February 2012 MX

DebbieOS

Hi Everyone,

It sounds like everyone is doing better...wonderful!!!  Hey, is anyone else out there experiencing massive hair loss with the aromitase inhibitors?  Man...I almost feel like I'm going through chemo with this amount of hair loss!!!!  It's ridiculous!!!  I guess I didn't realize that at age 57 I still had so much estrogen going through my veins that kept my hair relatively thick until now!  Oh well!

I watched "Forks over Knives" a while ago, and it definitely has good messages about eating healthy.  I also think it gives too much emphasis on how we can "control" our lives and get rid of cancer and all degenerative diseases.  My father-in-law is 92 and eats meat...lots and lots of it...every day.  He's as healthy as a horse.  My sister went vegan at age 16...got breast cancer at 26.  My mom didn't get breast cancer until she was 64....after years of lots of alcohol, smoking, hormone replacement therapy, and unhealthy eating.  Me- I get breast cancer at 57 after no smoking, almost no alcohol, no hormone replacement therapy and relatively healthy eating.  (Life's not fair!!!)  Not that I'm saying healthy eating isn't good for you...I just think we all want to "control" our health and our fate, yet most of it is already determined through our genes.  Again, diabetes 2, obviously can be greatly reduced by healthy eating.  Arthritis...can be helped through a lower body weight.  But, hey, we're all living longer than our ancestors...many of whom died due to "female illness" many years ago.  It just wasn't documented as cancer.  The reason more people develop cancer or other later illnesses is that we're all living much longer.  Anyhow, I'll get off my soapbox and just say that I wish that we could have more control over our illnesses and ultimately, our lives.  But, my sense is...is that it's all a crapshoot.  We're in Vegas, just spinning that roulette wheel, and we, unfortunately, landed on the "cancer" number during the months of Dec, Jan, or Feb.  The good news......we all have a whole new chance at the "good life" number...just like anyone else! 

Now, enough of my proselytizing......Gads, maybe I'll blame it on the cancer....

Hugs to all,

Debbie 

mary625

Hi, all! Just checking in. Since I did not have recon, I don't have as much going on as some of you. I finished radiation on 4/26. I finally healed from the skin necrosis on my prophylactic side on 5/6, 3 months to the day after surgery. I then had some healing to do from radiation. Between the 2 healing processes, there is a lot of skin discoloration and some keloid scarring. I don't think it will be worth having recon with that type of skin.



I finally was healed enough to go to Nordstrom's and get my silicone foobs. I've been wearing micro bead and foam foobs bought online. I also got 2 mastectomy bras and 5 'off the rack" bras paid for by insurance. I am waiting on swim foobs and for the 5 regular bras to be sent to me after having pockets added. It was fun.



I am adjusting pretty well to Femara which I've been on since about March 12. My MO says that worst SEs are in months 3-6, so they may still be to come. My leg stiffness is much better now that I am exercising daily. I swear it is giving me carpal tunnel though none of my doctors wants to agree with that. I am in severe carpal tunnel pain nearly every night.



I'm so glad that everyone is doing well no matter what course they are on now. Having you guys was so helpful to me!

Deborah2012

Farmerlucydaisy,

 How did you find temporary nipple tattoos on line?  How readily do they come off if one doesn't like them?  Do they come in various tones (I'd need it to "match" Ms. Goody nippled? Are they inexpensive?  How well healed does a scar need to be before applying one? Would you recommend them?  Any downsides?  Difficult to apply or align properly?

What brand did you use etc.  Otherwise I'll just google temporary nipple tattoos.

 Hope you are in feeling better.

Hugs.

Deborah

mma59

As soon as I was diagnosed, my son made me watch "Forks over Knives".  I too always ate fairly healthy (not too much meat, sugar, etc).  I am trying to eat even healthier now but then again I have a sister-in-law who weighs about 300 lbs, eats terrible, smokes and drinks and I'm the one who gets cancer so I kind of agree with Debbie.  It's good to eat healthy for a lot of reasons but like one of my nurses told me, "Vegetarians get breast cancer too" so let's not be too hard on ourselves if we occasionally don't eat great! 

Hope everyone has a great day!

Dixiemine30

I'm BACK!!  Whoohoo!!  Exchange went well.....I ended up with 2 drains so I wasn't all smiles and giggles when i woke up.  Overall the exhange was a breeze.  If it weren't for these blasted drains, I'd be up and running today.  Only need pain meds monday afternoon and Tuesday morning, exchange was Monday at 1:00.  Still in the sports bra and have to stay in it non stop for a week.  Even with this bra on it feels less bra-like than I did braless with the TE.  LOL...that previous statement would only make sense in this world.  What a relief. :-)  FFF Rocks!!  Back to work, just wanted to check in...back tonight.

Wren44

No recon here, so doing fine. I managed to fall on my face Tues, ruining my fairly new glasses and giving myself a black eye. Just came from the eye doctor today. If I have to get new lens they may as well be for the way my eyes are now. I was so looking forward to a month without a medical bill. Grrr.

DebbieOS

Hi mma59-  Yeah, I guess what bugs is the attitude from some individuals who don't have cancer themselves is that we "caused" our cancer by eating that ice cream cone...or by having that steak on our anniversary.  No we didn't.  Sh** happens, and it just happened to happen to us. 

Wren44- you gotta have a ball with the "explanations" for your black eye!  Don't tell anyone else that you fell on your face....make up a good story for massive sympathy!!!! 

And, Deborah, as always, it was great talking with you yesterday!  You really have to patent your foob lingerie...talk to you again soon!

Hugs, Deb

Deborah2012

Hey there FFF's,

glad to get the scoop on the sisters.

Dixiemine, weeeee! Yeah, I had a drain too. Kinda ruined some of the joy. I'm envious. My PS wants me in a sports compression type. Ra for a month! I hate it! The rest of me gets tension too. I'm getting soreness in healthy areas from it. My upper back, ribs shoulders etc.



DebbieOs I'll call you this

weekend. Visiting the kids Friday & Saturday. No wonder I just adore you- I loved your advice to Wren.

Smiles to all.

Dixiemine30

Deborah -- I'm sure I'll be in the sports bra 24/7 for longer than a week.  He just told me that until my next appointment.  The man has learned to "work" me. Scary stuff.

Hubby and I took the drains out tonight.  They had drained 13 the last 2 days and I was sick of them!!  PS said he would take them out on Friday (low output) so I wouldn't have the holiday weekend with them....and he said hubby could take them out (he's a first responder).  I am doing the happy dance!!!

I did sneak a peak tonight and I'm not sure how I "feel" about them yet.  I will say that I'm glad they are no longer SQUARE and at opposite poles but other than that, I'm just kinda sick of them.  Does that make any sense?  Maybe I need sleep..and things will look better tomorrow.

Dixiemine30

OH....but even this sports bra feels so much less binding than going braless with the coconut girls.  I admired their projection but really sick of trying to sleep on coconuts.  I know at some point I'm going to miss them, I'm twisted like that.  Goodnight my sweet, FFF sisters.  Be well.....

Nel138281

Morning all

Wren44 , hope the black eye goes away soon.  Even small stuff , so unneeded now. 

Mary625, finally going for my real foobs this weekend.  I have been using the pillow puff since surgery.  Time to move on.  Kind of looking forward to it and need to take care of the bathing suit thing as well

Dixiemine30, Glad surgery is over and you are doing well. 

Generally all quiet here, no recon , chemo over and just trying to move forward

I hope all have the weekend you wish for.

Genlte day,

nel

Alicethecat

Hello ladies

So pleased to see that many of you are getting through your reconstructions with humour, determination and grace!

I'm one of the members of the February 2012 MX whose breast cancer tested positive for HER2+, like Nel, so the whole caboodle is being thrown at it - surgery, chemotherapy, immunotherapy and radiotherapy.

Your posts regarding reconstruction are so helpful. Thank you. I know what to expect.

In the meantime, if any of you find that your treatment plan does include chemotherapy, please rest assured that the docs seem to have got it covered now.

Everyone is different, of course, but I haven't experienced any sickness or nausea - just a bit of neturopenic sepsis (treated efficiently with IV antibiotics for two days in hospital) - and constipation and tiredness.

It is very doable. In fact, I've finished 4 x FEC and start Taxotere in two weeks, Taxotere and Herceptin, and then rads.

I second the lady who said that Deborah2012 should write a book about her experiences with breast cancer - she is a very funny poster!

Best wishes

Alice

Galsal

I'm up for good thoughts that I pass all the various pre-ops for reconstruction.  Will be having a Diep if all goes well.  A bit trepdatious about this since there isn't a wealth of experience by the team.  As some one said to me though...ever well-experienced PS had to have some early cases along the way.  Plus, if they mess it up they've got to fix it.  I'm going through the same VA hospital that dx'd the BC and did the BMX. 

Pre-op and Surgery scheduled -

June 20 - Cardiology

June 26 - pre-op, an all day affair

July 2 - CT scan of arteries

July 9 - Diep surgery

Deborah2012

Hey there Galsal, sooo you get to be a pioneer for the FFF's with DIEP.  Keep us a-foobed of developments as we are all a bit short to keep abreast.

Did anyone see on NBC nightly news tonight June 1, 2012?  Robert Bazell did a story on breast cancer breakthrough.  Duke Cancer Institute had success with an anti-body drug (conjugate?) called TDMI.  It delivers the cancer killing agent without destroying the good cells and so the side effects are nothing like chemo at all.  The testimonial patient was a 47 yr. old advanced stage breast cancer patient. I think the patient may have been Stage 4?  Her cancer had returned a year after chemo.  She looked terrific- like somebody needed to shoot her with a Valium dart.  I wish I had her energy!  

She was likely Her2+ because she had been treated with Herceptin. This delivery method /development has potentially positive implications for other cancers as well. I was finally able to locate the 2 minute video on the NBC website.  Here's hoping some of our Her2+ and Stage 4 sisters might benefit from the story.

Alicethecat, please check out the story.  Must you  personally consumer test every possible breast cancer treatment?  Check in with us FFFs even if you are on other threads if you're able.

Dixiemine- I am going out bra shopping this weekend.  PS said I could buy whatever kind I wanted. The dynamic duo will be ducking into a dressing room and hopefully emerging in superhero garb.  Peace, justice, and the  American way!

You might be a breast cancer patient if when Batman said he was" just putting a flower decal on the batmobile" you are reminded to purchase petals nipple covers for your big bra shopping episode post reconstruction.

XOXO

Deborah

DebbieOS

Hey Deb-  Here's the url for the information:  http://video.msnbc.msn.com/nightly-news/47660773/#47653323

Interesting...esp for anyone who needs chemo!

Big hugs to all,  Debbie

Deborah2012

Hi Deb,

Thanks for the tech help.  Now, I'm hoping that Duke Cancer Institute and the physician are a reputable lot.

Hugs and smiles to the FFFs.

Deborah 2012

Deborah2012

Hi All. Actually the Stage 4 breast cancer lady was not the web site story I got when I clicked on Deb's link. That one was good, too. Just google Robert Bazell June 1, 2012 NBC . The story is Targeted Tumor magic bullet. T-DMI Dr. Kimberley Blackwell. The video clip is the blond lady with her kids. Maybe you can see it on Deb's link, too? I just didn't see it.

DebbieOS

Hi Deb,

I just clicked the link under my post and I do get the 47 year old blond gal (British accent) with the kids.  And, yes, it's talking about the "magic bullet" too.  I wonder why you can't see it when you click it.....?  What do you see when you do?  What is the article?

Hugs, Deb

Deborah2012

Hey there Deb, what I get is a video of another cancer advance with a kidney cancer patient and non- BC patients. That topic is one's own white blood cells being utilized. It has seated white coat personnel as the opening shot.



The BC story has the British woman as you've described. Believe me if it's tech I can mess it up. I sent you a PM

DebbieOS

That's bizarre!  But, another friend and I had the exact same url (exactly the same!) and had different information on it, so it can happen!  Oh well......

Galsal

"a-foobed"....LOVE it.  teehee

DebbieOS

Hey, FFF's...just saw another new news re: breast ca prognostic blood test...it can tell whether one's breast ca is likely to return.  Here's the online article:  http://today.msnbc.msn.com/id/26184891/vp/45130830#47697479  Interesting!!!!!

Galsal

Good article to view...wonder how long it will take to be put into use though.

Deborah2012

Hi there Fab Febbie Females,

Glad to see everyone is returning to normalcy. 

DebbieOs and I are going to meet again next weekend.  We'll send good vibes to all our FFF's. 

Is anyone having weird skin growth stuff happening?  I started growing warts and lesions at my hairline and another wart on my toe.  This started after reconstruction (about a month into my Anastrozole).  Now I see three tiny little warts on my hip that weren't there before.  Dermo doc had the hairline one biopsied.  Aren't we all sick of B-I-O-P-S-I-E-S?  It came back benign- a keratosis jobbie. Whew!

You might be a breast cancer patient if when you have to accept breast cancer warts and all- you wonder if maybe one might grow in a useful location- like on your foob and form a nipple!    I'll bet Vinnie could fix that right up with a tattoo!  I'm talking real projection.

 Galsal, are you still on for July 9th? 

LLinAZ- How did your swap out go last week go?

Galsal

Thanks Deb.  Yes, still on for the 9th.  Passed chest xray, labs, ekg, cardiology....ct scan on 7/2 won't be under after the preop appt of the 26th.  Starting to get antsy in the anxious way.

I think the difference between this and the bmx is that the big cancer danger  and finding out about chemo is over. With that surgery, I cleaned and shopped and such all the time.  Of course, was sleeping like crap too.  This time, will clean and do enough shopping to get by.  This time it's not life-saving surgery in the true sense.

Will give an update soon.  Later!

DebbieOS

Hi Everyone!!!!

Yup, I'm sooo excited to get to see Deborah2012 again!  We have so much in common, it's amazing!   (Our kids are like clones of each other....)  The commonality extends to the skin issues, too, unfortunately.  I think one of the reasons Deb brought this up on this forum is that she knows that I have been diagnosed with my 2nd basal cell carcinoma in 6 months.  And, this time it's a biggy....on my face!!!!!  Good grief.  Never had a basal cell ca before 6 mos ago. Found out that my neighbor who had a BMX five years ago also had a basal cell CA on her face within several months of her surgery.  And Deb had the skin issue on her face.  Makes Deb and I wonder whether there is a connection.  Some web sites say no; some say there is a correlation.  So, anyhow, in case there is a connection, ladies, please check anything on your skin that you have any questions about.  My two basal cells were found by me...not by my dermatologist whom I see regularly every 6 months.

 Well, I hope everyone is doing well...moving on with their lives.

BIG HUGS for you all,

Debbie

Wren44

I had a basal cell years ago, so I will keep close watch on my skin. There are a few funny looking places, but I think more age related than cancer. I plan to ask my doc if Retinol would help with the thickened places.

Dixiemine30

Hi FFF sisters...just checking in.  I'm 5 weeks out from exchange tomorrow and feel good.  I've had right foob cramps the last couple of days....other than that, I'm doing okay.  Working too much, eating too much but NOT smoking.  Haven't had even one puff in 6 weeks!!!  Still want one every day   My sister's college roommate had a BMX on Thursday....I wish there was something more I could do for her.  She wasn't able to immediate reconstruct and she's really bummed about that.  FYI-she's getting around way better than I did with TEs.  I think the TE are the problem with pain soreness post BMX.

Anyway...jsut wanted to say that I miss our daily talks.  Love & Hugs!!

DebbieOS

HUGE CONGRATS on the stopping smoking, dixiemine!!!!!!!  What a feat!!!!!   I don't know what you did to help the cravings...but ya know how there are nicotine patches?  I need a sugar or cookie patch!!!!!!!!  I've been eating like there's no tomorrow!!!!!!  Lordy!!!!  

Galsal

Pre-Op was successful and all is a Green Light!