Belinda

For those wanting to share with others living with secondary or metastatic breast cancer.
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schoolteacher
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Re: Belinda

Postby schoolteacher » Sun May 11, 2014 8:50 pm

This is such a scary and distressing time for you Belinda. Thank goodness you have such an amazing mum and husband to support you and Lilly.
I so hope your medical team can get this beast under control again and allow you some quality of life :hugs:

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Re: Belinda

Postby Janette » Sat May 10, 2014 9:31 pm

Dear Belinda,
I'm so sorry to hear this latest news, and the devastation you much be feeling at the moment. Gosh I hope you find a treatment to knock it back. I hate that you are going through this.

Your Mum sounds like a gem, Lily would have to be a very special young lady with you as her Mum. :hugs: :grouphug:
Janette


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Re: Belinda

Postby jayem » Sat May 10, 2014 8:08 pm

Belinda, I, too, am so saddened at this news and hope against hope that your medical team can find a regime to ease your distressing symptoms.

Your mum sounds a gem and I am sure she will be a precious support for Lilly. When did she grow up? It doesn't seem very long ago that you were telling us about her starting school!

You have always said what a wonderful support Mike has been and no doubt will continue to be.

Please know you are in my thoughts and, if prayers are okay with you, then you will be in those also.

xxx
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: Belinda

Postby ruth1 » Sat May 10, 2014 7:28 pm

Belinda, cant imagine your grief and how you are managing. Great to get home and be in your own environment. Your Lily sounds amazing. I think our kids are incredible as they blossom and grow despite this rotten disease. Mine keeps me grounded and helps a lot with keeping me from sinking at times. It would be very different if I didn't have her to keep me going. How I hope the Onc comes up with a very effective treatment for you and one that doesn't cause more issues with se's. When do you find out and start?
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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Re: Belinda

Postby Belinda » Sat May 10, 2014 6:57 pm

Thanks Ruth for starting this thread. And old friends and new for your posts. I had a lovely couple of hours at home. Mike has reorganised to make it very comfy and put a bed downstairs so I don't have to tackle the staircase

Yes, it's been a journey alright - it seems worse somehow when it is all written down.

Christine - yeah, have considered Tykerb and Xeloda, and they are still on my list. But given the recent extent of my progression, and that I can't have any more external radiation, this is really a "one shot" go at getting the beast back under control. I had such good results with abraxane (and taxol before that) that a taxane seems like a good bet. And TDM1 seems to be getting great results.

Tykerb and Xeloda are an unknown quantity, and since gemcitabine and carboplatin didn't do their job properly, I am a bit worried about them.

Still talking to my oncologist though.

Jezza - sorry to shock you. I have been so wrapped up in treatment that it even surprised me how little of my recent journey I had actually posted. Yep - that wee girl is 12, taller than me, smarter and calmer and more beautiful than just about anyone I know.

Ruth1 - thanks for reminding me - I need to remember she will be loved and cared for even when I am gone. But I wanna love and care for her :crybaby: :crybaby: Oh dear. Gotta go. Still got some bawling to do. I hate being in grief like this, I have to remember it does smooth over eventually, but right now it feels endless.

I am so glad to find you all here. Thanks for being so kind, and for listening.

Bx
Belinda
Dx 3 Jan 2007, 4x3x3 cm IDC and 2 other tumours 1.5cm each, 6/19+ nodes, ER-, PR-, HER2+, 4 AC, 12 weekly Taxol + herceptin, 30ish rads, Herceptin finished May 08, currently watching a lung nodule.

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Re: Belinda

Postby winterlong » Sat May 10, 2014 3:22 pm

:sniff: :hugs:
Belinda!!
What an awful time yo are having
So sad reading your post.
You sound like a true champion through all this.
I hope you get loads of sweet, pain free time with your family, and can go home soon.
:rose:
winterlong
.

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Re: Belinda

Postby chrismelb » Sat May 10, 2014 2:57 pm

Belinda thanks for such a detailed account of your journey. I am sorry you have ended up in hospital a mess as something I also fear for myself. U will get by this stage and move on with new drugs. Has anyone suggested Xeloda/Tykerb? The beauty of them is NO hospital. I decided to use them as i wanted to change off Herceptin for a bit. I have had a successful run since last June. Just another option for you my HER-2 buddy. TDM1 is next for me also. Gee i hope they get i past PBS shortly. I know a submission was made by Rick De Boer in person about March 20th. Fingers crossed for us both. Good luck xoxo
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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Re: Belinda

Postby The new girl » Sat May 10, 2014 2:08 pm

:hugs: biggest hugs to you belinda....Rosa

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Re: Belinda

Postby ruth1 » Sat May 10, 2014 1:38 pm

Belinda, I cant find the words needed to say to you here - what a difficult and terribly scary time for you and your family. The thought of leaving your child must be devastating. I have my 16 year old daughter and those thoughts have passed my mind over the past couple of years in my dark hours. Your husband sounds wonderful and you have a great Mum too. I hope you can find some peace in knowing that your child is well loved and cared for and that wont change no matter what the future holds. Lets hope the treatments coming provide relief of the awful problems you are currently enduring. I send you the biggest hugs I can. :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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Re: Belinda

Postby jezza » Sat May 10, 2014 11:43 am

Thanks for starting this thread Ruth...Belinda...I, too am at a loss for words but I do appreciate you letting us know how you're going ....also I can't believe that Lil...the little girl we met some years ago at the Adelaide GTG is 12 years old now. I'm sure she is as delightful now as she was then.

Gosh..you have been through so much...really knocked me for six reading your post.I wish you well with your future treatments and send you lots of love. xx

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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Belinda

Postby Ruth » Sat May 10, 2014 11:20 am

Belinda, have just read your journey update and sending you the BIGGEST hug as you grapple with the latest challenges this godawful disease has thrown your way. xxxx I have no words, just my love to share for you, Mike and Lil.
Ruth :kiwi:


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