first chemo done

Hello everyone,

     Well, the first one is down. Mom did really well and became more relaxed as each bag emptied.  The nurse says that she really thinks she will do just fine (I imagine they say that to all of their patients) but I am praying that this will be the case.  We actually got a few laughs out of the day.  My moms main nurse has taken liking to my father and used every opportunity to stop by an fondle him in some manner or another.  Dad is rather shy and i dont know who was more red cheeked him or mom.  Anyway it was fun to watch him squirm everytime she came into the room.  One of the nurses was passing out candies to all of the patients and would ask if they were diabetic before handing it over.  One of the patients replied "no, I have cancer" and scarffed down the chocolate. I guess you had to be there, but he meant it to be funny and it was.  Anyway....I suppose we will see what the next several days bring.  Thanks to you all for your support and for your stories.  As always you are all in my thoughts. More to post soon.  Shannon

Good evening to everyone,

              O.K., first question.  Moms tastebuds are already gone.  Does this last for the entire course of cycles or will they come and go after each treatment?  I guess I am not surprised at how quickly this happened, I was just wishful thinking that the effects would  somehow bypass her.  Just got off of the phone with her and she is getting tired now (some of this I am sure is the emotional release of anticipation of the first cycle), but she is still doing well.  I have arranged for a sitter for my little one tomorrow so I can go get an eyeball on her, she is too good at passing herself off as "fine" on the phone.  I am trying not to crowd her too much, but it sure is hard not to keep calling her every hour.  You ladies are soooo awesome, an ounce of your strength would do me a world of good right now.  Any advice on what I could be helpful for her is appreciated.  Hope you are all well this evening and I will check in on you all later.     Shannon

Shannon -

You will find that everyone is a little different.  Some ladies lost their taste the first week after treatment and some lost theirs for longer (or shorter).  I am sorry to not be more definitive, but that is kind of the best answer to give.   Things also depend on the treatment cycle she is on.   But, this is a very common side effect.

As far as fatigue goes - that one is really common.  A question I have is whether she was given a steroid (decadron).   If so, the fatigue really kicks in after that thing wears off.   It gives you a bit of a buzz for a while and then you kind of crash (we called it "hitting the wall").  

Also, Deb is right - the best thing for warding off side effects is hydration.  Make sure she stays good and hydrated - lots and lots of fluids.  Have her start taking lots of fluids 2 days before her treatments and as much as she can handle after her treatments.  We all found this did a lot to minimize side effects. 

Make sure she takes the meds the docs give her.  They might make her a little loopy (especially the anti-nausea ones) but they do work.   Give her some space to just relax and sleep if she needs to. 

One last watch out - some of these treatments cause some emotional upheaval.   If your Mom seems a little bluesy or starts crying a lot - just realize it is the drugs.   Lots of ladies have this with chemo - AND even know the chemo is causing it, but can't do anything about it.  Don't try to "fix" things for your Mom if this happens because it won't work.   Just realize what is happening and do your best to be supportive.   If it gets too extreme, there are some things her doc can prescribe to help her out.   Having good emotional health during this is important too. 

In the meantime, let us know if she gets any more side effects.  There are lots of folks here who can help.

Jill

Hi Shannon

  I have this Tuesday's and next Tuesdays and I am done with Chemo..Thank the Lord...I still have some fingernails left and would like to keep them...one has fallen off and have a thumbnail about to go now...other then being tired from the decadron crash, I'm doing ok....Taxol makes ya tired anyway.  The antidepressants seem to be helping alot, I haven't cried since I started taking them...I still get down but I guess it's expected.  I'm sorry I don't remember if you said, what chemo is your Mom taking?  If she took a dosage of steroids today, tomorrow nite she will be crashing or as Jill puts it, hitting the wall...hits us all.....which is why I slept so much today....

  My daughter got me everything in the Chemo Shopping List, and I'll tell you what, some of it I am still using..such as the vinyl gloves she bought..with my fingernails going, it's nice...have you checked that out?

Hugs

Deb

Hi Ladies....

Well number 4 is done and only 2 more to go...YIPPPEEEE

It went well I was given benedryl with the meds so I slept a few minutes...I had two bags for two hours and then was out of there.  My DH was hungry so we drove up to St. Helena and went to Taylors and had a hamburger and garlic fries.  I am burping garlic this morning.  I woke up around 4:00 because of my little nap I had yesterday and couldn't sleep this morning so here I am checking up on emails.

Let me try to catch up......

 Shannon...Glad your mom has one down...As for taste buds...they do come and go as everyone has mentioned.  Mine goes for about 5 to 7 days after chemo.  Then we start feeling better and then we go in again...(I have a 3 week rotation of chemo)   She will be cranky at times and its very hard to ignore...but give her space and patience.  I know sometimes people coddle too much over me and it is irritating at times...they say things like; "we are praying for you" "you look beautiful with out your wig or hair" even though I have gained weight..they say "have you lost weight?"  So we begin to let it roll off our backs....it is just part of the process.  There are many great breast cancer books - I think I have all of them...LOL  There is one I particularly liked called "JUST GET ME THROUGH THIS!" by Deborah A. Cohen and Robert M. Glefand, M.D.  I got it through AMAZON...  I am sure many of the ladies can recommend some good reading as well.

Jill - yes, can you believe my disability insurance carrier?...AETNA...it has been the worse experience for sure.  In fact my boss called me to tell me that I had been approved for disabilty through then end of this month.(??? I have months to go)   ....I was pissed cause they notified her...OKAY,,,WHO IS THE PATIENT HERE?  and then they told her that my doctor needs to provide more details and more forms to be completed and be more specific on a anticipated release date.  I AM LIVID.  They know my phone number and have yet to contact me.  So...I called and let them know how unacceptable it was for them to contact my manager before me and give her more information about what is needed from my doctor.   They said that they mailed out the approval letter two days ago.  Well snail mail is the issue.   Anyway...when I called I told them I have copies of my doctors submissions stating the date he would anticipate release was October 1, 2009.  The person I spoke to said "let me look at the file"....and then said he found a date of July 1, 2009.  So then I questioned him on why I was only approved through March 31, 2009.  And then I asked him if my doctor needed to provide forms on a monthly basis....I said "this is a very busy professional and it is unacceptable."  He then forwarded me to my ACCOUNT MANAGERS voicemail to express my concern...YEEKS  To be continued.

My doctor initially gave me an intermittent leave and said I would be able to work 4 hours a day.  I tried it for a few days and with my 1 hour commute I just couldn't handle it.  It did not make god business sense either  and my job is stressful I manage a team of mortgage loan officers in a call center environment.  There are about 250 associates and my team consists of 15 loan officers who need interaction constantly.  So my best choice was to go out on disability.   I want to try to work while going through radiation but from what I am hearing ...that may not be a good idea either.

Deb...what caused your fingernails to fall off??? My gosh.  I have acrylic nails and they look great..the only noticeable thing is that my nail moons on my thumbs are a little darker than normal and my hands are peeling.

TWO MORE BABY.......can't wait either....although mine are 3 weeks apart.

Kristi ...thanks for popping in...what causes your eyes to water?  do you have allergies?  Congrats on finishing CHEMO....and are you waiting a month before radiation?  Did you have a PETSCAN after chemo?  I asked my onco nurse when I could have my PORT taken out after my last session and she said it would be up to my onco doc to tell me and she thought he may want me to have a PETSCAN to see if anything showed up before it is taken out...

For those of you ladies with PORTS ...and completed chemo...what is the next step?

Cindy

Deb..  I am on Taxotere which may be different.  Needless to say food is tasteless and my skin is peeling - no watery eyes or numbness.

 There is NO WAY I want this ALIEN in for a YEAR....I will rip it out myself...and like you I will sit in his office until it is out of ME...

My heart goes out to all of you beautiful women. I finished chemo almost 12 months ago, and during chemo I did have extreme fatigue (did not get out of bed for 8 days right after each treatment), still have problems with taste buds and the famous "chemo brain". After chemo is done, your oncologist decides when it's time to get the port out, and whether or not you will be on meds for 5 years, Tamoxifen, Aromasin (which is the one I take), Arimidex. Check ups are every 3 months for the first year. Hang in there because really we cannot allow cancer to terrorize us and our families

Deb, I had a port for seven months because that is how long my treatment lasted, and my doctor told me that I could get it out as soon as the chemo was finished.

Salwa, I didn't have radiation because I had mastectomies. I had too many tumors so nothing else could be done. I'm Er/Pr positive, HER negative. 7 lymph nodes were taken, (3 from one side, 4 from the other), and only 1 was positive. I was never put on tamoxifen. I tried Arimidex first, and the pain (bone pain everywhere in the body) was just too much. I'm on Aromasin now, and still have bad pain. I might try Tamoxifen next month. As for permanent side effects of chemo: I still get tired easily, but I work out every single day now, and that helps a lot. My confusion and foginess ("chemo brain") are still here, and they may last only God nows for how much longer. My taste buds are not back to normal, but they are better than what they were. I also have all the classical symptoms of menopause. All in all: it is a very rough ride, but once it's over, you realize you did it, and that this illness cannot hold you in terror. Don't allow it to threaten your spirit or your family. You will do this, a day at a time, and sometimes, an hour at a time. You will prevail

Oh my !   I leave for a day or so, and this thread picks up.    Welcome to the new ladies.

My daughter has a play tonight, so I have time for a quick post.   But, lots of good stuff to respond to here.

Salwa - I wanted to take a crack at responding to your question.   For a 4.5 cm (or 45 mm) tumor with node negative, ER/PR+ and HER2-, your doctor recommending 6 cycles of chemo (every three weeks) followed by radiation followed by hormone therapy would be in line with what you should expect - especially given your young age.   Based on the number and weeks shown, I am assuming the regimen will be likely TAC or FEC (did your doc say which?).   I strongly suspect that your doctor is recommending radiation despite that you had a mastectomy instead of a lumpectomy is due to a) the size of your tumor, and b) your age.  

 Hormone therapy (i.e. Tamoxifen, Arimidex, etc.) would be indicated because you are strongly ER/PR positive, which means female hormones were "feeding" your tumor.  However, given your age, I suspect that you are pre-menopausal.  For this reason, the option for you will be Tamoxifen.  Aromasin and other Aromatase Inhibitors (AIs) are only used when a woman is post menopausal.    Depending on your situation, the doc may also look into suppressing your ovaries.

Now.. that said... there are LOTS of cases like yours on this site.   You are not alone.  I know it is scary and it won't be fun, but you can do this.   The fact that you are ER/PR positive is actually a "good" thing (relatively speaking), because this means that hormone therapy is an option for you.    Just focus your energy toward the end game, which is kicking this thing !

Finally, getting a second opinion usually is a very good idea.  I do suspect, given what you told me, that a second doctor will likely recommend the same thing - a) chemo, b) radiation, and c) hormone therapy.   However, the chemo regimen may change given the preferences of that particular doctor. 

I hope this helps.   Now, hang in there.   Let me know if you have other questions.

Jill

Hi again Salwa !

You are checking this as I was still on line.  

Indeed, there are different side effect profiles for different drugs.  You are very smart to be looking into that for longer term side effects.   We want the cancer to be gone, but given you are only 33, you still got a lot of living to do, and best to look at the whole picture.

First, however, I want to calibrate you on something.  The fact that you are 33 will definitely play into this.   The younger you are, the more likely they are to be more "aggressive" with you.  The reason why is a) recurrence statistics go up for those that are younger (i.e. we have more time to have a recurrence), b) the prevailing thought is younger bodies can "handle more".  I am not sure I am so in the camp of "b", but that is another story.

The second thing I want to calibrate you on is that a Stage 2 cancer (which yours is), is not something you want to mess with - despite that you were node negative.   I just went into Adjuvant and plugged in your stats.   With NO additional therapy, (i,e. no chemo or hormonal therapy), the stats show almost a 64% chance of recurring.   Chemo and hormone therapy cut this by over one half.  Radiation will even add to that.  Quite significant.  The reason I bring this up is because I don't see anything your doc is recommending as "unnecessary" given your circumstance -if your objective is to keep it from coming back. 

Now... that said different chemo regimens have different side effects.  For your age, the ones I would be most concerned about are longer term heart and bone risks.   The other regimens that are "typical" for your tumor type are TAC and ACX4 followed by 12 weekly Taxol.   The "A" part of both those regimens can have heart effects.   Anything with a "T" in it can affect your bones longer term.  (Again... for those of you reading this...don't freak out... I said "can" not "will").   This could be why the doc recommended FEC.   However, I have admit I am not as familiar with the potential longer term side effects of that regimen relative to others.  I am curious now and will look it up.

Anyway... here is what you should do with your doc.

1) Ask him/her to model out your recurrence risk by regimen type.  They can do this (I just did it myself using Adjuvant - but better for you to get it from your doc).    Figure out which one will get you the best benefit.

2)  Ask your doc about relative LONGER term side effects of all the regimens under consideration - particularly in the areas of bone and heart health.

3) Decide how much risk you want take for how much benefit.  

One other important consideration you have not mentioned  - given your age, are you looking to have children in the near future?  If so, this is something you should also bring up as it will affect the doc's reco. 

I hope this was helpful.  I threw a lot at you, so feel free to keep asking those questions.  I know it is a lot to wade through.

Jill

Salwa -

Yes, the highest risk of recurrence is within the first five years after treatment (at least statistically).    That is why the five year mark is a MAJOR milestone. 

Can't wait to get there myself !

Take care.

Jill

Cindy I won't rip the port out myself, but I will aggravate the you know what out of him till he says to take it out, I am quite good at aggravation..........if I have to, will think of all sorts of problems I am having with it and call him quite often........LOL

Well it's Friday, almost had energy today....(Had chemo Tuesday), so not too bad...only took an hour nap instead of a 3 hr one today! LOL...........seriously other then my fingernails and this nose, not feeling too bad tonite........

Hope all are doing good!

Hugs

Deb

CIndy....one more now?  I know you must be over the moon about it.  I am really so excited for you.  Thanks for asking about mom.  She is steady getting more and more tired but still doing pretty well.  She is used to seeing my little one on a daily basis and right now he has a runny nose.  So, she was a little bent that we could not visit today but, I would rather play it safe.           

Other than that, just taking it one day at a time. Thanks for checking in. You take it easy now....You will be full force in the garden soon enough.  Hope the rest of your weekend is great.                Shannon

Hi Shannon..

Good to hear mom is doing well...I understand the grandkid frustration...mine were scheduled to visit but had coughs and fevers so they stayed away.

 Wish I only had ONE more...just two...but thanks for the yell out.

Not sure about Soy..I know when I had hot flashes it helped.  Maybe someone can chime in about it.

Keep mom happy....and give her lots of love.

Cindy