Sept 2012 chemo

Hopex3

Cherrio...Me too. I'm starving all the time for things I normally don't eat. At first I thought it was the chemo but I am 6 weeks PFC. After my fill this morning...I made my husband take me to breakfast and I chowed down pancakes. It's crazy how voracious my appetite is!



Hope those of you getting the snow storm don't get too much....Brrr..I am ready for warm weather.

Foreverchanged72612

Mariposa: I will totally send those photos to you! I can't figure it out myself.

Clear and beautiful day today...time to start digging ourselves out of this snow!!

jojo2373

I read a post in the rad thread about the fear that comes with finishing treatment. I know as much as we look forward to that day, it also brings great anticipation. The post said this: "During treatment it feels like our hand is being held by our medical team. At the conclusion of treatment, our hand is let go. We turn and face the world". I so feel that coming up.



Enjoying a beautiful windy day - doing laundry!

cgesq

Well, I'm here in northeastern NJ, where we got about a foot of snow, and since my exchange surgery on Monday, I'm not allowed to shovel!!  Oh well....more for DH to do!  At least my dog is happy!  She romps around and then treks all the snow into the house!

I've been told by my physical therapist that herceptin can cause weight gain, so for those of us on herceptin for a year, watch out!  I've come to the conclusion that everything about this f*cking disease sucks!!!!!!!!!!!!!!!

Neta69

Beautiful here in Ottawa after yesterday's snowstorm.

Jojo, I felt exactly like that (and still do some days). I think this is a bigger challenge than we expect and it's not "over" when treatment finishes.

Mariposa123

cg:  That sucks about herceptin!!!!  Uggh... why can't one of these drugs make you thin, give you beautiful skin, and make you smarter.                     

Hope all of you with lots of snow are keeping warm.

 

kelleyb

Sisters, I will not be having surgery next week!  

Amy - I hope you can kick your bug and carry on for both of us - be sure to hydrate, hydrate, hydrate!  

For two weeks my gut was telling me that my "meh" response to chemo, as evident on my MRI, was due to not doing all the chemo up front and that given my type of cancer (inflammatory) this did not bode well.  My MO wanted to do the Taxol/Herceptin, then surgery, then AC or something else after surgery.  I've been consulting with a doctor in Philadelphia, Massimo Cristofanilli, who is the leading expert on IBC.  Luckily I emailed him and told him what was going on and expressed my feelings of doubt about my response and worries - and he was able to see me on Friday.  I got up at 4 AM, took a train to Philly, and spent a good hour with him going over my results, my diagnosis, and options.  

Right away he spotted the tell-tale swelling and skin thickening on the underside of my breast which indicates cancer in the skin.  My MO and BS did not see it (I had pointed it out to them both to no avail).  

He strongly disagreed with my MO and BS that I was ready for surgery - and recommended we do two cycles of FEC plus weekly herceptin, which he said would probably get me to a complete response.  And if not, he named some other drugs he felt would get me to PCR, which we all know is the gold ring of breast cancer.  The better your response to chemo, the better your chances for the long term and no recurrance.  He also explained a bunch of stuff about herceptin and resistance to it that I did not know and tricks to get around that if need be.

Turns out my tumor is 90% ki-67 - almost as aggressive and fast replicating as possible.  More chemo is better, and weekly herceptin vs. every 3 weeks helps beat back the cancer while you wait to go to surgery.  

So, I am at peace and switching from surgery prep to chemo prep.  It looks like I will start FEC on Wednesday.

I plan to sleep as much as possible through any bad days vs. the Herculean struggle I put up with during TCH to be active and productive.  Nope, I surrender this time, I just want to get through it without suffering too much - and pray it does the trick in knocking down that pesky tumor.

Mariposa, I read your post about your MRI results on the train going up.  I cried. Hard. Resonated deeply with me.  I think neoadjuvent chemo is wonderful, but it is mental torment, all the waiting, having a cancer bomb strapped to our chest, praying the poison and suffering are not for nothing, that at the end of the road they will say "we can't find it!".

Six months after diagnosis and I, too, had the "call the family" fantasy in my head.  My MO and BS did their squeeze tests and assured me I had a fantastic result.  When I saw the MRI, my heart sunk.  The tumor was not that much smaller.  Why did I have to wait 12 weeks to get an MRI to show me I needed something stronger?  I feel like so much time has been wasted.  Further, I don't know about you ladies, but I am so bone tired from playing amateur oncologist.  Where is the pro-active care among these doctors?  Dr. Cristofanilli is so well known and beloved, partially because he is so damn thorough - he cuts no corners, he is a major proponent of frequent testing.  He is an artist. He is passionate about giving the best possible care for his patients.  He is NOT LAZY.  He keeps an eye on progress, course corrects, zigs and zags.  

C'mon oncologists, let's stop with the squeeze testing and baby talk - the clock is ticking - let's do the imaging and not waste precious time and energy going down the wrong path.  I am so grateful I reached out to Dr. C to get a second opinion.  

Hope you are all having a great weekend.  It is a blessing to share this journey with you, there is so much courage, compassion, and collective wisdom in this group.  xoxo

Amy4978

Kellyb... I too am so happy you were your own advocate and sought out a second opinion....sounds like you are in good care and are very comfortable with Dr. C much luck to you in the up coming weeks and I fully agree that we need to stop fing around and do more imaging tests! My origina mammo missed my cancer... Slumped it off to dense tissue, 3 months later I was diagnosed a stage 3! Some days it pisses me right off!

Hugs to you!

Mariposa123

KellyB:  Thank you for posting about your struggle.  I did the unthinkable after reading your post.  I wrote my oncologist and asked if there was anyway that I could get more chemo.  I want the best possible response.  I need to be here for my children.   I am also glad you are so strong and such an amazing advocate for yourself!  I feel like that is what defines us as fighters.  We sometimes do what we would never imagine to make sure we survive.  I used to be the person that would just eat the dinner that the waiter brought me, even if I didn't order it.  Didn't want to bother anyone.  One thing cancer is teaching me is how to stand up for myself.  Who knows what my oncologist will say.  I hope he says okay.  We will see.  And I agree- more imaging please.  Everyone thought I had a complete response based on the squeeze test. 

I hope everyone is having a nice day.  I am feeling weird today. 

 

kelleyb

Mariposa - that's fantastic - do everything in your power for your best outcome and so that you can have peace of mind knowing you took it to the limit. There are so many ways to get at this beast.  I have read that some cancers respond better when you get both a taxane and an anthracycline, especially if you have it in your lymph nodes and/or it's aggressive.   Also, I have learned the truth in the advice that you really must be getting second, even third opinions.  I'll be interested in learning, if you choose to share, what the onco comes back with.  Big hug!

  

florbo

kelleyb--I'm so glad that you are proactive and trusted your instincts.  So thankful that you were able to find an advocate and expert in Dr. C.  I pray that you will have a great result with the new regimen.

Amy--there are days that I do feel angry about the breast MRI that wasn't able to catch my recurrence.

Anonymous

Hi ladies, 

I haven't frequented the boards for quite sometime now. I hope that all of you are well and have minimal side effects. I finished my last Taxol treatment on 2/7 and will start Tamoxifen on 2/14. I cannot believe I have reached the end of this portion of my journey with cancer. I really wanted to post to say thank you for all of you who got me through the worst of it all. 

Lots of love and hugs, 

Justine

Faith-Focus-Finish

Good Morning All!   I've been offline for a few days ... been dealing with the pain/discomfort of my fill. Plus, we have family staying with us this weekend.

Amy - What a beautiful story about your pastor. I believe in signs. I believe he was sent to you to comfort you and let you know you are going to be fine. You are in good hands, God's hands. I hope you and your kids are feeling better soon!

cgesq - Thanks for the bra suggestion. I have looked high and low for one and have come up empty. I finally purchased two camis, but really wanted more of a bra. I will pick up a couple for me now - and then for when I have the 'exchange.' I am going to remind my PS about the tape for me - I too have allergies and that is one of them. I'm so sorry you had to deal with that too. : (

Mariposa - Stay strong ... You will be fine ... we are here for you! Keep your mantra close and your talisman. I thought she was terrific.

Marian - I agree with you, getting through chemo was one of the biggest things! If I sit and think about it, I get really emotional. The residuals are so annoying, but we have to know that each and every day, we are getting better.

Forever - I love your pic too. I hope you are feeling better soon.

Patricia – You are almost there! 

Florbo – It is great news about the tumor shrinking.  I hope the BS will have some different kind of news for you.  I don’t think you’re being shallow at all.  Many times, I long for the way I used to look.  It just totally sucks.  Sending prayers and positive vibes your way!

Hope – I’m glad to hear your fill went well.  Sometimes my PS gives me a little bit of a hard time, but deep down he seems to really care.  I think they say the first thing that comes into their minds – thinking it is putting us at ease or trying to make the situation a little lighter.  I did not see much of a difference the first few times.  Now that I have done a few, I am seeing a difference.  They are more round.  I feel like they are up in my throat, but my PS assures me that with the final outcome, they will be lower.  I am glad you are able to sleep in the bed.  I didn’t for about 6 months – too uncomfortable.  I’ve noticed since this last fill, it has been difficult for me again.  They feel like 2 large, hard coconuts.  Mine don’t move at all.

Neta & Jojo – Yes it is scary.  Lots of people think that once treatment is over – all is fine.  I fear that cancer will NEVER leave my thoughts.  Sigh ….

Kellyb – Sending good thoughts your way as you prep for chemo.  I am glad you took that train and got more/better information.  I too got 2^nd and 3^rd opinions – it’s too bad we have to be our own advocates moving through these unchartered waters … Originally, my gyno said she did not feel anything – when I told her I felt a lump.  I had to insist on getting the Rx for the mammogram & ultrasound.  She said there was nothing there and to wait until my next scheduled mammogram (which was 1 ½ months later).  My BS said if I had waited until then, I may have been in a different place with all of this.  I was so pissed off at her.  I am in search for a new gyno.

I’ve been walking as much as I can outside – while the weather is nice.  Unfortunately there is no movement on the scale.  On the upside, the number is not getting larger either.  I’m surprised though – been craving lots of sweets – lots of things I don’t normally eat.  I’m good for the most part, but have given in to them at times….

Hugs to everyone  : )))

jojo2373

Kellyb, so glad you took that train. Hopefully we can meet this year.



When one of us figures out how to get the scales to move down, please share! It's getting frustrating and my pink radiated boob is not motivating me to feel sexy.

kelleyb

jojo - Walking Dead viewing party!!!

jojo2373

Yes! I can't wait! At my office I have a beware of zombies sign. During chemo it applied to me as well.

Foreverchanged72612

Last chemo tomorrow, ladies!! And then the focus will switch to trying to eat super healthy and working out to ensure I'm at my best for surgery. But for tonight? Ice cream!!!!

Cherioo

Foreverchanged yeah

Amy4978

So happy for you foreverchanged! (about the chemo and the ice cream) sounds delish.....

Onward to the next chapter for you whooohooo!

Faith-Focus-Finish

Early congrats to you Forever .... enjoy the ice cream!! : )))

Cherioo

Amy, how are you? This week will go by fast and next thing you know you will be home with your little ones watching moves and relaxing

Cindi74

I figure we September women are in ths together.  Afterall we have a five year reunion planned in five years.  Finished 4 A/C. one every three weeks.  My 11 Taxol is Wed.  Got measured and Tatooed for rads starting March 20.  Looking forward to 4 weeks off after two more taxol.  Feel fatigue. tingling. knuckles are red, inflzmed. raw.  But the end of chemo is in sight.  Hugs all. 

Queen Kong.  You are with us.

Amy4978

Cherioo.. I am all set! House cleaned, family coming in to help, bag ready, and getting my nails done and grocery shopping tomorrow... Emotionally.. I am praying I can keep my nipples, anxiety is building, and I am wondering if my BS will proceed with my current cold

Im gonna call tomorrow and see what she says about me being sick. Its not a real bad cold but I am def sick!

As far as my nips I wont know If I was able to keep them till I wake up and they tell me.... Once Im under they will scrap the backs of them, send them to pathology, and if all is clear they are mine for life.... I expect I can since my MRI showed to present cancer on imaging and my BS said in all the time she has been doing this only one came back positive and she had to take them but the unknown freaks me out! I am afraid to let my guard down and think they are gonna be there.. I just have to be okay with either I guess? Very nerve wracking...

And I know life or nipples right? But I have to say keeping them will make me feel more whole and as caddy as that sounds screw it cancer has robbed me of enough... At this point I am getting demanding and cancer can go to hell! Im keeping the nips..

Okay Im all better now! Lmao

Thanks for checking on me... Hugs!

Cherioo

Amy, I know how hard that is. I unfortunately had surgery first and I loss mine but I am ok with that . I pray that you will wake up with yours. As we know god is our healer and I am standing on my healing and all yours as well as the group. We have things to do for him . Hang in their and rest you will be fine

Cherioo

Cindi we missed you sister. Glad you are almost done

Amy4978

Cherioo.. Im just gonna say my prayera tonight and tell god I trust in him and to give me strength to walk the path that he sees fit for me!



Whenlife.. I will be thinking of you tomorrow... Hugs

Hopex3

Cindi...Good to hear from you! Glad your almost done with chemo.

cgesq

Cindi,

Thanks for checking in! Stay strong--you're almost done!!

jojo2373

Cindi, missed you and glad to hear from you.

Forever - YES!!!!!

Neta - awesome hair!

Amy - will be thinking of you this week.  Part 2 will be over very soon and then you can join us in rads!

Today will be 6 of 33!

kelleyb

Amy - good luck today, hope you are well enough for surgery Wednesday.

Cindi - so close to the end  - that's awesome!

Forever - just one more!  Woot woot!