Starting Chemo October 2009

DebbiD

Finished # 4 - yay!!  This time the side effects have been completely different.  The first three tx SE were mostly severe heartburn, mouth sores, general malaise. (I'm on taxotere and avastin) Yesterday I had a fever in the 100.4 range most of the afternoon and all night. I'm weak and achy and wiped out. This morning my temp is normal but am still very fatigued. And my fingertips look like they've been singed!  I guess it's really true that each tx has its own SE!

The NC snow is a lovely diversion!  Wish all of you the best!

snuziq

Sido - You are NOT ugly.  Hair was only one part of your beauty.  Big hugs for you.  It will all be okay.  

P.S. I'm sending nija monkeys to kick the hat hair lady's hiney!

 Shelby - sorry you are so tired sweetie.  Get the rest your body is telling you need.  I understand your fatigue and know how frustrating it is.  Hopefully, it will get better soon.

Suz - your HO comment made me laugh.  Thanks!

 Ladies, I see a lot of discussion about Mary's onc and the unsure number of treatments.   My onc has always said "6 or so" treatments.  Since we have had to change my meds twice, I have no idea how many I really have left.  He's been honest about it not being an exact science and I have respected that honesty.  I have never doubted his abilties as he was referred by a several trusted sources including a doctor who went to him herself!

Oh, well off to bake the cookies I was too tired to make yesterday - got the fudge made but little else.  Happy Saturday everyone.

MaryNY

Hi all: thanks for your concern about my onc saying "I'm making this up as I go along." This was really not a surprise to me as just as Snuziq's onc said this is not an exact science. I was glad my onc was honest with me. I do trust her. Every week, there is a tumor board conference and she has brought my case up twice as it's a little unusual. So she has benefitted from the group opinion. They have agreed that it would not be a good idea to give me a taxane (Taxol or Taxotere) because of the risk of neuropathy. Since the taxanes are the drugs of choice for treating BC today, she was forced to look at alternatives. Hence the AC-->CMF, but combining these two regimens is not a common choice. There are no studies to show the effectiveness of this combination. Typically CMF, which was more common in the past, is used nowadays for node-negative BC. I'm node-positive but I'm presuming that combining it with AC should whack any cancer cells that are wandering around.

unklezwifeonty

Dear Mary,

I agree with you on trust wholeheartedly. You gotta trust the team to do the right thing. Of course, verify from time to time!

MarieK

Hi All!

I've been trying to catch up on all the posts - pages and pages - a little each day.

Shelby - I loved seeing your wedding photo!  What a good looking bunch you are and so happy! 

Suz would love to know what street you walked - we're over in town today and could maybe do a drive by.  Please let me know

It's great to read what everyone is up to for Christmas prep and sharing all the aches and pains of TX. 

It's nice to know that we are all going through this together.

I too am whacked out from fatigue - TX #4 has hit me the hardest so far.

I have been going to bed early (some nights 6:30pm) and sleeping through like a bear in hibernation.

I too have the racing heart with little exertion, I get out of breath easily and just want to wear pjs and sit on the couch all day.  I've gained weight (jokingly saying that I need it for my injections) and I feel so out of shape.

I feel bad that my house is a mess with stuff everywhere.  People are still dropping food and baked goods off (so sweet) and driving my kids around for me and it makes me feel ashamed that when they come by there is mess & piles of stuff everywhere.

I won't lift anything now because I've had more cording issues with my SNB arm.  I guess I was over using it with trying not to use my PICC arm.

So I have rubbermaid bins in the hallway with leftover Christmas decorations that need to be taken out to the garage, laundry baskets that need to be taken upstairs, boxes of stuff that I've filled for Salvation Army to pick up but they are not going anywhere because I can't do it anymore. 

Hubby has been busy with work (& Holiday smoozing) and the kids and too tired to move the stuff or maybe he just doesn't see it?

Luckily I'm done my Christmas shopping and all my gifts are wrapped and under the tree so I don't have the stress of that.

This week is my 3rd week (normally my good week) and it will just fly by I'm sure with the kids out of school and various Christmas family get togethers planned.

My next treatment (5 out of 6) will be on Dec 29.  I also waiting to hear more info about RADS. 

Keeping my fingers crossed that I won't need them or that they will not interfere with our family vacation Feb 12-19.

Hope everyone has a good weekend and gets done what they need to without too much trouble!

Hugs,

Marie

valeriekd

Hey Suz if you felt good after putting on PJs it COULD be just tightness around the intestine- if you r a little constipated that could happen or especially if u suffer from IBS. 

The leucozepin is not prescription it is a combo of 15 chinese herbs but has a lot of research behind it - just expensive 100 bucks a month.

Got some ses today but I think better than last time ? Who knows just doing the do.

Love to you all, Valerie 

valeriekd

Hey Suz if you felt good after putting on PJs it COULD be just tightness around the intestine- if you r a little constipated that could happen or especially if u suffer from IBS. 

The leucozepin is not prescription it is a combo of 15 chinese herbs but has a lot of research behind it - just expensive 100 bucks a month.

Got some ses today but I think better than last time ? Who knows just doing the do.

Love to you all, Valerie 

suz45

MarieK,

Its Trinity Street not too far from the port. We parked where it said "resident parking only" but had no problems and saw no tow trucks either. Gotta run... Hugs Suz

micheleboots

Had my neupogen shot today and all went well. I didn't pass out and was even able to look at the darn thing.  Tomorrow will be DHs turn...might just pass out then.

 Feeling good today...no bone pain yet...yippy skippy for me.

later lovely bald warrior chicks

one-L

marie, if you are having trouble breathing, gaining weight and such you might be retaining water, just like me.  I am 2 weeks out from 3rd tx and I still am fatigued and can't seem to get past it.  But this week I had low RBC and then I gained 10 lbs from last week, so now I am taking Lasix for water retention.  Just can't seem to get past one thing then there is another.

sido, I received my free scarf today from Good Wishes and I will send it to you if it would make you feel better.  I also have an extra wig, it is platinum and short, but not real short.  I know you wouldn't get them in time for your sister's visit, but I will be glad to help you out.  Everyone that I have had to deal with on wigs have been so understanding and realize how important they are to us.  If you want my stuff, just let me know and I will  overnight it  to you.

snuziq, glad  that you have the energy to bake, I don't  think I could  if I wanted to.  Send me some cyber cookies, I know I will enjoy them.

michele, you are so brave to give  it to yourself.  I have 4 neupogen in my fridge waiting for me.  I do not have to give them to myself.  I think  I could, but I don't  want to.  My pain starts about 4 or 5 hours after the shot.

valerie, glad the SEs are miler this time.  Mine seem to be getting worse.  But it will be over soon for me.  I am soooooo  ready.

debbie,congrats on finishing #4.  Hope you don't have severe SEs and manage to have a nice holiday season.

maryNY, you got to "trust the one your with".  I hope everything turns out well  for you and that you don't have to do tons of more treatments.  I am sending Hugs your way.

Onty, good evening to you, hope you  are having a good restful weekend.  Are you caught up in the snow storm.  It makes me glad I live in Texas.  It was about 60 degrees here today.  Sunny and bright.  We never have a white Christmas.  I would like to be somewhere once where there would  be a white Christmas. 

I am still fighting the fatigue, it just wont go away.  I went to bed at 8:30 last night and slept all night.  I am so tired of being tired.

Hugs to everyone,

Juannelle

MarieK

Hi again!

I want to ask those of you doing Neupogen if you are getting little marks on your skin where your injection sites are?  They look like little white round circles with red circles around.  The red circles are somewhat dy feeling.

I have 7 injections after each treatment (day 3 - 10) and I noticed this time that I had marks on my legs from my last 2 injections from TX 3.

I'm done the injections for this round but I can see every injection site I used including the 3 that my MIL gave me in my backside.

Anyone else getting marks or irritated by them?

Marie

MarieK

Oh and one more thing....

Hair check: I'm 12 days past TX #4 and I've lost just about all my eyelashes (using eyeliner heavily to compensate) and my eyebrows are getting sparse in parts too (I use a light brown pencil to draw them in now).

one-L

marie, I have also been getting Neupogen and I always get them in my stomach.  I can't see any marks where I have gotten the shots.  I still have lashes and brows, but will see how it goes after tx #4 next week.

unklezwifeonty

Marie,



I'm also losing eyebrows and eyelashes. I still have 2 more Taxols (Abraxanes really) to go.



Re marks for neupogen shots, I take neulasta once in 2 weeks and the shot marks disappear in a few days. Yours should disappear soon too. I'm guessing your skin heals slower that's all. Or maybe the MIL is giving you something else :-)



Dear One-L,



Yeah we are already snowed in with a few more inches to fall tonight. The forecast is approx a foot and I think it will exceed that by morning.

The dam thing looks good the first 2 times in each season and after that, if I could trade it for some Texas warmth, I'd do it in a heartbeat!

one-L

Well, I hope all  you East Coast bc sisters have lots of hot chocolate, a nice warm fire and a good snuggie to wrap up in.  Best of luck to all of you in this snow storm.

Juannelle

micheleboots

Juannelle, my DH gives me the shot.. I am a big chicken..

So I am hyped up on roids...helped Dh rip out carpet, and underlay, took out baseboards, and removed nails. and cleaned house, like it matters...my mom comes tomorrow so house should be gross...oh well. nothing like stress for the holidays.

azdiva

Hi All!

Onc prescribed me a little tablet for my mouth sore.  It says to use 5 times per day. . . . IT WORKED!!  In one day!!  I still can't taste very well (I guess that was too much to hope for), but at least I don't have the awful pain on my tongue.  You can still see the spot, but it is fading really quickly.

Still have TONS of Christmas shopping to do.  But I am trying not to get stressed.  Just one day at a time.  Yesterday, I took my son out to get snowboard equipment (he is going to Snow Bowl today).  I told him that this is his present.  On Christmas he can open boxes with notes in them that say "Snowboard," "Boots," "Jacket," etc.  He was pretty darn happy with it, so I am done with him at least!!

I am going to a Christmas dance show with DD tonight.  She is NOT in it, so we can actually sit together and enjoy it!  Still working on her presents, but I will powershop tomorrow!  Her birthday party was a blast.  The party bus was painted all over with Marilyn Monroe pictures.  The kids danced and sang.  We went to dinner and then drove around.  Finished up at my friend's restaurant, where the kids were served mock martinis and had cake.  

My kids are so much fun now.  They are 14 and (as of the 16th) 12.  They enjoy so many of the same things I do.   

Anyhoo!  Just wanted to wish you all a Good Morning!  I hope everyone is feeling well today!

Love ya!

Laura 

MarieK

Good Morning All!

I took a closer look at the Neupogen injection marks - they pop up all red after the heat of my shower - well I don't think it's from the med at all.  I think it's from the adhesive on the little round bandaids I use to cover them up!

Anyone else having sensitivity to adhesive? I swear before chemo I could wear a bandaid no problem and the dressings used on my MAST incision did not do this to me.

I'm going to try something different on my next round of injections - not cover them at all - and see if that makes a difference.

I'm a bit worried that now that I have this sensitivity it could affect my healing for reconstruction later on down the road.....

Laura - I love the party bus idea!  I'll have to remember that one for next year (for DD).  My 14 yo son wants snowboading stuff for Christmas too but for the amount of time he'll go we'll probably just rent.  Even though we are less than 1 hour from Whistler, and have 2 other great ski mountains (Cypress & Grouse) within minutes from our house he just has too much other stuff to do on the weekends (soccer, golf, basketball etc).  I hope he won't be too disappointed with what we got him instead!

Enjoyful

Hey Marie -

I have horrible yet inconsistent allergies to adhesives.  Sometimes they leave red welts, sometimes they don't.  When I had my reconstructive surgery they covered the dressings and the surrounding area with clear plastic tape.  I'm talking lots of skin area - all of both foobs.  I could see the welts rising under the tape but there was nothing to be done except wait it out.  Long story short, it didn't affect my reconstruction.  The skin healed and everything turned out great!

Maybe your skin is temporarily extra-sensitive because of the chemo?

E

unklezwifeonty

Dear Marie,

I think you may be onto something about the bandaid adhesive. I never cover the neulasta shot spot.

lainieo

Hi Girls,

Sorry to all who are having more SE's and issues than normal. Hang in there and we will all be through this soon. Seems with each round there is more to contend with. I guess we have to trust our doctors, but it doesn't hurt to ask questions if you have them. Knowledge is our power and the more we know the more we can help ourselves. I know for me when I was first diagonosed I had to make a lot of decisions with very little time. Very overwhelming. Now if I am not sure of something I ask questions and keep asking until I am satisfied with an answer.

We got 16 inches of snow in the DC area. Last night around 7 my DH and I decided to walk up the street to a local restaurant/ bar. It was so beautiful and quiet outside. We made it through the snow and had a nice time. Met some friends up there.  Not sure if they will open school or not tomorrow. Probably not, but I just went back to work last Thursday so I didn't mind the 2 and a half days we were having before the holidays. I teach a mixed first and second grade multiage group and have missed a lot of days due to the chemo. They are a great class and I have missed them a lot. Well, if school is closed I have that many more days to rest. My own children arrive on Chrismas Eve and the night of Christmas. I can't wait.

Enjoy the rest of the weekend.

joanneasiata

                   WARNING MAJOR MELTDOWN !!!!!!!!

I have been reading the last few pages and a lot of you ladies are having meltdowns as well.

It must be a build up of chemo i guess .Sam and i went to a friends party the other night ,  it was a Christmas party / fund raiser for breast cancer, Sam and i being the guest of Honor, Sam new  most of the guys there and enjoys their company so he was having fun, but i didn't know a lot of the women there,  so i felt like a fish out of water and i went topless as well( big brave me. not ) so i was making a big effort to mingle but all i seemed to get was that dumb smile you know when the lips are closed and you smile that kind of sad sorry smile ,and nobody  seemed to want just to chat with me about anything i suppose they just didn't know what to say or they were to scared to say something wrong , well Sam was keeping a close eye on me all night and could tell i was feeling really sad i was sitting or standing by my self most of the time and was trying so hard not to open the flood gates of tears , he came over and ask me if i was ok  and that i looked sad, i knew if i opened my mouth i would of just cryed and thats what happened, Ive felt like ive not let this horrible cancer demon take any thing else away from me and had built up a strength within but it stared me in the face the other night and screamed at me saying oh no you haven't So we ended up leaving after 2 hrs of being there  and when i hoped into the car our friend handed me a little tin and said everyone put in to help you guys out over Christmas there was $250 in that tin.i was blown away .Well Ive been crying for 2 days now and my eyes can hardly open Sam has been so good  which makes me cry more he said that we have got cancer not just me and that I'm never alone with it as i am on his mind every minute  of the day and he worries about me always , he is so sweet I'm very lucky .

You know when you think you've got the strength, that cancer  demon comes and laughs at you and punches you right down to the ground ,the bastard.Well ill get emotionally back on my feet again  and ill fight on , one knock down doesn't keep this princess down !!!

3 more sleeps till TX # 4  as they go on they do seem to be getting worse my fatigue wasnt as bad Ive been taking a liquid iron suppl lately its new and with no SEs its great i think that has helped me abit     WELL WHO KNOWS !!! 

I think ill be in FED rads as well i want to get back to work asap so hopefully i can work while doing rads

Take care lovely ladies

P  R  I  N  C  E  S  S JOJO

one-L

Princess JOJO, I am so sorry you are in a melt down.  We have avoided all parties  this year, so I have not had to face that demon.  I am glad your DH stepped up and helped you out, he sounds like a dear and a keeper.  I will also have TX #4 this week, so we will be right there together in our SE meltdown. 

I have had a pretty slow weekend and feel just find as long as I don't get into a rush.  I did manage to prepare dinner tonight and go to the grocery store today.  Couldn't do it yesterday, was just to tired.

Marie, I am also allergic to adhesives, not all, but some.  When I had my lumpectomy, my incision came open and we had to tape it.  Then when I tried to change the bandage, I would pull off big hunks of skin where it had blistered.  I still have a few red scars on me, I hope they go away in time.

I hope everyone on the East Coast came through the snow storm with no problems.  I haven't really watched any news to see if there  were any black outs.

Good night ladies, have to get my rest, because 4:30 comes really early in the morning.  I only have to work 2 days this week, then off for the rest of the year. Yahoooo

Juannelle

txstardust

Oh, Princess JOJO - I'm so sorry you had a meltdown!  But it happens to the best of us.  And what wonderful friends to give you that gift!  I know how difficult it is to keep soldiering on sometimes, we feel like we have to be strong for everyone else, but there are just those times when we can't hold it together.  IT's ok, as long as we pick ourselves up again, and I know you will, sweetheart!

Marie, I've developed a sensitivity to adhesives as well - I get blisters and red marks wherever they put tape or bandaids.  There is one kind of tape, OPSITE, that they use on my port when I get tx, it is the only thing that doesn't make me get red welts and itchy.  I've never had issues with adhesive before, either. Hmmm.  On the hair issue, one of my eyes is losing lashes in little bunches, the other seems to be hanging in there.  And my normally bushy brows are sparse these days - I've never used brow powder in my life before this!

Laineio, Enjoy the snow while it's enjoyable!  I used to live in Philadelphia, and I loved the snow when it would first fall, but then it turns all black and slushy and yucky.  I do love the quiet and calm that seems to follow the snowfall.  I'm excited for you that your kids are coming for Christmas!

Laura, sounds like you and the girls had a terrific time!  Happy birthday to the tweener!  And I'm glad you got some relief from those mouth sores.  I get them in the same spots every time.  

Michele, you are so powerful!  Take advantage of that roid energy is what I say.  Hope the MIL visit is short and sweet.

Juannelle, I'm with you on being tired of being tired!  My sleep is all funky.  I'm awake at 4 a.m., but sleep most of the day.  Maybe I should just try not to nap during the day?  I don't know how successful I would be, because usually I just simply fall asleep on the couch, not a planned nap at all!  How is the Lasix working for you?

Well ladies, I did it, I went "sans chapeau" to the store yesterday, and it wasn't as horrific as I thought it would be.  I didn't look at anyone, really, except the people who worked there, so I didn't notice if I got those weird stares or not, but it was kind of freeing in a way.  It was too chilly today to go topless.  I don't know how you all who have been socked in by the snow can take all that cold weather.  My hubby and I sat by the fire all day today, and it was in the 50's!  I'm such a thin-skinned wimp.

Love to all... 

JustmeAlicia

JOJO ~ who could blame you for having a meltdown.  I am sorry you had a tough time at the Christmas party, but how sweet of them to bless you with that gift.  I like Juanelle have avoided all holiday parties this year.  (except 1 I went to briefly for a bit at my best friends home)  A lot of people are other businesses my hubby deals with and they don't even know I have bc.  So I don't feel like explaining and the sympathetic looks.  Princess hugs to you.

Shelby ~ we have 2 feet of snow here, kids have no school today and it is freezing.  I have to wear a knit cap in the house.  I now see how heat escapes from this bald head.  New sympathy for bald people. 

Michele, Laneio, Marie, Laura, Onty ~ I hope everyone has a good day !

I cannot believe it is almost Christmas, I really have no spirit.  Like a lot of you sick and tired of being sick and tired. 

HUGS ~

Alicia

jeanl151

Hi girls.

   we got about 8 inches of snow in my part of MA.  I watched it fall, but never picked up a shower.  I decided to save all energy for the holidays around the corner : )

   MarieK -  I have an adhesive issue too.  I cannot use the clear stuff that looks like saren wrap.  I still have a more severe  scar/mark left from the edge of the clear tape than I do from  lumpectomy incision.  I now only let any medical person use paper tape on me.  Some times staff gets annoyed that they have to go look for paper tape in another room....tough luck - it's my body and I can be boss of some things....how's that for a minor rage!

   - I have a question about accupunture for fatigue.   I am such a chicken with needles, I can't believe I am willing to try if it works.  I can't stand this fatigue anymore.   Has anyone tried it?  Does it help? How often do we have to do it too make it work?   My hospital offers it near the oncology department so I figure they must think it works but I want to hear from someone who has first hand experience. thanks

  Jean

micheleboots

please make this truck stop driving all over me...I have ot a lot of energy today...but wantes to post

unklezwifeonty

Dear Mary, All,

I got done with chemo #7 (Abraxane #3) today. One more chemo infusion to go. I can see the flags at the end. Nothing significant to report other than good WBC counts and good Haemoglobin. Also got Zometa and Lupron today.

joanneasiata

HI ALL

Yep feeling much better now ,hey thanks for the support. No more parties for me.

MICHELE

You poor thing trucks can be pretty heavy  hang in there and pop the pain killers i like to take ones that make you sleepy so i sleep through most of it.

TXSTARDUST

Go girl on you for going top less , yeah it isn't as bad as we think ah  people have a little look then get on with their bussines , its really hot here so its essayer to go topless well have to go now Sam wants the computer

HUGS TO ALL

PRINSESS JOJO

arby

thanks Suz for reminding me that those skis can get used later this winter.  Our next storm is dur on Wed. But walking to the mailbox is enuf for me!  Just wanted to tell everyone about not overdoing it on the steroids, as I had a bout with Radiation recall that really stiffened my rt arm.  The degs made me "feel" healed in the middle of the night so I celebrated by winding up my arm and the following morning I decorated the house, danced to radio music (more like pom pom routines with alot of arms)  Anyway I've paid big time in pain for a week for my stupidity.  That euphoria was NOT the real thing and I overdid the joint and muscles!  Still healing from the rash of "recall" so no 5th treatment til after Christmas.  The upside is I may feel and even act normal!  Isn't it so weird how we all miss movement and are so short of breath but have the energy to walk to the pantry to look for food!!! I've gained 20# since being diagnosed in July.  Of course if nausea kicks in I can shed 9 in 4 days!  I agreed with the persons who are craving protein...we are trying to heal.  ALos think its amusing how even tho nothing tastes good, I'll keep looking!  Moon Pies are my weakness and for Christmas, probably marshmellow Santa.s  Glad for those who have enjoyed some shopping time and parties with their kids.  We may all learn that a simpler CHristmas imposed by our treatments is even a richer holiday time.  I loved the desciption of walking in a neighborhood of lights.  I may ask my hubby to take me to town tomorrow evening and do just that!  God Bless you all , all week.  arby