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Old 05-07-2013, 04:48 AM   #21
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: Progression. :(

Thanks everyone

My first dose of TDM1 was a little harder than I expected, it seems everyone is saying it is so much easier than most other chemos. I think I must just be a sookie la la (medical term of course!) I had terrible headaches, nausea and had to nap for approx 3 hours each day at lunchtime, just to get me through to an "acceptable" bedtime. In saying that, at 8 days out now, I am feeling really good! Must be the chocolate I just had.

Phil, I have been following Lorraine's story, and I thank you for your good wishes, which I also send back to yourself and Lorraine. I would also like to thank you for the hard work and effort that goes into all that you do, it benefits us all with breast cancer.

Dawn xxx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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Old 05-26-2013, 06:57 PM   #22
NEDenise
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Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Progression. :(

Dawn...or do you still prefer Sookie la la?

So, how are things going with you and your tawdry relationship with TDM-1?
Any improvement in the days that follow each treatment?

Any scans scheduled yet? Nah, probably too soon for that, huh?
Denise
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Old 05-26-2013, 07:41 PM   #23
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: Progression. :(

Lol Denise

My last post about my muga scan going down from 67 to 50, was all a big fib! The STUDENT, told me that, but on treatment day the onc said there was no problem, it was at 65! So all that stress and worry that I would get kicked off the trial was in vain. What is the saying girls. DONT BORROW TROUBLE!

So I had my 2nd cycle of TDM1, and it was easier than the first. I changed anti nausea tabs, so I think that was the main reason. So I wasn't as big a sookie la la as the last cycle!

Thanks for checking on me Denise, it's nice to know
Dawn. Xxx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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Old 05-26-2013, 09:26 PM   #24
Mandamoo
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Location: Melbourne, Australia
Posts: 432
Re: Progression. :(

Glad the second one was better - I found the first the worst. Are you at Footscray for this trial? I have a friend starting next week. I don't think it is as easy as everyone says but the big thing for me was that my bloods were totally normal throughout and that's a good thing. Here's to it doing its job and so pleased the echo was a furphy - Don't borrow trouble - YES I like that!
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Old 05-26-2013, 10:19 PM   #25
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: Progression. :(

Amanda, I am at Peter Mac for the trial. Peter Mac was a shock to the system. I was at St. John of God, private hospital in Geelong. The only option they gave me was Peter Mac, so I went from a small hospital where all the nurses know not only your name, but also your husbands, children's, where they go to school etc, to huge overcrowded, awful Peter Mac. They are building a new hospital, but that is about 4 years away. I was horrified as I walked through a corridor to have a muga, that there were people who had just come in ambulances, on trolleys,nwith oxygen I.v, etc just abondaned in the hallway, also it looked as though some patients had just come out of surgery, hospital gowns open, but no curtains, no privacy, it made me feell ill to see these people in a time of need, look as though they had been discarded into a corridor/room, without a thought. My nurse said the hospital had a policy of not turning anyone away, and are therefore 30% over their patient limit. The nurses are rushed off their feet, working extra long hours, I am afraid that mistakes will be made in that kind of environment.

Sorry, that turned into a bit of a rant didn't it? I hope your friend does well (and that Footscray is nicer! Lol)

Dawn. Xx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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Old 05-27-2013, 05:13 PM   #26
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Progression. :(

I've never been to Peter Mac but was at Morabbin for one trial - quite a difference to Cabrini and Frankston Private. Just soooooo busy bt I have to say that even at Morabbin they got to know me by name. I think you get a little more TLC when you are on a trial too.
It's crazy in the public system and I am grateful I am currently at Cabrini but I am glad we have a system that keeps accepting people I just wish it were better funded.
xx
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Old 05-27-2013, 09:34 PM   #27
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: Progression. :(

Yes, I agree Amanda, I am glad Peter Mac keeps accepting people, but they definitely need more funding to treat said people. There just never seems to be enough money in the health system, does there?
I am online booking a holiday to Byron Bay at the moment. I find it hard to plan too far ahead, but I am going ahead and booking in October. Can't put everything on hold for stupid cancer.
Dawn xx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
dawny is offline   Reply With Quote
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