TRIPLE POSITIVE GROUP

momx2-specialk, moonflower and I have all had big issues with tissue expanders. There is a great thread called tissue expander problems. They can help make you feel better. Special K is the new poster child.

Update on my gyno issues. My GYN called today after I faxed him my list of questions. I was sitting in My ONC's office, fortuitously, so we put him on speaker and they had a big convo. Apparently my cells are not abnormal. I have endometrial cells in the pap smear, which IS abnormal for a woman my age. He suspected my estradiol levels would be high, although they haven't been the last couple of years when they do a hormone panel. At any rate, they are still waiting for the endometrial biopsy results, but he thinks he wants to do a d and c to double check everything. Things a hysterectomy might be overkill from what it looks like right now. There were no signs of squamous cells. They both think the whole thing might be related to tamoxifen and agreed that it should stop immediately. I am starting on Arimidex. They will test levels in 6 weeks also, but think that may do the trick.

I asked what would happen if I just said I wanted a hysterectomy and I was not going to take Arimidex. He convinced me to give it a shot first and then decide. Said I could always have the hysterectomy and if I can't tolerate them, he will work with me. Said he would put me back on a low dose of cymbalta if the joint pain is too much.

So, potentially better news than I anticipated at this point, but as my ONC noted, he doesn't give me odds anymore as I seem to end up on the wrong end of them. 

Lago, this is for you  

This thread has really gone to the birds lol

Momx2 - so sorry you are having issues with your surgery - hope things turn around for you soon.

I do have either a UTI or the start of a kidney infection.  They gave me an antibiotic but are sending it out for culture  I had moderate blood in my urine also.  I am severely allergic to sulfa and have had adverse reactions to cipro - they were like  - well what usually works for you for a UTI and I said - I really haven't had a UTI in 20 years so I don't know.  Chemo and me appartently are not getting along.

Linda, what a great photo.  Your skin coloring looks great with the scarf/top.  It always amazed me that, for the most part, my skin looked pretty good during chemo (I'm prone to breakouts).  

Fluff, it sounds like the news today is good news or cautiously optimistic news.  I've come to the point where I not only accept cautiously optimistic but embrace it.  

momx2, Congratulations on the all nodes clear but sorry you're having healing issues.  I had a leaky left breast from mid-January through the end of April and it really got me down.  I suppose because it's a constant reminder that things aren't yet right. We're used to our bodies behaving in a certain way and then chemo, surgery, radiation and all the other stress of the process creates a new normal that doesn't feel anywhere close to normal at a time when all we crave is normal, if that makes sense.  Looking back over it all, it has been the reconstruction that's slowed everything down the most but when you think about it, recreating body parts is far from a perfect science - especially when our immune systems have taken a beating from the initial surgery, chemo, radiation, etc.  I haven't gotten to where the dark cloud has been dark enough to go on antidepressants but I've been on them before and I know they can help as a bridge.  I hope your plastic surgeon is working closely with you on this.  I ended up having to switch plastic surgeons - not once, but twice - and the second one definitely improved the situation over the first one and the third one has definitely helped improve the current situation.  I had to switch this last time because of a move but what I'm saying is this:  if you're not feeling any satisfaction or have any qualms at all, there's nothing wrong with getting a second opinion from another surgeon.  

Moon, your daughter is a beautiful young woman/bride.  They both look so happy!

lago, I would walk softly and carry a big stick.  On the other hand, there's a big fine according to the link you posted.  Okay, I would walk softly and carry a fly swatter.  

So have I

Your bird stories are cracking me up!  Lago, buy a cat and get it to walk on a leash...wait get it to power walk on a leash :-)

So I had a down day today.  I get the feeling that I am finally starting to own this breast cancer and I just feel like my life flew way out of my control and is still a disorganized mess.  I don't normally get down so I think this is the moment my NP was always worrying about.  She told me that for some, it takes a long time to own that you had cancer.  She said my positive attitude would have to eventually crack one day.  Fluff, what you said about losing confidence in your life, I so feel that now.  I feel middle-aged and no longer a go getter at work.  My garden looks awful this year and that's because of the bad winter, but I feel powerless to get it back together...I'm finally owning this.  How weird is that?

I'll pull myself up by my bootstraps, and I have to stop lecturing myself for my disorganization--heck, I went through cancer as a single woman. I had the help of many friends, but it was tough to ask.  I have to celebrate me and not get down on myself.

Thanks for letting me rant.  And I'm happy to hear all the good news.  The bad things will pass.  Chemo is really such a short time in the long run.  Celebrate each milestone!  And eat what tastes good!

Can anyone tell me besides the lumps what are the signs to look out for? No one ever told me what to look out for after I completed treatment. Any info would be great.

pbrain and trisha-anne your posts were so timely for me today! I quit my high stress, lots of travel, lots of work job the day I was diagnosed.  Seriously picked up my shit and left.  I didn't work for 2 years because I just didn't feel good with rx and surgery blah blah blah you all know the drill. I took this stupid job I have right now (sales, not exciting at all) because I could make my own hours and it was flexible.  I am MISERABLE.  All my friends are climbing the corporate ladder and here I am with barely the energy to get up in the morning.  If I hear about one more promotion or VP title im going to scream.  I am afraid to go back to what I was doing - I don't know if im sharp enough or have the stamina.  I am job hunting but I have been told many times Im over qualified because quite frankly I am, but I don't know if I can do that job any more.  ugh.  just ranting.  I feel so robbed of my pre cancer life. fuck cancer.

 Trisha-anne, glad to hear you are getting your mojo back!

fluff hugs- that is so f'in crappy -like the bc wasn't enough. I hope its very very early and the hyst takes care of it.  As for looking old, my gyn told me that she has a woman on zoladex for 4 years and she said "she aged 10 years in a year" yippee!  thanks!

Fluff - I was on Arimidex for around 14 months, and it was pure hell. I had really, really bad joint pain and I "lost" my brain. I couldn't function properly and felt like I was living in a fog.  My onc changed me to Aromasin - and it was as if a light was turned on in my life.  I found my brain again! lol and more importantly my brain is still there!  I do get some joint pain, and now after 2 years on Aromasin it can be bad, it's nowhere near as bad as on Arimidex. So - Arimidex was bad for me and Aromasin really good - for some women it's the other way around. You won't know until you try it. I was at the point where I had decided that if Aromasin was as bad for me as Arimidex then I would not take anything as QOL was more important. But you need to try it first.

I have a friend who is also triple positive, and her IDC was very small. She decided she was not going to try an AI because of all the se's she'd heard about and didn't want to go through that. Just over 12 months out of finishing Herceptin, she's now stage IV.

Rozem, I don't know which AI you are on - but it might be worth changing to a different one to see how you cope. I really think that my change from Arimidex to Aromasin was what made the world of difference to me.

(((hugs)))) to you both

Trish

xoxo

3 years on Anastrozole. I was doing fine till around January. I've been on a month break. My onc is recommending Aromasin but DH & I will be discussing this next week. Have I aged sure but I'm not so sure I can blame it on the Anastrozole. I mean I am 4 years older and went through chemo-pause. I still look better than many women my age and they never even went through treatment.

But as I said before I was more scared of this drug than chemo. I realized though I can always quit. You won't know if you have issues until you try. How soon after you go off the drug do things improve… for me is started to improve 24 hours later!

goutlaw I would research the lapband carefully. I know a couple of women who did it. One was diagnosed about the same time as me. She's have lots of the "rare" complications. My friends sister is also have a few complications. I would first ask your onc if s/he can recommend a dietitian and maybe some kind of exercise program. If that fails then you can revisit the lapband.

Mom, I finished Chemo on June 20, 2011. I started tamoxifen July 1, 2014, so I made it almost three years.

The Arimidex bottle and I are having a stare down. My onc starts with Arimidex, moves to Aromasin, and then to the other two. I asked about Faslodex, and he said it really isn't FDA approved for non metastatic people. i thought it sounded pretty good. 

Trisha-your friend is enough to keep me on the drug. Did she have it in her lymph nodes? 

Onc said if I have joint pain, he will prescribe Cymbalta again to see if that will help with joint pain as well as take the edge off my anxiety.

Lago-Knowing I can quit is the only thing that is giving me strength to take it. If I do have to quit, I probably would have a hysterectomy then just to help reduce the estrogen production.

fluff - special k is the new poster child - lol!!!  Glad they gave you some clarification on the hyst front.  Keep in mind that you can switch drugs, and manufacturers, to find a good aromatase inhibitor drug fit.  On the AI threads just remember that nobody will be there exclaiming how much they love Arimidex, or whatever - people come there to bitch.  That doesn't mean there aren't people out there taking the drug and doing just fine - they just probably are not posting.

linda - actually this is par for the course - nobody gets through unscathed.  It is good that they are culturing - I took an old drug - macrodantin, which I had not taken in years but thought would be ok - nope, allergic.  That caused a rash and bought me even more steroids - awesome!!!

mom - sorry to hear about your healing issues - believe me, I can sympathize, but please know you will get through this.

efc - you can live a long time on soup - I am living proof.

fluff - Panera Broccoli and Cheese in a bread bowl is pretty much the bomb!  And Tomato Basil.  You may be pleasantly surprised at how you do on an AI - I struggled a bit, but changed around meds and the one I am on now Femara ( generic letrozole  - by Teva) has caused no substantive issues so far, and I have no joint pain, but I eat an anti-inflammatory diet.  My hair is ok, but chemo dealt it a blow, I was not one that had it come back thick and curly.  I don't think I look old (I think you and I are the same age), nor do I feel like I look any older than I would have otherwise - I have been on an AI since mid-2011.

Thank you all for your input and words of encouragement . Im so exhausted and drained ,I hate feeling so sad since my BMX...

Footballnut-you are cute as 2 bugs. Seriously. My bald head looked like a light bulb-that melted a bit. I did the shave the first time. My hair looked like I had mange. Bad mange. Untreated mange. Then-it fell out two more times. And I quit caring. Losing my nose hairs was rough due to allergies-but oh well. I now have curly almost the same color as when I was a teen. Not quite strawberry but close. Weird. 

See my MO Thursday when we will discuss the merits of Femara. Again. I swear that drug was created by some snot nose PharmD who hates his mother. 

On a happy note. Returned from Boulder late Sunday. Oh my I did NOT want to return to dry dusty SE NM. The weather was wonderful-cool, lovely rain, beautiful flowers. Her apartment is the size of a Kleenex box. Just less than 500 sq". We became first name friends with staff @ Bed, Bath, and Beyond trying to create storage out of nothing, Found a couch that lifts one end for storage, a 3 drawer dresser to use as a TV stand, lots or creative under sink, and above closet items. Towels will be stored in the dryer. Pots and pans stored in the dishwasher. At the bookstore we were looking for CU Law T-shirts. A man heard us talking and introduced himself. A law prof-he was complimentary to Sarah for being admitted and offered 1L advice for success. Her apartment is less than a 2 minute walk from the law building, a whole foods, a sprouts, and a 3 minute walk to Target. She started her summer internship @ a sustainable farm yesterday and said it was the BEST day ever. Mom is happy. AND, bless her little heart. She said she could see me living there. Told her I would not infringe on her life. She said we could live in the same town. Sweet girl. Made my ole sick heart almost burst with joy. 

It was back to work today. Trying to catch up on the posts. 

Much love to all.

~susan