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Old 05-14-2013, 11:03 PM   #41
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: More Progression

Hugs to you Amanda, keep smiling!

Dawn
__________________
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, 06:25 AM   #42
NEDenise
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Location: Philly Suburbs
Posts: 1,709
Re: More Progression

Amanda...
Any updates you're willing to give? I'm feeling hungry for news from down under!

Denise

While I'm waiting for news...Dawn requested my radical views on homework.
I hate homework! I hate it as a teacher, and I hate it even more as a parent! On the first day of school, I share this distaste with my students. They waver between skepticism and joy at the news. I also share this opinion at back to school night, where I assure the parents that while I am required to assign homework...they outrank me in their home, and can simply initial any assignment, and cancel it out. Done. Full credit earned. There is absolutely no homework in the world that should ever interfere with family time. Parents too seem skeptical. It's only after the veteran parents, whose older children have had me, attest to the fact that I'm totally serious, that the other parents get happy!

I also make sure that every homework assignment is "started" in school...in case anyone is confused. What a nightmare for parents AND kids when they don't remember how to do what's assigned!

I remember several occasions with my own kids that became a royal pain! One time, when I was teaching 5th grade, and my son was in 5th grade too...he came to me for help with math. Now, at the time, I had been a teacher for over 20 years. I had been teaching from the same math series he was using in his school for 5 years. I literally own shoes that are older than his teacher was at the time. You can probably see where this is going...

He asked me for help.
I showed him what he was misunderstanding.
His reply was, "That's not how Miss Long taught us."
"Hmmm", I said, "I think you might be remembering wrong...that's the way it's taught in this series."
"No, Miss Long didn't do it that way, are you sure you taught it right?"
"Seriously", I asked him? I've been a teacher longer than Miss Long has been alive! I've been teaching 5th grade math for longer than she's been a teacher. You really think I'm the one who's confused?"
Friends, the look on his face said it all.

She did not have a "sign the bottom of the page" policy. So we "fought it out"...checked it with a calculator...consulted with his older brother - who evidently seemed more reliable than mom, who had dared to question Miss Long's pedagogy...and agreed to disagree.

In the end, he came home the next day and grudgingly admitted that I had not been exactly right...but that I had been doing it Miss Long's way after all. Is it any wonder I hate homework?

Just have the kids read a good book for an hour! That's the best way to get smarter anyway!!

Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 05-26-2013, 07:52 PM   #43
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: More Progression

Denise, thank you for your views on homework. My kids would love your view. Especially my 12 year old son. He says "but mum, I have been working at school all day, how come I have to do more work when I get home?". "I'd rather read my book" usually comes.next! He would read all day, I think he gets that from me, I love to read.

A mum from school rang me not long ago, to ask if I knew how to do the grade 6 assigned homework, I Hadn't yet looked at it and thought " oh geez, we haven't even made it to secondary school, and we 'the parents) are having.trouble with the homework!". It just wasn't explained very well, we got through it, sheesh.

Hoping you are doing ok Amanda, and that you daughter is also

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, 09:22 PM   #44
Mandamoo
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Location: Melbourne, Australia
Posts: 432
Re: More Progression

Firstly to homework! I like your style (no surprises there) Denise! I find my girls' school pretty low key on the homework and assignments compared to others I've seen though we did spend the weekend helping Mic spray paint her space shuttle model - I am not looking forward to the space themed board game. I totally step back and let them do the work (or not as it is for Alex at the moment). A my son's school the no longer call it homework but "home learning" - go figure! Even funnier, we don't have parent teacher interviews but "learning progress discussions". I love the use of the language - cracks me up.

They spend so much time at school they need downtime and family time when they get home. I never get them working on holidays. I have a friend whose girls are 12 and spending all weekend and hours each night on homework that makes my brain hurt just reading it. Crazy.

Secondly, I'm doing fine thanks. One cycle completed. Now sporting a funky little pixie as my hair thins and I'm desperately hoping it will stay enough for me to get to a wedding without having to wig up next weekend. I enjoyed my week off this past week and my energy improved. So far just a general joint flu like ache that we are all familiar with - a little worse 2 out of the 7 days. Have my bottom troubles managed with regular gastro stop. I am feeling like my cough has dramatically improved in the past couple of days but is am trying not to get too excited as the weather is a little warmer (the cold sets my cough off). We have decided to wait another cycle until we scan as I seem pretty stable symptom wise and my tumor markers are stable too (never a good indicator for me but they had steadily risen for about 6 months). My onc is off to ASCO and hopefully going to find something new and wonderful for me if I need it but for now here's to this shrinking things to NED (why do I hear someone somewhere laughing as I write that?) - more mysterious things have happened. She said next step for me would be reinventing the wheel -oh well, I'm always up for a challenge.
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Old 05-26-2013, 09:36 PM   #45
Mandamoo
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Location: Melbourne, Australia
Posts: 432
Re: More Progression

It was a student free day today for my boy as the teachers were writing reports so we had a morning of kicking the footy in the park. Here's a picture.
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Old 05-26-2013, 10:05 PM   #46
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: More Progression

Hi Amanda, thanks for the update, sounds like things are going along pretty well. Good to hear. Nice not to have to scan too soon also. Keep up the good work, you will get an A in your "learning progress discussion" lol
Dawn
__________________
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, 10:05 PM   #47
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: More Progression

P.s. great photo!
__________________
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, 12:17 AM   #48
Bunty
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Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
Re: More Progression

Great photo Amanda! He'll be playing for the Swans (!!) before you know it. I reckon your hair will be fine for the wedding!
Cheers Marie
__________________
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 05-27-2013, 05:03 AM   #49
NEDenise
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Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: More Progression

Amanda
OMG! could he be cuter?! Now help me out..is a footy and American football, a rugby ball?

Home learning?...I'm not buying that one!
Home learning is stuff like: where did Mum hide the (insert name of junky snack here)...
when I do this to my sibling - this happens...
do carrots bounce...
how about eggs...
will the dog/cat eat crayons...
how long till the technicolor poop appears...
It's not related to classrooms in any way!!

But learning progress discussions...that sounds much more fun than parent-teacher conferences! My heart goes out to you on the project front...but I'm glad to know you're a supporter, not a do-er. On more than one occasion over the years I've had parents complain about the grades they got on projects. Of course they correct themselves when I call them on it...but by then the cat's out of the bag!

I'm glad the new meds are not knocking you out. And I definitely think the improvement in your cough sounds promising! My onc is off to ASCO this week too. Looks like we both picked go-getters! Good for us!

And, I'm with the other gals...I bet you get to that wedding wigless and lovely! Is the pixie like the one in our avatar photo? I love that look on you.

Keep feeling good...sending love your way!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 05-27-2013, 03:10 PM   #50
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: More Progression

Oh no Marie, he will play for the Cats, definitely!! Lol
__________________
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, 03:12 PM   #51
dawny
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Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Re: More Progression

Amanda, which team does HE support? I think he probably should get some say in which club he plays for! 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 05-27-2013, 03:19 PM   #52
norkdo
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Join Date: Jul 2011
Location: ottawa canada
Posts: 367
Re: More Progression

Amanda! You listen to Denise right now!! (this is your nagging auntie here) hahahaha. But really Manda, you are an Aussie!!!! You are a Melbournian!!!!! You are going to survive dammit!!!! (forgive me please if this is out of line) You are a star! So supportive like the Aussies here all are!!! My prayers are with you and you come here please to these boards no matter how you feel. We are here for you.
Nora
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 05-27-2013, 05:09 PM   #53
Mandamoo
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Re: More Progression

LOL! He is a Hawker! He would be mortified to think of playing for the Cats or Swans but at least you didn't suggest Collingwood! (I am a Lions Supporter - no joy there this year...)

Denise - here is Melbourne we play AFL (Australian Football League). I however, come from the north of the country where Rugby and Rugby League are considered the game that is played in heaven though living in Melbourne you cannot help but get involved in loving the AFL. As for calling it "footy" - just another of those "Australianisms"

My hair is currently perhaps just a little shorter than in my avatar. I think I will make the wedding but was thinking this morning that maybe I would get myself a lovely long wig - dang - maybe I'll get a few!
And Yes Nora - I have plans to survive - because that is just what I am planning to do!
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Old 05-28-2013, 05:38 AM   #54
NEDenise
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Re: More Progression

Hey!
If you decide to get multiple wigs...check out the website for the American Cancer Society http://www.tlcdirect.org/default.asp...FYKd4AodkEUALA

The prices are unbeatable...they accept returns...I loved my wigs from there. I paid $350 for a wig at a salon, and it was beautiful...but the ones from TLC (the link above) were under $50 and looked just as nice! I can't imagine they wouldn't ship to Australia, but if they won't...you could have them shipped to me, and I'd be happy to send them on to you. No pressure...I know Dawn posted about a great wig shop near you...just supporting that hunger for hair-do variety! When we're having fun...cancer is miserable! Always a good thing to my way of thinking! I've already decided that when I need/want another wig...I'm getting a curly dark one, and a longish blonde one. How many reddish brown heads of hair does one woman need?!!

So...as an uninformed American...just to clarify...in the photo, Alex is kicking a rugby ball? What I'd call a soccer ball is actually a football...and the team Alex will play for...when he gets a little taller...is the Hawks...also a football team? Or, am I still waaaaay off?

Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 05-28-2013, 08:43 PM   #55
KsGal
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Re: More Progression

First off, I wish I had a teacher that had even remotely the same attitude towards homework as Denise. I had a teacher in middle school who used to let us have the last 15 minutes of class to start our homework, and that made me LOVE that class. Kudos to you, Denise, for putting family time first!
Im so glad you are feeling better, Manda. Im sure your scans will show improvement. And what a cute little guy! I miss having smaller children. My youngest is a teenager, and well, don't even get me started on that!
Now, tho, I am super confused on this sports issue...what is the difference between rugby and football? And what we call football here...passing with the hands and such, does that exist anywhere else? lol. Blame Denise for this..she asked all those questions and now Im confused! :P
And if you do decide to get a long wig, let us know how you like it. I have stuck with the short ones up until now, but just a few weeks ago I started thinking how I would like a longer one that I can maybe do some different things with..hair clips and bands and such.
Big hugs to you, and as always prayers and positive energy.
__________________
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 05-30-2013, 12:57 AM   #56
Mandamoo
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Re: More Progression

Oh dear - trying to explain the intricacies of the different football codes could get very messy. AFL is a game where the ball which is like the one used in rugby (a bit small and narrower) is mostly kicked about a circular field toward a goal - the ball is passed forward rather than back (usually) using a hand pass which is like punching the ball. You can only run a short distance with the ball without hand passing, kicking or bouncing. A kick through the middle posts is 6 points, through the outer posts is 1 point.

I a shedding more and more so today I used the Cabrini Wig room service at Brighton - an amazing service where I was fitted with a brand new wig for free and then also received a number of hats, sleep caps, beanies all donated! Wow! I went long! I haven't been long for years - it is very sexy... I need to get the fringe trimmed a little but I am not complaining. I can also purchase another later if I want to. I can't imagine wearing this one in the heat of summer.

And.... My oncologist rang me to tell me she had good news - my markers have dropped - first time in almost a year - they have steadily risen since about August last year! Good news indeed coupled with my reduction in cough. Here's to long term benefit!
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Old 05-30-2013, 01:20 AM   #57
Pamelamary
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Re: More Progression

This sounds promising, Amanda - and we all could do with good news right now! Just flick those long locks over your shoulder and keep smiling... Pam
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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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Old 05-30-2013, 01:54 AM   #58
Bunty
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Re: More Progression

Yay yay yay on so many fronts! Firstly Amanda on your excellent description of AFL, secondly on your sexy new wig, and thirdly, and best of all, on your TMs dropping, and the cough reducing. I reckon you are going to rock that wedding on the weekend.
Best wishes, Marie x
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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 05-30-2013, 03:32 AM   #59
NEDenise
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Re: More Progression

Add my Yay to the chorus!!

First - Tumor markers dropping...WooHoo! In fact, any good news call from an onc...double Woo Hoo!!

And, reduced coughing has to be such a relief!

Sexy wig...AWESOME...but hey, what doesn't look sexy on someone whose tumor markers are dropping? I mean really...the inner glow must be dazzling!
So what shade are your new long locks?
What do your girls think?
When can we expect a photo shoot?

Now, as to the AFL thing...I get the passing, and the differently shaped ball...but I'm off to google the circular field. Even Quidditch can't boast a circular field! I was just getting used to my guys being CFL fans (Canadian Football League), and learning those rules...
I even tolerate their fixation with the whole World Cup Extravaganza.
I don't think they're aware of this circular field thing though...I'm pretty sure that would have been too much for them to resist.
They do watch the NFL but our team, the Eagles, has had a bit of a rough patch, on and off the field...so the bloom is off that rose a little in our house.


As an aside...my eldest has embraced rugby. He's built for it, for sure. And I like to think that my Irish heritage is the reason his mind and body are so suited to the game. Read that...he's built solid as a fire plug and is stubborn as a mule! His speed and grace on the field are most definitely NOT attributable to me in any way though. Unless it skips a generation, like baldness...those qualities definitely come through his Dad!

I hope the wedding is fabulous! And, really...maybe a picture or two of your new "do" might just show up here?
Stay happy!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 05-30-2013, 03:48 AM   #60
dawny
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Re: More Progression

Yay from here too! Amanda that is great news, fantastic! Yes, we would love to see the long locks, says me who doesn't even have a photo here! Amanda you are the only one who knows what I look like!

Hope you have a great time at the wedding Amanda
Dawn xxx
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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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