HonCode

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

View Poll Results: Would you like the Her2 Support Group to create a Memorial/Tribute page
Yes 40 76.92%
No 12 23.08%
Voters: 52. You may not vote on this poll

Reply
 
Thread Tools Display Modes
Old 10-09-2012, 08:30 PM   #21
v-ness
Senior Member
 
v-ness's Avatar
 
Join Date: Nov 2009
Location: western ma
Posts: 280
Re: How do you feel about a Memorial/Tribute Forum?

i think it is a good idea to have a memorial section. it could be located down at the bottom far from the Newcomer's Section and the Her2 group, Caregiver's Corner, etc. not easily found, not the first thing seen. my personal take is that those who have died deserve it. they probably gave a lot to this site to have become well-remembered. i find that when someone dies, people naturally respond with sadness and shock, but wouldn't it be lovely if there were a place where people could write their own eulogies and pay homage to that person's life. it wouldn't have to be about what kind of cancer, how big a tumor, what kind of treatment. it could focus on what we learned from knowing that person a little or a lot, the impact they had upon us, the positive attitude they may have had, the grace with with they lived. like a memorial service. in real life, we do not pretend people didn't die. they do, and they do more often with cancer.

it seems as though in a way, they drop from our ranks and are mourned on one thread about their death and then move on. a newbie perusing the site *will* find posts about who got their wings or who lost their battle if they do any kind of searches for information. they might find, as i did, someone who was really interesting and wonder where she went, like i did with julierene. the newbies are not spared the knowledge that people here die and it is reality, people die. why cloak that? if anything, as a newbie, i would have been very touched to see there is a community here that values their lost friends so much that they even do a tribute site. i would hope i could be part of that community and IF that happened to me, that i would be so well-remembered for something, anything.

many of those who have inspired me and my attitude have been some of the very people who lost their lives. you can't protect people. if that is a concern, then more people could work the Newcomer's Corner offering reassurance, guidance, help, someone to talk to. newbies have already thought about death the first minute they were diagnosed. it comes with this territory. to have someone tell them about Andi BB or christine and the many living with stage 4 and mets and the high rate of success with early diagnosis, that will balance out any memorial page, in my humble opinion. my cancer life began with a friend with triple negative BC and later brain mets. she died on my last day of chemo. because of her, i'd done frequent self exams and i attribute my early detection much to her. her loss was devastating, but i didn't leave the church thinking i would fall apart because of her death. if anything, i went forth more determined to live after listening to the loving memorials people shared.

just my nickel's worth.

valerie

do you really think the site would need permission from family to repost what the individual already posted themselves? it does not seem so, if we were not mentioning full names, just their handles here.
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
v-ness is offline   Reply With Quote
Old 10-10-2012, 06:28 AM   #22
rhondalea
Senior Member
 
rhondalea's Avatar
 
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
Re: How do you feel about a Memorial/Tribute Forum?

Quote:
do you really think the site would need permission from family to repost what the individual already posted themselves? it does not seem so, if we were not mentioning full names, just their handles here.
It's a problem only if the memorial site is a separate site (vs. a separate forum on this site). It's not that I think that anyone would object, but only that copyright law is pretty clear about what you can do with someone else's words. If this site had permissions like FB's (well, the permissions FB gave itself before the courts got involved), then it wouldn't be a problem, but it doesn't, so it is.

I'm not a lawyer, but I do try (not very ably, at the moment) to keep up with this area of the law.

Just so we're clear, I'm very much in favor of a memorial forum. My experience (many dead friends from the time when I participated in a high-risk sport) tells me that it is both comforting and healing. I just think it's important that it be done properly.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
rhondalea is offline   Reply With Quote
Old 10-10-2012, 03:56 PM   #23
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: How do you feel about a Memorial/Tribute Forum?

How about their picture or Avatar, name and date of transition? That's easy. We already have it, in a way. I think for those persons who would like to see this happen, a quicklink would suffice.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
KDR is offline   Reply With Quote
Old 10-10-2012, 04:07 PM   #24
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Re: How do you feel about a Memorial/Tribute Forum?

I think we're making this more difficult than it really is. We already post our tributes, condolences, sympathies, thoughts, feelings and prayers whenever we learn our sister got her wings right her on the 'her2group' forum. Perhaps we could just have a "Wings" forum/section to move the posts related to those fallen by this terrible disease. Or we could just post the date of death with their signature information. Do we know who is currently responsible for managing this site? And what it entails?
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 10-10-2012, 04:08 PM   #25
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Re: How do you feel about a Memorial/Tribute Forum?

KDR, ditto!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 10-14-2012, 05:20 PM   #26
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: How do you feel about a Memorial/Tribute Forum?

Becky,

I really like the ideal of a memorial "wall" that is a sticky here where we can go and post when we lose one of our own and where we can go post a funny story or even resurrect a favorite post by one of our fallen friends. Listen, it seems to me that we should do all we can to remember those who dedicated themselves to battling not only their personal illnesses, but shared in all of our battles. I never want to forget them.

Brenda Hutchinson was an amazing advocate for herself and for Her2. I remember one evening at a meet & greet thrown by Genetech at SABCS Brenda and I were seated next to one another chowing down when she said how she was debating whether to go chat up the Genetech rep that stood there in the room with us. She was bumping head long into opposition from the trial doc in San Antonio while she was desperately trying to get into their TDM-1 trial. There was an issue with an old spot on her MRI from a previous gamma-knife "tweak." I was surprised to see confident Brenda hesitate to go ask this person if he could help her move this doc to recognize it was only scar tissue showing on the MRI. Nothing worse than erasable docs!

I vividly recall Brenda bowing and inclining her head my way saying softly, "it's just that I am so scared." She was not referencing her fear of addressing the Rep, no, she was speaking of her fear of dying of cancer. Well, that was all I had to hear! I urged her to go with my favorite life-ism "nothing ventured, nothing gained." Up she popped and as I crunched on my chicken I watched in awe as Brenda turned on her substantial charm. I was on dessert when she flopped back down beside me grinning triumphantly from ear to ear. The rep was going to help her get into a trial in Denver, which as we all know did happen.

The point is that I observed Brenda meet docs, researchers, drug reps, politicians in her quest to get help in her battle against Her2. I remember watching her and thinking, "that's the key to self-preservation and self advocacy: getting them to REMEMBER YOU." I was powerfully struck by this revelation and I continued to observe Brenda and other stage 4 gals bravely reach out to those in the "know" and in positions to help. But let me stress, the first step is to shrug off that "diagnosis" tag that defines us as patients. If you want your Onc. to care about you the first goal is to get them to remember you, to see you as a person and not a diagnosis. I did that. I bet most of us have striven to do so. It is what Brenda did so well, she got them to REMEMBER her so they would want to help her get into a closed trial, or research more diligently "because you see there is that great gal with Her2 that I met once and I want her to live because she was terrific...."

It is my belief that because everyone whom we have lost to this disease fought so damned hard to stick around, to plow a way for those who have followed them, to bravely and humbly summon the nerve to ask, beg, and plead for help, they simply must not be forgotten by us! Five years from now I want the newbies on the site to be able to know that "crap on a crapstick" is a Brenda-ism and Brenda was fabulous, and brave, and amazing and I absolutely loved her. I did and I do.

Laurel
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
Old 10-14-2012, 05:48 PM   #27
rhondalea
Senior Member
 
rhondalea's Avatar
 
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
Re: How do you feel about a Memorial/Tribute Forum?

That was beautiful, Laurel.
rhondalea is offline   Reply With Quote
Old 10-16-2012, 10:36 AM   #28
Nancy L
Senior Member
 
Nancy L's Avatar
 
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
Re: How do you feel about a Memorial/Tribute Forum?

I think this site did a nice job doing something like this. If you are not aware of this organization dedicated to metastatic BC, I encourage you to see what they are about.

http://www.metavivor.org/AboutUs_Motivat.html
Nancy L is offline   Reply With Quote
Old 10-16-2012, 11:41 AM   #29
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: How do you feel about a Memorial/Tribute Forum?

NancyL -
All I could find in that site was the following:

http://www.metavivor.org/Awareness_InMemorm.html

which is basically a request for donations in the person's name (which has a short obit) and not a tribute page.

If you found something else, please give the exact link.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
StephN is offline   Reply With Quote
Old 10-16-2012, 01:28 PM   #30
Nancy L
Senior Member
 
Nancy L's Avatar
 
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
Re: How do you feel about a Memorial/Tribute Forum?

StephN
You have the right link. Sorry, i didn't mean to say this site would do the same thing as theirs but rather use some idea you think is appropriate. I like the picture and biography of what they did for the BC cause. It doesn't seem negative or scary which I know concerns some. Skip the donation piece for this site and maybe give a link to memorable posts made by the member over the years if not too much work
Nancy L is offline   Reply With Quote
Old 11-14-2012, 10:02 PM   #31
Adriana Mangus
Senior Member
 
Join Date: May 2006
Location: California
Posts: 668
Re: How do you feel about a Memorial/Tribute Forum?

Hi Everyone,

I'm all for it. It will be a loving and respectful way to pay tribute to all the beautiful Angels who no longer are with us.

I do, however agree with Stephanie, the decision would have to come from Joe's daughter- Debra.


Love,

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
Adriana Mangus is offline   Reply With Quote
Old 11-15-2012, 12:33 AM   #32
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
Re: How do you feel about a Memorial/Tribute Forum?

Laurel that was a lovely page and posts like that would be nice to see. I think it is comforting. That may seen strange but we need a way to say thanks and goodbye. we are like a family here. I think calling it wings or angels is nice also and maybe it would have a note: for seniors only.
__________________
sarah is offline   Reply With Quote
Old 11-24-2012, 05:34 PM   #33
Cathya
Senior Member
 
Cathya's Avatar
 
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Re: How do you feel about a Memorial/Tribute Forum?

Hi all;

I am not in favour of a Memorial as there are so many that would be lost in the process. This site has grown
in knowledge and concern as the members have expressed their views, experienced their disease and passed. Some were members who were loved and posted often and some passed by quickly and were gone. There must be a better way to remember all who were members here. I remember an Australian women (I hate to say I can't remember her name) who was very inspirational to me from years past. Would we remember her?

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 11-29-2012, 02:08 AM   #34
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: How do you feel about a Memorial/Tribute Forum?

Were you thinking about Kiwigirl from New Zealand?

http://her2support.org/vbulletin/sho...light=kiwigirl
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 12-04-2012, 07:25 AM   #35
pibikay
Senior Member
 
pibikay's Avatar
 
Join Date: May 2010
Posts: 432
Re: How do you feel about a Memorial/Tribute Forum?

Hema and I are for it/But let it be a part of this forum
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
pibikay is offline   Reply With Quote
Old 12-08-2012, 06:56 AM   #36
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
Re: How do you feel about a Memorial/Tribute Forum?

I'm still for it. Yes, Cathya you're right those who received their wings in the past won't be on the site unless someone makes a point to update them but we will remember many of them.
I would like to hear from a caregiver or family member about how they would feel. I know personally that if it was my husband, I would like to go to a section and add stuff and read nice things about him and read his postings but my husband would never visit the website so......everyone's different.
Another thought what about a post for those who've made it past 10 or more years??
health and happiness and to the end of seeing our sisters and brothers die from cancer
love sarah
__________________
sarah is offline   Reply With Quote
Old 12-12-2012, 09:06 AM   #37
Marlys
Senior Member
 
Marlys's Avatar
 
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
Re: How do you feel about a Memorial/Tribute Forum?

I, too, am really against doing anything contrary to Joe and Christine's wishes. I cry when my "friends" are going through the final stages of this disease because I remember what beautiful moments they have given me and I know where to find them again. I do not believe I would have joined this group if I had seen anything even resembling a memorial page. I have been on this site since 2005 and I love it. Please do not change it.
Love & Hugs,
Marlys
Marlys is offline   Reply With Quote
Old 12-12-2012, 03:50 PM   #38
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: How do you feel about a Memorial/Tribute Forum?

I'm in favour and love the idea and would echo Laurels thoughts, I think we owe our departed sisters some form of recognition as so many of them went through earlier drug trials etc to help those that would come after them.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 12-13-2012, 11:57 AM   #39
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: How do you feel about a Memorial/Tribute Forum?

Reading through these reflections is a fascinating exercise. We're all so different, and we each bring a unique perspective to the "big questions" about not just the meaning of this forum but the meaning of life, of suffering, of struggle, and of death.

I'd like it if we had a thread dedicated to honoring the lives and achievements and personalities of members who died. It would be great to have a central hub for anecdotes, insights, tributes, etc.

Newcomers need hope, of course, and encouragement. They need to know they have choices. They need concrete information and assistance. I think this site does that very well.

I also find a great deal of hope and encouragement for us stage iv folks, and, selfishly perhaps, I appreciate that. Many in-person support groups shy away from talking about death. And there aren't many stage iv groups. A significant percentage of people with HER-2 bc are metastatic at diagnosis. I was both a newcomer and stage iv. Everyone knows cancer is deadly. People who go looking for information and support are not the type to hide or deny. So, even newcomers, and even those diagnosed at early stages, probably need honesty and frankness about all the issues.

It's a support group. Everyone's idea of what that means is colored by what he or she needs at the moment, or finds helpful (or not), or expects from others. Each person uses this site in a self-directed way. Every thread is specific to certain groups of members. They don't click on the ones that don't appear relevant. To me, one of the best things about being in support a group is knowing I'm not alone. Right up there with that very high value is knowing I won't be forgotten. Having a way to remember and honor those who are no longer with us would serve both these values.

We're all going to die. Yes, it's sad for the survivors. (That's the only thing about my own death that bothers me. I wish I could shield my loved ones from the pain.) They suffer and mourn. But most of the time it gives their lives more depth and fullness than they would otherwise have had. I think awareness of our mortality is one of the most humanizing things about being human.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
Mtngrl is offline   Reply With Quote
Old 12-13-2012, 02:05 PM   #40
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: How do you feel about a Memorial/Tribute Forum?

Well, I put this sticky up because this subject comes up from time to time. I feel obligated to ask ALL OF YOU your opinions because it is our site and (as an aside only), I am on the Board of Directors of the Her2 Support Group. As such, the board wouldn't exist without all of you coming here, caring and sharing.

However, I am also just a member too. I haven't even voted yet. I put this up for you. When I put this up, I really did want a Memorial page although I think that decision must be made taking into full consideration of what you want. There are many things to ponder. Some of these things have been brought up on this thread.

We have had a hard year on this board. Two long term members who everyone knew, Brenda, and now Sheila have passed on. Emelie B, Krisvell and others. Being a member 8 years there were members many of you will never know but would have loved very much such as Tousled, Lolly, Lisa (Love and Light), SandyH, Shell, Lily from Equador. But there are new members who come for our love, support and friendship. In this thread, many state they may not have come back after coming on the first time and seeing a memorial page. Since Brenda and Sheila have just died, you can image what that page would look like just with them. So, as me, just good ole member Becky, I will tell you what I have been thinking about. The group's name is Her2Support group. It was founded to give support to breast cancer patients and survivors who are Her2 positive. At the time, and actually even now, we are different from other kinds of bc. Different (and new) treatments and different and new outcomes. At home based bc support groups, we may find that we are the only Her2+ one in the group. Not so here and this is why Joe Druther created this site. So we can find each other. We understand "Herceptin, Tykerb, Perjeta, TDM1" etc. If I haven't gone thru it, someone else here has and can lend a hand - the word SUPPORT shines through. This is what we are. This is what we do. It is clearer and clearer to me everyday that we are a family of close friends who never meet, may never even know what each other even looks like or even know each other's real name (my real name is Becky). A memorial page may be very frightening for a new member who NEEDS us and may not post nor return. How sad that would be. I will say one thing. In our birthday section, our Angel members still come up if they put their birthday in. That may be a good way to remember if someone wishes. Start a Happy Birthday thread and if there is a funny story to tell, tell it. Also, anybody can start a thread about "Remembering SandyH (and her green shoes)" or Tousled or anyone at all. I'm not sure.

I will still discuss this with the Druther girls in the New Year if a memorial page or something like it is what you want. And I will do this just like a Congressman votes for his delegates even if it is not his opinion. But as just Becky, I believe support and the love and caring we all have for each other (which is evident) is what Her2Support is all about. I wish all of you peace during the holiday season and love during this difficult time on the board.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Reply

Thread Tools
Display Modes

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 01:24 AM.


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