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Susan - Ohio View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susan - Ohio Quote  Post ReplyReply Direct Link To This Post Topic: Welcome From TNBC Foundation
    Posted: Nov 19 2021 at 9:21am
HI Everyone - I am a new subscriber to TNBC but I am a 21 year breast cancer survivor.  I work in CAM (complimentary alternative medicine) with a specialization in cancer treatment. I am here to help and learn. Thank you - 
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Alishan View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alishan	Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2021 at 1:48pm
Hi my dad had this surgery also stage one. We tried the wedge pillows but ended up getting an electric bed initially he slept sitting up now time has passed he lowers the bed more but it was worth investing in one. Eating has been not too bad he has lost a lot of weight as he is only able to eat little and often. We found making up smoothies helpful he still has this every day with protein powder avocado fruit and veg to build him up still. I have started following @Ankr.Us on Instagram… they post good content on nutrition for cancer patients. Wishing you all the best.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2021 at 6:50pm
Hello ,Mary . I am half way my Chemo ,at some point I will have to make a decision.I will keep in mind the information you are sharing.And I really appreciate your good wishes.again appreciate you sharing your experience! 

Have a great weekend. And love and peace to all! 🙏🤗

Ellie
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mwgans Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2021 at 10:09am
Hi Ellie -- I was diagnosed with Stage 2b TNBC with lymph node involvement (lukcily just 1 lymph node).  I was treated through a clinical trial at Dana Farber in Boston by a TNBC expert oncologist, Dr. Eric Winer, and have a wonderful surgeon there, as well, Dr. Tari King.  Upon conclusion of the clinical trial, it was recommended that I have a lumpectomy (and lymph node excision), as opposed to a mastectomy.  Dana Farber definitley has a mindset of breast preservation if at all possible, and Dr. King explained to me that not only was a mastectomy not necessary, but because I would need radiation at the end, radiation is safer when breast tissue remains.  I could have insisted on a mastectomy just to get rid of it all, but opted for the lumpectomy.  After the lumpectomy, I underwent another chemo regimen (this is because the clinical trial was research based and although I had a PCR after the clinical trial, to be safe, Dr. Winer wanted to have me go through another round of standard chemo (Cytoxan and Taxotere)).  I then had 4.5 weeks of hypofractionated/cardio protective (deep breath inhalation) radiation which I just finished on 8/4.  All in all, I am very happy I opted for a lumpectomy.  But every story is different and relying on your medical team is crucial to making an informed decision that best suits your story.  Best of luck to you!
Mary
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2021 at 10:33am
Hello Dona. Yes,today I have send an email to my surgeon asking her opinion about this new study,maybe it will become an option following  treatment. Regardless to the genetic testing Mine was negative. Thanks for taking the time Dona🙏
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2021 at 10:23am
Hello ,Amy. Thanks for your advice I saw the NP on Monday and she suggested to wait after surgery for PT person and treatment for lymphedemia she said I will more likely to need then that now.because the insurance may fight and not give me the treatment later if I get it now .she suggested exercises which I been doing and helps big time .  

I understand your decision of getting a full mastectomy,appears to me you made the right decision. I am BRCA2 - but PLD1 positive ,my genetic testing was  negative. I guess will take one day at the time I address that later with my surgeon. Thanks again 🙏




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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2021 at 5:34pm
Ugh I agree the cold therapy was very uncomfortable! I used the art of distraction , that was the only thing that helped me. I would listen to a podcast or music to help deal with the pain. I iced for gemzar and so far no neuropathy! So it's definitely worth short term pain than long term neuropathy. Hang in there , be well.
Andrea


Edited by cookie54 - Aug 10 2021 at 5:35pm
8/2016,IDC,StageIA, Gr3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX implants,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca, surg
Xeloda2/21,8rnds


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Lilia View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lilia Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2021 at 11:37am
I am new to the site and thinking I haven’t figured Out how to post correctly. I have a question Regarding taxol. I was Diagnosed March 2021 stage 2 B, Negative on genetic testing.2.8cm LB, Lump in lymph node, biopsy,it was negative.Just finished first 8 weeks of load dose Red devil chemo,3 week pause do to  Atypical pneumonia. Now on to Taxol four treatment over eight weeks. My Four kids are going back to school in two weeks. just trying to safely navigate around them.  I heard cold therapy for hands and feet would help prevent Nerve damage. One taxol chemo down.struggled with pain of cryotherapy. Any advice on how to make it less painful?? 
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2021 at 8:35am
Hi Ellie,

Welcome and thank you for sharing this study from MDA.  It will be interesting to see if this becomes an option following treatment.

Have you had genetic testing done?  Most women now get a panel of genetic tests to see if there are any inherited mutations.  If you test positive for a gene mutation, your surgery choices are narrowed to a mastectomy in most cases. 

The chemo you are receiving is the standard of care most receive after a diagnosis.  Some get Taxol weekly, every 2 weeks or every 3 weeks. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (1) Thanks(1)   Quote AmyE Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2021 at 10:46am
Hi Ellie, Thanks for sharing and I can share my decision and some advice. First, I suggest asking for a referral to a PT person specializing in lymphedemia. They can help with your range of motion and help prevent future issues. 

I decided to get a full mastectomy. I had very dense breasts and it makes finding cancer challenging. Since I was 35, every mammogram has resulted in extra scans and ultrasounds. I also hated the presugrical MRI that found a second spot. This resulted in a failed ultrasound biopsy that became the MRI biopsy. The whole process was long, stressful and ultimately painful. I foresaw every scan being the same. I was also told I am BRCA 2+. The second biopsy process really changed your mind. I had really wanted a lumpectomy. I also looked at the potential of the cancer coming back combined with my BRCA2+ diagnosis. My decision changed right before surgery. 

Good luck with your decision,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2021 at 11:33am
Hello,everyone 

I want to start by saying this website is wonderful and I am glad I found it.I am Ellie 37 y/o and recently diagnosed with tnbc ,my tumor size is 2.9cm x1.3cm 3.3cm on the right breast,I had a lymph node biopsy which was negative.my stage 2b. I was put on chemo first (just finished 3 rounds) 4 times AC and follow by 4 x taxol ,I’m a little nervous about starting taxol soon. I don’t know if I’ll have a lumpectomy or mastectomy yet ,any advice on this? I noticed a lot of women in this forum opted for a mastectomy. curious as well as some women have receive less rounds of chemo and others more even with the same stage of cancer as mine,I guess doctor based their decisions on the health of each patient? Same as radiation .also if anyone have any advice on how to deal with thightness in the armpit after a biopsy it hurts a little  when I try to lift my arm. Also Have anyone shared with their doctor about the new study on Statins and tnbc of the university of Texas M.D. Cancer center ? I plan to mention this to my doctor on my upcoming  appointment . I’ll share the link.  
 Thanks for your time and this forum,this new diagnosis has been a roller coaster I am trying to stay strong and positive for me and my 2 kids. I hope you guys have a great weekend and God bless you all💪🙏

Ellie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2021 at 11:25am
Hello,everyone 

I want to start by saying this website is wonderful and I am glad I found it.I am Ellie 37 y/o and recently diagnosed with tnbc ,my tumor size is 2.9cm x1.3cm 3.3cm on the right breast,I had a lymph node biopsy which was negative.my stage 2b. I was put on chemo first (just finished 3 rounds) 4 times AC and follow by 4 x taxol ,I’m a little nervous about starting taxol soon. I don’t know if I’ll have a lumpectomy or mastectomy yet ,any advice on this? I noticed a lot of women in this forum opted for a mastectomy. curious as well as some women have receive less rounds of chemo and others more even with the same stage of cancer as mine,I guess doctor based their decisions on the health of each patient? Same as radiation .also if anyone have any advice on how to deal with thightness in the armpit after a biopsy it hurts a little  when I try to lift my arm. Also Have anyone shared with their doctor about the new study on Statins and tnbc of the university of Texas M.D. Cancer center ? I plan to mention this to my doctor on my upcoming  appointment . I’ll share the link https://www.sciencedaily.com/releases/2021/08/210803105520.htm.            Thanks for your time and this forum,this new diagnosis has been a roller coaster I am trying to stay strong and positive for me and my 2 kids. I hope you guys have a great weekend and God bless you all💪🙏

Ellie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2021 at 4:01pm
Hello Marie, I just joined this site. I was diagnosed with triple negative breast cancer as well.I would really appreciate it if you can tell me  your experience .Thanks.                         
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2021 at 2:25pm
much thanks to Steve and Donna who continue to post here. I found this site several years after I had been dx. I found it extremely helpful in finding out what I had been thru and what TN was/is. It hadn’t been named when I went thru it. I am grateful to having gone thru chemo even though it was only half of what protocol is now. I still pop on occasionally to see what is new. I’ll also post to give encouragement that there are long time survivors. My daughters were in grade school and middle school when I was dx. Ill soon be a grandparent for the first time.  I’m grateful to all the positivity on this forum. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Marymom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 8:21pm
Much thanks Steve for offering to help me…Donna started the thread and I just posted my lifestyle changes on the thread ( it is a bit long) sorry all :))
I also want to share I am going on four years, I have a cousin going on 18 years and another cousin going on three years…all cancer free and all tnbc.  We all had genetic testing and none of us were Braca Gene positive. 
Godspeed to all!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 12:34pm
Hi Marymom,

I would be happy to start a new thread for you.  I'll call it Thrivers Lifestyle Changes. What a wonderful idea.  I agree with you that we will never know if the improvements we make to our diet, lifestyle, etc. will matter in the end, but I have to think any improvement makes us a better to deal with life.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 10:42am
Dear Marymom,

happy to walk you through it..

please send me a PM and give me your email and I will send you a Zoom invite and we can go through it . I will also give you my phone number if you would prefer to call me or I am happy to call you.

or, please, send me an email to info@sagepatientadvocates.org

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 9:32am
Steve!  Thank you…yes my grandchildren are my focal point through this journey as well. AND yes…taking your advice to start a thread.  Just need to figure out how to do it!  I can’t blame chemo on my lack of technology skills!  If you could give me the steps…that would be great or even if you want to kick it off.  That would’ve great! 
I just think we can benefit from hearing what others are doing or not doing.  I look at us all as a team and one player can help another with a simple suggestion.
Godspeed to us all!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 8:59am
Dear Marymom,

Thanks for your kind words and very positive post. It is wonderful hearing how well you are doing.

I think it would be wonderful if you were willing to start a thread for TNBC "thrivers" and tell us again what has helped you. My daughter does not post but I would like to add how she changed her lifestyle. I know she feels it has helped her. I think your new thread would be a big plus for our TNBC family and bring hope to us.

One thing I suggest to everyone I help is to "please try to find the beauty in each day." It is very tough to do some days but I feel it helps. Every since my mom passed when she was 46 from metastatic breast cancer after a five year battle I have found that I appreciate many things that I may have taken for-granted before. Yesterday, was a perfect example. We are helping to babysit our little 3 month old grandson. He is suffering, as many babies do, from a bad case of eczema. I watched my adored wife of 41 years tenderly give him a massage with Aquaphor and see how his tears turned to cooing.

My mother loved children and I was an only child and was 20 when see passed. She never got to see her six grandchildren or her eight great-grandchildren. A tragedy for all of us. A dear friend of mine, who happens to be a gyn/oncologist told me that his parents passed before seeing their grandchildren and how lucky my wife and I are to be able to enjoy them. So, it is through that painful lens that I watched the love between my wife and grandson and truly feel blessed that we are here to enjoy the grandkids. My wife will be 70 in February and I will be 78 in January and the beauty in each day for us is being actively engaged with our family and for me it is the special joy of doing my patient advocacy work which often fills my heart with joy and I am thankful every day that I am privileged to do this beautiful work. And I am so thankful to my wife for her loving support of my work; without it I would not be able to do it.

Sorry, Marymom, I digressed. I hope you start the thread and I will be happy to add to it and hopefully others here will as well.

with my love to all here,

Steve


Edited by SagePatientAdvocates - Jul 17 2021 at 9:00am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 4:00am
I do want to add one more insight that I believe is a big part of the picture.  Diet and exercise.  I was diagnosed on 12/17/17 a 1.6 cm tumor clear margins and lumpectomy.  AC x 4 and 12 taxol and finally 16 rads with an additional 4 power blasts.  I was treated at Sloan in NYC.  Went through everything beautifully and am most thankful for my team of doctors, nurses and my family.
I have read a lot and have adopted an intermittent fasting regimen a long with daily High intensity training. I think lifestyle changes are another part of the equation.  At the end of the day…all of my lifestyle changes may not make a difference in my survival outcome. BUT, I feel like I am doing something to help my effort and I feel great!
Lastly, today I ran into one of the woman I helped get through her diagnosis and she confided in me she sometimes still gets down in the dumps and asked me if I do…and I said yes I do.  I especially get down after a great family occasion thinking what happens if I am gone and miss all of this.  I will never discount the highs and lows of any cancer diagnosis…but my oncologist once said go with it and then reset your clock and move on.  I move on by getting busy!  I clean a closet, garden or take on a new task at work. So, while keeping our bodies busy with new diet and exercise…don’t forget about keeping our minds busy too.  I think we have a whole body approach to this thing and once again my opinion.
In closing, it would be nice to start a thread for thrivers to add what lifestyle changes they have adopted to help them.
Godspeed to us all!

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