Topic: < 5 mm HER2+ IDC...why NOT chemo???

Mar 21, 2012 04:27PM dancetrancer wrote:

Hey vjm!!!  Yay!!!  So happy you have made a decision - it feels SO much better to finally be DONE waffling!!!!  I am set up for my echo and consultation with the port surgeon next Tuesday.  I am waiting to find out when this means I'll actually have the port surgery and start my 1st infusion.  I'm guessing it will either be the end of next week or early the following week.  I'm busy, busy, busy reading all the chemo threads/FAQ's/and hair threads.  I'm still petrified, but yes...all ya gotta do is keep showing up...it's definitely a mantra I held through rads and will hold onto through chemo.  If all these women have done it, surely you and I can, too.  So glad to have met you and be able to share our experience!  OH, and BTW, if you like, can you post your story on this thread, too?

 calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

I'm just trying to keep a running tab of the few HER2+ t1a's we've got going here.  I need to update the poll with my decision, too.  Going to do that right now.   

Mar 21, 2012 06:37PM TheLadyGrey wrote:

I think part of my problem was that I bought into the faulty logic that my small cancer wasn't worthy of all the attention, and, therefore, the side effects from said attention.should likewise be small. It felt like grandstanding to talk about it or give myself a break seeing as how I didn't have a "real" problem. I think if I had had a bigger tumor or positive nodes I would have given myself permission to have the side effects.

I started out with a DCIS diagnosis so went into it thinking I was at zero risk and the whole thing was silly -- there is a school of thought that DCIS is not cancer.

Obviously, the taxotere and carboplatin has zero interest in whether I was grade 0 or 4, HER+ or - or ER/PR + or -. They were going to do their deal regardless.

I'm passing this along only because I think women are sometimes reluctant to give in to illness without a damn good, gold plated reason (excuse). It just felt too weird to say "don't worry - I'm fine! Now please excuse as I must use the restroom for the 11th time since we started this conversation and then I'll have my third nap of the day."

Maybe it's just me ...

Mar 21, 2012 07:45PM fluffqueen01 wrote:

Ohh, and if mine comes back somewhere, I am definately doing the cold caps. Wish I had this time too, but I just ran out of energy trying to get it all together.

Now...if I could just fix these debilitating hot flashes that make me feel like I am going to internally combust, I might be close to normal again.

Got my graduation certificate yesterday for completing treatment, but I think I am going to participate in a vaccine trial for her2 early stagers.

Mar 21, 2012 10:25PM dancetrancer wrote:

TLG, I can relate to all that you said, for sure!!! 

fluffqueen - wow - you dodged a major bullet!!!  HUGE congrats on finishing treatment!  I can't wait to be where you are someday.  It seems so far, far away.  I talked to MD And a little about the vaccine trial (but not much).  She said once I get my Herceptin in to contact them, and they'll see if I qualify.  That's well over a year away...we'll see how motivated I am for all that travel and intervention by that point.  

I'm definitely strongly considering the cold caps.  I have a call into my doc to see if he'll approve it, and I left a message with the cold cap company as well.  I talked to two of my girlfriends about it, and they thought I should go for it.  They live far, far away, but have offered to come help me during my treatments.  So, now I just need to recruit a few local friends to cover the other treatments.  Hopefully I'll be able to do that.  It's definitely hard when you've only lived in a place a few years and have no local family, but I think if I put the word out a few good souls will step up to the plate.  

Mar 21, 2012 10:31PM voraciousreader wrote:

And....don't be proud! Take all the help you can get from friends, acquaintances and even strangers. Also check out the INFUSION ROOM ETIQUETTE thread to get an idea of what's ahead.

Mar 21, 2012 10:59PM dancetrancer wrote:

Oh, just saw your 2nd post.  Yeah, I think I'm going to get my lesson in humility on this round of treatment.  Uggh!  Oh and I've already read the infusion room etiquette thread.  Wonder if I'll have any "interesting" stories to share...but don't be surprised if someone from my room posts about the weird lady with a blue cap on icing her hands and feet.  LOL  I'm going to be quite the spectacle. (assuming my onc approves)

Mar 24, 2012 09:27AM dancetrancer wrote:

jpmercy - thank you!!!!   I most definitely feel better now that I have a plan.  How cool to hear that you did the cold caps as well and that you and all of your friends saved their hair...this is amazing!!!  My onc approved me trying them, they'll be delivered next week.  I talked to a few friends, and I don't think I'm going to have any trouble recruiting my "cold cap angels" as I call them!  It definitely is giving me something else more positive to focus on, and I think will be a great distraction for me during chemo...otherwise I'd be focusing on every little sensation, heart palp, etc.  I'll be too busy focusing on the cold caps, I think, to let my anxiety to create false symptoms (my brain is good at that, LOL!).  How cool you thought about being a US rep...I haven't even started, and I've already been wondering if it might be a cool part-time job at some point.  

Fantastic about the nipples!!!  I had nipple sparing on one side, but not on the other.  I am having a silicone prosthetic one made to match.  Can't wait to get it and see how it looks!   

Mar 25, 2012 12:32PM fluffqueen01 wrote:

dancetrancer....you will look especially cute if you have your feet and hands stuck in non-matching insulated lunch bags that you got at a discount store because you were too cheap to buy the matching ones. lol. I wish I had done the cold caps, as I said before. My hair is growing in pretty well, but I can't seem to get bangs, which is making me insane. I could do a cute short style if I could just get longer bangs.

emailed a picture to my daughter and said how does this look after I sspent about 30 minutes messing with it. she texted back that it looked cute, but I should pulll my bangs down further....lol. Told her if I had them, I would...and the wig went back on!

Mar 25, 2012 01:22PM fluffqueen01 wrote:

I am going to research that right now. Icing my head would be great, especially with hot flashes. I have been known to take load one of those blue ice bags up with ice and sit it on my head for a while at night during hot flashes. really helped.

Mar 25, 2012 03:11PM TheLadyGrey wrote:

Frank Fonda, the Penguin inventor, says hair likes cold. He recommends that you wear the cap from the freezer for an hour a few times a week between treatments.

I didn't do that much - I just couldn't deal with it, but I have toyed with buying an Elastogel cap and doing it for the next few months.

Biotin is also supposed to help hair and nails - the only supplement I'm taking as it doesn't upset my stomach.

Mar 26, 2012 09:20AM dancetrancer wrote:

Oh good luck with your surgery fluff - very exciting!!! 

Mar 26, 2012 11:49AM vjm wrote:

Thinking of you on this day Dancetrancer..... off to my 11th of 20 rad treatments. Starting to feel weary and trying to keep the faith. Started looking at the Cold Caps this weekend and doing research - not sure I'll fuss with that process. Did dream I had my port surgery... still aways away for me. Let me know how things are for you this week - I will definitely be thinking of you. Thanks for your postings - very helpful. Cheers, vjm.

Mar 28, 2012 03:54PM vjm wrote:

Hey Dancetrancer - got my date for 1st chemo April 13th. Now trying to keep rad breast intact and applying compresses - 7 more to go. Really at peace with decision to do chemo and herceptin - niggle is gone. Not the size that matters with HER2+!!! Trust you are well - lots of love and joy, vjm.

Mar 28, 2012 09:28PM dancetrancer wrote:

LOL Lago!

I am having my port put in this Friday.  Onc does not like to start chemo until port is healed at least 5 days.  Unfortunately, he is going to be out of town just when I could start, so it looks like it will be put off another week beyond next week.  That's ok...I want him around if I have any problems!  I don't have a firm date yet.  They have to get all the insurance pre-approvals, etc., etc.  Takes a while to get this set up.  vjm, I may be starting about the same time as you by the time this all gets set up!   

Mar 29, 2012 08:45AM dancetrancer wrote:

My onc is going out of the country, and I suspect he wants to be around for my first one and afterwards b/c I always have lots of questions.  

My onc said the infection rate of the port is higher if you try to access it < 5 days after insertion, so he doesn't want to take any risks w/me on that.