Starting Chemo February 2009?

csbsk123

I thought I would join the January group, but I have my first treatment February 4th and they are way ahead of me.  I am a Taxtere/Cytoxan/Herceptin every three weeks for 4 weeks as part of a clinical trial.  I had a bilateral mastectomy December 3rd and found out that one breast was nonaggressive and the other very aggressive.  All nodes were negative, have gone through reconstruction and am fully expanded but will have to wait for implants until after chemo.  It is nice to go through this with a group in the same boat.

csbsk123

Bethie1

Hi my name is Cheri.  I am having my treatments at AMC starting wednesday.  Just wondered if you were there or at a different hospital.  Good luck wednesday and I'll be thinking about you. 

DoubleMammyWhammy

Hi Marlomom,

I spoke to a long lost friend who went through breast cancer 6 years ago and was such an inspiration.  We were in parallel lines at parent-teacher conferences and we looked at each other at the same time and gave out a huge whoop.  Her being there was heaven-sent: not only did we have a ton of time to wait in line but she was so positive about the treatment side-effects of AC.  She said with the anti-nausea meds she was never nauseated, but recommended taking something to prevent constipation which (other than hair loss) was her only major side effect.  I'm so hoping we handle this as well. She was in her late 30's and did NOT go into menopause either.  I'm 39 and  I hope WE all have the best experience  especially for you finishing PTA school--my hubby is a PT btw. I'm praying you will have a great match for your clinicals and expect your advisors to be very understanding.  Glad to hear you are stubborn.  I'm working full-time and coaching.  Friend recommended chemo on Wednesday or Thursday and sleep all weekend then ready to go Monday.

Our kids are the same age--14 & 11 year old boy.  How are they handling things?  My older son is more driven in school, but we've had to keep on the younger to keep him from sliding.  Their attitudes have been great.

Best wishes to all!

Carol0371

Morning,I'm feeling more alert today.Laid around & slept most of yesterday,then slept all night.Want to go to the library today & maybe walk,we'll see.I haven't had any problem this time with eating.Last time I did chemo I lost 6 lbs. in the first week thencraved carbs all time so unfortunately lbs did't stay off.I'm eating less then usual[a good thing] trying to make sure to eat protein & lots of fruit.Gotta go,check in later.

Terri42

Hi ladies!  For those of you getting a port - I had mine placed yesterday.  I think overall the worst part of the whole thing was just having to have another procedure done (I didn't really have a choice with this one - I'm a very bad stick so in the long run this is a good thing - at least that's what I keep telling myself!) I now have so much hardware in me I feel like my chest is made of iron.  I'm four weeks out of double mastectomy surgery with expanders and I'm still sore from that so why not keep it coming (seems to be the cancer fighting motto)....

Anyway  - I was placed under sedation (not quite all the way out of it but I did doze off some) - they placed a drape over me so you can't see much plus you have your head turned to one side anyway - this made me a little claustrophobic but once the sedative was administered I didn't care any more.  You may feel some pushing on your upper chest but no pain.  Afterward - once all of the administered drugs wore off - I was sore - took extra strength Tylenol for pain and used an ice pack to reduce bruising.  This morning I was still sore (took more Tylenol) and as the day goes on I'm getting used to the feeling of it all - my neck is sore and I get a little wigged out thinking about a catheter in my artery but I am getting used to it or getting better at ignoring it!

Another thing over with!  You know as I was getting teary eyed feeling sorry for myself laying on that darn operating table again - I thought about kids with cancer and figured I'd rather it be me laying there - actually I wish it wasn't anyone laying there but you know what I mean...

susan13

Hey all,

On day 3 of Taxotere and so far not too bad.  I don't by any means have the energy I had yesterday... I did some serious "spring cleaning" after those steroids.  Today just feel like lounging out. No nausea as I'm on Emend and Zofran until tomorrow, but I'm getingt cravings for junk food... how unfair is that?!?  Had some minor achy body twinges last nite and this morning but nothing that tylenol ain't taken away.  Hang in there ladies, you can all do this!

Sue

MicheleS

Hi everyone,

I got my port yesterday and I am sooooo sore.  Plus, I've been throwing up all day so far.  I'm not running a fever or anything to suggest inf but I feel terrible...  <sigh>

 Terri, I'm glad yours went smoothly.

Michele

apple

a funny port story, that a few of you might have read before.

For the port installation I had a twilite sleep ANESTHESIA.   While under, I heard the surgeon and anesthesiologist talking.

"OMGOSH.. look at her torso... she has the tiniest torso but really big hips.. what a cute girl.  too bad her tumor is so big.  hope she makes it."

I didn't say anything at the time but a couple months later when I went in for a biopsy with the same surgeon and anesthesiologist, I told them I had heard their conversation and repeated it for them.. they were shamefaced.  I woke up and they gave me an envelope with an apology for their unprofessional behavior and gift certificates to Panera Bread.

I wasn't mad at them.. just sobered I guess.

otter

apple, you might want to edit this phrase:

"... I had a twilite sleep euthanasia."

otter 

[Edited to note the change in apple's procedure.] 

webwriter

Good Afternoon ALL!

STILL have catching up to do and the thread has expanded again! I can't believe the sheer numbers that come through here. I'm so sad there are so many, but so glad there are enough of us to really make an impact. It amazes me continually how this place reaches so many and helps so much.

So, I think I found the wall. Might have been self created. I was pretty much myself all day yesterday. No more Decadron Dingies, a little odd, but mostly me, until I took my 2nd sleeping pill. Auntie A's orders are to take them IN BED. (She knows me too well) The next thing I knew it was noonish today! Probably the best 18 hour nap I ever had! 

I'm a little groggy. Gotta get some water down and something light to eat. DH has a favorite ready: sauted plantains & sweet potatoes w/maple walnut sauce! I don't have much of an appetite, but no nausea. If I can't eat platains tho, something is just WRONG, haha!

Still drinking water by the gallon. All in all, this just isn't as bad as I expected.

Hope you all are faring as well!

Anonymous

so evidently today is my day to have My Nervous Breakdown. the $1600 hospital bill and the pharmacy saying that one of my scripts is $400+ needs preauthorization sure as hell didn't help. i'm sure both are just silly snafus, but all of a sudden i feel like i'm never gonna be able to jump thru all the insurance hoops much less actually sit down in that chair on wednesday morning.

luckily i have the house to myself right now. i'm a complete basketcase. i can't remember the last time i cried this hard.

i'm usually not so self-absorbed. honest.

otter

Web, you might not have any nausea on TC.  I didn't.  That would be very good, right?

The worst "nausea" I had was some mild to moderate "queasiness" the day after each infusion.  My onco asked about that specifically--she said, "Was it actual nausea, or was it queasiness?".  I didn't feel like throwing up--I just felt a bit yucky in the stomach and kind of dizzy; so I interpreted that as queasiness, and she agreed.

I took Phenergan once or twice on those days, and it helped.  I never was on any of the high-octane anti-nausea meds, like Kytril or Zofran or Emend, except for the Zofran I was given in my i.v. as a pre-med. 

TC is not classified as a "highly emetogenic" chemo regimen.  Cytoxan, at the dose it's given when combined with TC, is listed as having "level 3" (moderate) risk for emesis.  That's on a scale of 1 through 4, with 4 being worst.  Taxotere is only "level 2" (low risk).  Here's the PubMed citation for that info, which is from a 2008 paper in New England Journal of Medicine:  http://www.ncbi.nlm.nih.gov/pubmed/18525044?dopt=Abstract

Another source of information is the NCCN (National Comprehensive Cancer Network) Clinical Practice Guidelines for nausea prevention, which were updated just this month (January 2009): http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Of course, some women have lots more trouble with chemo-induced nausea than others.

otter 

Brenny

Michele S -

  I too was nauseous after my port - it was the twilight drug they gave me.  The nurse said be sure and tell them anytime in the future that it makes me nauseous and they can include something in it to avoid it -- of course, that came too late to get me through two days of throwing up!  Luckily the chemo did not make me nauseous at all.

gcpommom

It's good to hear that so many of you are doing so well after your tx's.  I start on Tuesday, and have been picturing the worst; with the way my luck's been going lately, I figure I'll be the one to get every se possible, did anyone else feel that way? 

My onc plans on using veins for tx, but since I'm joining the trial, I might get a port since I'll get tx's for 24-27 weeks. I'll still be getting AC/T, but the frequency and duration will be determined after I am assigned to an arm.  I hope I don't get assigned to the arm that gets weekly infusions of all 3 drugs, that one scares me a bit.

Lisa:  of course you're not self-absorbed, these insurance companies can be a royal pain in the butt.  I hope you get everything worked out with them.

Apple: It's good that you told them what you heard them say, that is so unprofessional of them, really.  They should be ashamed.

For those on steroids:  do the steroids make your heart race?  It seems that if it makes you kind of "hyper"  that it could make your heart race.

I am really getting nervous as Tuesday approaches, although reading your posts makes me feel a bit better.  DH got laid off on Friday, and as much as that totally sucks, at least he'll be around to help me out as I start chemo. 

Judy

Terri42

I'm sorry you got sick Michele - it will be over with soon -

Apple - my husband suggested starting a book with crazy things people have said to me since being diagnosed with cancer!  My "friend" who lives far away asked me if I was "totally flat" right after the mastectomy and if I had taken pictures - I was too stunned to even answer thinking I didn't hear her correctly...oh same "friend" left a voicemail stating she was freezing her b**bs off in AZ and said oops wrong choice of words...

I really should start a list...

Nancyb7912

I went wig shopping today and got a new haircut as a pick me up. That haircut was only the second time I have cried. I think these actions are making it real for me. Until yesterday it was mostly talk. Now, I just want to get it going so I can get it over with sooner. I will know on Monday or Tuesday which day for the port. My onco's PA suggested I might want to go straight to chemo after the port installation. Has anyone done this?

kelty

I found it's hard to do wig shopping with full head of hair, but my hair right now is in perfect length, I hate to cut it.  I wonder if I can wait after the second AC shot to do wig shopping.

apple

why not Kelty?  I cut my hair  - buzzed it... right after  my first chemo.  what a mistake.  I had hair for at least another 6 weeks.  you can always wear a scarf.  The wig people are wondrously comfortable with hair loss.

Actually, my first wig was a total flop (i got it to match my old hair).  I only wore it once.

MicheleS

Apple~  Your hair stayed for 6 weeks??  What chemo were you on?  My onc told me that by the 2nd treatment, it would be gone.  I'm getting AC every other week...

A question for you port people:  were you (are you) sore???  Mine hurts soooo bad.  Really bad muscle pain. ouch.  However, it isn't swollen or hot so I doubt an infection.  Help!

living4today

Michele,  Although I had my bilat mast w/expanders at the same time as port placement, it was sore, but I didn't realize it as much as mast hurt more.  After the first few weeks out I forgot the port was even there.  The only time I notice it now is if I am sitting in a certain position and if I wear the wrong type of shirt and have pressure on the spot.  Hang in there, in the long run you will be glad you chose the port.  I had mine accessed only once for a lab draw and although blood draws don't bother me, the port was so nice.  Hope you can relax today and feel much better.

KerryMac

Hey there - can I join too?

I had my first round on 16th Jan, and am due for my second this Friday. I am in Canada and am doing FEC-T. 6 rounds.

My first round was fine, I was sick as anything the afternoon after my infusion. They said "you might feel a little nauseous after dinner tonight" and by 3:00pm I was throwing up. I am hoping I can try a different Med this week. Other than that i felt a bit off for the first week, but more or less OK since. Cut my hair off yesterday - it was quite long and had started to come out in handfuls. 

For those about to do their first round, really, it isn't that bad at all. A little surreal, but not terrible. and the nurses and everyone really make it easy for you. Well, as easy as possible.

webwriter

Otter! Love your info as always. Especially when it comes with your particular way of phrasing things. You always make me smile. And, as usual, you're quite correct. (I'm on TC folks, so please note I'm NOT on Adriamycin) No nausea. Not even the slightest queeze. Auntie A has kept me on phenegren pre-emptively, but I skipped it today and I'm fine. No real appetite, but no discomfort either.

Hip pain I'm attributing to the Neulasta, and maybe the PMS too. (Thanx chemogods, nice touch!) Other than that, I'm tired, but fine. Rinsing the mouth a lot, drinking tons of water, eating what I can, which is lots of fruit right now. Had a nice walk around the yard today (big yard) while talking to various family members. 

I hope I'm over the hump tomorrow, but have duly noted your worst days. Thanx for the heads up. We all react differently, but it's a real gift to be able to share with someone who's already survived it. 

Dinner and more napping for me. 

I'll catch up the list ASAP. Welcome to all of you new faces! I'll update my avatar with my pixie on Tuesday, next stop: "Bald, bald as a ping-pong ball bald" as my daughter has taken to saying. (To everyone. Everywhere. For any reason.)

ndweiss

Hi there!  I'm starting chemo on Feb. 27th.  So glad to find this site.  I'm petrified, don't know anyone around here who's going through this.  Happy to have found all of you and glad for the company.  Wish you all the best as we go through this!

ndweiss

jancie

Apple  - I see you are on Taxol and Avastin - is that why you got to keep your hair for 6 weeks?  MicheleS and I are on the same chemo schedule I believe (Adriamycin/Cytoxin and then Taxol.

I am now wondering if I am jumping the gun by planning on shaving my head after my first treatment or if I should wait.  I just hate the idea of my hair coming out in clumps and I was certain that no matter what my hair would come out based on the chemo drugs I am getting.

Anyone have thoughts on this?

webwriter

Jancie, I read the May 2008 chemo thread start to finish while I was waiting for some test results. (I'm sure you know the feeling, haha!) Adriamycin/Cytoxin regimens tend to start about day 14 from everything I have read.

Here's a decent link on what to expect by drug. 

I have been cutting several inches from my hair for weeks now. On Tuesday I will be getting my "pixie." My 14 day (estimate) is on my second treatment. If my hair is falling out by then, I'll go ahead and have it shaved that night. It'll be part of the birthday celebration, and it looks like the Decadron will probably have me up for it.

Everyone has to be comfortable with their own plan, but for me, taking control and planning it "my way" has been somewhat empowering. I'm not afraid of it anymore. I hope, in some way that helps.

suzmarks

Cheri, do you also live in the Albany, NY area? I see Bethie1 does as do I . I am having my port put in on Tues. at St. Peters and expect to start chemo later in the week. Still deciding if I'm going to go on the clinical research study. If so it will be decided whether I will be treated with TAC or just TC.

To all I just want to share some advice that I found helpful. A great friend of mine sent me some CDs of relaxation and guided visualization that are specific to cancer; surgery, chemo, and radiation. Bernie Siegel is an MD, a surgeon who specializes in cancer and this is his niche. He talks about exceptional cancer patients, those who do so well. It's about the mind-body connection. One of the things he said that I found particularly meaningful was that it's important how we view things. If we call the chemo poison as I was doing then we are really approaching it as our enemy. If, on the other hand, we look at it as an elixir that will cure us and make us better we welcome it as something helpful and are more likely to meet with positive results. It sounds like good sense to me. My best to all.  Suzanne

KerryMac

Hi again - just a word on the hair, and when to cut it! I am doing FEC at the moment, so it will be different timing if you are on ACT. But, I knew it was time for the hair to go, and you probably will too. My first chemo was on Friday 16th, by the 27th (12 days later) it started getting very "loose", and one or two strands would fall out when I ran my fingers through it. By last Friday it was falling out in handfuls! My husband buzzed in on Saturday.

To tell you the truth, the thought of it was worse that the reality, and it is actually quite freeing to know I don't need to be worrying about it any more. And I don't look nearly as bad as i thought I might - I have very nice (lying!) friends, who have compared me to Demi Moore in her GI Jane times. 

Suzanne, I love your words of wisdom, I think there is something in the power of the mind. I have been trying myself to view Chemo as a gift - we really are so lucky to have it there. Right before my first infusion I read a post here by someone who was having it Neo-adjunctively (sp?) and after her 3rd treatment they couldn't even find her Tumor. Made me feel very hopeful.

apple

First of all Jancie,  I would strongly urge you not to shave your hair too soon.  it takes a long time for it to grow back.. mine didn't start to come in until at least 6 weeks after my chemo ended, and it came in very slowly.  It's been five months and I barely have short hair and I'm ready to lose some of what little i have. 

As to my hair not falling out for 6 weeks.

I took Adriamycin/Cytoxin  the first time.. I think.. I know it was called the Red Devil.  It really did take 6 weeks for the hair to ALL fall out.  I had a thick stubble which I actually had to shave like every 3 days so it would be smooth. .. it eventually was bald, altho it took a whole couple months. i really wish I had retained the illusion, at least, of some hair.  This time i am doing small doses of Taxol.. My hair is so short anyway, it would be foolish to shave it .. I am going to wait and see.. the onc. said I would experience thinning.

i started out with a 5.5 tumor.  after chemo - 8 heavy duty rounds, it had shrunk remarkably and my surgery pathology measure it at 2.1 cm.  Chemo really does work and we are so fortunate that they can administer with relatively little hardship for the patient.

I let my kids cut my hair.. i had a chin length bob, and we cut it about 10 times over the course of 2 weeks.  they had a blast.  we had a blast.  my boys shaved their hair, my girl let me trim hers and my hair looked awful!  I finally  went to my beautician to get a short boy cut which looked ABSOLUTELY awesome..

why I agreed to let my kids give me a mohawk less than a week later, I don't know.. I guess that is the reason i ended up shaving it too soon.  One cannot sport a mohawk and retain any sense of propriety, especially when one is a church organist.

Webwriter.. your short hair looks great.. here's a pic of my boy cut.  I wish i had taken one of the mohawk, just for prosperity.. my daughter took one, but I can't find the pic in her files.

Dx 5/10/2008, IDC, 5cm, Stage IIIc, Grade 3, 4/9 nodes, ER+

susan13

Ok on Day 5 of Taxotere and I think it's safe to say I overdid it yesterday, Day 4.  I felt so remarkably great, did a ton of things in the house and outside, made a few entrees for the week and baked ... and I am not even into baking!  I'm assuming the steroids gave me such a jolt taking them for 5 days, I stopped yesterday morning cause I was planning on going into work this morning... nope didn't make it.  I am now completely WIPED OUT!  Didn't sleep again last nite and even took 2 tylenol pm's.  When do the steroids wear off?? and are they really necessary for a whoel 3 days following treatment?!?

I just hope this chemo stuff is working after the havoc it plays on our bodies.   I too started out with a large tumor... but they could not put an exact measurement on it.  Clinically measured at 6-8cm+, then surgical pathology read 1.8cm. So yeah if it was that big chemo is a great thing. Just hope it's gonna kill off anything that is lingering on.

Going to stay home in bed today and rest. Even though I still can't sleep!

Feel good everyone.

Sue

webwriter

Terri42, wishing you the best today!

Apple! I love your short cut! Very similar to my upcoming pixie. You must, however, find the mohawk!

Susan13, yup. Me too. Let's not do that anymore! I gotta make it to PT for my shoulder today, but other than that, nada. I'm all in.

I'm still draggin' but I think I got the list updated. Please let me know if I missed you or messed you up. The chemo brain has set it for sure this time. (Okay, I did practice for a month or so first, ha!)