New Posts New Posts RSS Feed - Welcome From TNBC Foundation
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Welcome From TNBC Foundation

 Post Reply Post Reply Page  <1 329330331332>
Author
S_pixiedust View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 11 2021
Location: USA
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 12:48pm
Thank you, Mountain View! I will investigate all options. Trying to stay calm here, and you are all helping me do that! So many good and caring people in the world - my heart is full of gratitude and hope now! Wishing you all the best!
Back to Top
whynot View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 07 2021
Location: Thornton
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote whynot Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 12:08pm
Hello, I am new to this forum, so forgive me if I'm posting in the wrong area. I was diagnosed with Stage 1 TNBC. I had a double mastectomy and then went to the oncologist and was told that because the tumor was only out of the duct by 6mm I did not need to worry about chemo or any other therapy and come back and see me in 4 months. I am worried that she does not understand the difference between TNBC and other breast cancers and maybe her advise is correct. I thought I would go get a second opinion with someone who specializes in this kind of cancer, but when I looked for a specialist in Denver for TNBC oncologist I cannot find one. Does any one know of someone I could see in the Denver area?
Back to Top
Mountain View View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 29 2018
Location: Pennsylvania
Status: Offline
Points: 19
Post Options Post Options   Thanks (1) Thanks(1)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 3:46pm
Hi!  I would of been happy to find an oncologist that said not to do chemo.  In all my research, there are 4 subtypes of TN and it seems chemo doesn't help them all and seems to make it worse.   I don't want to get in trouble for saying that on here but it seems true.  There is a natural TNBC group on Facebook and a lot of things you can take and try to prevent a reoccurrence.  I opted to try only low dose chemo which I regret as well.  Good luckSmile xo

Back to Top
cookie54 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2020
Location: 08012
Status: Offline
Points: 30
Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 5:11pm
S_pixiedust I'm so very sorry for your recurrence. I am also dealing with a recurrence and like you was stage I in 2016, now  Stage 3C had mets to axilla and chest wall nodes. 
I live in South Jersey 20 minutes from Philly and had surgery in the Penn system and my treaments are at Penn in NJ. I am sure Steve will point you in the right direction we are lucky to live in an area that has great medical facility options.

Take a breath, one step at a time and you will battle through! I know it stinks and I wish none of us were dealing with this. We are all here for you and wish you all the best.Hug
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


Back to Top
S_pixiedust View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 11 2021
Location: USA
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 7:01pm
thank you cookie54! I agree that this area has its share of wonderful medical care options. I also wish that none of us had to deal with this. Wishing you & everyone here all the best! Sending hugs and good thoughts!
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13470
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 10:48pm
Originally posted by Mountain View Mountain View wrote:

Hi!  I would of been happy to find an oncologist that said not to do chemo.  In all my research, there are 4 subtypes of TN and it seems chemo doesn't help them all and seems to make it worse.   I don't want to get in trouble for saying that on here but it seems true.  There is a natural TNBC group on Facebook and a lot of things you can take and try to prevent a reoccurrence.  I opted to try only low dose chemo which I regret as well.  Good luckSmile xo



Mountain View,

There are actually many more than 4 sub-types of TN.  I've done so much research over the past decade and never heard that chemo "makes it worse".  Please provide your scientific sources?  I'd be happy to research it further.

TNBC is not like other breast cancers.  It is much more aggressive and suggesting alternative therapies outside of standard treatment guidelines could be misleading and dangerous.  I'd caution these type of statements if you are not a medical professional. 

For those that would like to understand and read the NCCN Guidelines for Breast Cancer,


Page 54 discusses treatment for TNBC, particularly Guide 11 and Guide 12.




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

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13470
Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 10:57pm
Originally posted by whynot whynot wrote:

Hello, I am new to this forum, so forgive me if I'm posting in the wrong area. I was diagnosed with Stage 1 TNBC. I had a double mastectomy and then went to the oncologist and was told that because the tumor was only out of the duct by 6mm I did not need to worry about chemo or any other therapy and come back and see me in 4 months. I am worried that she does not understand the difference between TNBC and other breast cancers and maybe her advise is correct. I thought I would go get a second opinion with someone who specializes in this kind of cancer, but when I looked for a specialist in Denver for TNBC oncologist I cannot find one. Does any one know of someone I could see in the Denver area?


Whynot,

Your tumor size is in that "grey area" for recommending chemo.  Actually the NCCN Guidelines suggest for TNBC:

If tumor is 0.6 to 1.0 cm, consider:Chemotherapy

Please see page 54, Guide 11 of the NCCN Guidelines:



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

Back to Top
Mountain View View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 29 2018
Location: Pennsylvania
Status: Offline
Points: 19
Post Options Post Options   Thanks (1) Thanks(1)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2021 at 10:52am
We should all be able to share our opinions without judgement.  I don't need scientific studies to know that chemo does not help all those with TNBC and to say it does is not fair either. I personally know 4 people with TN that chemo did not help at all in fact it made things worse and some have already passed away. Now I am watching another friend going through the same thing and she is on her final days.   I am not going to get into any disagreements or arguments with you.  I know there are more than 4 subtypes but they seem to at least acknowledge 4.  I know my subtype and I know chemo does not work for my subtype.   The doctors need to stop treating this like it's all one disease because it's not.  Chemo is standard protocol because they have nothing else to offer.  I met with some top doctors at top cancer hospitals and the answer is always it's protocol.  Anyway I would just like women to stop being scared and bullied into making decisions.  Again, chemo works for some and others it does not.  I have another friend with TN that declined chemo after watching her aunt pass away from it.  She is a 9 year survivor without any chemo.  Again lets all build each other up and support whatever decisions we make regarding this awful diagnosis.  xo 
Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4711
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2021 at 9:21pm
Dear Mountain View,

written with xo back at you..my responses in caps below-

We should all be able to share our opinions without judgement. 

YOU ARE ABSOLUTELY CORRECT THAT WE SHOULD BE ABLE TO SHARE OUR OPINIONS BUT THE
WITHOUT JUDGEMENT PART IS DIFFICULT BECAUSE YOU HAVE MADE CERTAIN STATEMENTS THAT CAN BE HARMFUL TO THE WOMEN HERE., IN MY OPINION

I don't need scientific studies to know that chemo does not help all those with TNBC and to say it does is not fair either.

NO ONE THAT I KNOW OF HAS SAID THAT CHEMO HELPS EVERYONE WITH TNBC. WHAT I WILL SAY IS THAT AT TIMES TNBC IS VERY SENSITIVE TO CHEMOTHERAPY AND AT TIMES IT IS NOT. MY DAUGHTER HAD ACT 17 YEARS AGO AND SHE HAS NO EVIDENCE OF DISEASE TODAY AND SHE IS HEALTHY. SHE ALSO HAD EXTENSIVE SURGERY.

I personally know 4 people with TN that chemo did not help at all in fact it made things worse and some have already passed away. Now I am watching another friend going through the same thing and she is on her final days.   I am not going to get into any disagreements or arguments with you. 

I HAVE KNOWN AT LEAST 100 WOMEN WHOSE TNBC WAS CHEMO-RESISTANT. I DEFINE CHEMO-RESISTANT AS A TRAGIC EVENT WHERE THEIR CANCER RECURRED WITHIN 3-5 YEARS WITH AWFUL CONSEQUENCES AT TIMES. OR AT TIMES NEVER REGRESSED FROM THE TIME THEY WERE DIAGNOSED. I HAVE ALSO SEEN RECURRENCES AND A NEW COURSE OF TREATMENT HELP THEM TO LIVE SEVERAL YEARS TO AT TIMES 10 OR EVEN 15 YEARS. 

MY HEART ACHES FOR THOSE WOMEN WHO PASSED AWAY AND LEFT GRIEVING FAMILIES AND PARTNERS.

I know there are more than 4 subtypes but they seem to at least acknowledge 4. 

ACCORDING TO CHUCK PEROU WHO IS ONE OF THE LEADING RESEARCHERS IN THE U.S. STUDYING TNBC/SUBTYPES THERE  SEEM TO BE AT LEAST 6-7 TYPES OF TNBC SUBTYPES. 

I know my subtype and I know chemo does not work for my subtype. 

THAT MAY BE TRUE, UNFORTUNATELY, AND I AM GENUINELY SORRY THAT IS THE CASE FOR YOU. I KNOW YOU ARE STRUGGLING AND ANGRY; UNDERSTANDABLY SO.

The doctors need to stop treating this like it's all one disease because it's not. 

THE CORE PROBLEM ACCORDING TO MOST OF THE RESEARCHERS AND ONCOLOGISTS I HAVE TALKED TO HAVE TOLD ME THAT EVEN THOUGH THE VARIOUS SUBTYPES ARE KNOWN, IN MANY CASES, THEY HAVE NOT FOUND AN EFFECTIVE TREATMENT FOR THAT SUBTYPE BUT THE RESEARCH CONTINUES AND THAT GIVES ME HOPE. THE DOCTORS ARE DOING THEIR BEST WITH THE WEAPONS THEY HAVE AND AS YOU MAY HAVE SEEN THERE HAVE BEEN STUDIES INDICATING THAT KEYTRUDA + CHEMO MAY BE EFFECTIVE WITH SOME TNBCs.  I POSTED ON THIS TODAY AS DID DONNA MONTHS AGO.

I ALSO BELIEVE THAT THE GOAL SHOULD BE THAT MORE RESEARCH NEEDS TO BE DONE TO TARGET THE VARIOUS SUBTYPES MORE EFFECTIVELY. FRUSTRATINGLY TNBC NEEDS MORE RESEARCH TO BE DONE AS DOES INFLAMMATORY BREAST CANCER. HARD TO ATTRACT RESEARCH DOLLARS WHEN THEY ARE BOTH SO RARE. THE TNBC FOUNDATION HAS BEEN TRYING THEIR BEST TO SUPPORT TNBC RESEARCH. 

Chemo is standard protocol because they have nothing else to offer.  I met with some top doctors at top cancer hospitals and the answer is always it's protocol.

MANY ONCOLOGISTS ARE BOUND BY THEIR INSTITUTIONS INSISTING THAT ONLY FDA APPROVED PROTOCOLS CAN BE USED SO THAT IS WHAT THEY CAN PRESCRIBE. BUT, IT IS ALSO TRUE THAT CURRENT CHEMO TREATMENTS, NOT AS OFTEN AS WE WOULD LIKE, HAVE GIVEN WOMEN WITH THBC A LONGER LIFE. 

I AM ALSO PRAYING THAT THE RECENTLY APPROVED TRODELVY (SACITUZUMAB) CAN HELP OUR COMMUNITY. 
SO FAR, I HAVE SEEN IT HELP SOME AND NOT HELPED OTHERS BUT I AM ENCOURAGED THAT SOME FOLKS WERE HELPED.

Anyway I would just like women to stop being scared and bullied into making decisions. 

I HAVE HELPED OVER 1000 WOMEN WITH TNBC IN THE LAST 17 YEARS AND I HAVE SEEN MANY SCARED WOMEN, UNDERSTANDABLY SO, BUT HAVEN'T SEEN THEM BEING 'BULLIED' INTO MAKING DECISIONS. IF ANY OF THE WOMEN WERE 'BULLIED' I WOULD NEVER REFER THEM TO THAT ONCOLOGIST AGAIN. IF YOU MEAN THE ONCOLOGISTS HAVE SCARED THE WOMEN I DON'T THINK IT WAS DONE WITH MALICIOUS INTENT, RATHER AN ASSESSMENT THAT TNBC CAN BE TOUGH TO TREAT WITH A LIMITED ARSENAL OF WEAPONS AND THAT IS SCARY..

Again, chemo works for some and others it does not. 

THAT IS ABSOLUTELY TRUE.
 
I have another friend with TN that declined chemo after watching her aunt pass away from it.  She is a 9 year survivor without any chemo. 

THE EXPERIENCE YOUR FRIEND HAD OF DECLINING CHEMO AND LIVING FOR NINE YEARS IS TRULY REMARKABLE. I AM DELIGHTED SHE DID. I HAVE HELPED A HALF DOZEN TNBC WOMEN WHO DECLINED CHEMO FOR A VARIETY OF REASONS-SEVERAL WENT TO TIJUANA FOR A SPECIAL DIET, HERBAL MEDICINES AND OTHER ALTERNATIVE TREATMENT AND TWO WOMEN DID NOT DO TREATMENT BECAUSE THEY REFUSED TO LOSE THEIR HAIR. THEY ALL PASSED AWAY BETWEEN 12-24 MONTHS. AND WHAT UPSETS ME WHEN YOU WRITE ABOUT YOUR FRIEND WHO HAS LIVED NINE YEARS WITHOUT TREATMENT  IS THAT YOU DON'T MENTION THE WOMEN WHO REFUSED CHEMO AND DIED. I THINK IT IS DANGEROUS TO ONLY GIVE ONE SIDE OF THE STORY TO  OUR TNBC FAMILY. PLEASE TRY TO BALANCE YOUR STATEMENTS WITH OTHER INFORMATION THAT MAY BE PERTINENT. 

MOUNTAIN VIEW WE NEED SCIENTIFIC STUDIES TO VALIDATE STATEMENTS. I TRY MY BEST TO GIVE VARIOUS LINKS AS REFERENCES. AS DOES DONNA, SO THAT OUR FAMILY IS INFORMED WITH BOTH SIDES OF THE STORY.

I HAVE SEEN MANY HUNDREDS OIF CASES LIKE MY DAUGHTER WHO, ONCE THEY GOT THROUGH 3-5 YEARS, WITH NO RECURRENCE ARE DOING VERY WELL, SOME ARE NED, AND LIVING FULL LIVES. PERIODICALLY, THERE ARE THREADS ON THE BOARD ASKING FOR LONG-TERM SURVIVORS TO CHECK BACK IN WITH US. OVERWHELMINGLY, THESE WOMEN HAD HAD CHEMO AND BENEFITED FROM IT.

THERE IS A LARGE UNHEARD FROM AUDIENCE THAT ARE TNBC SURVIVORS. THAT IS UNDERSTANDABLE. MANY WOMEN HAVE TOLD ME "YOU WERE VERY HELPFUL TO ME BUT PLEASE DON'T CALL ME TO SEE HOW I AM DOING. I DON'T WANT TO TALK ABOUT MY CANCER. I JUST WANT TO LIVE MY LIFE AND I KNOW IF I NEED YOUR HELP AGAIN YOU WILL GIVE IT TO ME SEAMLESSLY, RIGHT?" AND MY RESPONSE IS "YOU KNOW I WILL."

I FEEL IT IS VERY IMPORTANT THAT THE WOMEN HERE HAVE HOPE. THERE ARE RESEARCHERS AROUND THE WORLD WORKING ON THE PROBLEMS OUR TNBC FAMILY FACES. I BELIEVE PROGRESS IS BEING MADE ESPECIALLY WITH DEVELOPMENTS LIKE KEYTRUDA + CHEMO AND TRODELVY.

 Again lets all build each other up and support whatever decisions we make regarding this awful diagnosis.  xo 

I AGREE THAT WE SHOULD TRY TO SUPPORT EACH OTHER. SORRY, BUT TELLING US THAT WOMEN SHOULDN'T DO CHEMO IS NOT SUPPORTING EACH OTHER. IT'S DANGEROUS, FROM MY EXPERIENCE. YOUR FRIEND, GOD BLESS HER, WHO IS A NINE YEAR SURVIVOR IS MIRACULOUS BUT EXTREMELY, EXTREMELY RARE, UNFORTUNATELY, FROM MY EXPERIENCE ACTIVELY WORKING AS AN ADVOCATE. PERHAPS YOU DON'T FEEL THAT TREATING TNBC WITHOUT CHEMO IS BETTER THAN CHEMO BUT THE OVERALL IMPRESSION THAT I GOT WAS THAT 
IS HOW YOU FEEL. I UNDERSTAND WHY YOU FEEL THAT WAY BUT NOT DOING CHEMO IS, IN GENERAL, DANGEROUS ADVICE AND CAN DO A MAJOR DISSERVICE TO OUR TNBC FAMILY. 
AS I MENTIONED ABOVE THERE ARE MANY WHO WERE ACTIVE ON THIS FORUM WHO I KNOW ARE DOING WELL BUT WE DON'T HEAR FROM THEM; SO WE DON'T HAVE THE FULL PICTURE. 
IN THE SAME WAY THAT I DON'T WRITE ABOUT ANYONE I AM HELPING, I ALSO DON'T WRITE ABOUT WOMEN WHO CALL ME 5, 10, 15 YEARS AFTER OUR LAST INTERACTION AND I REJOICE WHEN THEY TELL ME HOW WELL THEY ARE DOING. 

I TOTALLY RETURN YOUR xo AND PRAY THAT SOMEHOW, SOMEWAY YOU CAN CATCH A BREAK IN THE NEXT YEARS.

AT THE CORE OF ALL THIS I TRULY BELIEVE I UNDERSTAND YOUR FRUSTRATION AND I SHARE MUCH OF YOUR ANGST. IF I DID NOT RELATE TO WHAT YOU WROTE I WOULD NOT HAVE RESPONDED. I HOPE YOU TAKE MY WORDS AS CARING TOWARDS YOU BECAUSE THEY TRULY ARE.

WITH MY LOVE TO ALL HERE, INCLUDING YOU, MOUNTAIN VIEW,

STEVE




Edited by SagePatientAdvocates - Jul 17 2021 at 8:19am
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
Back to Top
Marymom View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2019
Location: Ny
Status: Offline
Points: 96
Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 3:28am
Steve,
Thank you…well said!  You helped me as I enter year four.  Both you and Donna…I love your informative posts that are always helpful and rooted in knowledge and hope.
All the science, all the technology and mix it in with hope, prayers and faith and we may have a new treatment on the horizon called - positive power infusion!  Single daily dose, self administered!  No co-pays and all insurance accepted!
I respect all the opinions and learn from both sides…but at the end of the day I am still very thankful for this site.  It has been a mentor and a friend to me through my cancer journey.
Godspeed to all here!
Back to Top
Marymom View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2019
Location: Ny
Status: Offline
Points: 96
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!

Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4711
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
Back to Top
Marymom View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2019
Location: Ny
Status: Offline
Points: 96
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!
Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4711
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13470
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

Back to Top
Marymom View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2019
Location: Ny
Status: Offline
Points: 96
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!
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1078
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
Back to Top
Liz37BA View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 04 2021
Location: Pennsylvania
Status: Offline
Points: 6
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.                         
Back to Top
Liz37BA View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 04 2021
Location: Pennsylvania
Status: Offline
Points: 6
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
Back to Top
Liz37BA View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 04 2021
Location: Pennsylvania
Status: Offline
Points: 6
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
Back to Top
 Post Reply Post Reply Page  <1 329330331332>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.