Stage III Chemo questions

grneyd5600

mcsushi - I actually have a friend (10 year survivor) that had a very similar reaction to the Taxol.  I know she only made it to two Taxol treatments before they stopped her.  She is on vacation this week but I will shoot her a note and get the specifics on what they did after the Taxol was stopped.  I just can't remember now.  Hang in there!   From what I do understand - Taxol is the "mop up" drug so the most critical of our treatment is the first round of stuff they gave us.  You did get that and you will have benefit from chemo.  I shoot you a private message once I get ahold of my friend.  For now, as Joan says find some local support and take a deep breath!  Hugs!!!!

mcsushi

joan & jackie: thank you both for the concern and the support. feeling a little better but i was a hot mess yesterday  getting out of the city and going to the shore with a few friends to get my mind off this...

jackie: i would love it if you get in touch with me when your friend gets back in town. until then, hope you all have a wonderful weekend!!!!!

JFV

Oh I am so glad you are getting away for awhile.  Those shore breezes will feel good in your lungs.  Take good, good, good care of yourself and remember those stupid little cancer cells are just dying as we speak. 

flopsy

mcshushi, My heart bleeds for you!  I am so sorry you are going through all of this.  I have wondered if it would not be better to have rads first and hit it hard where the original cancer was.  They are doing something now called mammosite that does treat the original ca starting at surgery by putting a pouch with rad seeds in for 5-7 days after surg.  This is the extent of the rad tx and then you have chemo.  So, who knows you may be getting it more right than the rest of us.  I pray they will get a good healthy plan for you and move on.  Try to take care of yourself and keep us posted.  LOL,gin2ca

grneyd5600

Mcsushi - which shore did you go to?  I noticed you are in Phila so diid you do the DE shore or the NJ shore?  I am originally from the Eastern Shore of MD.  A little trip away may do you a world of good.  Hang in there!

JFV

mcscushi-  Wondering how you are doing?  Think about you alot.  HUGS

mcsushi

hi everyone! thank you all for your concern and for checking in on me  i'm doing much better. had some time to cry, vent, process, eat ice cream and move on. went to long beach island and just sat on the beach and let the ocean heal my wounds... best medicine there is!! going in tomorrow for follow up with onco and to maybe have a better idea of my new battle strategy. steroids are doing their job and i'm breathing much, much better and overall, i'm feeling pretty great! how are all of you?!! ((((big hugs to you all))))

~colleen 

JFV

Oh so glad to hear from you.  Grew up in NJ and would go to Long Beach Island for day trips alot.  I am in the middle of my first Taxol infusion.  No allergic response.  Sent my husband home because this is taking about 6 hours from start to finish.

Got a UTI this weekend.  and am on antibiotics. 

So glad you got to process things.  Remember write out a list of questions (in other words do what I DON'T do LOL).  Also you are a strong wonderful woman with a long bright future.  You just gotta go thru alot of sh*t to get there. 

MY prayers are with you..  If your not a fan of prayer I send you good wishes and the fact that in my heart I know you will be OK.

mcsushi

Hey Everyone!!

Just popping in to see how everyone is doing? I'm feeling pretty great. Still waiting for a new treatment plan but since I won't be able to restart treatment for at least 3-4 more weeks, I guess I just have to sit tight and learn how to be patient. Hope you all are well...

~Colleen 

JFV

Hi Colleen.  Feeling much better than when I PMed you.  I guess I just needed to let it all out.  How are you spendign time right now?

mcsushi

hey joan.

glad you're feeling better!!! sometimes you just need to rant and get it out. i'm here to listen anytime. try and get some rest and tomorrow will be a new day... i promise to make through with you.

so i've just been biding my time. lots of walking the dog, lots of retail therapy with my girlfriends, and lots of ice cream. at my last appt with my onco i found out that this lung problem i have (it's called interstitial pneumonitis) will take about 6-8 weeks to clear and i can't have any treatment until this problem is fully resolved. i have an appt for another CT scan on the 30th and then a follow-up with the pulmonologist sept 1st. hopefully, my lungs will be all healed and they can restart my treatment.  

they withdrew me from the clinical trial and i found out that i had been receiving the study drug avastin. my onco thinks it was the avastin (not the taxol) that caused all the problems. she's thinking of maybe re-trying the taxol to see how i do. they held a multi-disciplinary meeting last friday to try and figure out what to do with me. so who knows... i go back to the onco next friday so hopefully she'll have a new plan. like i said though, all treatment is on hold until the lung problems are fixed and i just continue to try and exercise patience in the middle of this treatment limbo. 

i can empathize with the "chemopause"!!!!!! i am a hot flashing, night sweating mess. it's awful and the heat and steroids aren't helping any. i started going to acupuncture last week. i've only been twice but it's starting to help and i'm sleeping a little better at night. maybe you should look into it; it may be helpful to you too.

hope your appointment tomorrow goes well, i'll be thinking of you and hoping for the best for ALL of us... 

~colleen 

JFV

Hi Colleen,

I am so sorry about your lung problem I am glad your onc group is being so thorough. I do find Taxol much easier to take than AC.  Hopefully it will work for your lungs! Isn't ice cream great.  There is a lady from my church who stops by every week and brings me a half gallon.  No matter how icky I feel I can almost always stomach ice cream.  Are you buying fun stuff?

 My visit with my onc was almost a disaster.  My tumour markers are still up.  But she actually reassured me and I believed her this time that it means chemo is killing cancer and it takes a long time for my liver to process the waste.  Then I told my onc how I finally sat down and read my post surgery pathology report and how much it scared me.  She made me feel worse!  She said I won't have a reoccurenc I'll have mestasis to my brain or liver and it will be serious.  Then she gave tells me the chance of mestasis and it was huge!  So, when I basically said WTF?  She gave me that, "No one can guarentee how long they'll live" line and told me we are doing everything we can, go home and try not to worry. ACK!!

I cannot get my brain around why she would tell me this.  And I can't decide if I should believe what I was hearing.  Her survival numbers do line up with everything you find online about 5 year survival for my stage and grade etc.  Yet if I do a cancermath thing where I plug in my age, cancer and treatment program my survival numbers are much much better and are in line with what she told me at our very first meeting.  MY husband thinks since I am a pessimist and my onc is a pessimist we make a bad combination. 

I am working on getting myself convinced I will live a long time.  I am almost there.

As far as chempause and sleeping go the Ambien is helping and I slept until 7 am today which is unheard of.  Just one good night sleep had made a huge difference.  Thanks for the tip about accupuncture.  At this stage of the game I can't afford anything that is an extra.  But, if I continue to feel bad I'll check into it.

lrsreyes

JFV

I just want to let you know that I am stage IIIC lobular with 15+/30 nodes. My onco  is an optimist & gave me HOPE from the start. During my last visit she thinks my chance of recurrence is low  since I have responded well to Femara, Zometa IV & tumor markers were always low. I am 65 years old but I had little side effects, no aches or pains & very active.

JFV

THANK YOU SO MUCH Isreyes.  So glad to hear from you.  I was just feeling like I needed some hope and I came up and read your post.  What a wonderful "Godcidence"  My tumor markers have not stayed low but onco hopes that means the cancer is being killed..  I am very glad to hear a success story like yours it is just the boost I needed.  I am 49 and have never looked as young and glamorous as you do in that picture.  You go girl!

grneyd5600

Hey Joan

I am not aware of them reviewing my tumor markers.  Did you have a mastectomy or a lumpectomy?  What kind of test do they do to measure your tumor markers? 

Hope you are hanging in there!  I can sense the anxiety in the postings so I just wanted you to know I was thinking of you.  Hugs!

Colleen, glad to hear you are doing better.  I got your note too.  Keep me posted.

JFV

Hi  Jackie,  They marker tests are CE 15 I think,  They have risen since my first diagnosis and during chemo.  I had a double mastectomy with immediate implants.  

I am full of anxiety.  I made the mistake of finally reading my post surgical pathology report which showed 3 kinds of cancer and what an agressive form I have and that my tumor margins may not be lcear.  I saw my onc this Friday and told how much the report scared me and she did little to help me feel better.  In fact she made me feel worse.  So my anxiety is now at the level it was when I was first diagnosed. 

I know that anxious or not I need to go through all my treatment and live what ever I have of my wonderful life.  But, right now the anxiety and chemopause symptoms are almost paralyzing.

This really the only place I can vent.  Everyone else I talk worries too much.

Thanks everyon for listening.  Joan

grneyd5600

Joan

I can understand the anxiety.  I would suggest that you hang on to the hope that the treatment you are getting is your best bet on beating this thing!  You are doing everything you can to knock the beast down.  You have to hang on to hope and have faith.  It's the only way any of us get through this.  As hard as it is you have to stay positive!  Mind over matter.  Please know that we are all here to listen and support you.  You are NOT in this alone!

 Hugs!!!

Jackie

JFV

Thanks Jackie,  You and all the other ladies are a real blessing to me. 

Latte

hi everyone,

i just found this thread and want to join too. i know some of you already from my chemo thread, but it's nice to have a stage III thread too.

have you all seen this thread of stage III 5year plus survivors for inspiration? http://community.breastcancer.org/forum/67/topic/748445?page=1

 Nicole

grneyd5600

Latte you are welcome to join us!  The more the merrier.  I had seen that thread you posted but nice of you to remind us about it.

Hugs,

Jackie

JFV

Hi Latte and Jackie- good to hear from you both.  That is a great thread.  I am going for my second dose dense Taxol today.  It will be a long day.

grneyd5600

Good luck today Joan!  I hope all goes well. 

mcsushi

Welcome Latte! Joan, GOOD LUCK!!!!!!!!!!!!!

JFV

Thanks ladies!  Jackie, glad Taxol went well.  mcsushi have any decsions yet?

mcsushi

joan: glad to hear the GOOD news!!!!! i have an appt with onco on friday. hopefully i'll get some news then...

JFV

Hi Ladies, Day 3 post Taxol.  Very tired and funny taste in my mouth.  A little tingling in fingers and toes.  mcsushi-Like your photo

clariceak

Joan - so sorry you are stressed again.  I also made the mistake of reading my path report, although initially during my first visit with my onc and told her I realized I was Stage III and the situation was quite serious, but I did want to discuss my path report.  I only wanted to focus on treatment.  I then went to see my breast surgeon who gave me a paper copy of my path report to take home.  I read it on the plane home. Big mistake.

You can control how much information you want and what kind.  You'll hear over and over again on these boards that working with an onc who understands you and the approach you want to take is key to feeling positive about treatment.

grneyd5600

Day 3 after first Taxol today. Still doing well just a bit more tired.  Of course the "stubble" that grew back on my head during my chemo break has started to fall out again.  Ah the joys of battling the beast!

Hope everyone continues to hang in there.  We are going to get through this!

PS I changed my profile pic - that is Devils Tower (Wyoming) behind me in the shot. 

JFV

clairceak-  thanks for your words of encouragement. There is little to distract my mind right now so I tend to worry.  I hadn't realized you are a year out.  How are you rfeeling? I will get through this somehow!

Grneyd5600-cool photo!  I am so glad you took that trip.  Next year you'll take it with your hair blowing in the breeze.  I am quite tired today and have a metallic taste in my mouth.  Gonna eat lots of ice cream.

amlg1

Hi all ! Just thought I would chime in,i did think Taxol was harder on me than,A/C..go figure.I did DD x4 ,it did make me tired after a few days,but hyped up the day after from decadron.You gals will get through this.It seems so long ago that I finished TH,but actually it was last August.Just finished herceptin 2 weeks ago.

Joan..I can't believe that your onco,would say that,we are scared enough do we really want all that info?Hope your doing better.

Colleen thinking about you and hoping you did get good news.