Starting Chemo in December 2013

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited September 2014

    mikesgirl. Glad your surgery went well. Hopefully the last one 

    NEskir. Your Pom is adorable. I thought mine was not eating well because she wash picking up on my stress through chemo etc.  Poor thing was going through her own cancer.  She is my empty nest dog. I got her just before my youngest son went off to college. 

    Lisa now you need a Harley to go with the new look. 

    Holli your daughter looks so cute for her first day of  "school".  Get better so you can be the best teacher for your kids. 

  • oranje_mama
    oranje_mama Member Posts: 260
    edited September 2014

    Barbara, so sorry to hear about your dog!  What is up with so much cancer - in us, in our pets ?!!!

    Mikesgirl, hope your recovery is going well!

    I still haven't done anythign about my nose.  I've got presentations to the Board tomorrow, and (vanity here) didn't want to deal with my nose before I'm done with that!  Bad enough that I've got next to no hair.  There is literally nothing to see on my nose since the tiny bump was scraped off for the biopsy.  For the topical chemo, the PA was telling me I didn't need an office appointment but I was like, yes I do, since I have no idea where I need to put the cream!  Can't see a thing.  Over my whole nose?  The doc is recommending the cream over Mohs surgergy (scraping) but I've yet to actually discuss the WHY with him.  I had a little bit of that shocked/unprepared thing when he called to tell me that it was cancerous.

    So, warning, rant coming: I clicked on one of the highlighted articles here on Breastcancer.org, and it has me pretty annoyed.  Link is here:

    http://www.newsworks.org/index.php/local/item/68133-how-one-breast-oncologist-faced-her-own-breast-cancer-diagnosis - quote from the article below:

    "The truth is," Weiss says, "Only 10 percent of breast cancer cases are due to rare genes like BRCA1 or BRCA2. The remaining 90 percent of breast cancer cases are mostly related to how one leads their life."

    Now, I'm hoping/thinking that Dr. Weiss was misquoted/taken out of context.  Because my MO has said flat-out to me: "I don't know why you have BC."  (FWIW, my MO's theory is that probably I do have some gene combination that makes me susceptible - that scientists haven't identified yet -  and that something happens to "unlock" those genes, like a virus, for instance.) 

    The reason that I hate not understanding why I got BC in the first place is that I don't know what to do to make sure it doesn't come back or that I don't get it again.  I'd really love to know what it was in "how I lead my life" that caused me to get BC.  For me, this is the hardest part of the freaking disease.  There are plenty of women who eat healthy, exercise, abstain entirely from alcohol, & still die of this disease!  And plenty others who are overweight, couch potato lushes LOL ;) who never get this.  OK, rant over. 

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    Mikesgirl, glad your surgery is over and went well! 

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    Got my one yr mammo results back today. Good news!  No sign of BC, BUT I have dense breast tissue. I have been told that in the past, but was hoping that since I am almost 60 and have been post- meno for 10 yrs, that they would not be considered dense anymore. Anyway, will have an appt with RO and BS soon and get their take on it. What are you dense tissue ladies doing for follow ups? Wondering if I should ask for an MRI next time...? MRI's are so sensitive. I Hate BC!!! Why can't there be a simple answer for anything?

    done ranting...

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    Anyone heard of CESM imaging? 

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    Oh, have to share~had a great lunch with GS yesterday. He gave me a LOT of  hugs and said, "I'm glad you came, Grandma. I'll always be glad to see you. Even when I'm old, I'll be glad to see you. Even when I'm a teenager I'll be glad to see you!". Made my day:). 

  • DJJ
    DJJ Member Posts: 229
    edited September 2014

    Ornje, I really hope that was taken out of context.  My MO and BS and Nurse Navigator all said don't get your mind spinning to figure out why, cause nobody knows for sure.  I think maybe she meant in the context of how one lives their lives in what they are exposed to during the living.  In my case I was a Navy officer serving on a nuclear aircraft carrier....hmmmmmm.  or I eat to much chocolate and drink to much wine or I kayak and swim in the polluted Chesapeake Bay. Or you live by power lines or you drink milk with hormones in it or or or or..... the list goes on.  Sigh Scared

  • kjfromca
    kjfromca Member Posts: 283
    edited September 2014

    Hi ladies - Slacker Kim is back.  Just catching up on posts.  It is my youngest son's senior year of high school.  Last year I was missing in action regarding his school work.  He is having to do a lot of make up work and is seeing a psychiatrist for ADHD.  Every time I go to read and post, it seems like something comes up and then I don't get to it.... wondering who he gets it from?

    Mikesgirl - So glad to hear your surgery went well.   

    Barbara - Love the pic of you and your dog.  I agree with oranje, what is up with all this cancer?

    Lisa - You look great with your hair and I am glad to hear that your MRI came back clear.

    Oranje & DJJ - Who knows why we got cancer?  I think it has to do with all the toxins that we are exposed to and for whatever reason our good cells just didn't recognize the enemy.  Could be from a virus.  One would hope that this doctor was misquoted because she is going to piss a lot of women off.

    Keepthefaith - Love what your grandson said to you.... priceless.    I would rotate MRI's and 3D mammos, as the regular mammos never caught my breast cancer due to dense breasts.   I am glad to hear that you had a clear mammo.

    Kim

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited September 2014

    Keepthefaith , my BS's plan is to do Mammo/ ultrasound  alt with MRI very 6 months since I have mod dense breast and the mammos missed it, I had them yearly for 19 years and still got dx with stage 3.  I had an MRI done in early May, to FU a spot on the other breast, which was a blood vessel, and have 1 year Mammo scheduled for Nov. 

    Wonderful news on your neg Mammo. 

  • SouthernBling
    SouthernBling Member Posts: 63
    edited September 2014

    Oranje_Mama, I read the article and I hope Weiss's comment was taken out of context too. I know I haven't been perfect, but I have done pretty well as far as maintaining a low BMI, exercising, eating fairly well, etc. I asked my MO if it could have been my working environment. I've always worked in an office environment but at my last and current job, I have been exposed to mold among other yucky things (old buildings). I worked on a military base for eight years in old buildings there too. The MO said we really don't know what triggers it in most cases, and the RO that I consulted with in case I went the lumpectomy said it was "lightning". Stinks either way!!!

    As far as dense breasts, I still wonder every day if the radiologists were paying more attention, that this would have been caught earlier. Can't imagine that I would find a 1.9 cm lump overnight after years of clean mammograms. I switched imaging centers as soon as I found my lump, and they found the lump immediately. I know not to dwell on the "what ifs" but I still find it difficult not to do so. Hope you guys are better at that than I am.

    Sorry I haven't been around for a while, but I've been reading every day. I lost my mother-in-law who was more like my mom on August 16th, and I have been devastated. This was my son's last surviving grandparent so it's been a little tough on him. After dealing with my breast cancer, he has to deal with the loss of his Nana. Good thing he's stronger than his mom!

    On a happier note, I am scheduled for implant exchange on October 6th. Can I get an amen to getting rid of these concrete baseballs (or softballs)? Most of the time I am fine and have very little discomfort, but I was pretty small before and these feel like having cannons implanted under my skin. 

    Just want to say "thanks" for keeping up the posts. I really look forward to them, even if I don't contribute very often. You ladies are AWESOME!

    Keep smilin'...Keep shinin'...

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited September 2014

    Hi ladies.  Just catching up.  You all are amazing!  You make me laugh.  We are all over the place with our different situations and lives, but we are also totally connected by 1 thing.  BC.  At least something good comes out of this horrible situation.  Can you imagine what it would be like if we all were in a room together meeting face to face?  That would be something to see.  Thank you so much for the prayers and well wishes.  I feel totally loved and supported.  I am a little sore tonight.  I did too much yesterday and the incision started bleeding.  Luckily, it stopped because it's brown now and not red.  I thought I popped a stitch.  They put that awesome clear tape over it so I could see if it was getting worse.  Also, I was able to shower today because of it.  I love that stuff.  they didn't have it in 2008. 

    Lisa, you look pretty bad ass to me :)

    Oranje....My sister did the chemo cream to her whole face about 5 years ago.  If I was you, I think I'd have it scraped off and then do the cream.  That's just my opinion.  My sister had a horrible experience, but it was due to the fact it was her entire face. It was similar to the rad burns.  Just got bright red and it would peel when she'd rub it in.  A small spot on your nose should be very managable.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited September 2014

    Keepthefaith, so happy that your mammo came back with good results and your gs's comment was worth a million bucks.  Adorable!

  • SouthernBling
    SouthernBling Member Posts: 63
    edited September 2014

    I'm going to be brave and post a picture. This was taken in June, and I have a lot more hair now, but it is in that "pompadour" stage. I just wanted to show you guys why I am "SouthernBling". Those are my sweet Nana's roses in the background. We still water her flowers. I like to think she's looking down and is glad we are taking care of her flowers. I am the "proud Mama" of her maltipoo now. I should probably post his picture instead.

    image

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited September 2014

    welcome southernbling, where have you been. Sorry about your MIL. I had the sweetest MIL also. Passed away almost 2 yrs ago from Alzheimers. Damn diseases. You look so cute with your short dark straight hair. So pretty and adorable. NOthing to be brave about there! And its looking pretty thick. I still wish mine would have come in straight...and dark. Oh well curly and gray...embracing it with class!

    Mikesgirl, i know i think my face would hurt from laughing so much if we were together...(and pee my pants too lol!) Hope you continue to heal well.

    Crazywabbit DJJ and southernbling, I know what you mean about missing something. I had this benign looking cyst for almost 2 yrs before one rad decided to biopsy it to just make sure.  after 2 yrs and then TN but still only 1cm and no lymph node invlovment. TN is supposed to be aggressive so I had asked mo once wouldnt you have have thought it would have been bigger and lymph invlovement after this amt of time. She said ya probably but we never know how cancer is going to grow and progress. And what we think will happen sometimes doesnt and sometimes does. Not easy to grasp this concept but seems like we dont have much choice or control which I find the hardest. But pisses me off too. THe couch potatoe, smokers, overweight, lushes, red meat and candy bar eaters...sounds like a country song 

  • SouthernBling
    SouthernBling Member Posts: 63
    edited September 2014

    Thanks for the compliment Lisa, but I definitely have a pompadour going on right now. Thus the June picture. My hair is now getting curly like it was pre-chemo. It is also a lot darker than before, but at least it came back! You've inspired me to try to spike it. Maybe with my new moto jacket I will look like a bad a** Mama! Right now I feel like people who don't know I've been through chemo are thinking, "Did she have her cut like that on purpose?"

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    southernbling, great photo! My hair is doing the bushy thing right now. I have to wet it and put stuff on it to calm it down...then it is in super tight curls. So sorry to hear about the recent loss of your MIL. 

    Going to ask my BS and RO about U/S and MRI's. I am not a fan of MRI's...

    The CESM is a fairly new screening technology. Contrast Enhanced Spectral Mammogram. The procedure is done like a mammo, but with iodine injection.  Supposed to be a good option for dense tissue.  GE made it. It is supposed to be more accurate than MRI and less expensive and you don't have the noise and the tube, etc. I guess if you are allergic to iodine, it's not an option. The problem is, that is it not widely available yet...and, I'm sure the insurance companies and bureaucrats all have a say so in who gets it and when. I am going to ask my Dr's about it anyway. There is actually a clinical trial going on now through Sloan-Kettering, I think. I looked at locations online and  there are only 14 in the states ...at least those that would allow them to publish it online (per the disclosure). My BS did a PEM scan on me, so I am hoping she knows about it. 

    Happy Hump Day!!!

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited September 2014

    Hi girls.  I put mousse in my hair today.  This was the results.  Last chemo March 17.  No make up so these are the brows I have.  Had a great day.  Healing well.

    image

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited September 2014

    when I see all the faces of you girls I just smile. I feel like I know you so well. My heart swells from joy when we are doing well, having good days, fun days, looking great days, and my heart breaks when there is stress, worries and pain. You have enriched my life in a strange and different way that I never thought possible through an online support group. We are different ages, in different stages of life, live in varied places in the country from the big cities to small towns, have had different treatments but we are all bonded and connected. I often say when my husband asks what I'm doing on my ipad, "I'm just checking up on my girls" and he knows what I mean now. I'll be running on Saturday with each one of you in my heart, (and hopefully in my sneakers propelling me along!)

  • DJJ
    DJJ Member Posts: 229
    edited September 2014

    Lisa, you made me cry :-)  I feel the same.

    Mikes_girl, love the hair.

    Guess what????? I'm wearing mascara! I have long eyelashes! After losing them the end of July, A SECOND TIME! I would have never thought they would be so long already.  It must be the Latisse.  I can't stop looking at them.  I almost rear ended a car today because I was batting my eyes at myself in the rearview mirror!! 

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited September 2014

    Lisa, well said.  You are so positive:)  DJJ Congrats on the lashes!!! I need to share my findings on parabens with all of you.  I found out about them on Pinterest.  After finding out what they were I went through my medicine cabinet and they were in all my lotions.  They are in deodrant and even mouthwash.  I hope this helps all of you.  I'm switching all my brands for healthier choices.

    image

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited September 2014

    Lisa hope your run went well today. Amazing support out there from all of you.  Just wish we all lived closer to each other to meet up. 

    DJJ - Bat those long lashes but do it to the guys not the rear view mirror. 

    Mikesgirl, interesting but I suspect there are many things in our environment that can be linked, not just the one chemical. 

    Heading down to SE Pa next week (3 hour trip)  to start radiation for my dog, doing cyber knife RT to the urethra and bladder. Three treatments over 8 days. CT sim on Wed, then RT thurs, tue,  thurs.  Too bad I do not have insurance to cover it.  Still much cheaper then breast cancer RT.  Some places do IMRT but it is M-F for 4 weeks and I can not take off 4 weeks of work and stay in a hotel, since it would also be over 3 hours each way.  If she does well will follow up here with chemo. 

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited September 2014

    Crazywabbit, no doubt it's all sorts of different things in the environment, but if I can change brands to something healthier, that's what I'm going to do. I don't really want to start some platform for if it's actually cancer causing or not. I just want people to be aware of what they are and then they can chose what they want to do.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    Mikesgirl,  I have been using Toms' products for a couple of years with that in mind;  deodorant and tooth paste.  Neutrogena Naturals face products is not supposed to have parabens...I just started buying it;  and there is an organic shampoo that I use, also. Who knows if it will help, but if I have to use something anyway, I might as well try to use something that may not be as harmful! 

    Barbara, I hope your puppies' treatments go well and are beneficial. 

    DJJ, your comment made me laugh! I can see someone behind you getting aggravated! 

    Lisa, right back at you! Hope your run is fun!

    Getting some great rain showers in CTX today! whoo-hoo!

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited September 2014

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    Here's pics from my Susan G Komen run today. It was great. I did great. I ran almost the whole 5k. I came in 11th out of 33 survivors. My time was 32.42! Pretty awesome. It was a nice cool cloudy day so that was good. My legs ached, my muscles weak but one of the things I did to distract myself was to say all of your names in my head from the forums I follow. I would say, "we've been through harder things than this, I can do this and keep on running". It was good for my brain to try and think of everyone's name from the forums, while running, and with music in my ears. But at one point I had to turn off my music so I could think of all of you. I think I remembered everyone. Did you feel the energy? I was working my brain and body hard and it felt great. 

    Oh yea, they gave the survivors a pick cap with "survivor" on the back. It was a big "trucker" type cap that looked funny on me, with "short"  hair. My kids made me wear it backwards. They (and their young adult friends) said I looked "cool" like that. Don't know if I pulled it off but anyway, that's why it's backwards, like a rapper lol). Also got a pink survivor t shirt that I wore at the end for the survivor pic and other end of race pics)

     Here's my fb link for some more pictures.

    https://www.facebook.com/lisa.r.boyce

  • jbokland
    jbokland Member Posts: 890
    edited September 2014

    Lisa!   I'm so proud of you!!!   Running for all of us!

    I often think of what I did 'wrong' to cause the BC.  Maybe it's the bottles of water that I drank after they heated and then cooled in my car. ... Maybe it was something in my neighborhood.  ( 3 of us have BC)... Maybe it's my years if doing the Adkins Diet  when I wanted to drop some pounds.    

  • RHGSR
    RHGSR Member Posts: 774
    edited September 2014

    you look amazing Lisa!! Thank you for running for all of us !! What an honor to have you do that. 

    I've wondered too. No family history. Breast fed my babies. BRCA negative. I  am overweight. But there are lots of people overweight that don't get breast cancer. In spring 2011 I had been finished breast feeding my 2nd child for 8 months and had lost 30 pounds. I felt amazing. Then...Got pregnant  with #3....surprise !! My progesterone levels were low so my doc put me on progesterone injections and suppositories for 6 months.  After I gave birth , I was tired a lot. But chalked it up to gaining back those 30 pounds and having a new baby. But the summer of 2013 (I was still breast feeding #3) I experienced severe fatigue. Chalking it all up to just having too much on my plate... I was diagnosed Oct. 2013.

    I wonder... How long was this cancer dormant? Did the last pregnancy cause it? Set it off?  Who knows !! It's frustrating. 

  • jbokland
    jbokland Member Posts: 890
    edited September 2014

    I've had low vitamin D for years...,precursor or cause ?  Who knows.  

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited September 2014

    Lisa...What a great job! Very proud of you. I think if we were meant to get cancer there is nothing we could have done (or not done.) to avoid it. I don't think WE caused it. I just know that something in the world is causing it because it is an epidemic. No sense looking back and wondering if it's our fault. Moving forward with all the knowledge possible and doing the best we can is all we can really do. Have a great Sunday everyone. I am going to a house warming party that my best friend from high school is having. She was living in MA until just recently when she moved back to ME. Her husband fought colon cancer in 2008 until  finally passing in June 213. He was 35 when first diagnosed:/ She now lives and hour away. I haven't sen her since after having my second chemo.

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited September 2014

    thanks girls, it was fun but yesterday after getting home I thought oh no, I won't be able to walk tomorrow as my knees and feet hurt so bad. But took 2 aleve before bed and 2 Advil this morning and I'm not too bad. Even went to yoga this morning which was great for stretching and mind/body/breathing work. Beautiful, bright blue sky, cool crisp day here in central New York. 

    And yes I've felt "guilty" too. Although like you mikesgirl I know it's nothing I did, but still. Here's my background. Have been thin my whole life, no breast cancer in family history, ate healthy, minimal red meat (but loved my chocolate and ice cream) exercised, BRCA negative, good cholesterol levels, followed all doctors recommendations regarding screenings ...but did not breast feed my 2 kids...maybe if I did there would have been less chance...see what we do? I'm also Jewish of Eastern European descent which has increased incidence of TNBC, that I can't change. It's a crap shoot but it's hard to accept that sometimes. But brca neg. I want to have some control of preventing recurrence and hope I can but that's also a crap shoot, isnt it? 

  • RHGSR
    RHGSR Member Posts: 774
    edited September 2014

    Lisa- I did breastfeed 3 kids until the age of 2 (except #3 I had to wean at 18 months cause of the cancer) and I still got BC. 

    No rhyme or reason...

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