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Old 11-21-2009, 04:59 AM   #1
RhondaH
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Exclamation I'm back (sorry to those of you that were glad to see me go)...but I'll be gone again

First of all, I TOTALLY agree with Debbie L. on ALL counts. I ALSO felt that Joe's comments were "political" based on the "add on's". I'm sorry but, while "coincidental" there has been NO proof that this info came out PURELY (or NOT purely) by the leftists. I know I was ONLY trying to provide INFORMATION (nothing about politics in it, not to mention to provide a more detailed POSSIBLE, UNPOLITICAL reason for the guidelines) and being that I offered no "comment" (I've gotten beaten up before on this board for offering an article, but no comments...I found early on that if I made a mistake, I would soon hear about it and not always in a "polite" way, this is why I stopped offering comments or "briefings" on what I posted, I wanted the reader to make their own decision) on what I READ, I was "trying" to keep my political views out of it, but soon found that unless I came out with daggers, I was a "traitor". Brenda, I don't appreciate the "snide" remark about the unregistered "cowards"...if I have something to say I'll PUT my name on it AND I feel sorry for whoever it is, as there is NO WAY I would want to join a group that would beat me up MERELY for sharing information. I don't know the LAST time you posted ANYTHING that didn't add a comment about your political view. Also your right, now everything we READ has been politicized and the NYT is EXTREMELY leftist...I would be FAR better informed by watching FOX. I find it amazing that EVERTHING in our life has become political and what I find even MORE disheartening is that MERELY because I was only trying to provide a DIFFERENT opinion (not everyone else's opinion and I still don't even know if it is MY opinion as I am ONLY gathering info to form an opinion... I learnt a long time ago to gather as much info as possible and to CALM down before jumping to a rash in judgement...this is why on many things I wait 24 hours before punishing Tony as I don't want to have to take stuff back later) I feel so ALIENATED (some, but not all) by the HER2 group that I have loved for almost 5 years and PRAY that I never will have a need to come here again as right now, I'm not feeling very welcomed. I will continue to pray for you all and may all of you live to be a happy healthy 100 years old. Take care.
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 11-21-2009, 05:30 AM   #2
Ellie F
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Hi Rhonda
I have just read you post with sadness.
This board unites us all through a common struggle against a dangerous enemy.
Everyones contribution is valuable in a different way and I believe the only way forward for the world is that we embrace these and move on.
I hope you will reconsider your decision to leave the board.
Ellie
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Old 11-21-2009, 08:04 AM   #3
swimangel72
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Oh Rhonda - I'm so sorry you're feeling upset! I just posted a response to Debbie in the other thread - I'm so grateful for EVERYONE's opinion here and truly believe that all this renewed attention towards BC will ultimately help all of us! Controversy is good - stir the pot I say - and something good will rise to the top. We all just need to play nice in the sandbox here!

Perhaps I'm just a Polly-Anna wearing rose-colored glasses - but Rhonda, please don't leave - I know I don't post much here at Her2 but I love all my sisters here and cherish your experiences and wisdom.
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Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%

Last edited by swimangel72; 11-21-2009 at 08:27 AM.. Reason: add an emoticon
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Old 11-21-2009, 10:01 AM   #4
hutchibk
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Hi Rhonda - Nothing underhanded or devious intended by what I posted, so it wasn't snide. Snide in my book is an unregistered guest who demeans and mocks without showing their face. Rhonda, with my eyes, I have seen no posts here that have beat you up personally for posting anything. I consider your links and threads informative. It is perfectly fair and expected for folks to offer a dissenting opinion from the experts and from each other. My gosh, we don't all walk in lockstep. But unless I am missing something, I have not read where one person beat up on you at all. You however did fallaciously accuse me of something that I am compelled to respond to. I do not ever post my political views here, nor do I demean or mock. I have included in a post a time or two about how differing philosophies play into the health debate in my opinion, and I have posted my views about how devastating the trumped up and expedient "healthcare overhaul" will be in my opinion, but my posts never include derogatory words or opinions about ideologies, political parties, left vs right, liberal vs conservative, etc. I NEVER ever go there in this forum. You must be thinking of someone else. And as this is an archived forum, it is very easy for me to support myself on this point. There are some who bleed their politics whether or not they mean to, and others who strive to keep it reined in and appropriately undramatic and unemotional. I prefer and strive to be the latter here (perhaps not perfectly, I condede) and based on your above post I would guess you prefer to be the former. Also, it's very odd that you took my opinion of the NY Times well documented plagiarism and fabrications over the last several years as a personal attack on a political ideology in favor of a different news source's perceived political bias. Wow, that's quite an exaggerated stretch. I never mentioned bias, I mentioned plagiarism and fabrication. Be careful of reading into something with your own filters on... I don't put much stock in either, I gather my info from a multitude of sources. I just don't read the NYT much because I quit trusting it years ago for various reasons.

What a strange post my lady. But if you need me to be your punching bag, go for it. I don't get offended by anything... I can take it if it makes you feel better and helps you release some pent up energy. I hold absolutely no ill feelings toward you even if we disagree about something, so punch away. I'll duck when I can and just absorb all the other blows that I don't see coming.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 11-21-2009 at 03:41 PM..
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Old 11-21-2009, 10:50 AM   #5
Barbara H.
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

HI Rhonda,
I'm sorry you are upset, Rhonda. I consider you a very valuable member of this site and hope you will continue to visit and offer your insight. I don't pay too much attention to the political aspects and the posts that deal with what is going on with health care. I therefore am not aware of why someone may be upset with you. All I know is that I consider the HER2 Website to be pretty safe. It took me a while to join. I won't join any other forums and I certainly don't have facebook. I also don't post that often because I just don't have the time due to my work and family. On August 26th I became a grandmother to a beautiful baby girl. I never thought I would see that day when my daughter married five years ago this past summer. I was diagnosed with Stage 4 in May 04 and it was everywhere including my brain. And here I am today still working and doing well. Although I do not respond to every post, I care about the HER2 members , think of everyone often, and feel sad when someone is doing poorly, or doesn't make it.
Please stay here. You can't imagine how many people care about you and would miss you if really decide to leave.
Best wishes,
Barbara H.
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Old 11-21-2009, 10:53 AM   #6
Faith in Him
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

I'm sorry that your are feeling bad, Rhonda. I personally do not keep up with the news as I should. Because of that I like to read different points of view. I remind myself that we have one enemy here and it's Breast Cancer.
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 11-21-2009, 11:30 AM   #7
Joe
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Rhonda,

Your decision to leave is exactly what I wished to avoid.

I am personally disheartened as this support group represents eight years and countless hours of work both by myself and others who have volunteered to assist our organization and to leave it under these circumstances questions if our efforts are worth the sacrifice.

To address the issue at hand:

1. I personally know Dr. Love and am keenly aware of her devotion to the eradication of breast cancer. I read her explanation and do understand why she took her position. A carefull reading of the guidlines is required, not just a 30 second sound bite from CNN. Wheter I agree with her or not is a different story.

2. I mentioned the NBCC only as a point of information that another organizaton had also backed the proposed guidelines.

3. I am not a proponent of government intervention in my life other than what is granted in the Constitution. I am the product of parents who were very wise who lived by the rule: "God helps those who help themselves". My father lost his mother at age 3 from thegreat flu epidemic and his father was killed in a coal mine accident when my dad was 14. At that point he had to drop out of school as he was responsible fo the sole support his stepmother and 3 younger sisters. The year was 1928. There was no social security, welfare or aid to dependent children. Yet the family survived.

4. I am personally disillusioned with the politicians of both parties who use my tax money solely to perpetuate themselves in office. They no longer represent my best interests or the interests of my family. Most of the problems that I encounter in helping our members can be traced to underlying government regulations.

5. I do not understand the urgency of healthcare reform that it has to be rushed through congress without proper congressional hearings with input from the medical, insurance and patient communities to identify and address each problem in the system and deal with each problem individually. If this proposed legislation is so great, then why was the bill written in secrecy and why did members of congress exempt themselves from the provisions of the bill?

WarmestRegards to all
and thank you for letting me vent.

Regards
Joe
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Old 11-21-2009, 12:03 PM   #8
hutchibk
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

And for the record, I TOTALLY agree with JOE D. on ALL counts.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 11-21-2009, 12:11 PM   #9
Ruth
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

????
What is going on? Rhonda...we need you!
I have thought about leaving before because I didn't feel that I had much to offer...not too current on trials or treatments but then I feel the pull of helping the newly diagnosed or someone having a hard time with hope and support. You have done nothing but support and help others!
Sending you lots of hugs ~ Ruth
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[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~

Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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Old 11-21-2009, 03:31 PM   #10
Bill
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Joe, thank you for your post. I agree, whole-heartedly with your points 3,4, and 5. #3, in particular. Our Federal government, slowly, but surely, bit, by bit, regardless of which party happens to be in office, is robbing us of our freedoms and rights.
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Old 11-21-2009, 04:21 PM   #11
chicagoetc
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

I'm with Sheila on the "To ALL - Please Remember Our Focus Joe". It'd be good to focus on the support and the reasons we are here. We obviously have widely diverging views on what is happening with health care in general in the US as well as on the insurance industry. And obviously each of us has strong beliefs that we're the ones with the obvious/logical response. I'd be glad if this thread and others that are controversial right now were just deleted or at least stopped so that we can move on. We're too important to each other regardless of these views.

I care about all of you and suspect the majority of every one here has the same perspective. We can be scared of the personal implications...or thankful for them. But hopefully we can keep it personal and peaceful.

Respectfully submitted,
Melanie
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Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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Old 11-21-2009, 04:34 PM   #12
ElaineM
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Wink Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

I am sorry to see you go Rhonda. I read and appreciate your informative posts.
We share our concerns that are related to our health care and other related needs. We have alot of different concerns, including access to health care. Many of us have already had to fight or struggle to get the care we need. I can understand that some members of this board are concerned about facing more possible struggles and fights if access to health care becomes limited. I can understand the need to express those concerns. If some members do not agree with the concerns of a member that is okay. Peace and understanding among friends are some of the keys to building and keeping relationships. If I read something I do not agree with most of the time I just think that person is entitled to his or her opinion. No problem. I do not get upset very often.
I read most posts contributed by the members of this board, but there are just so many hours in the day and I have alot on my plate. I don't have enough time to respond to every post even though I would like to participate more than I do. I am totally responsible for all of my needs. That includes cooking, cleaning, laundry, health care, paperwork, paying bills, medical and other appointments, grocery shopping, a little community involvement, keeping in touch with family and friends, my own social and spiritual needs, etc. etc. etc.
I wish there were more than 24 hours in a day to do stuff including participate more. Oh well, I just do what I can.
I will miss your participation if you decide to leave.
I wish you well, safety, peace, love and good health in your future. Take good care of yourself.
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
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Old 11-21-2009, 04:45 PM   #13
Midwest Alice
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

We are responsible for what happens in our country and to our constitution. Its ....WE the people.

Health care changes will affect us and those who follow. It's a very important issue for US.

Everyone needs to man up. Its OK that we don't agree.

I agree with Joe on 3,4 and 5.

I have had c-span on all day with the live Senate hearing on this health care bill. I have the Capital on my speed dial. Not only do I follow this bill on c-span, Fox and the web, I call my peoples in DC and tell them my 2 cents.

This is great we can talk about the health care bill here. I would ask my her2support friends to take the time to , call, email and fax your people in DC. They need to hear from the real people.
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04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 11-21-2009, 05:29 PM   #14
tricia keegan
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Rhonda I remember you well from posting in the past and am sad you have decided to leave again. I don't live in the US so don't partake much in the political issue's that come up now and then on the board. If I don't live there I don't feel a right to comment unless something comes up about universal health care which I can comment on.
I'm just sad to see so many well read intelligent and educated people can't discuss different views and respect another's opinion but agree to differ if that is what it takes. Surely what brought us all here is more important than political agenda's??
I don't post or share scientific info links or whatever but do come here to find this info from other's who do! You were/are one of those people. I support where I can and reply where I feel I have something to add to a question. I don't think it matter's what views we all may have, as long as we share the view of supporting all people dx with her2+ cancer.....I recommend this board to many people I meet who are actively looking for further info than even their Dr's provide.
Maybe it's time we all took a step back to consider why we're are really here???? I'd hate to see this board change
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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!
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Old 11-21-2009, 05:39 PM   #15
Sherryg683
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

I think as a group, we should be free to discuss topics not just concerning treatment but topics that may affect our treatment such as health care reform without fear of being deleted because it may step on someones toes or someone threatens to leave the board . Frankly, I considered one of the posts supporting what's going on now condescending but did I leave or threaten to leave...hell no. This is my board to and I love you guys..we may not always agree but we can count on each other for support and information. I've learned a lot by reading the posts here recently. ..sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 11-21-2009, 07:40 PM   #16
Laurel
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

Okay, now I am gonna P.O. everyone here by saying that I always thought Dr. Love looked like a man and found it funny that she would be an advocate for women's breasts. Now, that said, I also feel she has very bad hair, and beady eyes. She may kick kittens and eat puppies, I am not sure. Regardless of these clear deficiencies, I am a member of her Army, and I have not gone awol or deserted, despite her, in my opinion, idiotic support of the new, again in my opinion, idiotic revised recommendations for women. Whew! Feels good to get that off my silicone stuffed chest!

Now, I am glad that Rhonda posted the link to Dr. Love, because I have been busier than a one-armed-paper-hanger lately (a good thing) and did not see the interview with Dr. Love. While I think it stupid on her part to support the new guidelines, it does make one pause to ponder her reasoning. Whether you dismiss her thoughts or embrace them, you have to admit it makes you scrutinize the new guidelines further.

In summation, Rhonda, I am glad you posted, did not think it cowardly in any manner, and am perplexed as to why you feel attacked, but am genuinely sorry you feel alienated and hurt. Dr. Love has a right to her opinion, after all this is the USA, and we have the right to reject or accept her reasoning.

Come back when the dust settles, Rhonda. In the end what will be will be, and we will all need one another.
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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....

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Old 11-21-2009, 11:48 PM   #17
SoCalGal
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

what the heck-a-ma-jeck is goin' on here? first my daughter talks AT me about how messed up the WHOLE entire world is and how every single thing she does has a negative impact on someone in the world, and how blah blah blah capitalism, made in china, blah blah blah blah blah.

So, I log on here for some calming cancer talk and instead!!!! people breaking up, fighting, yelling.

Feel your boobies, DON'T feel your boobies, has the whole world gone bonkers?

BTW all of this is just IN MY OPINIOIN - mine and only mine. I'm gonna feel my boobies, and then go to bed.

Love you guys!
Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 11-22-2009, 12:08 AM   #18
Catherine
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

For Rhonda(and for everyone), I think you were one of the first people that I communicated with on this site. With out searching for threads, I think you are the one that put together the list of good foods to eat to help fight cancer. If this is who you are, I will miss you. And I hope that you just growl a little and come back soon. I personally have calmed down since getting over first seeing the new findings. I try hard to believe that the people "in charge" are looking out for we humans living in the U.S. (and elsewhere) What we sometimes rant about is really the complexity of bureaucracy. Even if I were a Congress person, I know that I could not always achieve what my constituents want....due to the layers and layers of bureaucracy. I do communicate with my Congress people and I do give them my opinion from time to time, in hopes they will vote with me in mind. I would like all of us to let the dust settle and still come here and support and inform each other. I can get angry with the best of them, but I hope we can all just be friends. I hope that all the hurt feelings, slowly heal.

Thanks for all the love and information, I have received from all of you.

Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 11-22-2009, 09:48 AM   #19
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

I always thought Dr. Love looked like a man and found it funny that she would be an advocate for women's breasts. Now, that said, I also feel she has very bad hair, and beady eyes. She may kick kittens and eat puppies, I am not sure.
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Old 11-22-2009, 09:50 AM   #20
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Re: I'm back (sorry to those of you that were glad to see me go)...but I'll be gone a

unbelievable Laurel .... unbelievable ...
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