Update on Jan (Jayem)

For those wanting to share with others living with secondary or metastatic breast cancer.
JudyB
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Re: Update on Jan (Jayem)

Postby JudyB » Fri Aug 19, 2016 7:43 pm

I would hate to think that you wouldn't come here for support from us all. I know I found this group wonderful with my recent uterine cancer diagnosis so why wouldn't I like to give you the same report.

Don't you just love the way they say it's rare so we don't know much about the treatment etc., I got the same speil with my second primary. I hope they find a trial for you and that it works wonders. I'm glad that you are feeling well. All the best and please keep in touch.

:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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winterlong
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Re: Update on Jan (Jayem)

Postby winterlong » Fri Aug 19, 2016 7:03 pm

So sorry to hear you have this Jan.
it has not touched your most excellent sense of humour thank God!! :hugs: :rose:
I was just reading about this kind of cancer. So sneaky. :(
Sending prayers and love your way.
I hope you have many many years ahead
and that treatment is benficial on many levels for you.
:heart: winterlong
.

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chrismelb
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Re: Update on Jan (Jayem)

Postby chrismelb » Fri Aug 19, 2016 10:39 am

Dear Jan, i wish you didn't hva eto go thru all this stuff again. Thinking of you, lots of love and hugs
Christine :hugs:
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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Janette
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Re: Update on Jan (Jayem)

Postby Janette » Fri Aug 19, 2016 1:04 am

Hi Jan,
I would be upset if you didn't feel you could post here as I'm sure others would too. Cancer is cancer and secondaries are secondaries. I remember talking to a lady at a garage sale who had a rare cancer of the sinuses that Westmead Hospital had only ever had 2 patients, her and one other. I remember thinking how fortunate we are that so much research and funding goes to BC.

I dearly hope you can take part in a successful trial. We want you around for a lot longer than a couple of years and feeling well.

I have a very dear friend defying the odds, who never loses hope and peace. :hugs:
Janette


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jezza
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Re: Update on Jan (Jayem)

Postby jezza » Thu Aug 18, 2016 6:32 pm

I have been thinking about you quite a bit Jan since you posted about your mets. It is upsetting to hear about this in anyone but you are such a part of this forum and we all feel we know you so well that it is really a big shock. Yes I imagine you are googling madly. I would be doing the same as I know nothing about cancers in those areas. I'm sure you will have compiled a heap of questions for your specialists by the time you get to Royal North Shore.

I'm glad at least that you are feeling well and you made me smile when you said that your mum warned you about being common. I was desperate to be a marching girl but my mother would never let me as she said that those girls were common with their make up and fake tans!

Yes please keep us informed ...of course we want to know how you are going and don't you dare think that you are not welcome to post anywhere here.

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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jayem
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Update on Jan (Jayem)

Postby jayem » Thu Aug 18, 2016 6:08 pm

Well, all the test results are in. Unfortunately I have cancer in the pancreas, with mets to the liver and involvement in the abdominal nodes. Quite a spread. The good thing... yes, there is a good thing... is that the cancer is a neuroendocrine cancer, generally slow growing, but, as it is stage 4, no cure. The lack of definitive symptoms for these cancers often means a diagnosis at stage 4 once the spread has occurred.

I start monthly injetions of Sandostatin next week in Port Macquarie but I am being referred to the neuroendocrine specialists at Royal North Shore in Sydney so that they can assess the results and hopefully organise some treatment that will keep me going for a couple of years at least... more would be better.

Neuroendocrine cancers are a group of cancers that are quite rare and one that begins in the pancreas is the rarest of them all. Well, my Mum always warned against being common! Because of the rarity of this group of cancers, established treatments have not really been standardised but there are a couple of trials and my onc said it would it be worth trying for a place.

I have been told that this has nothing to do with the breast cancer and I am just lucky that I have lived long enough to get a second cancer! Woo hoo!

It is quite bizarre that I have these nasties that will ultimately kill me and yet I do not feel that unwell. For those who know me, I am devouring the net trying to find out all I can about what I have and what treatments are out there. Apparently Australian researchers are at the forefront so I must be thankful I live here where the medical system is so good.

I was uncertain about posting on here as this is for secondary breast cancer but Janette said it would be fine. If this is problematic for anyone, please let me or Janette know.

I will update once I have more information from the NETs multidisciplinery team at Royal North Shore.
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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