RISK OF RECURRENCE AFTER 2 YRS? |
Post Reply 
|
Page <12345 6> |
| Author | |
hummingbird10 
Senior Member 
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
 Post Options
 Thanks(0)
 Quote Reply
 Posted: Jul 07 2010 at 9:45pm |
|
Bonnie,
I did ask about the parp in one of the trials but was told that even with a
couple of nodes involved, the bc I have is not considered "mets." So, I don't
qualify for the open label trial with parp.
Tell Ashley I am rooting her on. She can do it. Go Ashley!!!!!!!!
Best,
Hummie
|
|
 |
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 08 2010 at 10:32am |
|
Hi all,
Here's a ques. to anyone who'd like to respond.
I know "we" are a "rare" group, but when you
do for chemo/appts. has anyone met another
triple negative patient to talk to? I haven't, and I
go to a fairly large center.
Thanks and best to all,
Hummie
|
|
|
|
|
denise07
Senior Member
Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 08 2010 at 10:39am |
|
I have a friend who had tnbc she is 8 years out, and another women I know is almost 2 years out!
|
|
|
|
|
The Texas Woman
Groupie 
Joined: Sep 07 2009 Location: Bryan Texas Status: Offline Points: 74 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 08 2010 at 10:48am |
|
Hummie, In the radiation waiting room at MDA this past month I met two: one young, black, but BRCA -, and the other young, Hispanic, BRCA +with mets to brain and liver (getting whole brain radiation, with chemo to follow after rads). Both were upbeat and doing very well. Those two were the only ones talking about it, at least. Of course one mostly sees the same people every day so who knows how many were there when I wasn't.
cher |
|
|
Dx: 7/09 TN IDC Stage llB, T2, N1, Grade 3 and associated DCIS, BRCA Neg, Taxol x 12, FAC x 4, left mastectomy March 2010
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 08 2010 at 11:30am |
|
Hi Hummie,
I never met another tnbc woman in the infusion room but then I didn't always ask others about their type of bc. We mostly talked about "light" subjects and tried to find some humor in the day. My bf from 7th grade was dx with tnbc about 14 months ahead of me. She's the only other tnbc person that I've known personally. 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 |
|
|
|
|
Genie
Senior Member
Joined: Apr 30 2008 Location: San Antonio Status: Offline Points: 390 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 08 2010 at 2:18pm |
|
Hummie,
Like Donna, I never met any other tnbc's in the infusion room. However. my sister & my niece both are tnbc. Genie |
|
|
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC |
|
|
|
|
TNBC_in_NS
Senior Member
Joined: Jul 26 2009 Location: NS Canada Status: Offline Points: 2028 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 08 2010 at 2:35pm |
|
Hi ladies, your question regarding meeting other tnbc patients for me is no other than this site and someday it is my wish that we all meet at a central location to celebrate how far we have come and brainstorm for the cure! Although, my sources at the hospital tell me that there are one-two a week diagnosed.!!!! They are more than happy to have the information I provided i.e. the brochures, FORCE, LLBC, etc. What is going on with this subtype of cancer??? When will we have the cure???
So many are not making it, too many newly diagnosed. Who do we need to talk to put this research on the hot burner?? (your sister on the journey)
Helen in NS
|
|
|
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
|
|
|
|
|
TNBC_in_NS
Senior Member
Joined: Jul 26 2009 Location: NS Canada Status: Offline Points: 2028 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 30 2010 at 11:19pm |
|
Just an update about knowing other tn's! My daughter's husbands' sister age 56 was just diagnosed last week with tnbc IDC. The shock is just setting in so when I hear more, I will keep you posted. Please keep her in your prayers. Thanks, h.
|
|
|
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 2:24am |
|
Oh Helen, I am so sorry. When is this ever going to end? To many women. . . It just makes me so sad. We need more research and a cure!
|
|
|
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 |
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 8:10am |
|
Thank you ALL for answering my question about meeting other TNBC patients. So far I have
not met one. My request to the NCI to have someone with it call me has not happened.
(probably multiple reasons I imagine).
I firmly AGREE with our sister in NS---- what do we need to do to RAISE awareness?????!!!!
They (FDA) take our "Avastin" now what do we have? It's time (pasttime) to organize,
picket, legislate, meet, whatever it takes.
I had thought earlier that we could start with T-shirts and caps with the Triple Ribbons
and something like----"where's the research/where's the cure"---our sisters have waited LONG
ENOUGH. I thought about wearing something like this to the chemo sessions----what do you
think. Is this too "in your face" ?
Sorry for the caps, but frustration/anger is brewing in this "bird"
Hummie/Hummingbird10 in Ohio
|
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 8:13am |
|
Helen,
I am sorry to hear your family member recently diagnosed. We here are all sad/
and MAD! Where's the cure? Millions spent on research, come on USA we can
do better!
One mad "Hummie"---and you know how lethal hummingbirds are with
their "beaks"---look out "we're coming"
|
|
|
|
|
kimm
Groupie
Joined: Jun 03 2008 Location: Amherst, New York Status: Offline Points: 49 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 9:10am |
|
Dear Hummingbird,
I do Ultrasound for a living and do Sonograms every day on women who have "dense breasts".
From what I understand, dense breast tissue is essentially a normal finding on the majority of women in 30's and 40's. After that the dense breast tissue begins to be replaced with "fatty" breast tissue.
Having dense breast tissue in itself does not mean you are at higher risk for bc. What it does mean is the Radiation used to image your breasts in a Mammogram has difficulty penetrating that kind of tissue. If the Radiation does not penetrate all the way through, masses will not show up.
I found a lump (3cm) at age 44. I had a normal Mammogram 6 months earlier but did have dense breast tissue. The MD's agree that that the cancer was undoubtedly there at the time but was unable to be visualized due to the dense nature of my breast tissue.
Where I work, the Radiologists automatically recommend an Ultrasound or MRI as an alternative if the patient has dense breasts. Unfortunately where I had my Mammo, they did not.
Best wishes,
Kim
|
|
|
Diag 2/14/07
3cm Lt Breast grade III, stage III. Bilat Mastectomy A/C x4. Taxol x12 Rad x6 wks. |
|
|
|
|
suzannek
Groupie
Joined: Oct 16 2008 Location: United States Status: Offline Points: 67 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 10:30am |
|
Concerning breast density and breast cancer: Dr. Susan Love addresses this issue in her book. There is a strong association with dense breasts (especially after menopause) and BC. Dense breasts are associated with higher estrogen levels and higher estrogen levels are associated with breast cancer. She warns if you take replacement hormones and your breasts get denser, watch out! However I don't think that is true for TNBC as our cancers don't respond to estrogen.
Also I always thought dense breasts were 'good' in that they weren't saggy and thin. But they mean 'radiographically dense' which makes it hard to tell breast tissue from tumors.
In one of the many papers Pam posted, the median time to recurrence for TNBC independent of stage is 18 months. I didn't see that paper about Stage 2a being 24 months but I find that interesting as I was Stage 2a and it has been almost 23 months. No sign of recurrence so far but I am only checked for local recurrences. But as DMWolf pointed out, the longer you go, the more your risk drops.
|
|
|
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3 Lumps removed 10-07-08, 10-27-08 nodes clean: Began chemo 12-2-08 4xAC, 4xT dose dense 3 weeks radiation http://suzannekesten2.blogspot.com/ |
|
|
|
|
Lorene
Senior Member
Joined: Jul 10 2010 Location: Alabama Status: Offline Points: 211 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 11:16am |
|
Dear all,
I have a neice who had tnbc 1 year before myself. She is now almost 10 years out, I'm almost 9 with no recurrene for either of us. Praise the Lord! I was 59 yrs old at time of Dx, she was 42. We're different in our approach to prevention. I'm very nutrition-minded, health-oriented, avoiding preservatives, additives of any kind. Also, avoid chemicals in any products I use etc. She is not,but focuses on enjoying life to the fullest.
Apparently, there is no one answer.
Lorene
|
|
|
dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
|
|
|
|
|
trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 1:45pm |
|
Dear Helen,
I am so very sorry to read about your sil's sister being diagnosed with TNBC. She will be fortunate to have you close by to help inform and support her. Bless her heart.
|
|
|
Stage 2 2003
Stage 1 2007 BRCA 1+ |
|
|
|
|
trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 1:47pm |
|
Lorene, thank you for sharing..
It is so encouraging to read how long you guys have been out from treatment!
No at this point I don't think there is any one answer. We all have to do what we feel
is best.
|
|
|
Stage 2 2003
Stage 1 2007 BRCA 1+ |
|
|
|
|
trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 1:56pm |
|
Hi Hummie, we feel your frustration believe me! No I do not think wearing a t-shirt like that would be to "in your face". We need to get this out in everyone's face so that they will understand how nasty TNBC can be.
Thank heavens for this Foundation forming and increasing awareness, research, etc., to help us, it is a huge huge gift.
The TNBCF does have a link near the top where you can shop for items with their logo. I have bought a shirt and hoodie, both of which have been very nice.
I bought another shirt one time, it expressed my feelings about Cancer in two words. I have become less shy after going thru all of this nightmare. I decided to get red with white letters and proudly wear it. I want people to read my shirt. Nothing profane in the words just loud and clear! Edited by trip2 - Jul 31 2010 at 1:59pm |
|
|
Stage 2 2003
Stage 1 2007 BRCA 1+ |
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 2:16pm |
|
Kim, I think your situation and mine have a lot in common. I strongly believe that the radiation
did not see the mass in my left breast. I do remember asking for an ultrasound or MRI for
people with density and was told it wasn't necessary---that was a lie in my opinion. I did
call my "former" ob's office and gave the nurse an update of what has happened to me since.
They need to be educated from patients sometimes as well. This was also the dr. who put we
on HRT since I had had a hysterectomy, etc. It was an HRT compounded based on "spit test"
results. Who knows if this caused any of this? We will never know.
Hummie
|
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 2:20pm |
|
Hi Pam,
Thanks for the permission to wear the message. I think I know the two words that
you wear---excellent!!!! Yes, we need to support the TNBCF and the hoodie is definately
very cute. With fall coming up, that's a good idea.
Pam, where did you get your "letters" for the shirt?
Thanks,
Hummie on the Cure Path
|
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Jul 31 2010 at 2:25pm |
|
Lorene,
Thank you very much for sharing the good news of out of treatment and feeling good.
It is inspiring.
Can you tell us more about where you shop or what to buy to avoid additives and preservatives?
Would that be all "organic"?
Thanks,
Hummie
|
|
|
|
Topic Options|
Post Reply
|
Page <12345 6> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |