Go To Main TNBC Website


  New Posts New Posts RSS Feed - Survivor Contestant Dies of Breast Cancer
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Survivor Contestant Dies of Breast Cancer

 Post Reply Post Reply Page  12>
Author
Suzanne View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 13 2007
Location: San Francisco Bay Area
Status: Offline
Points: 191
Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post Topic: Survivor Contestant Dies of Breast Cancer
    Posted: Jan 27 2010 at 11:45pm
from the Susan Love website: 
"Remembering Jennifer Lyon
We are very saddened by the recent loss of our dear friend, Jennifer Lyon. Many of you knew Jennifer because she was a contestant on Survivor: Palau. What you may not have known is that she also was a friend and supporter of the Dr. Susan Love Research Foundation and a strong breast cancer advocate. We will miss her smile and her enthusiasm for life."
 
Does anyone know if she was triple negative? 

 
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
Back to Top
Suzanne View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 13 2007
Location: San Francisco Bay Area
Status: Offline
Points: 191
Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2010 at 11:47pm
Here's a link to an article about her. http://www.people.com/people/article/0,,20338298,00.html
She was 37 years old.
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
Back to Top
scared View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 09 2009
Location: Seattle
Status: Offline
Points: 224
Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2010 at 11:58pm
To get the cancer at such a young age is terrible, I never watch the survivor series or any reality tv, but it sounds like she loved life and fought the battle of a lifetime and went out with style and grace.  I hope that something gets done about insurance issues.

Our treatment costs us so far over $350,000, I don't have a high paying job but I do have insurance, I feel bad for those that do not have it.  There is a statistic that I read that no matter what stage your cancer is in if you do not have insurance survival rates drop to 52%.


Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
Back to Top
SapphireSkies View Drop Down
Groupie
Groupie
Avatar

Joined: May 24 2009
Location: Madison, Wisconsin
Status: Offline
Points: 67
Post Options Post Options   Thanks (0) Thanks(0)   Quote SapphireSkies Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 1:08am
So heartbreaking. :(
 


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.
Back to Top
tailormade View Drop Down
Groupie
Groupie
Avatar

Joined: Dec 04 2009
Status: Offline
Points: 77
Post Options Post Options   Thanks (0) Thanks(0)   Quote tailormade Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 9:58am

Jenn Lyons does not seem to have been triple negative.  I read she was on Tamoxifen.  I know triple negative is considered a really agressive form of breast cancer and that it has fewer treatment options (hopefully that will change soon), but it is possible to have a really agressive form of hormone receptor cancer.   I am triple negative and know two people who were diagnosed around the same time as me, both farther advanced than me, both hormone positive and her2 negative.  One of the women was diagnosed close to stage iv and has a very agressive cancer.  She was getting regular checkups and mammograms too.  The other is stage 2b and has declined chemotherapy because she sees her cancer as prognostically favorable, even though it had spread to her lymph nodes and was a T2 tumor.  My triple negative was really fast dividing but hadn't done anything (yet, and hopefully now never will) and was way smaller than they expected.  The doctors were surprised (in a good way). 

Robin Roberts (from Good Morning America) had triple negative breast cancer, and she was recently featured in a cancer magazine that I read during a follow up at the radiation oncologists.  So far she seems to be doing well.  People do survive triple negative breast cancer, the overwhelming majority who are diagnosed in the eary stages.  I think women who are newly diagnosed would benefit from hearing that there is hope and survivorship for triple negative breast cancer on sites like this.  Why isn't there more about survivorship on this site?  I am not newly diagnosed, but I know what it is like to be newly diagnosed and to go on the internet and get the inaccurate impression that no one survives this disease. 
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 11:30am
There is lots and lots of discussion about survival odds here, Tailormade, so this information is frequently disseminated.  But I know what you mean about TNBC making a bad 'first impression' when someone first starts to search.   The problem isn't so much our site, as the boilerplate framing of the disease in research publications (the word 'aggressive' is used a lot!).    I guess this is because the comparison isn't between TNBC and, say, pancreatic or lung cancer, but between the worst TNBC cases and the least deadly of the ER+ cancers.   This is done in part to produce drama and create an attitude of urgency, both for research justification and funding.  Research culture is strange :). 

Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
hhfheidi View Drop Down
Senior Member
Senior Member


Joined: Oct 02 2009
Location: Earth
Status: Offline
Points: 148
Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 1:10pm
tailormade,

I have always found this site to be more scary than breastcancer.org's site. I'm not sure why that is. Perhaps it is because this is the site I found first when I was at my most panicked and scared. Now however, I spend more time in BC.org. For some reason I find it more balanced, maybe because I can read about lots of other topics beyond TNBC. I also find it easier to navigate and find things. FWIW.

BTW, if you read the article on Jenn Lyons you will discover that she neglected her lump for some time.
Back to Top
scared View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 09 2009
Location: Seattle
Status: Offline
Points: 224
Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 1:26pm
I don't think this site is "scary", I find that it is made up of real people dealing with this terrible diagnosis and how they and those that love them cope with it.  Often times I find encouraging and uplifting stories here and good information and help.

True, the site could stand a  bit of a re-make and attempt to make it easier to navigate but overall I give it great marks.  We are dealing with serious issues and sugarcoating it will not make the reality of TNBC less dangerous than it is.  

I do not dwell on negatives instead I remain optimistic for the best possible outcome but the reality is still there because breast cancer is the second leading cause of death to women.  This site unites those in the battle, it inspires with hope, love, and prayer reaching out to everyone regardless of situation or need.


Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
Back to Top
SusanE1104 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 24 2009
Status: Offline
Points: 436
Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 2:23pm
I think this site is fabulous.  I found hope here that I didn't have before.  Most importantly, I learned about my disease!  Some members are extremely knowledgeable.
Susan
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra
Back to Top
hhfheidi View Drop Down
Senior Member
Senior Member


Joined: Oct 02 2009
Location: Earth
Status: Offline
Points: 148
Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 2:51pm
 I'm not saying there aren't knowledgeable people in here or that anybody is sugar coating anything. There is a ton of good information in this site. I am merely stating my personal observations and preferences, as we all do. As I already noted, my feelings may be entirely a function of where I was in my diagnosis & treatment when I discovered these sites. Timing, as they say, is everything.
Back to Top
rena View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 06 2007
Location: United States
Status: Offline
Points: 181
Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 3:00pm
When I was diagnosed, there was no such thing as a triple negative diagnosis. But I was ER/PR-negative, and with that and my young age, I was told that my cancer was aggressive. I also had 22 positive lymph nodes. About six months after my diagnosis, a friend's mother was diagnosed with ER/PR-positive breast cancer. Her tumor was smaller than mine, and she had two positive nodes. She died two years later, and here I am after 23 years. My oncologist believes that I was triple negative, although had I actually been ER/PR-negative and HER-positive (with no Herceptin to treat me with), my prognosis probably would have been even worse than it was. My point: I think being terrified by a triple neg dx is understandable, but if we had longer-term statistics--i.e. could know how many women diagnosed twenty-plus years ago, before there was knowledge of HER, actually were TN, we might find that the survival rates are better than we sometimes think. I wish there were a way to know for sure. I see a lot of positive and hopeful stories on this site. 
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
Back to Top
Terje View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 07 2009
Location: San Jose
Status: Offline
Points: 215
Post Options Post Options   Thanks (0) Thanks(0)   Quote Terje Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 3:13pm
Originally posted by rena rena wrote:

My point: I think being terrified by a triple neg dx is understandable, but if we had longer-term statistics--i.e. could know how many women diagnosed twenty-plus years ago, before there was knowledge of HER, actually were TN, we might find that the survival rates are better than we sometimes think. I wish there were a way to know for sure.


This is exactly why I believe we should now be taking genetic sequence tests of all the tumors we extract from people as well as an unmutated sequence from the individual it was taken from and storing the data in a huge public database. And maybe even keep live frozen samples of the tumors for future experiments.

If this policy were started 50 years ago (I guess back then it would be tissue samples only) we could now be doing all the genetic sequencing and figure these things out. I also believe science would advance more quickly with all the extra data that would be available.

I wonder how much it would cost to do such a thing. I do know that right now they do store certain tumor cell lines for experimentation, but I don't know how many they have. In the BSI-201 trial I read that they'll be storing tumor samples from all the participants for future experiments. I'm assuming they'll use them to try to determine the difference between the tumors where BSI-201 works and the tumors where BSI-201 doesn't work and probably try different drugs on the ones where BSI-201 has no effect.
Back to Top
Terje View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 07 2009
Location: San Jose
Status: Offline
Points: 215
Post Options Post Options   Thanks (0) Thanks(0)   Quote Terje Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 3:23pm
Originally posted by hhfheidi hhfheidi wrote:

Timing, as they say, is everything.


I thought first impressions were everything...

I suppose if you start off with very positive expectations, learning that things don't look as good as you thought would leave you with a negative impression and feeling, while if you originally have very negative expectations you might see hope in discovering that things aren't as bad as you thought.

Where you are in your discovery of all this new information when you happen upon this site will have an impact on that first impression. So I guess timing has quite an influence on that first impression.
Back to Top
hhfheidi View Drop Down
Senior Member
Senior Member


Joined: Oct 02 2009
Location: Earth
Status: Offline
Points: 148
Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 5:12pm
rena-- you are so right about the stats, especially with regard to the HER2+ element. When I made that connection (that the stats may really not be all that applicable) I felt so much better. In fact, it was probably a turning point in my feelings/fear.

Terje-- exactly my point, thank you. When I discovered tnbc.org I was at the apex of my fear; everything I read was terrifying. By the time I discovered BC.org I had settled down considerably and had a much better perspective on what I was dealing with.

Bottom line is I check both sites daily to continue to learn, and for that I am grateful.
Back to Top
scared View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 09 2009
Location: Seattle
Status: Offline
Points: 224
Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 5:55pm
I am just glad we are all here....does anyone want some coco?
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
Back to Top
rena View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 06 2007
Location: United States
Status: Offline
Points: 181
Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 6:21pm
Scared, can you spike my cocoa with something a little stronger? It's been a rough day. Terje, I think your idea for a huge database makes so much sense. After I tested positive for BRCA2, my oncologist contacted the hospital to see if they still had my tumor sample. It had been about 18 years and of course it was gone. It would have been so interesting and enlightening to run some of the modern tests on the sample. It might also have suggested something about the efficacy of the type and duration of chemo I received. But we'll never know. 
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
Back to Top
SapphireSkies View Drop Down
Groupie
Groupie
Avatar

Joined: May 24 2009
Location: Madison, Wisconsin
Status: Offline
Points: 67
Post Options Post Options   Thanks (0) Thanks(0)   Quote SapphireSkies Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 8:38pm
I am glad we are all here too, Scared. I'll take some please! :)
 
And Rena, your post and story is very inspiring - thanks so much for sharing. Congrats on your 23 years (and many, many more) of survivorship! Big smile
 


Edited by SapphireSkies - Jan 28 2010 at 8:42pm


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12702
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 9:12pm
Originally posted by Terje Terje wrote:


This is exactly why I believe we should now be taking genetic sequence tests of all the tumors we extract from people as well as an unmutated sequence from the individual it was taken from and storing the data in a huge public database. And maybe even keep live frozen samples of the tumors for future experiments.

If this policy were started 50 years ago (I guess back then it would be tissue samples only) we could now be doing all the genetic sequencing and figure these things out. I also believe science would advance more quickly with all the extra data that would be available.



I saw this article about the genome project with St. Jude's and Washington U.  Is this the type of study you're talking about?

http://www.cancer.gov/ncicancerbulletin/012610/page2
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
rena View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 06 2007
Location: United States
Status: Offline
Points: 181
Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 11:39pm
Sapphire, thank you for your kind words. They mean a lot to me. My wish for everyone is the same longevity I've had.

Donna, that's an interesting article. I wonder if there are any studies like underway for breast cancer. It makes so much sense.
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
Back to Top
Carol (Tenn) View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 06 2009
Location: Paris,Tennessee
Status: Offline
Points: 2707
Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2010 at 12:17am
Good evening everyone,Hug
I just thought I'd add my two cents worth...I love this site...I wish I had found it sooner. I was already finished with tx and could have used all the knowledge and advice when it all started. These people are like family and encourage and support each other.
I took it upon myself to start the Spiritual Support thread. It seems to doing well with well over 2500 hits. I hope and pray it has helped someone as much as it helps me.
We've read here about victories large and small, from ins woes, scans, tests of all kinds to surviving years after dx. Occasionally we hear sad stories too but that's just the nature of this beast.
Hope you continue to check in and check us out at Spiritual Support if you feel the need.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
Back to Top
 Post Reply Post Reply Page  12>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.