Starting chemo January 2009?

Thanks everyone for the positive thoughts and vibes.  This discussion board really does help to cheer you up and give you courage!

YearoftheHat - I also will have 12 weekly Taxol (Paclitaxel) after my AC treatmetns.  We seem to be on the same regimen.  From what I've been reading and hearing the side effects are not quite so bad and tolerated well.  Let me know what your onc says.  I haven't even gotten there with my onc yet. Here's keeping our fingers crossed for both of us.  I think you job situation sucks.  But, you know, things happen for a reason.  Maybe there's a better job waiting for you after this is all over.

Renrel - Glad to hear that you're starting to feel better.

rsben70 - I know what you mean about cancer putting things in a different perspective.  Things that stressed me at work before don't bother me at all now.  I figure that things will manage to get done whether or not I'm here.  Someone will just have to step up and do it.  I don't work in a field that involves life and death so why stress about it. If the job doesn't get done, nobody is going to die. 

Patti, wishing you the best time with your daughter.  You will be ok, you'll see.  When my sister first visited after my dx she thought we'd cry the whole time.  Guess what? We never did!  We laughed and made the most of the time.

Also, re: the wig.  Be bald and beautiful if that's what you want but, by all means, don't feel like a fake if you wear a wig!  Everyone I know knows I'm wearing a wig but I feel a billiion times more comforable in it (even when I'm uncomfortable, you know what I mean).

You call the shots sweetie.  It's your rules and all about you right now.

((BIG HUGS)) Diane

had chemo #2 today. 10mg decadron, 1mg kytril, 88mg adriamycin, 880mg cytoxan. it was night and day compared to chemo #1. i wasn't (too) afraid, i didn't cry, i didn't bring a million unnecessary things in my chemo bag. my son was with me and we breezed through it in 2.5 hours. i am very anxious when the nurse pushes the adriamycin, worried about infiltration, but only two more of those to go. my daughter-in-law brought us lunch. we laughed a lot today during the session. it was so strange - i felt so comfortable there today. the kytril makes all the difference compared to the zofran for me. after chemo #1 (with zofran) i was super dizzy when it was in the drip, and when i went home i felt queasy and "off," like my head was full of cotton. today i feel nothing unusual. so glad to have the kytril.

year of the hat: we are here for you. FYI, breast cancer is considered a disability by law. maybe that will could be a factor for you re: keeping your job? 

re: guilt. i felt very guilty about this cancer  (not enough exercise, too much wine, lots of anger that i never resolved) until i went to the first breast cancer seminar and there were hundreds of women there with breast cancer. and now i know SO many women with BC and who are going through chemo. how could we ALL be doing the wrong things?  it's not possible. i don't feel guilty anymore. i think getting BC is a combination of so many things. both my mother and grandmother died of breast cancer. it's true, i should have exercised more, i shouldn't have had a glass of wine every night, i should have eaten brocolli more! etc., etc., etc.  it just is what it is, and i'm trying to deal with it every day the best i can.  

i had a wonderful nurse, rosa, originally from chile, who told me that her favorite chemo patient told her that she and her husband had saved up for "the golden years," never took vacations, always saved for retirement, and they planned to travel the world. but once they retired, her husband got cancer and died months later. then she got cancer and was in treatment. she told rosa, "forget the golden years. LIVE NOW." that was 20 years ago. so rosa decided to travel the world with her husband and daughter with her three weeks' vacation each year, and that's what they do. they have been to almost every country in the world and speak many languages. i told her about my plans to rent an apt in paris for a month once this chemo and radiation adventure is over (i went to college there years ago and met my ex-husband there, have been back with my oldest son). it was fun to speak french with her and talk about paris! and i love her lesson - we have to live for today.

The book "Speak the language of Healing, LIving with Breast Cancer without going to war."  has a chapter called "Did I create this?"  which explores how we seem to find a way to blame ourselves for our cancer.  We allowed too much stress in our lives.  We did not eat right. We were nasty to the receptionist at the breast imaging center.  We failed to be there for someone else who was sick.  We were not religious enough.  We wished someone else dead.  Ect and so forth. It just seems to be part of the experience that we have to get through.  I loved one part of this chapter where one of the authors quoted a nurse who told her that while there are so many things that may effect our liklihood to get cancer the only thing they have proven that causes cancer is smoking which causes one kind of lung cancer (and I know of a smoker who got the other kind of lung cancer) and beating yourself up about anything else is just silly.  There is also a story where one of the woman is called by another woman who has recently been diagonised with a reaccurance.  The woman is shocked to find out that the author teachs meditation and still got cancer. She had been beating herself up because that was the one thing she had meant to get to doing to protect her health and had not done.  She had an odd sort of relief to realize that even meditation teachers get BC.  I have definately gone through my own list of how I "caused" my cancer and having been aware of the lump for months before acting on it, and then only because I was aready at the office due to a yeast infection (and then kidney stone which I passed that morning as I was calling to make the appointment for the Yeast infection- yeah it was a really fun month even without the BC)but I am mostly over beating myself up over that.  Now I am just feeling guilty that I am a human being who can be selfish and lazy and not the best wife, mother, daughter, sister or friend in the world even when I don't have cancer.  Sometimes I really wonder why all these people are hanging around loving me through this hell. But I am eternally grateful that they are. (And yet I have not written any thank you notes, I buy the card but procratiate writing them- sigh) 

Today we all stayed home due to the snow.  I am not in any real pain but have a bit of ingestion and notice that stupid things can wind me. LIke holding the big contain of soft soap long enough to fill the bathroom container.  Weird.  My mouth is strange.  Sort of coated and taste buds are off and I have small clear blister type sores. The don't particularly hurt but they annoy me.  My ears and throat also feel slightly sore. I am hoping that it is just dryness.  When are the general low WBC days?  Day 7-10?  Thats where I am right now. I also have notice this odd saddness in myself at times.  I feel a bit like crying. I am more prone to playing bad head games.  But there is something strange about the emotion.  I know they say depression is one side effect of chemo and I am wondering if that is part of what I am feeling.  It somehow feels different than a response to everything going on with the chemo, particularly since I am doing pretty well SE wise and all.  I am just going to watch this feeling and see what it does.

I was busy at home today. I managed to bake some from a box brownies with DS, build a lincoln log house,  watch most of a Winnie the Poo movie , give him a bath, play a game of candy land and read him three books.  All of my mommy responsiblities for a snow day fulfilled.  I also managed to make us all a nice dinner of oven BBQ chicken, rice, greens and a can of squash.  I even got DS down before 9pm so I have sometime to myself to relax. 

Tomorrow I want to go into see my boss and ask him to sign a form so that I can be in the extended leave bank ( allows you to get donated time from other workers if you exhaust your own) and to get my Long Term Leave filled out by HR.  I also want to stop at the hospital and drop off their part of the LTL form.  All this should have been done 2 weeks ago.  At noon I have an appointment to look a free wigs. 

I think everyone canceled appointments at the hospital today due to the snow and the staff had time to catch up on phone calls because I got lots of calls from several staff today.  I am now scheduled to see a oncology Radioligist the Wednsday of my infusion, for 20 minutes after I see my nurse and before infusion, hopefully that means that she will just say that the .2 cm too close to the skin is not worth the pain of raditation given the skill of my surgon and the chemo and the Onco type.  But it may make me late for infusion which will screw up my appointment for free accupuncture and massage  during the first hour but I guess that is how things go.  I also got a call from the social worker telling me that the support group for newly diagnosised BC patients is not going forward in February - not enough committment.  And the organization at the hospital that helps with parents concerns during cancer also called and gave me some advice on DS.  I liked the idea of using the analogy of a garden to explain cancer.  A weed that is crowding out the vegtables or flowers and needs to be pulled out or poisoned but that it is not anyone fault. 

A out of state friend also sent me a pick my up today. Two DVD comedies.  She is such a sweetie.  She is going to try to come out to visit in April.

I am thinking of trying to go back to work part time starting the week of my next infusion.  I feel like I am doing well and can work but I am also worried that the 2-5 hours a day will leave me to tired for anything else.  I also think I may kill the parties to my hearings (I am sort of an administrative law judge for the unemployment system) with my gas. It is not a big room and I have been rather liethel in that regard this past week.  I am very lucky that the state allow for a 26 week LOA rather than just 12 for FML and I had a ton of sick leave.  It will not be exhausted till around my next infusion and than I have vacation time and if I am lucky I will be eligible for LTD and maybe able to start working part time.  I feel for those of you who already have to worry about your jobs.  It is not fair. 

Well that is it for now.  I hope everyone has a good night.  I will check on you all later or tomorrow.  

Hello to all my fellow BC friends here!

7 days since my first TC tx and am finally feeling up to par. Wish I could taste the coffee in the AM though!!  I read that quite a few of you took control with the hair thing and felt good about cutting and or shaving it. I believe I am going to do the same. I have had very long thick hair since childhood and do not think I can bear seeing it fall out over time. I am so thankful for all of you sharing your experiences and life paths during this very challenging time in our lifes. My hat of to all you wonderful people!!  I keep telling myself that all the side effects is the chemos way of letting me know it is working!!!!

Hi ladies,

Nearly one week past my second A/C tx and I'm feeling pretty good.  Things seem to be taking on a pattern.  For example, I woke up last night sweating profusely, similar to the Wednesday after the first tx.  Is anyone else experiencing that?  I also have an internal alarm clock that wakes me up at 5:18 am (so random, lol) and always starving!

Does anyone else feel like the stinkiest creature on earth?  I see that a lot of you are reporting gas, which I have in spades, but I'm talking more than that.  I feel like everything smells.  Even my hands smell like medicine.  I would love some tips on this issue.  DH assures me I smell fine but I can't stand it.

One more comment on the hair issue.  I don't regret for one minute getting the Sinead O'Connor.  As I've said many times before I'm glad I took control and the wig looks awesome.  It was almost symbolic, getting rid of it was like getting rid of the cancer.  That said, MY DARN HAIR IS NOT FALLING OUT!!!  In fact, it looks like it's starting to grow back a little!  Oh, I know that it will fall out eventually but I have to laugh at the joke being played on me.  I'm nearly 21 days past first treatment and my hairline isn't even receding.  And of course my head sticks to everything like a a big ball of velcro.  Hubby thinks I should shave it down to the scalp but it's like a game for me now.  I want to see how long it takes to go.

Got to go get the kiddies up!  I hope everyone feels good today!

((HUGS)) Diane 

carpediem, my coffee started to taste better on day 8 and that is when most things started to taste good. The doctor was surprised that it did as he said most times it lasts the whole time.  IT was then that my tongue lost that white coating. I had been using something from my dentist ,but switched to Biotine and maybe that helped.  Also got the Biotine toothpaste.

 Getting taste buds back was a thrill, maybe too good, as I ate two bags of Fritos, which I am sure raised my BP some,  The one thing that I was thrilled about was being able to drink OJ again. 

 Yesterday was second treatment of T/C.  Had a nice visit with the dr. Said he was glad I was doing the chemo since I am Triple NEg, even with my small tumor, no node involvement and clear margins he felt it was a very wise move. I said the decision was easy, and besides I plan on bugging him and my surgeon for a very long time! He just smiled and agreed.

Infusion went well, the nurse found the vein without any problem, so I want him next time too.  The only glitch was my liever enzymes were a little elevated, but the doctor felt it was from the chemo so all was well

 So far no headache like last time, but I really felt it was sinus pressure.  Nausea has been very slight.  Today is the shot, asked him about taking Claraitn said he had done research on it and really couldn't say if it worked or not, but said try it. The last time, I really didn't have any pain from the shot, but will give it a try.

 Wore my wig, or now known as the perfect hair! I have never had perfect hair, so it seems strange walking around with "perfect hair", although it does blow in the wind. It it the perfect bob that I always wanted.  I too took control and shaved my head the day before the second tx. It was falling out in clumps and knew it was time.  The  lady who did it was so sweet.  IT was her first time to do a BC patient.  She said it was her gift to me. She liked my wig and we decided the color was perfect so when my new perfect hair comes in, that will be color.

 Wishing each of you a great day! 

hugs

sally

i just found out my regimen yesterday.

starting 2/4 - 8 am, 4xAC, 4xT, neulesta shot the day after. i won't be finished until the end of may. *pout*

they really didn't give me any special instructions for weds, except to eat a normal breakfast & i probably won't be up to driving. i had no idea the sessions last 4 hours! i'm bringing a book & magazines & my ipod. what about stuff to drink? i'm afraid of having to pee every 5 minutes. (i'm the queen of Nervous Bladder Syndrome.)

monday = wig salon & port surgery. 

i'm a little stunned this is happening so quickly.

(((group hug)))

misty 123 - so glad to read about your thoughts. it reminded me of how on airplanes when they tell us parents to put on the oxygen mask FIRST, then put it on our kids. we have to be okay and healthy before we can help them be okay and healthy. i have two grown sons who are now taking care of me - emotionally and otherwise. what goes around, comes around. you will see! 

renrel - i swear, my first thought when i heard i definitely had cancer was, "damn it, i should have been buying those breast cancer stamps!" i always avoided buying them because, first of all, i think it's absurd that this country has to do the equivilant of bake sales to raise money for BC research, but also because i thought if i bought them, i'd be that much closer to getting cancer. i know that's INSANE! but when i found out in 1997 that my biological mother and grandmother (i'm adopted) had breast cancer and died, i've been waiting for this shoe to fall.

thank you for mentioning that book! it sounds just perfect to read right now.

yes, low WBC count is days 7-10. are you rinsing your mouth at least 4x/day with baking soda, salt, and water (or biotene mouthwash)? my onc nurse told me yesterday we should be doing that at least 4x/day, preferably every time we pee so that we just get in the habit of it (and with 120oz water/day, i'm peeing every damn hour). she said the mouth sores go down into the throat. say no more. i'm rinsing like a fiend.

i take my hat off to you and all the other moms here. how you manage to deal with this plus taking of children, i just cannot fathom. you're amazing.

 knots - i'm also taking AC (then taxol later). i know it sounds impossible, but if you force yourself to walk at least a little bit when you feel lousy, it really does help. laying in bed too much is not recommended. eventually your energy level will rise if you keep exercising a bit. for me, i found that the first two days after chemo #1 was pretty lousy. i felt wobbly and fragile. after that, i felt normal, no side effects. i took claritin to prevent bone pain from neulasta. are you getting a neulasta shot to keep up the white blood cell count? i had chemo #2 yesterday and last night i had a headache from midnight until 3 a.m., but that went away and i woke up feeling really great.  much, much better than after chemo #1. be sure to keep eating your protein every day - that will help with the energy level. protein smoothes are a good way to go. let us know how you're feeling.

lisalisa - what a relief!  so glad your port is okay.

shocked at 39 - i went through menopause 4 years ago, so maybe that's why i don't have night sweats with the AC. i do have many younger friends who experience that on AC!  i think it's common. about the "drug scent" - haven't experienced that.

sjr585 - are you on taxotere or taxol? i'm on AC (later taxol) and haven't experienced any change in taste buds.

lisa810 - we're on the same chemo regimen, AC/T. i'l be finished at the end of april. definitely you want to drink a lot of water the day before and of chemo (my med onc recommends 120oz/day). it flushes out the toxins. you should be peeing up a storm. no hassle during chemo - you just unplug the IV machine and roll it into the bathroom. i wear pants with elastic instead of jeans so that process is easier. it's better to flush out the toxins because AC settles in the bladder and can cause serious problems.  good idea to have someone drive you to the sessions. no way could i drive back myself and i've had two chemo sessions. i felt kind of wobbly and weird. in my chemo bag i have what you mentioned, but also lifesavers and water and a lot of other stuff i haven't needed yet - i'm always overprepared. i have the neulasta shot every day after chemo. my med onc recommended claritin (not claritin D) 2x/day to prevent bone pain. so far that has worked like a charm. the neulasta shot didn't hurt at all - they said it has to be warmed up first (under warm water) and injected slowly to prevent burning. i have my second shot this afternoon.  let us know how it goes with you!

my AC took 4 hours the first cycle, then only 2.5 hours yesterday. it all depends on how slowly or quickly the nurse administers the A. the first time the nurse took 40 minutes at least, and this last time she took only 20 minutes. i think it also depends, of course, on the doses we are getting of the drugs. i'm receiving 88mg of A, 880mg of C, 10mg of decadron,and 1mg of kytril. the first time i had 32mg of zofran (which they changed to kytril because of severe headache).

Day 14 after 1st treatment I started losing hair in clumps.  I've always had long hair and this was very traumatic.  I felt ashamed for feeling so badly and I cried on and off for 2 days.  I finally had my husband shave it and it felt so much better.  I just can't do the wig thing.  I've been going bald except when I am cold I wear a hat. I was afraid to go to my 2nd treatment (yesterday) bald, without a hat, but basically no one gave me a second glance. 

 I teach first grade and many of the kids wanted to touch my head.  A few said I look like a boy, some said I looked scary, and some said I looked beautiful.  One of my students even said I was very brave...sweet girl!  They are all so wonderful and it is very difficult to have to take so much time off.  I feel like they're getting a bad deal, but as everyone says, I need to take care of me right now.

I'm having a nuelesta shot today which I am not looking forward to.  I didn't get one last time and my wbc was too low and I had to take more time off than I had intended.  

 I haven't posted much, but I read often and all of you are in my thoughts.  I gain much strength from you.

Hi all,

Waiting for DS to pick me up to take me to the hospital for 2nd tx.  I was feeling really anxiuos but after reading the latest posts I've calmed down a littlle.  This discussion board has been a great pick me up!

Shaved my head yesterday and had my hair stylist style my wig.  It looks great and I'll probably be wearing it to work instead of the scarves.  Got the wig from TLC after reading suggestions from other posters.   It was very reasonable and the wig moves and feels like real hair.  If anyone is looking for a wig check out tlcdirect.org. 

I've been wearing a night cap to keep my head warm but after I shaved all my hair off, my head has been really warm and I had to sleep without a cap.  Anyone else have this problem.  Its even warm when I wear scarves.  I want to just go bald but I'm not quite that brave.

Diane - I had the same experience a few nights ago with waking up and sweating profusely.  I think its night sweats.  I had it the first time I went thru menopause.  I'm 56 and looks like I'll be going thru menopause again!

Knots - I agree with ddlatt - Walking at least a little really does help.  Even when feeling nauseous I went for a walk and while walking felt a little better.  I know it really helped with the achiness from the nuepogen shots.  Also that lump in your throat feeling could be heartburn.  I had that and took some antacid like tums and it helped for a bit.  My onc said she had meds for that so I may ask her for that.

sjr585 - yes, i take the claritin at 10 a.m. before my 2 p.m. neulasta shot, then in the evening, then twice/day for a week afterwards and longer if needed. - why are you  not taking the anti-nausea pills? these are supposed to prevent future nausea - the drugs in the infusion bag will not be enough, i am supposed to take two kytril, one in the morning and one at night, and compazine every six hours whether i feel nauseous or not. if you wait until you feel sick, the pills might not work.

ladyjane54- you can ask your med onc for a pharmaceutical mouthwash specifically for thrush and mouth sores. i've heard it works instantly and will ensure that you keep on a good diet and you won't avoid eating food because of the pain.

today my hair started to fall out! my son shaved my head a few day ago to a 1/4" stubble, but now that's falling out! 15 days to the day after chemo #1.

Ladies,

Thank you so much for the Claritan tip.  I will definitely try that before my next shot.  I think that was the worst thing of all for me this last go around.

Feel good,

Diane 

Hi all:

Just back from AC#3, and it went fine I felt some anticipatory nausea walking into  the building so they gave me a whole adivan, and  I'm surprised I can type--ignore typos!!. So good to be 3/4 done with this one.

Good to hear all the news from everyone. Lisa-glad your port is ok. Sometimes I feel twinges of pain near mine. Of course I'm feeling twinges of pain all over and try not to think they're bad news. Lester63--this last time I had 3 neupogen shots, 3 days in a row. My counts were good pretreatment, so they worked for me (the neulasta kicked in well, but like on day 11, too late). I had just slight lower back pain--nothing like the Nuelasta, where I felt like I had a terrible flu with achy lymph nodes, neck and abdomen. I took a tylenol after each shot, and as needed. Renrel-thanks for the book lead. I think I'll get a copy, and Ddlatt--your nurse's story is great. I've definitely always been a stop and smell the roses kind of person, and I am so glad I was. I feel like I've lived a very charmed life (sure with some detours, like our house burning down in 01 and my dh having a stroke last year), but my kids are turning out great, my dh is almost back to normal---AND I want many many more years of this! I feel gratitude every day for what I do have. I just want to get that recurrence monkey off my back. The lady in the chemo chair next to me just had 1 +lymph node, and 6 months after the tx I'm getting it's in her liver and lungs (but they've been treating it for 2 years!). She was an inspiration--still working, looking good.

I got my new wig yesterday, and dd and dh say it's ok. I like it, but it itches.

hugs and good wishes

Hello all- You are all so wonderful and I appreciate hearing your stories.  I am day 14 from tx #1 and so far no hair falling out anywhere.  I think that is my way of biding time to figure out what to do with the hair/hat/wig/scarf situation.  I went online again and bought a wig I liked and more hats.  I feel good about that.  I also feel pretty great and can't believe I have tx, until the port twinges at me or I realize I am a uniboober with a foob  in the process.  The one change other than the wig ordeal is i haven't been exercise like I am use to.  I suppose I need to get on a schedule for that, because it aint gonna happen as long as I continue to sit. 

Well, one more week till tx #2 and i am in the start up mode to disinfect the house, get the groceries my family will need for survival mode when I am recuperating and then starting to wear the wig/hat/scarf or whatever I need to get through this. 

I started eating in earnest whole oats, wheat germ, dried fruit ,a bit of milk and honey for cereal.  yummy.  So far the L-glutamine capsule upsets my stomach, so I am off to find a variety to take .  Any ideas?

 Hugs.  Jess