Calling all TNs
Comments
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Debwarrior thank you so much! The part that worries me the most is losing my arm. At my age (52) it's going to be a drastic change in my life. I am so happy to hear that you are doing well. Wish all of us a happy healthy new year!
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Div, I am so glad you are here with us, I sure hate the reason, but hugging you right now!
Looking, what a beautiful picture. You will be busy and happy having those faces around!
Thank you all for the hugs and well wishes while I am recovering from reconstruction revision surgery. I'm doing good. Today was my birthday, and we went to a little pub for dinner, it is kind of like "Cheers". My grown kids and 2 of my BFF 's and their hubs joined, it was fun. Now I have the holidays and birthday under my belt (literally), and ready for a New Year. Thinking of you all, especially those in treatment, and dear Annie who I know is struggling. God bless us all this year. 2017...wow.
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Happy Birthday Meadow!!!
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Meadow, a very HAPPY Birthday! Sounds like you had a fun celebration!
Annie, your in my thoughts and heart
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Meadow Happy Birthday!
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HaPpY BiRtHdAy Meadow!
Thinking of you, Annie. Hope you check in soon.
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Where is Madame Annie???
(((((Annie)))))
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Hello, ladies,
Been lurking since right after I was diagnosed in late August, and finally decided to introduce myself here in the TN thread.
I was diagnosed two days after my 58th birthday with triple negative IDC in my right breast, 2cm tumor, grade 3 no known node involvement, stage IIA or IIb, and aldo with ER+/PR+, HER2- IDC in my left breast, 2 cm, grade2, also thought to be IIA or IIb. After an MRI in early September, I was also dx'ed with a mixed ILC/IDC, ER+/PR+,HER2- 1cm, grade 2 tumor directly under the nipple. Not sure about node involvement. Borderline grade 3.
Talk about a "shovel to the face" kind of news. It's been four months and I'm not sure I've taken it all in yet. Not one, not two, but three distinct kinds of cancer. Wow.
Did four rounds of bi-weekly A/C , and just had my fifth weekly Taxol earlier today. I've been lucky with my side effects, bothersome, but not debilitating. Hope it stays that way.
I'll have a BMX in late March, hopefully with immediate DIEP reconstruction. But you know what they say about the best laid plans of mice and men....
So I figure the only thing I can really do is to stay positive even when this horrible disease throws another curve at me. One of the ways I've been able to do that is to come here and read all the kind, thoughtful, encouraging posts from so many of you. I finally decided to stop lurking and thank all of you for helping us newbies as we try to navigate this godawful disease.
Having a supportive family is great, and caring friends make a huge difference, but nothing compares to having other breast cancer survivors to lean on.
So, thank you all for your kindness, caring and support. It is,, quite literally, a lifesaver for so many of us.
Trish
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Three different types of cancer? YIKES, Trish. That's a lot to handle. I'm glad that chemo has gone smoothly and wish you an uneventful surgery and recovery.
Lyn
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Happy Belated Birthday Meadow!! Sorry I missed it.
Cocker, still holding you tight and praying!
Welcome to the newbies. You'll find lots of comfort here. Trish, wow that's a lot on you're plate! Just take one day at a time and know we are all here for you, praying!
Ladies, I need to vent a little and forgive me if I seem whiney because what I'm dealing with doesn't have anything to do with cancer, I hope anyway! So, Saturday night I started having some lower right abdominal/pelvic pain and it has continued. Saw my PCP yesterday and she sent an order for an ultrasound. She also did blood work to check CBC and Comprehensive Metabolic Panel. She didn't think it was my appendix or diverticulitis, but thinks it's may be something with my ovary, like a cyst. I didn't even think about diverticulitis until she said the word. Ugh! It hurts mostly when I walk, pee or poop! Urine test was clean also. My periods are still hit and miss ever since finishing chemo. I'll have some bleeding then stop several months and have more, etc. So it's hard to tell. I haven't had any period type stuff since August.Some of you know how I worry! I'm a bit concerned since she did a metabolic panel because it checks liver enzymes. So I'm like what if it's referred pain from my liver?! Ugh. Anyway have any of you had anything like this? Thanks!
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luvmydobies yes I had a lot of right side pain last summer and my cbc came back ok plus the ultrasound show in large liver but not grossly. I am eating better and the pain is gone. Good luck it's great when our doc's are on top of it.
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Thanks jc for the info! I sure hope it's not my liver!The pain is pretty low so hopefully it's something simple like an ovarian cyst, endometriosis, etc.
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Trish,
Welcome to TN land!! These ladies are great! I too was lurking for a bit before I got my brave on and entered the group. A warm welcome from everyone and questions answered promptly.
I am sorry about your triple blow, that is a lot to deal with and wrap your head around. It feels like your body is betraying you, doesn't it? I am a second time around bc - the first was stage 1a and 3mm, I got off easy. Not so this time. My lumpectomy is 1/16 and am actually at this point looking forward to finding out more on the path report and the nodes involved. Since you had neo-adjunct chemo, your cancer is already at bay systemically, which is a good thing. I thank you for saying the chemo was not so bad, I am very concerned about that part but posts like yours make me hopeful that I will manage it ok.
The other ladies on her have a lot of experience and knowledge behind them so you are in the right spot to get tips and thoughtful feedback. Some should have earned honorary Medical Degrees with their knowledge!
Hang in there, you are over a most difficult part of this treatment. Surgery and radiation were smooth sailing for me aside from being a bit more tired.
Anne
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Hi Everyone,
It's a big day in our household, as we celebrate my 5-year healthy victory today! Diagnosed on 12/27, but BMX on 1/4, so I choose this date.
Every year I log in and post my annual update. For one, it's a reminder to me of many things, things I've have accomplished, things I've had to change, etc... and two, it provides hope and inspiration for others.
However, I think going forward, I really want this day to be about All of Us! For this isn't only my victory, it's a victory for everyone who supported me, from each and every one of you on these boards, to vital material left on these boards by other members who don't frequent as much, to the new research and treatments that are extending the life of many survivors. I also want this day to be about celebrating every one of you! For everyone who is here, and for everyone who has ever become a member of this forum, it's a day to be thankful for all of our friendships, and to extend love and support to everyone.
Much love to all of you ladies.
Have a wonderful New Year everyone!
Debra
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Great to hear from you Debra! Thanks for giving everyone hope and encouragement!
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Made my day! Happy to hear that you are 5 years out and healthy!! Us newbie TN ladies need to hear these great success stories, thank you for sharing.
Anne
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Hurray for Debra!!!
Congratulations!
It's Happy Dance Time again!!!
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Thanks to Lyn, Anne and lovesmydobiesfor the warm greeting. This is a great place for info as well as support.
Thank you for the info on surgery and rads, Anne. I'm actually less afraid of surgery than I was of chemo. I do wonder how I'll fare with a bilateral mastectomy, especially if they can do the immediate DIEP reconstruction. I'm looking at a fairly long recovery time.
As far as chemo goes, Anne, I think my best advice is hydrate, hydrate, hydrate! I have a chemo buddy, who is a couple of years younger than I am. We are on the exact same schedule and dosage, both TN. She has struggled with side effects, especially during the Adriamycin/Cytoxan. She just couldn't manage to drink enough water (she doesn't like plain water), while I was able to get down at least four liters of water during each infusion. It may just be coincidence, but my side effects, especially the nausea, we're mild and manageable, while hers were much less so. Hope that helps!
To Debra: Congrats on hitting that all important five year mark! So important for us triple negatives. If I remember correctly, that means your risk now resets to baseline, meaning you have the same low risk of a new triple negative diagnosis as anyone in the general population. Yay! Something for the rest of us to look forward to.
Hope you're feeling better, lovemydobies
Trish !
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inspired by dolce - that is fabulous news!! Definitely a reason to celebrate! Thank you for all of your wonderful insight when I was going through my treatments - I always enjoyed your posts a great deal. I am so happy that you are doing well and it is wonderful to hear from you again on this forum. Many congratulations and whatever you are doing - keep doing it, since it seems to be working for you!
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Congrats Debra!! That's awesome!! I'm so happy for you and your family!!!
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Welcome Trish! We are so glad you are here with us. Wishing of course for another reason, but glad none the less. You must have been floored by the triple cancer...I am so glad to hear you have great support at home. Again, welcome.
Debra, as always so glad to see you, and congrats on the 5 years!
Luvie, I too had pain in an ovary area, so much so that I went and had an internal ultrasound, and the results were...it was just an ovary. My gynecologist said it was painful as I was post menopausal, it was trying to do it's job, and it wasn't working very well. I got the image of an old car sputtering along....anyway, he said maybe I was trying to ovulate, and experiencing pain. It did go away, without treatment. Hoping you get a similar answer, please update when you can.
Good to be with you all today
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Happy Birthday Meadow!
I know that there are others here that I want to respond to, - I have catching up to do!
Welcome hugs to the newbies, and hugs to the 'oldies' too! You are such a terrific group !
FEEL WELL!!
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Trishyla, you certainly have lots on your plate! I, too, have multiple diagnoses - TN IDC (4.5 cm) and TN DCIS (8x8x3.5 cm) on the right, mixed ER/PR+ DCIS and LCIS (6.3 cm) on left. Only the IDC showed on imaging, so my "prophylactic" mastectomy on the left side was a big surprise. I understand that this multiple presentation is pretty rare, but it is what it is. I did dose dense AC, then dose dense paclitaxel, and unfortunately it was quite debilitating for me.
On the plus side, I will be two years out from diagnosis the day after tomorrow, and am doing ok. I still have some residual fatigue and some mobility issues from neuropathy, mostly in my feet. It's interesting that the standard of care for TN now does neoadjuvant chemo - my surgery came first, though the IDC was removed in a wide excision biopsy, so neoadjuvant wouldn't have been an option for me anyway. (I didn't get clear margins with the excision biopsy, but they didn't find any more IDC when themastectomy was done.) Keep on keeping on - it does get better, and I did find that recovery from surgery was easier than recovery from chemo.
Inspired by Dolce, congratulations on attaining the 5 year anniversary! You were a great help to me when I was diagnosed, and I am grateful for the Metformin studies that you sent me. I'm so happy for you.
I haven't been on the boards much lately - I still have some reconstruction work to get done (exchange surgery, probably in the late spring) and haven't wanted to discourage anyone by complaining about my seemingly permanent neuropathy, but even with all that, at two years out, maybe I can be an encouraging voice to someone. I'm no longer cane dependent all the time, but my cane does live in my car so I have it available for slippery or uneven surfaces. I was on vacation in Mexico in November and surprisingly, i needed my cane there more than at home! Walking on sand is much harder than I expected. I did have noticeable chemobrain, but that is a lot better now, and I'm starting to feel more like my "old self". Not the same, of course, but more recognizable than I have been for a long, long time. It does get better
Annie, I have always been encouraged by your unique voice, and my heart is with you.
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Happy New Year to everyone. There have been a lot of posts in 2017 already! DIV, I think of you a lot. I hope you will get a lot of support heading into your surgery, giving you information about what to expect and how recovery and learning to live in a new way might go. Yesterday, at my cancer center, there was a patient who was in for a check up. She'd had a leg amputation and was doing really, really well. Of all of us in the center she looked the best, the healthiest, so her care must be going really well.
I had my first Taxol infusion yesterday (Wed 1/4/17). They gave me Dexamethazone and Benadryl as premeds and 2 others that I've forgotten but I'll check and post later. Day two, so far, is uneventful.
On Tuesday I had an ultra sound. It did not show as much progress and we'd hoped for. There is minimal shrinkage of the tumor. The better news is that the lymph nodes look good. My MO had been considering adding Carboplatin to the Taxol because of the ultrasound results but in my last round of AC I had bruising on my left arm and I had phlebitis on my right arm. She is holding off on the Carboplatin. I'm grateful for the reprieve from side effects (I gather Carboplatin SEs are closer to AC) but I'm a bit concerned about the lack of shrinkage. My MO said that it is good news that the tumor has not grown and we may see shrinkage from the Taxol. Also, she can add in the Carboplatin later. She did increase the Taxol rounds from 10 to 12.
My MO is also a researcher and she is specifically looking for ways to break TNBC into smaller categories and to find targeted treatments for TNBC, as exist for other types of BC. I imagined my disappointing results on AC going straight into the database. Maybe, years from now, that database will help guide treatment for all of us and those who follow us.
Also she is referring me to a geneticist and they may do a full genetics panel. The results of that would not guide the chemo decisions so much as the surgery decisions to follow.
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Welcome Trishyla. We hate you have to be here, but are glad to give you support. I too Avmom have permanent neuropathy due to taxol. It was just in my hands, now my feet and affecting my mobility, and I did the icing. These boards have saved my sanity.
Meadow so glad you are doing good, you are my lifeline girl.
hugs to all.
Val
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aterry thank you so much! I start radiation and chemo January 9th. Radiologist called today to touch base and to make sure to start using cream. Radiologist, oncologist and orthopedic surgeon have all been in contact with one another and feel they have the best plan and treatment in place for me. Radiologist suggested that I take a half of a pain pill before my treatment cause during simulation my arm and back started to spasm due to raising arm to hold bar. Just hoping that chemo and radiation shrinks tumor some so that they don't have to remove as much of my ribs. Praying for all the ladies going through this as well. Stay strong!
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a terry, I think any shrinkage is improvement, and since you did respond to the AC, do not be discouraged. I know many here did have Carboplatin added, Allydp did, maybe others can give you some info on that. Sounds like you have a great team, hang in there.
Again thank you all for my Happy Birthday wishes, Another, luvie, gmmiph, DiV, SLV, and all.
LMV, the dog sniff cracks me up! So cute! VISZLA I presume....!
Val thank you I love you too
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Cocker - Thinking of you everyday. Hoping things are going as well as they can. Please drop in when you feel up to it as we all care about you and your family. Just know there are so many of us in your corner.
Hugs,
Kathy
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Thank you, avmom, for your post. Your diagnosis is very similar to mine, with comparable staging and tumor grade. It's encouraging to hear that you're doing so well. I'm sorry to hear about the lingering neuropathy, for you and for Valstim. I did really well with the dose dense A/C, with minimal side effects, but am starting to get some mild neuropathy in my hands and feet with the Taxol. I just had dose #5, out of 12, and I'm hoping it doesn't get much worse.
DIV, I'm so very sorry to hear about your diagnosis. What a rough, rough treatment to have to contemplate. You seem to be facing it with such grace and courage. Much more than I think I could manage. You truly are an inspiration!
Hope all is well with all our other TN sisters, especially Crocker. I've been following her posts while lurking, and she's never far from my thoughts.
Trish
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Dear Annie,
I keep you and your sweet family in my prayers. Hoping the love and strength from your family and friends will lift you up.
Happy Birthday Meadow!
Welcome to all the newbies. You can do this.
XOXO
Paula
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