HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 11-16-2007, 09:53 PM   #1
Cathya
Senior Member
 
Cathya's Avatar
 
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Talking Three Year Anniversary.....NED....Fundraising Idea

My operation was either the 15th, 16th or 17th of November, 2004....I just can't remember so here I am right in the middle ....... celebrating my third year NED.

I have to thank everyone here for having three wonderful, calm, thoughtful, "connected" (my children are grown and gone now and I live alone but am never lonely when I can turn to this site...day or night....and I do!!!) years. I have learned so much about this disease and this knowledge has comforted me through many fears. I have found it difficult to watch so many of our beloved sisters pass during these years and remember well their posts.....sharing and caring for others.

I mentioned my fundraising idea in the title so that perhaps we could get some discussion going. I would love to see a documentary DVD made of this site containing interviews with Christine and Joe (natch), survivors, Dr's .....including Dr. Slamon of course. This documentary could be shown on TV but also sold on the site and elsewhere to raise funds for Her2support to direct as they wish. I think this would be much easier to produce than a book actually and perhaps there are some on the site who have some special knowledge about doing this. Not to be morbid but I believe people live Christine, Joe, Dr. Slamon and others on the site MUST be interviewed and recorded for history now.....you just never know what the future holds.......

love to you all,

Cathy
__________________
Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


Cathya is offline   Reply With Quote
Old 11-17-2007, 05:44 AM   #2
Sheila
Senior Member
 
Sheila's Avatar
 
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Cathy
Congratulations of 3 years dancing with NED!!!! That gives such hope to so many of us.....may you have your dance card filled forever with NED!!!!!
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
Sheila is offline   Reply With Quote
Old 11-17-2007, 09:24 AM   #3
CLTann
Senior Member
 
Join Date: Oct 2005
Posts: 476
There are real reasons for celebrating 3 and 5 years survival. Congrat. You both have done real well and set good examples in showing others that hope is always there.

As to making a video as a way to raise funds, the alternate way is to talk a major network, such as NBC, PBS, Fox, CBS, ABC and others, into spear-heading such a topic. The cost and time required to undertake a short video is beyond the reach of most ordinary people or group. I don't want to throw cold water to a hot idea, but my own view is that such a project is beyond the capability of this HER2 group. Our group, as it is now, serves the good purpose for us to learn, get together, console, encourage and empathize from people who have the common enemy.
__________________
Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
CLTann is offline   Reply With Quote
Old 11-17-2007, 10:04 AM   #4
Cathya
Senior Member
 
Cathya's Avatar
 
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Ann;

I know it sounds like such a big deal but I don't think it has to be. There is a young lad (19) in my small town who produced a DVD on the Seaway Project (St. Lawrence River). He wrote a script, interviewed people and recorded this using digital equipment, had it edited (by a pro in a slightly larger town...Cornwall) and had it produced in a very professional looking cover and case. It sells well and tells a good story. I agree it would be wonderful if one of the big networks produced this but I think that is not the only way. My concern is actually recording the ongoing history of our struggle and those involved now....while they're still here with us...and remember...lol. Look at how much has changed in just a few years.

Thanks so much for your thoughts,

Cathy
__________________
Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


Cathya is offline   Reply With Quote
Old 11-17-2007, 10:21 AM   #5
madubois63
Senior Member
 
madubois63's Avatar
 
Join Date: Feb 2005
Location: LI, NY
Posts: 660
I used to work for a printer that prints the inserts for DVD's, CD's and cassettes. Many film students will give their left something to produce a project like this. My sister is a designer, I'd offer her services, but she's the one with a three year old twins and a full time job. I am sure if I twist her arm, I could get her to design something if need be.
madubois63 is offline   Reply With Quote
Old 11-17-2007, 01:44 PM   #6
Mary Jo
Senior Member
 
Mary Jo's Avatar
 
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
Hi Cathy,

Can't offer any advice to your fund raising idea (although if it becomes a reality I think it would be AWESOME) BUT I can offer my HUGE CONGRATULATIONS to you on reaching 3 years NED. That is simply fabulous and I know how happy it must make you.

May NED be something you "dance" with for many, many, many more years.

God's Peace "sister!"

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
Mary Jo is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:41 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter