February 2012 MX

Deborah2012

Hi FFF's,

I've been doing a happy dance over here about DebbieOs.  I still can't figure out what lexicon they are using for the mystery migrating nipple she had grown.  DebbieOs cracks me up.  She told me "you know how people have phantom limbs after amputation"?  "Well, I'm growing a phanatom nipple."  I just adore ya, Deb!

My son about had a fit on my butt because I had delyaed the Zometa foir the bone density.  He's helping me research it to see if I should do that instead of Boniva.

Take care All,

xoxox smiles and hugs

DebbieOS

I just adore ya, too, Deb!  Hey, give me a call....I want to hear all about your Hawaii trip!

Alicethecat

Hello Deborah2012

Good to see you posting.

So handy to have a son who is to be an onc in training!

Best wishes

Alice

Nurse_Lizzie

Today is my one year cancerversary! I wish I'd known my Feb 2012 sisters then. I remember feeling lost and alone. But wow what a difference a year makes!

Deborah2012

Hi Nurse Lizzie,

Agreed.  A year later makes all the difference.  I see that you were triple negative- an extra hard row to hoe.  Glad it was caught DCIS.  How did it get detected so early? Routine? Family history vigilance? 

I'm guessing our first year is the toughest as we all adjust to our therapies and long-term prevention plans. 

Congratulations on being a survivor with year one under your belt!

Deborah2012

Hi Alice the Cat,

I'm reaping the benefits of my future onc son.  As he is accustomed to reading scientific papers and reducing them to dumbed-down comprehension for me, I gave him the task of researching the osteoporosis drug dilemma I am facing. 

He assembled a synopsis of the relevant literature.  He thinks that I really need to be concerned with the osteoporosis with a T-score of -2.3 (-2.5 is the cut-off).  He naturally told me to discuss this with my onc.  Bottom line, is he thinks I should have the Zometa injection. 

The literature made him think I'd have more problems with osteoporosis (and likely in my case) than the remote chance of the bad jaw bone death (ONJ).  I didn't have advanced breast cancer.  It hadn't any metasteses.  Node negative. I'm not going to be taking it monthly etc. 

He said over time that the osteoporsis caused from the estrogen suppressor could very negatively affect my quality of life- fractures (and all that entails when aged and frail), permanent stooping/hunched posture etc. He admonished me to deal with this.  Additionally, the stop-gap choice I made while tying to figure out what to do-taking a monthly Boniva pill- also has some remote risk of the ONJ.  He said I should confer with my dentist and maintain good oral health as well.  Apparently, poor oral health was a variable in ONJ side effect patients.

I'll set up the appointments in the coming weeks.

He did his "good son" job.  He condensed the literature, then told me to make the decision with the professionals as he is not an M.D.(yet).  Debbie Os son (in med school) did the same for her on her "phantom nipple" episode.  It is a bonus.  We deserve it.  I consider it a "tip" for good service during the wonderful teen-age years we all go through of raising kids! And we had "easy" times of it in comparison.  Still- they owe us big time!

Nurse_Lizzie

Deborah2012 - I was so lucky my DCIS was found on routine mammo. I had absolutely no reason to be suspicious or worried; no unusual lumps, bumps, dimples, pain, or discharge. I remember nearly blowing off my appointment! So glad my "inner good girl" made me keep my appointment.

Lizzie

PeggySull

Nurse Lizzie, Same here. I'm tnbc and my tumors can be imaged but not felt. Routine mammogram caught it fairly early but not as early as you.



Congratulations on your year!



Peggy

mma59

I have swelling in my hand on the side that I had ALND.  I think my arm is ok.  My knuckle and hand is a little sore.  Maybe it is arthritis.  Wondering if anyone had this and if I should call my lymphedema therapist.  Hope it doesn't stay this way.

Wren44

Yes, call the lymphedema therapist. Don't take any chances. I hope it isn't, but if it is, the sooner you're treated the better.

Deborah2012

mma59,

I concur with Wren44. 

Seriously, we should be past having to worry about if our doctors think that we might be concerned about something unnecessarily.  Say, I'd like to rule out any breast cancer related lymphadema or long term treatment SEs.  I'm pretty sure it's un-related, but I's bothersome and I'd like to get it checked. Take a photo or two to show any changes prior to your appointment.

Let us know what happens.

My Fab febbies, I should have a nice surpirse to share with all of you in about 3 months if things go well.  Stay tuned.

Miss you all. I frequently think of all of you over a year later.  Anytime I learn of anyone being diagnosed, I tell them or the person passing on the information, to have the woman go to breastcancer.org.  I share how wonderful the February 2012 MX/BMX ladies have been. 

Deborah

mma59

Went to physical therapist and she measured by hand and said there was some swelling so she sent me to a breast surgeon who is a lymphedema specialist.  He did a test that measures the fluid in your arm (which is not covered by most insurance) and said it was not lymphedema.  Which is great!  Not sure what the swelling is though.  It's not bad (gets worse at times).  I guess I'll have to talk to PC but I am just sick of going to doctors.  I'm waiting a while.  The specialist told me to where the garment when I work, exercise, etc to keep from getting lymphedema but I don't have to wear it 24 hours a day!  Yay!

Deborah2012

Hi mma59,

Glad to hear you don't have lymphedema How long into the future (as in all your life?) will you be wearing a garment to prevent lymphedema?  It doesn't seem fair if there isn't some statue of limitation that after a year after your MX you're done with a specialty garment to prevent Lymphedema. 

Is wearing the garment a new thing or you had been occassionaly wearing one already?

Take care.

Deborah

mma59

Deb, for the rest of my life when I exercise, etc.  Also have to be careful that a cut or mosquito bite on that arm does not get infected.  Have to get antibiotic right away if I ever see redness.  This is due to removing all my lymph nodes on that side not the mastectomy.  It is a lifetime thing either trying to prevent it or dealing with it once you get it.  I had been wearing it when I went for a long walk or did heavy cleaning, etc. 

Deborah2012

mma59,

What a disappointment.  DebbieOs and I are in touch on a regular basis.  Over the course of the year post our MX's whenever we have SE's that present themselves, our common refrain upon sharing with each other is: "Oh, and we have the good kind of BC" (ER+).

I didn't realize by your Dx that ALL of your LN's were removed on your MX side.  I just saw the 1/31 was not clear, but didn't realize they all were taken. 

Continue being a "good girl" and dutifully wear your prevention LE garment when recommended. 

Deborah

DebbieOS

Hi mma59 and other Feb MX'rs,

Mma59- so sorry to hear what you're going through!  What a pain in the butt!

Other Feb 2012 MX'rs- have to tell you what I recently found out after being on Aromasin (exemestane) since last year....(Deborah2012 already has heard this....)  My eye pressure has gone way up due to the Aromasin and I am now at high risk for glaucoma!  I hadn't heard of this side effect from AI's until recently. So.....make sure to see your ophthalmologist if you're on an AI!  They will put you on preventive eye drops to prevent the pressure from going even higher in order to make sure you don't go blind!

Take care, all!

Debbie

Deborah2012

Holiday greetings Fab Febbies, Merry Christmas, belated Thanksukkah etc,

This is a lousy time of year for me due to the insurance timing of my annual mammogram.  last year, I wasn't concerned.  This year I was very nervous.  I've a terrible year of side effects from Anastrozole.  Naturally, I feared that if I were to have a reoccurrence, the "cure" "prevention" would be a possibly intolerable choice for me.  I am happy to report that my annual mammo came back with "see ya next year"! 

I have an appointment with my onc on 12-30-13.  She told me to stop taking Anastrozole immediately and she doesn't even know of ALL the bad side effects I'm experiencing.  I've been on Anastrozole since first week of May 2012 with NO interruption.  For the record, I have been on Venlafaxine, to temper the "speed/anxiety" (hot flashes etc.) SE of Anastrozole for a long time.  I say this because my onc will inform me what to do.  It is possible, (although unlikely) that she may say the Venlafaxine is the culprit.  the fact that she ceased the Anastrozole until I see her seems to point to the below SEs are Anastrozole related rather than Venlafaxine.  Okay.  That is my truth in advertising disclaimer statement.

I have osteoporosis.  I had an IV bag of Reclast last year and must take calcium supplements.  Frankly, if you're taking AI's you better be discussing calcium supplements with your oncs.

I next developed very high cholesterol.  239.  My GP is considering putting me on meds.  My onc doesn't know of this yet.  I am 5'8" tall weigh 135 pounds and eat ultra healthy.  For example, I rarely EVER have butter, all low portion sizes of olive oil, tons of vegs etc.  I'm a good girl who doesn't even eat fast food blah, blah, blah.

I now am being treated (for the rest of my life, BTW) for glaucoma.  My annual visit to my optometrist showed I have high eye pressure.  If you have to have something, glaucoma is not bad like everything else if diagnosed EARLY (which mine was).  You drip one drop of a clear solution into each affected eye (me- that's both) daily for the rest of your life.  It prevents (not just treats) loss of peripheral vision and eventual automatic blindness.

I have almost daily multiple bloody nosebleeds.  This is a problem at work.  Interacting with public, I suddenly am bleeding out of my nose, staff luncheons, I get a bloody nose.  Sometimes, they are very brief.  Other times, a real time sink and annoyance.  

I as the other AI ladies have the joint pain.

I am a research subject in a cognitive function study at a major university on the west coast.  I really wanted to do super well sos that women who as myself had the "GOOD" kind of breast cancer (hormone receptive) would do very well on AIs.  I always gave it my best shot.  I also am very upbeat, engaged, experiencing a Renaissance of creativity post breast cancer and am thrilled about life!  However, I have lost vocabulary, mental acuity (speed of responding) etc.   in my everyday comings and goings.  For example, the first adjective that comes to mind in a verbal conversation may have 4 syllables.  It flies into my head, but doesn't come out my mouth.  I realize that the listener is waiting for my response.  So, to compensate, I quickly revert to a 2 syllable word instead because for the life of me, I can't recover the lost word in a timely fashion.  I am still intelligent, with it etc.  I just DON'T function as quickly nor am able to recall super short time span mental thoughts.  For example, I walk into a room and can't recall WTH is the reason I'm in that room.  The difference is that post BC/Anastrozole- the frequency of this occurrence is scary.  When DebbieOs and I talk on the phone, it's hilarious. We sound like some game show.  She'll say something, forget the name of the person, event or whatever, then start describing what it is she wants to convey in long sentences.  I then guess at what it is she is referring to.  When I guess, then we go to the bonus round.  I respond and lose my vocabulary/name whatever point, and she starts to guess what the heck I'm trying to communicate.  This is NOT like two hearing impaired people conversing.  This is like two brain cell deficient people trying to communicate.  It is a great comedy sketch.  We laugh our butts off.  I love her dearly.

Next steps:

On 12-30-13 when my onc has the cholesterol and good mammo 2013 information, she will decide from the below.  My son from MD PhD school will be with me. He's on break: Do I:

1. Stop all AI's because I'm a lousy hormonal therapy candidate- the side effects are worse than my chances of recurrence?

2. Substitute another AI (Debbie O's has said she doesn't have bleeding with Estremesane(sp?)).

3. Resume Anastrozole because that's life post BC. Deal with it?.

4. Other?

I am nervous to try another AI after 19 months on Anastrozole.  With my luck, I will maximize all potential crappy SEs from a NEW AI that has SE's that  didn't overlap with the previous one, Anastrozole.

How are the rest of the Fab Febbies doing this far out from our MX/BMX's? Updates please.

BTW,  I am aware of the latest news on how MARVELOUS Anastrozole is supposed to be for high risk BC women as a preventive treatment BEFORE they get diagnosed with BC.  Beware ladies.  You could be trading, high cholesterol, glaucoma, osteoporosis, cognitive function loss, joint pain and uber heightened menepause symptoms!  I need a Vegas odds maker or statistician to do a risk assessment on me and odds!

XOXO

Deborah 2012

farmerlucy

Hello my Feb 2012 sisters - I'm not sure I updated here since I fell into the black well of despair in April, 2012. Seems that the surprise IDC was too much for me to handle emotionally. Since then I learned that PTSD - like symptoms are quite common in us BC ladies. I struggled through last summer. Once I had my exchange and got on a good antidepressant things started to turn around. I started Tamoxifen about a year late, but oh well we can only do what we can do. 

Fast forward to now and I have to say that all the struggle was a good thing for me. Who knew I had so many BC issues to work out. My life is really great now. I still think about BC a lot, but it is not really scary anymore. One of my new life's missions is to pay forward all the help I was blessed with during my trials. I now scour BCO on the lookout for women who may be heading towards the black well, and I try to at least make them aware of what may be happening. I also trained to become a Congregational Care Minister at our church, so I can be there when other women in and around our church get the dreaded call. I am currently visiting a stage 4 lady who is in a nursing home. I thought her struggles might scare me, but instead I am blessed to know her, to see her bravery, her humor.  My heart does break for her though. 

My DIL just tested for the BRCA 1 mutation. Her mom is pos and a 17 yr survivor.  We are all praying for a neg, not only for her but for the two little granddaughters. 

We're having an ice storm here in Oklahoma. Honestly, if it isn't a tornado, wildfire, drought, flood, it's an ice storm. I guess it keeps things exciting.

Take care everyone and have a wonderful 2014!

cocok

I had the 2nd exchange surgery on Jan 9, developed a hematoma in the fat grafting area in upper pole, which was drained under local anesthetic on Jan 13. Hematoma came back and PS took the implant out on Jan 16, irrigated the area, and drained it while I was under light sedation.  Took massive antibiotics for a week to prevent an infection.  I thought my implant would feel better than it does by now. Chest is still tight. Pec muscle is really messed up (in spite of constant physical therapy). I understand that this is a long process, and each person's journey is different, but how long does it take typically for the implant to feel and look better?  I'm really just about to give up hope for a good outcome.

Hope you are all coping well..

Nel138281

Hi All,

I was thinking about 2 years ago this month and how far we all have come.  We may have had more bumps and bruises, but we remain.

Best to all

Nel

farmerlucy

Can't wait to be in year three! Two years ago I didn't think I'd be here in a year. Funny what fear does. Thanks for the reminder Nel.  Hugs to all.

Wren44

Still doing OK on anastrasole. My bone density has declined, but not dramatically. Waiting for results of this year's mammo. I'm not expecting anything to be wrong, but there's always that little nagging thought.

Deborah2012

Dearest Fab Febbies, 

Nel, our founder, farmerlucy, and wren44,

So happy to read your posts!  I always learn something new and am reminded of our special affinity from our journeys in 2012. 

I am going to see DebbieOs this next week when I'm in her vicinity due to a biz trip.  I miss hearing from you all.  I think about you more than you know.  It's a good feeling to see how far we've come.  It's so wonderful to see the kindness and concern that you share with others as you progress in your individual healing paths.

I will have more to write in the next couple of months.  I'm working very hard on a worthy project.  Stay tuned....

XOXO's Deborah 2012 

Deborah2012

Alicethecat, FarmerLucy, Nel, Wren44, Janice415 and Galsal, please private message me.  I have something to share.

Deborah

Deborah2012

Hello my Fab Febbies, Well it's been over a year in development, but I have a utility patent and two of my products are now sold in Breastcancer.org's shop. Go to the "Shop" tab on the top tool bar, select "Treatment" and see my "Mom Has Breast Cancer Gift" & "Mastectomy Gift". I wished I had had these medical grade products available for us when we were all going through our surgeries etc. At least those who come after us may benefit. Breastcancer.org has always been a rock for me when adrift. Please spread the word to others so that they may improve their respective breast cancer journeys- especially any surgery women. My other products cover different phases of our treatments after surgery. Enjoy my "lemonade" from the "lemons" of breast cancer! Please spread the word in other forums to help our fellow BC sisters that there is something new for us- before, during, and post breast cancer. Hugs to all my Fab Febbies!

Deborah2012

Nel138281

Just stopping by as we approach our 3rd anniversary.  Seems like only yesterday, and seems like years and years ago.  

How is everyone doing?   

I was dx with mets to adrenal gland in August 2013, went back into treatment and have been NED since October 2013.  Feel well and doing well.

farmerlucy

Hi Nel, our fearless leader. Thanks for checking in. So sorry about your progression. How did you discover it?

I'm doing well. The terror of three years ago has gone away for the most part. Still second guessing these implants.

Hope to hear from the rest of our Feb 2012 sisters!

Deborah2012

Oh Nel dear- our brave seed that helped us all to bloom,

I'm distressed to learn of your mets. So hoping that your days are filled with love and peace. Thank you for checking in. You're a star!

farmerlucy, I can't believe it's been 3 years either. Although as Nel said, it feels like eons ago.

Alright Fab Febbies, I want to send a free sample of my invention (that was born from you all being there for me 3 years ago). Please Just private message me and I'll handle it. It will make you smile. I have sentiment ribbons for those on our thread who did not have reconstruction, those who did, those that have moved past BC, and those who are still dealing with the SEs, additional treatments etc. It would give me great joy as a personal thank you to my Fab Febbie sisters. I donated my products to the local Cancer Resource Center for 8 BC women who had been research subjects. They received my "Research Subject Ribbon Message group". Those ladies need recognition and appreciation. After all, who else can we blame for all the lousy SEs from the meds developed from their service! Just kidding! (I'm a research subject myself). We all know SEs are part of the deal on the way to recovery and combatting the disease.

DebbieOs and I are still close. She was probably the best thing that came out of this disease. Thank you, Nel for starting our thread. I'm doing well.

Take care.

Hugs and smiles to the Fab Febbies.

Deborah 2012

Nel138281

Thank you for the positive thoughts.  It was found on the one CT scan I insisted on when I had finished treatment. Found in August 13 and gone by October 13.  Tykerb pills at home every evening, Herceptin every 3 weeks.  Minimal SE's   some fatigue, diarrhea that is about it. No hair loss, so most who know me don't even know. Still working and living my life.  My onc is thinking I will go beyond the 3-5 year stats and be here 10-15 years from now.  He is even talking about (at my instance) tykerb vacations - all part of the receipe for this med  So not where I wanted to be, but where I am and doing well

farmerlucy

That is pretty amazing! Gone two month later - wow. It feels like history is in the making with some of the NED stories. Here's hoping it has moved into the "chronic" category for many. Hugs!