Hi Tracy
It’s probab worth considering a RGCC CTCs
Google RGCC and there is a blood test that checks your cancer against all available substances and you can add 5 other substances if you like. For eg cannibis oil CBD it’s expensive as it goes to Europe and you get a more targeted personal listing of what will work for you
Any way there don’t have meds in trials but if your oncologist could get a sample you could get tested before trialing anything
Anyway I think it’s the new way forward in treatment and and going to have it done next week
All the best
Update Tracey
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Re: Update Tracey
I am so sorry to read the news of your progression and prognosis Tracey. You have lived so well for so long. Enjoy your time with those precious grandchildren. You should not have to be wasting time fighting super funds. That makes me cross
You are in my thoughts
You are in my thoughts
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Re: Update Tracey
HI Tracey,congratulation on your new grandchild.
Sorry to hear your news and prognosis, having a hard time with super fund is not a good thing and I hope it gets sorted.
I had never heard of donating your body to science but maybe it's a good thing,and a help in finding a cure for his SH...ty disease. Sending you hugs Tracey,enjoy your Christmas with family and new baby xx
Rosa
Sorry to hear your news and prognosis, having a hard time with super fund is not a good thing and I hope it gets sorted.
I had never heard of donating your body to science but maybe it's a good thing,and a help in finding a cure for his SH...ty disease. Sending you hugs Tracey,enjoy your Christmas with family and new baby xx
Rosa
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Re: Update Tracey
Dear Tracey
May you enjoy your beautiful new granddaughter this Christmas and watching her achieve her little milestones.
I do hope you can get some support as you deal with all the forms that can seem neverending. Perhaps a social worker or the Cancer Council can be of assistance to you.
My thoughts and prayers will be with you. xxx
May you enjoy your beautiful new granddaughter this Christmas and watching her achieve her little milestones.
I do hope you can get some support as you deal with all the forms that can seem neverending. Perhaps a social worker or the Cancer Council can be of assistance to you.
My thoughts and prayers will be with you. 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.
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: Update Tracey
Thank you for updating us Tracey, you are right, you are the healthiest looking sick person I know, you looked great at Christine's funeral, I only wish you were as well as you looked. I am glad to hear about Cascade as I have often thought that I would like to leave my body to science and hopefully in order for them to help understand cancer better. Thank you for choosing to do that too and help all the women who find themselves with this awful disease.
I think of you often and hope that you enjoy what time you do have left. Congratulations on the birth of your granddaughter.
I think of you often and hope that you enjoy what time you do have left. Congratulations on the birth of your granddaughter.
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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Re: Update Tracey
Tracey I am so sorry to know how sick you've been and that you have to face awful things. You have done so extremely well and have been there for me back in my early days and I cant express enough how grateful I was to you and all the ladies that helped me through that time and onwards. Please don't let those superfunds people bully you - find an advocate if you don't have the strength to bully right back until you get what is rightfully yours to use now when you need it. You shouldn't have to spend your very precious time trying to do this stuff. So nice to hear that you have a new grandie to spend Xmas with this year - that will be special and I hope you are well enough to enjoy that fully. What a terrible disease this is and so damn unfair!!
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
Re: Update Tracey
Hi Tracey,
Thanks so much for the update, I always think of you and wonder how you are. I really appreciate you posting to help Andrea also. I'm so sorry to hear what you have been through and so glad you've come through it. Donating your body and tumours for research is hopefully what will uncover new treatments and let's hope a breakthrough to a cure.
You can go to the Super regulatory body if they don't allow the early release of your Super. I'm not sure if the rules have changed from what they used to be.
I wish there was more support we could offer on the forum for those with ABC, I just hope you get all the support you need and deserve. Congratulations on the new Grandchild.
Thanks so much for the update, I always think of you and wonder how you are. I really appreciate you posting to help Andrea also. I'm so sorry to hear what you have been through and so glad you've come through it. Donating your body and tumours for research is hopefully what will uncover new treatments and let's hope a breakthrough to a cure.
You can go to the Super regulatory body if they don't allow the early release of your Super. I'm not sure if the rules have changed from what they used to be.
I wish there was more support we could offer on the forum for those with ABC, I just hope you get all the support you need and deserve. Congratulations on the new Grandchild.
Janette
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Update Tracey
I thought I would give my old friends here an update. I recently became very ill. My cancer has spread to both my lungs and to the pericardium around my heart. My oncologist was monitoring me closely but I unexpectedly got very sick very quickly. I ended up having 2 litre drained from my left lungs plus 800 mls from around my heart. Because of the fluid around my heart I went into cardiac tamponade which meant my heart was having difficulty contracting. So I had a window cut in the pericardium to allow the fluid to drain permanently into my chest so this emergency situation doesn’t occur again. My doctors are now saying my prognosis is very poor. However I have recovered well and look like the healthiest really sick person!
While at Christine Lee’s funeral the Cascade program was mentioned this is a program where you donate your body for autopsy and collection of your tumours within the first 24 hours after death. I didn’t know this previously but my oncologist is involved in this program so I have signed up for it. It allows scientists to look at how all your different tumours have mutated in response to treatment and gives some insight into why some tumours respond to treatment and others don’t.
As my prognosis is now less than a year I have applied for my super. We have an investment property in Mornington that was always intended to be our retirement home. I will hopefully use my super money to furnish it and pay the mortgage for a couple of years as I don’t want to move away from my kids at this time. I also have a new granddaughter Lauren Poppy who was born Remembrance Day. I posted the many super forms this morning so wish me luck with this difficult process. They keep sending me new forms to fill in. It has been a frustrating process with each person I have spoken to telling me something different to the previous person.
While at Christine Lee’s funeral the Cascade program was mentioned this is a program where you donate your body for autopsy and collection of your tumours within the first 24 hours after death. I didn’t know this previously but my oncologist is involved in this program so I have signed up for it. It allows scientists to look at how all your different tumours have mutated in response to treatment and gives some insight into why some tumours respond to treatment and others don’t.
As my prognosis is now less than a year I have applied for my super. We have an investment property in Mornington that was always intended to be our retirement home. I will hopefully use my super money to furnish it and pay the mortgage for a couple of years as I don’t want to move away from my kids at this time. I also have a new granddaughter Lauren Poppy who was born Remembrance Day. I posted the many super forms this morning so wish me luck with this difficult process. They keep sending me new forms to fill in. It has been a frustrating process with each person I have spoken to telling me something different to the previous person.
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance
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