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Old 12-06-2014, 05:59 PM   #21
tricia keegan
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Location: Ireland
Posts: 3,460
Re: What is measurement date for 5 yr mark?

Thank you Rhonda, I couldn't have said it better and you expressed exactly what I meant when posting and I'm pleased we both are still doing well and enjoying life nine years later.

'Lizbeth, I bear you no ill will and was only referring to early stages like myself, I don't respond to stats at all as feel we all respond differently and are more than a number and pray all our members here whatever their stage, do gain from the new drugs out there since I was dx in 2005. I'm sure the stats anyway have gone up since 2005 but thats what my Onc told me at that time. If I was mistaken I do apologize but we shouldn't come down hard on anyone for posting anything here they perceive to be true, I really never claimed to be an Oncologist and just post what I perceive to be true, if you have an issue with it thats fine and if new info is there since I was dx feel free to correct me.

However your attitude I feel does deter people from posting (particularly newbies) here sadly and that is an issue we never have had on this site and it sadden's me to see it now.

Joe often e mailed me saying how happy he was that this site had reached far shores and so glad people all over the world were gaining support from it, I don't comment often but agree with Rhonda that it's important we keep the site running as he and Christine would have wanted it to be, I hope you agree and think thats all I'm going to say on the matter and will leave this thread to respect his wishes, you may want to do the same even if you didn't know him.
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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!

Last edited by tricia keegan; 12-06-2014 at 06:15 PM..
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Old 12-06-2014, 08:32 PM   #22
'lizbeth
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Re: What is measurement date for 5 yr mark?

ThinkPositive,

So sorry that your thread was hijacked. Thanks for the wonderful walk and talk today. It was a great pleasure to meet you. I look forward to many more hikes and discussions. I'll let you know my next time I can make it!

Tricia, I don't know why you would make the assumption that I did not know Christine or Joe. We lived in the same area, and so of course I have met and spent time with them. I don't really think this is about Joe or Christine and their wishes. It is more about you and Sassy and your wishes.

Those stats that I shared were the ones that existed in 2005 and that Herceptin was approved on. The information that your oncologist gave could have been prior to ACT perhaps? I think it is important for senior members to give accurate information. I don't believe we should post what we perceive to be true, we should do our best to double check the information and source it. I hold you more accountable then most because you are also a moderator for Her2 on Susan G. Komen.

You feel my "attitude" deters people from posting. The truth is that they stop posting when other senior members start criticizing my posts and message or email me directly. When I take a break from posting I start getting messages from others, including many newbies to keep posting.

Joe and Christine started this board to bring together those that were dealing with a Her2 breast cancer diagnosis. Many of the same issues exist, progression, recurrence. Yes - Herceptin was the beginning of a cure for Her2 breast cancer. There is just so much more to be accomplished.

Yes I did come down on you for the posting about a 1 year prognosis for early stage. You should have sourced this comment to your oncologist. I don't think it is fair to new members of the board to think that before Herceptin they would have lived only 1 year.

Tricia I would prefer it we all could post together in harmony on the board. We should all share the same goal, to support those who have been diagnosed with breast cancer and to share information.
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Old 12-06-2014, 08:57 PM   #23
sassy
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Re: What is measurement date for 5 yr mark?

'Lizbeth,

As a moderator for this site, it is not only my wish, but my responsibility as prescribed by Joe to continue to monitor and maintain the boards in the manner established and desired by he and Christine.

I shall do so.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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