Starting Chemo October 2009

Hopbird

Hi everyone.......

Had my third Navelbine yesterday.  I feel fine today, better than last week.  I am starting to get some tingling in my fingers and my blood counts are borderline, so I get to have Nupogen later this week.....yuck!  I had Neulasta with every dose of Abraxane.  I hope I don't have to start having Nupogen too often.  Of course, there is complication with getting the prescription taken care of.

JoJo, glad you liked your LGFB class.  In my mind, it is two hours, you get tips and free stuff, so what's not to like?

Jaclyn, glad your Taxol was free from excitement.  Enjoy your trip to Colorado.  I have a trip to Florida after Christmas that I still plan to take.  We had it scheduled before my treatment ever started, and it was one of my first questions for my doctor.  She is really good about encouraging me to do whatever I feel like doing.  I feel like living your life to the extent you can is really good for frame of mind.

Anita, sorry you're having so much bone pain. 

Shelby, I'd do pictures both ways.  While you may not want an album full of them, it will be a part of the story of your wedding.......we will look back on this time and remember what we have been through and how tough we really are....us and our SOs.

MARY, if it's not too much trouble can I have smiley faces for my Navelbine?  3 have been completed, 9 to go.  I feel like getting through this is going to seem endless, and it may seem weird but having that little smiley face marked off just feels good.

To all I missed, hope your days are going smoothly and you are enjoying your days as much as possible.

JustmeAlicia

Thanks Scoobydoo ~ My nurse that administered the Neulasta shot today, actually told me very much the same.  I told her I am scared to start ~ she said oh don't be afraid.  IT is easier than the AC.  I fear the infusion allergic reactions.  She said they are prepared for that and nip it in the bud, slow it down and all will be fine. 

Sorry about your bone pain I hope it goes away quickly!

Alicia

MaryNY

Alicia: I noticed you earlier saying you were lying awake because of the steroids. This happened to me after the first AC treatment. I mentioned this to the onc next visit and she prescribed Ativan (lorazepan) which helped both with the sleep issue for the first three days and the nausea on Day 4 and 5.

Hopbird: I added your smileys for the Navelbine. Good to see you are one third through that cycle already.

Shelby: I'd agree with the others about having the wigless shots taken. If you don't like them, or your think your family might be upset by them, you could choose not to include them in the album.

Jacyln: Glad to hear the Taxol is going better than the AC. I'm envious of your trip to Colorado. It will be good for you to get away and have a break from the BC zone.

Enjoyful: Hope you are doing better with the cellulitis.

JoJo: You asked me a couple of days ago about eyelash/eyebrow loss on FEC. I'm on AC rather than FEC. I think you might have confused me with Marie who is on FEC. But I would be interested in general with others hair/eyebrow/eyelash loss on chemo. I've now completed AC #3 and lost most of my head hair a couple of days after Tx #2. I would now describe myself as bald although there are a couple of stubborn hairs still hanging in there. The odd thing is that I haven't lost any arm hair and most of my pubic hair seems to be still there. Leg hair seems to be mostly gone. No change so far with eyebrow/eyelashes. Should we expect to lose those on AC?

valeriekd

Hi Princess Jo Thanks for commiserating w/ me. Thank goodness energy is finally coming back and this w/e we r going to the white mtns in Nh w/ my daughter(her b-day)and six of her friends to a beautiful cabin in the middle of the woods and some shopping in North Conway (locals will know). These walls are getting to me but it does teach patience - does it not?

Scooby doo I get bone pain too - yuk.

JustMeAlicia don't worry too much about an abreaction to Taxol- they stay w/ you and watch for first 10 minutes and they know how to manage it IF it happens- the SEs range from mild to a drag after taht but the s$!t gets out of your system eventually and you feel like yourself again! YAY!

Remember - the solution to pollution is dilution so drink alot of water and don't let yourself get constipated! 

Be well- Valerie 

Sido

Onty, here I got all upset and when I went back I discovered it was the other way around.  The article was from "Cure Today" magazine's fall issue (www.curetoday.com), the 70-30% split that I referenced was the opposite of what I said before.  It is 30% chance of recurrance and 70% not.  I think I mixed them up because when I first found my tumor everyone told me there was an 80% chance it was "nothing," and after my tx I said that the 80% didn't work in my favor the first time, so why would the 70% work for me later on?  I think that was how I got the 70% in my head. 

I don't know about you, but being triple-negative just made me feel like I didn't have any options at all.  There was no way out of chemo (other than just refusing to do it and damn the consequenses), no way out of radiation (except double mx because of BRCA status, which I missed out on), and nothing to do after it all but wait and watch.  I think that's why I got so upset earlier, because I feel so damn powerless over this.  I can lose weight, exercise, eat virtuously and it could still easily come back and kill me because there is no way to target it yet.  

BTW, the Triple Negative Breast Cancer Foundation is also a great site and has lots of info along with message forums.

I'm sorry I got upset earlier ladies. You are all so wonderful and I was just frightened and mixed up.

Be well, Sido

RaiderDee

Sido,

Don't give it another thought.  If you can't get upset here, where can you get upset at?  We understand.  I especially understand being triple negative too.  It really can get daunting when you start to read too many of the stats.  I have told myself that we all have the same chance of recurrence, 50/50.  It either comes back or it doesn't. I know that's a complete oversimplification but it feels like a random coin toss once you've completed all of the treatment they have to offer you.  It's hard but I'm not going to live my life (or what's left of it) worrying about the cancer coming back.  Every day is a gift and none of us are guaranteed a tomorrow cancer or no cancer.  AC #3 is Thursday.  Hoping for minimal SE's again for me and everyone else!  Hang tough ladies, we're slowing getting there.  The chemo will all be over with soon enough. 

unklezwifeonty

Dear Sido,

I'm so relieved to hear that the stat of 70% is for NON-recurrence. No worries that you had mixed them up before. So many of us do that. We can blame chemo-brain :-)

I also feel sad that we only have chemo while other gals have chemo, hormonal therapy and herceptin. Every time this drags me down I remind myself that grade 3 cancer - which most TNBC is - responds much better to chemo than other grades.

DH and I read tnbcfoundation.org and this website several times daily. Both are excellent resources. We are all here for you..... so if you ever feel the need to vent or check on anything, just post it here or on tnbcfoundation.org.

HUGS!!!

micheleboots

Sido, This cancer thing is so confusing...just when I think I know what is going on, I read another article and get more confused...I feel like I live in a fog some days..especially today.  My dr. si great but, i feel like I need a picture book to understand it all.

one-L

I am not sure any of us can understand everything that is sent our way.  I know the numbers come at you from every doctor and they are all different, it just depends on which doctor you are talking to.  I do know one thing, and that is we are all in the fight for our lives and even the smallest cancer can come back and get us, it just depends on which bucket we are in and we have no way of knowing that.  Even a 2% chance of recurrence is a chance, I want to be in the other bucket.

We all just have to navigate these waters the best we can and hope for the best.  I am glad everything as settled and the waters are calm again.  Feel free to vent, rant and rave, we  are here for each other and we all have the same goal.

Hugs for everyone!! 

Juannelle

Enjoyful

Hey - how's everybody doing?

I saw a couple of comments about Neulasta and bone pain in general.  Isn't it awful?  Hot baths and Tylenol help, but good grief.  At least it only lasts a few days.

The cellulitis is changing, but I'm not sure if it's getting better or not.  Did I mention that the red mark looks like a giant penis on my arm?  No lie.  No wonder everyone at the emergency room said "ewwww!" and "oh my GOD!" when they saw it.

Regarding recurrence statistic - don't they drive you nuts?  I absolutely obsessed over them for years until I was diagnosed with a recurrence recently.  Now I just don't have the mental fortitude to look.  At least that's one less obsession to deal with.  :-)

Have a good night, ladies.  Next week I go for treatment #4.  Two more after that.

E

unklezwifeonty

Dear E, lol is all I can say. Please don't think I'm being insensitive ok.

Enjoyful

Oh onty - no worries about that.  It's worth an LOL!

unklezwifeonty

1L, long time! How are you?

MeredithK02

Hi everyone, sorry it's been so long since I've posted!  Seems like life got really busy all of a sudden!  I'm feeling pretty well right now...two days until my last AC!  DH and I bought the Wii fit plus game this weekend and are having a lot of fun with the games.

 Tx, I say get a few pics with the bald head.  Decades from now, it'll be neat to look back and remember!

Jaclyn, thanks for posting about Taxol!  I start in a couple weeks and am really happy to hear that it's going well for you.

JoJo, I'm so glad your LGFB went so well!  

Scooby, Percocet is the only thing that's helped with my bone pain from the Neupogen.  If being on Percocet is a reason to log off, then I'm going to be away for days at a time!

 Hopbird, good look with the Neupogen.  As I just mentioned above, it's caused a lot of bone pain for me.  Make sure you've got something strong to take just in case it's painful for you!  My doctor's office had a really corny video about the injections.  Talk about 80s hair!

Mary, I've had three ACs and buzzed my head after my hair started to fall out *during* the second one.  I'd say my lashes and brows are about the same, maybe a smidge thinner.  No new armpit hair or leg hair since I last shaved a couple weeks ago!  Haven't noticed a difference in arm hair.  Things down south are definitely thinned out.

Enjoyful, I'm sorry about your X-rated cellulitis!  You'll have to take a pic and pixelate it just like they would for TV! 

Goodnight everyone, hope you're all doing ok!

Meredith

azdiva

Hi Everyone!

Enjoyful - You made me laugh so hard!  (No pun intended HAHAHA).  Tell people you did it on purpose.

Meredith - I have the Wii Fit.  It is fun . . . fun to watch my kids jumping around and doing silly motions.  I need to actually get off the sofa and do it!  I have gained at least 10 pounds over the last 3 or so weeks.

Onty - As you know, I am Grade 3 too.  I remember when you told me that Grade 3 responds better to chemo, and I really find comfort in that.  My doctor even confirmed it!  Since I am only 50% ER+, I tend to get bogged down in the "other 50%".

Princess JoJo - you always make me smile.  If I ever make it to Oz, we are going to party!  On what?  I don't know, since we can't do anything really bad/fun anymore. haha 

I am finding myself getting more and more tired as the weeks go on.  I try to maintain my level of activity, but it just isn't working anymore.  And, sorry to say, my Onc doesn't have to worry about my wine anymore.  I just can't have more than one, even if I try really hard!!  For someone who wants to be a sommelier, this is a monumental shift in the cosmos!  I have always loved my naps, but now I find I NEED them.  And I still go to bed around 830.  I wonder how long it takes to get energy back after chemo? 

Well, off to harass my children so they get to school on time.

Love to All -

Laura 

txstardust

This cancer thing is a bear - so unpredictable, and there's so much conflicting information out there.  I think all we can do is be strong, fight the good fight, and hope for the best.  And of course, come here for all the support and caring we can get!

Meredith, I'm glad to see you!  I was wondering how you were doing.  Our dx is so similar, and we found out only a week apart, so I always look to you to see how everything is going.  I'm jealous that you have the Wii Fit!  I've been thinking about getting one for the family for Christmas.  It looks like so much fun!  And getting a little exercise can't hurt.

Enjoyful, I'm just chuckling at your unfortunate injury.  Not that you have an injury, of course, but its shape.  Gotta find laughs wherever we can!

Laura, I'm experiencing the same exhaustion and fatigue that you are.  I fell asleep at 7:30 the other night!  And slept practically 11 hours, then took two naps the following day.  It's very frustrating, because I'm not normally so "laid back", shall we say.  But, it seems like this will be a lingering issue until rads is over, so I've got to learn to deal with it.  I guess this is the universe's way of telling me to sloooooooow down.

I decided to go ahead and get a few bald shots for my wedding photos.  I agree with y'all, that it is a good reminder of where I was in my life at this time.  And this photographer is so great, I know he'll do it tastefully.

Peace to all... 

micheleboots

Meredith, Glad to see you back...I am not sure if it is just me or that you havn't been on in a few days...

Tx, glad to hear you are doing the bald shot...I think it will be great.  Looking back in 30 years, you will be reminded of what a tough cookie you were.

I too and feeling like the world is pooping me out...Yesterday I was a first class b*%#h.  Everyone was bugging me.  The cats were underfoot, the kids annoying and the Dh was getting under my skin..I might be getting a UTI, either that or my urine is burning my hoohaa..I can't tell any more.   I do have a call into my Dr. so hopefully she will call soon..

I find also that it takes me forever to type these days.  I have to go back constantly and fix my many typing errors...It seems like my fingers don't want to hit the right keys...Thank god for spell check...Is this happening to anyone else?

Later,

Michele

micheleboots

We havn't heard from Marie in a few days...I hope she is ok.  I tried to email her but had a problem..hope she comes back soon.

Hollycan

Laura and Meredith, I have the Wii Fit too and love it.  Especially bowling and hula hooping!  :-)

I go in for tx #3 today then I'll be half-way done.  Although I found out last night that my liver panel stat (ALT) was high (68 and supposed to be between 14-54) so who knows what they are going to say.  Have any of you ladies experienced this?  

Laura, like you I love wine and am also studying to be a sommelier.  I had about 7 glasses of wine over the 21 day period between tx's (Onc said it was ok) so I wonder if that's why my test was abnormal.  Hmm, may have to stop the wine altogether.  :-(

Best wishes to all,

Holly 

micheleboots

Good luck Holly.

JustmeAlicia

Hi girls,

TX # 3 is kicking my butt.  I actually got sick last night ~ yuck.  Feeling a bit better today got some toast down.  Just took my emend/decadron combo hoping that helps some.  Holly good LUCK today with #3 and woo HOO 1/2 way that is great !!! 

As for chemopause, I've had mine twice during chemo.  Due again now but not coming so maybe I'm in the "pause" part now. 

Enjoy ~ sorry about your rash, but glad it is in a fun shape.    Hope it gets better soon.

To everyone else a good day with minimal SE's.

Alicia

valeriekd

Well altho I am so sorry for others suffering I am so glad that you have shared Alicia and Michelle-

Altho I was done w/ an early menopause at 44 I got the rest going on. What an irritable B!t^h I am. I have no frustration tolerance, now I have enough energy to stay awake but any task daunts me- typing is rediculous and customer service people on the phone are all lucky I can't do them actual bodily harm. Everything seems to be a roadblock and all who are nice 2 me r still not getting very many special nice moments back. UGH. Can't clean w/o frustration and leaving bucket and mop behind, can't get out of my own way. Enough-just had to share.

Be good-love, Valerie 

txstardust

Alicia - sorry you're not feeling well.  Hope the meds do the trick.

Holly, before my last treatment my ALT was 85, and the nurse didn't seem to be concerned - I had treatment without problems.  She said there are a lot of things that can throw it off, even the chemo drugs, and said it's more important to look at trends.  Congrats on being halfway through with this treatment!!!

I'm going through chemopause - I haven't had my period since before chemo started.  Of course, I got worried about being pregnant - wouldn't that be a treat! - but thankfully tested negative.  So, I guess I'm done with periods for a while.  I can't say that I'm disappointed!  Michele, I've turned into a butterfingers lately, can't keep a hold of anything!  I'm always dropping stuff on the floor.  Frustrating.

Peace to all!! 

P.S. - That's me with my blond wig! 

RaiderDee

Hey Tex, love the blond wig!  I'm also in chemopause.  I haven't had a period since the week before starting chemo.  I really don't miss it and hope it doesn't come back.  I've also had "butterfingers" for a few weeks now.  I'm glad none of my friends or family have any babies for me to hold right now or it could really get ugly! lol Tomorrow is AC #3 for me.  Anyone else having chemo on Christmas Eve?  Three weeks from tomorrow is Christmas Eve.  Yes, my onc's office is open & yes, I am expected to be there.  All I know is the nurses had better all be dressed up as elves and feeding me Christmas cookies or I am gonna be pissed!  It gives a whole new meaning to "T'was the night before Christmas."  I hope everyone is doing well.  Hang tough ladies.

All I want for Christmas is a rash on my arm shaped like a penis....

Dee 

MeredithK02

Dee, I don't have a session Christmas eve, but I do on New Year's eve!  Nothing like ringing in a new year...from the chemo suite.  

 I would get super-annoyed at elf-dressed nurses.  "You know what I really, really want for Christmas?  Not having cancer.  Could you get on that?"

valeriekd

Hi Meredith - got chemo New Years Eve too. Decadron should keep us up til 2010!

joanneasiata

HI all

Me to I'm such a dumb cluts now and  chemo brain is still around ,my family are being very patient with me, dont know how long that will last for .

I would love a penis on my arm hope it is a big one, shame its not removable you could have a bitof  fun with it .

I'm doing a Christmas eve cocktail as well so we have wiped out Christmas this year maybe have a late one .

ONE MORE SLEEP TO GO then ill be on here with my violin playing for myself

JOJO 

one-L

enjoyful, what a thing to have on your arm.  I hope it gets better soon.  I take hydrocodone for the pain.  I am happy living in my chemical world these days.  Getting ready for tx #3 on Friday.

onty, I am doing fine, thanks for asking.  Working this week, getting ready for tx on Friday so I will be off again next week.  Had a great Thanksgiving and visit with my grandbaby.  I hope you are doing well. 

meredith,  good  to hear from you, you always have such good posts.

laura,I know what you mean about being tired.  I am going to bed about 9:00 and probably sleep in my chair for about an hour, before I get up and finally go to bed.  I hope I get some rest next week after my tx on Friday.  I don't want any wine either along with lots of other stuff.

tx, you will be beautiful in all your pictures, hair or no hair.  I think it will be wonderful.  You go girl.

michele, I have the same problem.  I make so many typing errors.  Here and at work.  I have to read and reread everything.  I hate it when I look at stuff after I have submitted it and there is this glaring mistake.

hollycan,I also have the Wii Fit and haven't been on it in awhile.  I need to get back with the program, I am gaining weight now and can't seem to stop eating.  That will be taken care of on Friday when I have TX #3. 

valerie, we must all be in the same boat with the fatigue.  I even tried to use my cancer card at work today.  I was so tired and told them I needed a nap, in reality they probably would let me take a nap, if I really needed it.

Dee,I am on the schedule to get chemo on Christmas Eve.  They will tell me this Friday exactly when it will be.  I am hoping that they will schedule  it for the Monday after.  But I am usually good for a couple of days after tx, so maybe it wouldn't be so bad.  Good luck to you.

princess Jo, you make me laugh so hard.  I also have chemo brain and it will be worse after my tx on Friday.  Hope you have a good evening.

My left arm is hurting so bad.  I don't know what to do with it.  It is not a muscle, it isn't swollen.  My surgery and node removal was on my right side, so I don't know what is up with my left arm.  I started about the time my port was placed, but I don't see how that could be causing it.  I have been having to take pain meds for it.  Does it ever end.

Have a great evening everyone.

Juannelle

jeanl151

tx - I love your blond wig.   I agree with the girls, you should have a wedding picture a la natural.  I keep thinking I need to take a picture of myself without turban or wig but haven't had the nerve yet.

  wig question - does any one else have rash/pimples on the back of head where wig sits.  My head is such a mess,  my wig slips a lot and I have ordered a cap to see if it helps.

  this is a good week for me. It is week prior to tx #3. i am not looking forward to feeling lousy again. #4 will be on the 30th of month.. I will probably sleep thru the first day of new year!!!

Valerie - sorry you are having a tough round.  I had the grouchies about 6 days after last round of chemo.  This is so tough on our bodies and souls.

hang in ladies - we will get thru this.......Jean

txstardust

Dee and JoJo (and anyone else I missed) - good luck with tx today!  I'm sending good healthy vibes your way!

I had my last tx on the day before Thanksgiving - I actually felt ok on the day of Thanksgiving, but it was no fun to be there.  Maybe for Christmas, y'all will get the present of no side effects!  Well, a girl can dream, right?   

Juannelle, I would definitely ask the doctor about your arm.  I know we worry about every ache and pain, but we have to!  Especially if it hurts so much that you're taking medications.  If nothing else, you will get peace of mind from the doctor.

Jean, I don't have the wig issues - but I do have a little cap-type thing that I wear underneath and it keeps it from moving.  Some others have experienced pimples on their head; my "hairdresser" (the lady who shaved my head) suggested using a facial scrub on my head, which I have been doing instead of shampoo, and I haven't had any problems in that area.  It may just be irritation from the wig, if that's the case, the cap should help.

We're actually expected to have up to an INCH of snow tomorrow!!!  I can hardly believe it!  The last time it snowed like that here was when my 15 year old daughter was a few months old.  I'll be taking pictures for sure.

Have a great day everyone!

Peace to all.....

~Shelby