2013 Sister Warriors
Comments
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Cindy -- you always know the right things to say to calm someones nerves. thanks!
Ellie -- sorry you had to join us, but glad you found us here. We all remember the day we were diagnosed, and all the horrible feelings that go along with it. Check back in with us and I'm sure one of us can answer any questions or provide additional information and our experiences (so far) for you or we can bounce ideas off one another.
Julie -- thanks for being here with us and sharing your experience so far. Hopefully the SEs from chemo will lessen over the next few months so after you are done, it'll be a distant memory! Hang in there!
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Hey there new2bc-
Congrats on finishing Rads, yippee!
A few days ago you asked about my integrated approached to cancer...MO & ND & CNS.
Books reading:
The Cancer Nutrition Center Handbook by Carilyn Katzin. She is nutrition specialist at LCCC where my BC teams is and meets with patients to assist in their care...will assist in diet plan
Total Breast Health by Robin Keuneke
The Breast Cancer Survivors Fitness Plan by Carolyn Kaelin. (Harvard Medical School)
Anti cancer by David Servan Schreiber
Living Well Beyond Breast Cancer by Marisa Weiss and Ellen Weiss
Breast Cancer Husband by Marc Silver. This book was the 1st book I read after dx my RO team thinks its very good and now recommends.
I'm a Warrior! So giving this battle all...the Cancer Center here offers so many classes to help us that I'm overwhelmed and very blessed...to be able to consider a holistic approached to partner with my medical team...diet, exercise, meditation, massage, support, and PT...yes very gratefull:))
Best Wishes on this next step in your journey!
Cindy0 -
Yes--congrats new2bc for finishing rads! How are you doing?
Impressive reading list Cindy! You are motivating me to begin reading beyond information about dealing with initial treatment stuff. So feeling overloaded to process all this info though.
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Hey Renee,
Your such an inspiration and fierce warrior. How are you doing? Hoping you are done with tx...and just doing slow fills until that girl is perky and ready to exchange.
My lazy days in rads 15/33 have given way to reading and arming myself for the next 5 yr battle and beyond! Going to LIVE very well BEYOND cancer:)))
(((Hugs)))
Cindy0 -
Thanks for the compliment Cindy. Tomorrow should bring closure, or at least clarification of next steps for me. Getting another TE fill, meeting w/BS and then MO about chemo (yes/no); am assuming if they say no chemo it will be to get me started on tamoxifen. Will keep you all posted.
Just got the bill for my surgery (so grateful I have insurance!). $57,000+! And that's not the drs. part--that's operating room, and surgical supplies, etc. Wow. Do they pull these #s out of the air?!
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Renee~~Do you have a library card? They have an excellent book about Stephanie Spielman's courageous battle with BC. It's written by her husband Chris Spielman. He still works for BC research.
You can order on the library website. Its a good read. It even talks about the Stephanie Center.
Blessings
Paula0 -
I know this is probably sacreligious Paula (especially considering where we live!), but I don't think I can handle reading that, at least right now. It saddens me so that she lost her battle (Heather Pick too).
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Cindy, congrats on almost being halfway through the rads!
Renee-- agree with Cindy that you are an inspiration and am looking forward to your update after your doctor visits. I seem to be in a gray area on the chemo, but didn't get my Oncotype back yet. My oncologist won't tell me a treatment plan until the Oncotype comes back. I was doing okay until my post surgery pathology report showed my ki-67 score at 25% (versus my pre surgery biopsy ki-67 of 1-3%). I know the ki-67 is something that factors into the oncotype, so I don't think I will get as low of a score like you did.
My hospital only portion was about $106k. Yep $106k. The hubby and I are watching to see how much the insurance company actually ends up paying them. Sorry I think I'm rambling again....0 -
CUETANG
I didnt even know what an Oncotype was. All I know is that without the genomic testing Id have had only rads and hormone blockers. When the results came back, even though small and contained it was aggresive and I had a 30% reoccurence rate. With chemo it will still be 12%. Oh hum not happy with that number. It was enough for me to go for the chemo. Will get with the doc before treatment #3 and get all the details..
You need to come to my hosptial... I have yet to get a bill. I know that I have a max out of pocket of 2500.00. They havent billed me yet for that portion. I did set up a payment plan for the 450.00 for a portion of one of the MRIs. The amounts are staggering, 10K for an infusion, 8k for the Nulesta, 10K for the rads mapping...holy moly thats enough to make you sick !
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Wowsers Cuetang! That's some bill. How are you feeling about the possibility of chemo?
I have found no info on ki-67 in my path reports. Ah well, all will be revealed tomorrow.
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I should probably clarify that was the billed portion.... I expect to see that number drastically reduced once the insurance company gets done with them. I sometimes really am like "wow" at these charges the hospital tries to bill for. I'm not sure how I really feel about chemo. On the one hand, who wants to go through it unless we need to right? On the other hand, I don't want to not throw everything at the cancer. It's a wait and see thing next week. Starynights-- I would have done what you're doing if chemo will reduce chances of recurrence by that much as well! Hope your chemo sessions have been with minimal SEs..
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I know, that's what I wonder about how they come up with these numbers to begin with! Ridiculous! Meaningless?
I'm right there with you on the chemo sentimen Cuetang.
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Good luck tomorrow Renee on finding out what your recommended treatment plan will be! Back to digging into the inner warrior...
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Renee~~I totally understand what youre saying about not being able to read that book right now. I read it around the time of my mastectomy, but I was greatly inspired by her courage and her heart. She never let cancer dictate her life.
Heather Pick was my favorite news anchor.
Blessings
Paula0 -
Well, 8/16 yesterday of my Canadian protcol! RO talked about the boost on Tuesday - still not sure how many - he even said the orginial study had no boost! The German study brought in the boost. So not sure when I will know - but it won't be very long. Using so many different things to keep away the burn - the RO noticed a few very small spots and recommended that I start with an OTC 1% hydrocodizone then what everyelse I am using. I switch between the Aquaphor and the Miaderm. The hydrocodizone on before the Aguaphor makes it go on so much easier! I really feel like that is a get layer of protections! Love the techs in the treatment center! Spring break is almost over - next week will be a long one with school and treatments all week!! Hanging in there - and hope all of you are as well! Keeping drinking that water!!
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Hello everyone,
Welcome to the new sisters, sorry that you had to join our club, but hope you will find some comfort in here as I have. Its been awhile since I popped in, lots going on here, I had 2nd round of chemo on monday and feeling sooo dragged out, my hair started falling out yesterday in clumps so my friend shaved off the rest of it. That was hard to see in the mirror, kinda like oh crap this is real after all! plus side is i have smooth head, no lumpy bumpies lol. I am also moving in with my sister in a few weeks as I cant manage the house and finances alone anymore GOD I need to get past the depressing stuff and find something happy to focus on.
Hope you all have a fantastic day chat later
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Hey there LongWayHome - (((hugs)))
Congrats on 2nd round of chemo completed. Releasing ugh...beautiful head yeah:)) no bumpies yippee! We look for the good in this crazy journey and lol! Hoping your move in with your sister goes well...bet you girls will have loads of fun and good sister memories to share.
My brother moved in with us when he was ill...he's the crazy fun uncle that every kid loves and every mom wonders if the house and kids will still be there when you get home lol. My mom would call and say don't be mad, BUT...kids loved him so! Very creative fun soul...Peter Pan...:))) I love it that he would call mom to be the bearer of his exciting games that went just a bit too wild!
Glad you have your sister...they are special...enjoy!
Yesterday I sat outside and blew bubbles for me & kids...oh my how the love to chase! Pure delight their laughter!
Fight hard warrior!
Cindy0 -
Cindy~~I thought since you & the kids love bubbles, you might like to try this recipe. It makes huge bubbles. Enjoy.
Blessings
Paula
http://www.facebook.com/photo.php?fbid=118714828322517&set=a.103123286548338.1073741829.100005520004647&type=1&ref=nf0 -
JPH-- yay, halfway done there, *cheers*. May will be here soon and it'll be another thing checked off the list!
LongWayHome -- good to hear from ya! Yay, on getting another round of chemo done, how many more do you have? BC is craptastic but I find that during the day, there's some silly thing that takes my mind off of things once in a while. I'm sure you and your sister will find some crazy silly things to laugh about. (hugs)
Cindy-- bubbles sound so fun!
As for me, very interesting today.... found out my Oncotype score, an "8". Thinking chemo won't be recommended with that score, but a bit uneasy about not "using all of medicine's arsenal" to throw at this cancer and don't want any regrets in the future. Also a bit uneasy since I found out DCIS on the other side unexpectedly after the surgery pathology report (righty was supposed to be prophylactic) and am pretty sure they didn't order an Oncotype on that DCIS. I guess next week the docs will tell me what to do.... right now hating how BC has so many different colors and it is not a black and white thing where we can decide "yes" and "no" easily!
*back to imagining fun times of playing with bubbles as a kid*
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LongWayHome--glad you stopped in. Hang in there and do what you got to do. And we will be here if you need to vent!Cuetang, that is a good score. I think you'll feel better when you meet with your drs.
I got the word today--no chemo. Would only reduce recurrence chance 2-3%, so MO said SE and risks outweigh any benefit. She said one of the benefits that chemo would have on me (pre-menopausal) is chemopause--stopping my periods, so instead she started me on Zoladex (monthly shot in my belly), which will shut down my ovaries (=stop producing estrogen). In addition, I will start Tamoxifen next month--be on that for 5 years, and then on an AI 5 years after that. She also will put me on Zometa (every three months), which helps with bone density, and studies are showing that there's additional benefit to reducing recurrence. So, I'm glad I don't have to have chemo, not too crazy about going right into menopause (didn't see the ovary shutdown coming). Besides the crappy SE (and thinking good thoughts that those are minimal), I feel good about the direction I'm headed with dealing with this, and feel I have some answers about where my initial treatments are headed.
Also had second fill. Went fine. Right now experiencing little tightness (probably muscle spasms)--first time for that.
When I asked my MO about longer term, where will I be with all of this, she was optimistic. On top of me being statistically in good shape, she said I'd be on these estrogen suppressing treatments for the next 10 years (starving any cancer trying to get a foothold) and 10 years from now we'll have that much more information about BC treatments.
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Renee good to hear the no chemo news and thanks for the explanation from the doctor's office!
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Thank you ladies for the nice words of encouragement, I received a parcel in the mail today from my Aunty down East and it has some beautiful headscarves and sleep hats in it! Was so excited to look through and was just the pick me up that was needed today!
@ Cuetang~ I have 6 more chemo treatments to go out of 8, so I'm 25% done now!!! LOL
@ Renee~ I absolutely love your positivity and the outlook you have! Congrats on no chemo!
@ RMlulu~ Your brother sounds like he was an amazing man! Family is number one in my life and I am blessed with some pretty good ones too! And bubbles sounds like some fun, I think I will get some tomorrow!
Good night warriors!
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Hi y'all
Yippee! Happy Dancing:)) Renee & Cuetang
Renee- congrats on the attack plan...press on
Cuetang- great score:) MO will know just what to throw at the enemy. Use the best weapon for the fight! Ya got it
Paula- thanks for the bubbles...sometimes ya just got to go to a happy place and lol:)
LongWayHome - don't ya just love a XO in the mail:) nice surprise
JPH- rest up soon it will be 1/2:)
And tomorrow is Friday and drumroll 17/33...half way I see the goal line...R&R for skin&mind
Girlfriends coming for funny movie night...chick flick here I come! (((Hugs)))
Cindy0 -
You are such a bundle of positive energy Cindy! Yea for you being at the halfway point w/rads. Loved your story about your brother--thanks for sharing!
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Hi everyone. The time is flying by. So glad to ready everyone's news as we continue to journey.
Renee - Congrats on the no chemo!
Longwayhome - congrats on the 25% done!
Cindy - yay for the positivity and drum rolls as we near the finish line!
My one letdown is that my support for helping me clean my house is flaking on me so I sprung for a maid service every other week till I'm done with the next three rounds of chemo. I am becoming an expert budgeter right now! It was unfortunate that the vacation fund is going to house cleaning but its better than wearing myself out. My hubby is wonderful through all this and i think he was relieved I wasn't going to ask him to clean the bathrooms! LOL
Can I even tell you how happy I am to be 3 down and 3 to go? So far so good on the SEs for round 3. Feeling good all things considered.
Have a wonderful weekend to all the warriors!
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Yea for you PT! And good that you are doing what you need to do so you don't wear yourself out.
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Hello everyone,
Unfortunately, I am here to join the club... Thanks Cuetang for pointing it out to me as I kind of got stuck "waiting for results" section. I was diagnosed with IDC in March and am now waiting for the BRCA test. I was scheduled to have a lumpectomy on Tuesday but that will now be postponed till after I get the results for the BRCA test. I will have the sentinel node removed on Tuesday. Luckily I will have the appoinment with the gen people next week too and should get the results towards the end of the month. So lots of waiting again, but when that is all done, I will finally really know what is going on and what will happen next.
Glad to have found this section. I haven't read all the messages yet, but I will.
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Glad you found the thread! The waiting part always sucks, especially when you want to move forward and get it done! Good luck on the sentinel node thing. By the way, if they haven't warned you yet...a little TMI....don't be freaked when you see your pee come out blue...
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Welcome Maakmezorgen -
Glad you have found our band of Warriors, but sorry that you find yourself facing BC ugh:(.
This site has great info to help you prepare as you move forward in tx and healing. Use your waiting time to gather info and form your BC team. If there is a BC center in your area find out what services they provide and attend if possible. Waiting is hard...the scourge of BC:(
Nows the time to get your support team in place, but most of all try and find time for you.
Sending calming confident peaceful thoughts...you will be fine!
(((Hugs))) strong warrior!
Cindy0 -
Waiting for everything is definitely the worst part. Try not to let your brain go too far with all of the what ifs. I think that was the most stressful part of all of this for me. Hang in there, hopefully the ball will start rolling soon & then you will feel better knowing that you're actually moving toward the other side of this.0
