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Old 10-25-2013, 04:21 AM   #1
chrislmelb
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Mandamoo's legacy

This is a bit round about but it is a blog post by one of Amanda's friends which explains a few things and then there is a link to an article written by the CEO of National Breast Cancer Foundation(NBCF), one of our main research places. The first link is the important one.
Amanda did make a difference. Also it was good to be surrounded by red at her funeral, instead of pink.


Blog post by Merylee Punchard:

Wanted to share this with you all.... Xxx We can make a difference!
Just got an email from National Breast Cancer Foundation. Too long to copy and paste. But it made me so happy - even tho yesterday we said goodbye to a YPS - Amanda Rynne - she is not forgotten.
Besides her family and friends she has left behind a legacy.
Amanda would speak frequently and openly about having stage 4 breast cancer. She really hated the breast cancer language. Like Fighter, Survivor, or just as simple as she lost the fight. A few weeks ago she posted on NBCF facebook page this :- Amanda Rynne
October is so hard. Even harder this year as I am, at 41, just 31 months after my 'caught early' diagnosis receiving palliative care. I read these posts and all I can do is cry - all this talk of fighting and winning and beating cancer. I've fought bloody hard - do people realize this is an unwinnable fight for anyone diagnosed with advanced disease? Do they realize this imagery and wording implies those who die weren't up to the fight? That we are losers and failures? When will we focus on this as a hideous and fatal disease it is that still kills 7 Australians everyday instead of prettying it up with a pink ribbon?

Today I get an email from NBCF trying to get in contact with Amanda. Sadly I had to break the bad news she had passed away. They then informed me of how much Amanda's post changed the way they thought and worded things. They have changed the language on their website and now planning on changing their promotional stuff too and their CEO also wrote this:
http://bit.ly/1d0agAM
Amanda is the lady the CEO writes about.
Amanda changed a major company like NBCF - We can do anything!
Editorial Comment A Darker Shade of Pink
www.nbcf.org.au
Its time to remember that pink has many shades, some lighter, some darker, and not all stories will have a happy ending, but they all deserve to be told.
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DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 10-25-2013, 05:14 AM   #2
NEDenise
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Re: Mandamoo's legacy

Chris,
Thank you so much for sharing this.
I already knew that Amanda had made a huge difference in my life...
it's heartening to know that some "more influential" people were listening too.
Denise
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Old 10-25-2013, 05:17 AM   #3
LeahM
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Re: Mandamoo's legacy

Thank you for sharing. I read this thru tears. Amanda was a fighter and an inspiration.
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Old 10-25-2013, 10:16 AM   #4
sarah
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Re: Mandamoo's legacy

Thank you for sharing this. How inspiring that she was able to effect an important change of attitude.
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Old 10-25-2013, 11:41 AM   #5
'lizbeth
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Re: Mandamoo's legacy

Thanks for sharing this.

I think I have been one of the more vocal ones about "The Stink of Pink". I think breast cancer ribbons and the color pink has been exploited for financial gain. Some have their hearts in the right place and mean well. And many just want to help and this is the only way they can find - is the pink campaigns. I applaud them, but lets direct them to a better cause like Vanguard for functional profiling clinical trials.

I, like many, would like a more serious representation for the fight against metastatic breast cancer. We have thrown out numbers and how many progress? 20 - 33%? Crap, that number doesn't make me feel warm & fuzzy about The Pink. And this is why I am always pushing clinical trials - we need to change the Standard of Care. And ladies, when I say "we" I mean you too. We need more treatments, more testing, better testing, to abolish the wait & see and let 1/5 to 1/3 of patients progress form of surveillance. Amanda started change, we can keep it going.

I'm right up there with Mandamoo with the lingo of "fighting cancer". Really? If the cancer has the survival advantage so that diet, exercise, meditation, treatments, surgery, radiation and targeted therapy cannot stop it - all one can do is wave the white flag. and die. GAME OVER.

Amanda did not fail treatment. Current cancer treatments failed her.

She was young, active, positive, determined until she could barely breathe and the pain was terrible.

She was still looking for her miracle with this comment to Nancy:
Quote:
I have a P53 mutation for which there are a couple of trials (phase1) happening in the US plus there are a number of Panher2 inhibitor trials going on. The list of trials on the US website is much much larger than here but access might be a different issue altogether. Just looking for my miracle!
We've lost Amanda, but we can take up the cause to identify the causes of MBC and prevent recurrence. We have to - because we have NEDenise, Penny, CoolBreeze, MtnGirl and many others who are still "in the search" to find their miracle.

Last edited by 'lizbeth; 10-25-2013 at 11:43 AM.. Reason: omission
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Old 10-25-2013, 05:14 PM   #6
Mtngrl
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Re: Mandamoo's legacy

I thought that editorial might be about Amanda. Good for her for prohibiting pink at her funeral. I have already told my kids I will find a way to come back and punish them if they dare say I "lost a long battle" with breast cancer. It's like saying someone who died after being run over by a truck "lost her battle." Please.

Another story I read about Amanda's funeral said that she requested that people wear red. Good idea too.

I wrote a blog post about "Making friends with cancer" that says, among other things, that I don't think it's helpful to use martial imagery or language in relation to cancer. I have several reasons. I blog at www.durfeewest.com if you're interested. It's not a breast cancer blog, it's just my blog that I started in 2008 when I shut down my law practice and went off to seminary. But I have breast cancer, so sometimes I write about it.

I agree with Denise. Amanda touched and changed my life. I'm glad to know she had an impact on the breast cancer rhetoric.
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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
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Old 10-25-2013, 09:04 PM   #7
Bunty
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Re: Mandamoo's legacy

Thanks Christine - I posted a link in another thread of this very story from the NBCF that appeared in both the Sydney Morning Herald and The Age newspapers and on their websites on Friday October 18. At the time I wasn't sure, but felt it must have been Amanda to whom the author was referring. So thanks to Amanda, this has had a very wide readership in Australia. The NBCF is influential!

http://www.smh.com.au/comment/one-co...l?rand=1559522

http://www.theage.com.au/comment/one...017-2vpj9.html

Marie x
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 10-25-2013, 11:43 PM   #8
Aussie Girl
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Re: Mandamoo's legacy

I am very interested in what you are saying. I'm only 4 months into my own journey, but have had 24 years of diagnosing breast cancer, primary and metastatic.

It's hard to talk about anything without metaphor - it's how our brains work and it certainly helps if you want to campaign to the public. Are there any metaphors that are more helpful for you? The Age article mentioned "walking the thin edge" and also shades of pink. (At this stage in my journey, battle is a potent image, but the winning/losing aspect sucks).

It seems to me that every Breast cancer organization needs a special working group for metastatic carcinoma that constantly upholds the interests of the women with metastatic disease to the main executive, to be considered in every campaign and ceratinly for pinktober. Are any of you involved at a high level with such an organization?

Aussie Girl
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31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 10-26-2013, 08:06 AM   #9
Mtngrl
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Re: Mandamoo's legacy

No, no involvement. But even in the two-plus years I've been "aware" of MBC I sense a shift in attitude and language. I think some prominent bloggers are helping with that.

"Big Pink" seems to actively avoid talking about MBC. In particular, Susan G. Komen has been deceptive (giving five year survival statistics to imply that with early detection breast cancer is 98% curable, for example). This video is powerful: http://www.youtube.com/watch?v=HGV6eOziEY8

The truth gets in the way of the survivorship storyline.
__________________
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
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Old 10-26-2013, 08:47 AM   #10
'lizbeth
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Re: Mandamoo's legacy

Ladies,

We tossed the numbers around before and there is reporting that early stage has a 98-99% survival rate from ACS, and likely SEERS. It just doesn't make sense. The board (okay mostly me likely) has discussed a relapse rate of 20-30%. I think the number is based on 5 year survival and that time frame probably gets dropped.

Based on the Spanish study we've been dissecting there was another round of recurrence that peaked after the 5 year window. Thus, my enthusiasm about better tracking of who & when, and considering Herceptin boosters.

I read the article and frankly was offended by the different shades of pink comment.

Quote:
Surely this October - 28 years after the breast cancer awareness month was established internationally - we can acknowledge that pink can have many shades, some lighter, some darker, but all the same colour. And that not all Pink Ribbon stories will have a happy ending, but they all deserve to be told.
Carole Renouf is CEO of National Breast Cancer Foundation.
Ms. Renouf frankly didn't get Amanda's message. Mandamoo wasn't a pink ribbon story. She was an active wife and mother who suffered the misfortune of cancer. Amanda hated The Pink so much that she banned it from her funeral. She was not "a darker shade of pink". That is offensive and belittling. She was a cancer patient who progressed to Metastatic Breast Cancer which caused her death.
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Old 10-27-2013, 07:29 PM   #11
KsGal
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Re: Mandamoo's legacy

Thank you for sharing this with us. Miss Mandamoo so much. It's nice to see the difference she made, and that these people heard what she had to say and understood.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 10-27-2013, 10:44 PM   #12
Pamelamary
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Re: Mandamoo's legacy

Oh dear, some days I get tired of the whole thing - sick of cancer and everything connected. 5 year survival rates make a mockery of the facts of those of us living and dying of ABC. Improved survival rates could easily be a function of earlier diagnosis. Who knows? I feel exceptionally grouchy today!
Pam.
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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