free to use the frogs fat ass at anytime.  It's a fun one. 

I'm assuming the runny nose is from the chemo since I had no cold symptoms at all, just a runny nose.  Then it went away after a couple days. 

I'm taking the same steroid dose the day before, and day after treatment. 

Nicole - I hope you feel better soon and I hope your next treatment treats you better.  Keeping my fingers crossed!

JulesDenver - I stayed away from anything spicy also, that seemed to tick off my tongue.  But the Biotene did help and once I started using it, it got better fast.  Good luck with it.

Good luck to everyone stepping up to the bar tomorrow and I hope everyone feels better and the SE's are minimal!  Have a good night.

Rhonda2

Yep, that happened to me. Longer cycle.

Bryona

chgogemini, it could vary depending on the type of steroid or how much you had in your IV, so if you're worried, double-check with your MO. Having said that, I'm on 4mg of dexamethasone twice a day for the first three days after each tx.

Martha, hooray for Miralax working! I was ready to have a parade when it worked for me the first time.

Nicole, I'm sending you big hugs and lots of positive energy for tomorrow. I know you're dreading it, but it's THE LAST ONE! After tomorrow, AC can kiss your shiny hiney! Woohooooooo!

Shosh (ablydec), you said it exactly right: it's like having your body taken over. So freakin' weird. As for the period thing, I don't know a thing; mine's due any day now, so we'll see if it shows up and what it's like if it does.

Anonymous

Sherlyb - thanks for the tums advice.  it got me through dinner!

Was I just saying how easy #2 was?  About an hour ago i started to itch..only to find a a rash quickly spreading over my entire body!  I took two benadryl and slathered on some Eucerin, but has anyone seen this reaction before?  I've never had a rash like this.

Anonymous

Ablydec - I got my period a few days after i had my first chemo.  I am very regular and this was at week 2..so i have to believe it was chemo induced.  I haven't had one since.

I can't say i mind that SE although i may learn what a hot flash is in the not so distant future