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

dancetrancer

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.   

Moonflwr912

Dancetrancer, vjm- much luck with your tx- I am glad you made a decision- that is truly the hardest part.  Now you just have to get through it.  Much love and small SEs

TheLadyGrey

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 ...

Anonymous

Tlg....I feel the same. My first diagnosis after the first biopsy was lcis, even less than dcis. Surgeon told me to take tamoxifen, watch carefully and live my life. Thank heavens my NP best friend insisted that I get other opinions and dragged me to the appointments, and thank heavens, I ended up with a pitbull for a BS who wouldnt let it rest until she found it. An additional 6 months of her2 idc could have been disastrous. Like you, I thought the smallness would be just surgery and move on. Every week, a new component just added to the stress and panic....as well as basically researching around the clock on the surgery, the reconstruction, the drugs, the chemo options....oof...brings back exhausting memories.

Anonymous

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.

TheLadyGrey

Fluffqueen, if it makes you feel any better I went through insane hot flashes the year before, and especially the summer before (2011) diagnosis. I used an estrogen cream for a couple of months which helped some. Obviously, that stopped in September....



Some of this stuff we will go thorough regardless, the difference being it is accelerated, we are hyper aware and it is on top of a whole bunch of not-on-the-calendar stuff.

Oh and hi Mel and company! Gives me thw warm fuzzies knowing my dear friends are following my journey wanting only the best for me.

Diagnosis: 11/1/2011, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER-/PR-, HER2+

dancetrancer

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.  

voraciousreader

Contact the American Cancer Society if you are in a pinch. They often have volunteers to help you during active treatment!

voraciousreader

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.

dancetrancer

Thanks so much VR - that is a great idea! 

dancetrancer

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)

jpmercy

Dance tracer so glad u have a plan! That was what made me feel so much more content! I had a 2mm did taxol x 12 h for a year i was one of the first 200 cold cap users in the USA thy work I helped a friend who did ac n taxol n a friend who did tch all have their hair! I work in an elementary school n my baby was six months I wanted o look like me n not have to explain it to everyone it really made me not focus on the chemo as much please pm me if u have any questions I'm happy to help frank fronda the inventor from Europe and I have spoken via phone several times I was going to b a us rep but it was too time consuming for me good Luck to u! Oh and as a side note I got my nipple tattoos yesterday and omg they r fabulousI can't stop staring at them thy look just like before it's amazing!

dancetrancer

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!   

bucky317

Dancetrance So glad to read that you have made your decision!! Wishing you few side effects and I am sure that so many have told you...it really does go by quickly and before you know it..you will be done...and you will know that you did everything you could to get rid of any stray "devils"  that might be "hiding" out somewhere.  Thinking of you!

Anonymous

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!

dancetrancer

LOL fluffqueen!!!!!  I am definitely going to have to take pictures of myself once I'm all iced up, literally from head to toe!!!  You know, someone mentioned somewhere to me that icing may help generate new hair growth, too...perhaps you might want to research that to see if it has any validity?  I'd be willing to wear a cap 30 minutes a day to get my hair to grow, if it worked!  The bang thing would be really frustrating - I feel for ya!!! 

Anonymous

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.

dancetrancer

Good luck with the research fluff!  Let me know what you find out.  All I know is someone mentioned it to me, so there may be no evidence at all for it...but worth a look! 

TheLadyGrey

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.

Anonymous

I take a ton of Biotin. I am taking a couple week break right now from all supplements except vitamin c, as I am having surgery on Friday for lipo, fat grafting and nipple reconstruction, so thought I would go easy for a bit.

dancetrancer

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

bucky317

fluff I am not too far behind you!!! I will be having the same (port removal also) the first week of May.  Good Luck to you and can't wait to read about the "new" you!!

ps the image of your hands in the insulated lunch bags cracked me up

vjm

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.

dancetrancer

Hey vjm!  I know, the rads is such a DRAG.  Every day.  Uggh.  Had to play a mental game with myself every day just to make myself follow through.  You are more than half-way through!!!  Walking every day and yoga really helped with my energy level.  

I have my echo and consult with port surgeon tomorrow - surgery not scheduled yet.  Meet with onc to go over all details Wed.  I suspect they won't schedule me Thursday or Friday for my port and first infusion since it would be pretty fast to get all that scheduled so quick after meeting with them.  I suspect it will be delayed until early next week.  Will find out Wed!  

vjm

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.

lago

vjm size matters to guys not gals right

dancetrancer

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!   

lago

I never even saw my onc at my first infusion. It was exactly a week after my port placement. They would have started chemo that day or the next but there wasn't a room available.

I would get blood tests before all the subsequent infusions and my onc would have to clear me to get infused. The first one that isn't necessary because you haven't had any chemo yet.

dancetrancer

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.   

suzieq60

dancetrancer - that's good he wants to wait. I've heard of people having their first infusion the day the port is inserted - doesn't sound good to me.