Learning to live with Metastatic B C

For those wanting to share with others living with secondary or metastatic breast cancer.
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jezza
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Re: Learning to live with Metastatic B C

Postby jezza » Mon Mar 19, 2018 5:48 pm

Have you been spying on me? I just spent the afternoon reading a book! I have never read so much in my life as I have in the past 2 months. I did take the dog for a real workout with one of his dog friends earlier. My dog is enjoying my retirement. I Managed a couple of games of FHs as well...lol

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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jayem
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Re: Learning to live with Metastatic B C

Postby jayem » Mon Mar 19, 2018 2:02 pm

Hi Jezza, yep, still a Farm Heroes addict!

I go to Sydney every two months. A nurse comes every two weeks to give me the injection. I have just had two lumps excised from the back of my neck. One is definitely a tumour related to the Neuroendocrine cancer, the other is probably a cyst, harmless but pleased to have it gone. The breast thing is totally weird. Other than the couple of skin things, there is no talk of any surgery. I think it is all too widespread. Still, while there is treatment there is hope of stopping the spread... not that that has worked so far!

This is certainly not the way we had planned to spend our retirement but this is the reality of life.

Enjoy your newfound freedom. BTW, it is totally okay to spend the afternoon sitting reading a book!
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

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jezza
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Re: Learning to live with Metastatic B C

Postby jezza » Sun Mar 18, 2018 6:36 pm

Good to see your little butterfly on here Jan but wish things were going better for you. So you have to travel to Sydney fortnightly? That's a pretty long journey.

I agree...so hard to understand cancer and all that goes with it. I have never heard of cancer in the breast not being breast cancer. I guess that's why you do years and years of study to become a specialist. As Ruth says, I hope you are having good days as well and are able to continue with your scrap booking etc Do you still play Farm Heroes Saga...or do I annoy the hell out of you by sending and asking for lives...lol

Hugs

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Learning to live with Metastatic B C

Postby jayem » Sun Mar 18, 2018 5:24 pm

Thank you :heart:
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

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Re: Learning to live with Metastatic B C

Postby Janette » Sun Mar 18, 2018 11:28 am

I'm always thinking of you Jan. I hope the chemo doesn't knock you around too much but knocks the cancer. :hugs:
Janette


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mum2chloe
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Re: Learning to live with Metastatic B C

Postby mum2chloe » Thu Mar 15, 2018 9:30 pm

Oh Jan,

Sorry to hear this news bloody cancer honestly. I really hope you are managing the side effects and you get a bit of a breather between sessions.

Thinking of you
Dx July 2002 age 28. ER, Her2 pos 96mm tumor. 8/12 nodes.
Mast. Chemo AC & Tax,Rads, Tamoxifen & Zolodex,
Nov 2008 Oophorectomy, Arimidex, Femara.
Oct 2011 Recon surgery LD flap
May 2012 Dx Liver mets , 2yrs Abraxane & Herceptin.
June 2014 Aromasin & Herceptin

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Re: Learning to live with Metastatic B C

Postby ruth1 » Thu Mar 15, 2018 8:54 pm

omg Jan that sounds like a very heavy duty regime but I guess they are giving you everything they've got - Ive never heard of lutate - are there awful se's from it - Its very hard to understand that its not BC.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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jayem
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Re: Learning to live with Metastatic B C

Postby jayem » Thu Mar 15, 2018 7:23 pm

Thanks Ruth, I am currently have another treatment as well at RNSH called Lutate which is a radionuclide infusion in conjunction with oral chemo. I am now having the injections fortnightly because the mets are in my skull, scalp and also breast. It is not breast cancer though. Seriously bizarre!

We just put one foot in front of the other, what else can you do?
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

ruth1
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Re: Learning to live with Metastatic B C

Postby ruth1 » Thu Mar 15, 2018 4:14 pm

Nice to see you posting Jan - don't envy you that treatment but its got to be keeping you here - hope you have good days inbetween the injections. :hugs:
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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jayem
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Re: Learning to live with Metastatic B C

Postby jayem » Thu Mar 15, 2018 12:22 pm

This is a brilliant article and one to which I really relate also, despite my mets developing from Neuroendocrine cancer. It is somewhat bizarre that the treatments for the cancer make me sicker than the cancer itself. But, hey, I look so well!
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

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mum2chloe
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Re: Learning to live with Metastatic B C

Postby mum2chloe » Tue Mar 13, 2018 8:29 pm

Brilliant article all relevant raw and true.
Dx July 2002 age 28. ER, Her2 pos 96mm tumor. 8/12 nodes.
Mast. Chemo AC & Tax,Rads, Tamoxifen & Zolodex,
Nov 2008 Oophorectomy, Arimidex, Femara.
Oct 2011 Recon surgery LD flap
May 2012 Dx Liver mets , 2yrs Abraxane & Herceptin.
June 2014 Aromasin & Herceptin

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Janette
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Learning to live with Metastatic B C

Postby Janette » Sat Oct 28, 2017 9:06 pm

ABC News: I don't look like I have cancer, but I've had to learn to live with this incurable disease.

http://www.abc.net.au/news/2017-10-13/m ... se/9040552
Janette





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