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TNBC Stage 4 with Fungating Tumour

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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 8:20pm
Thanks for your update, I did not realize you are in the UK, there is a pervasive propaganda media movement here in the USA to denounce "single-payer" health insurance in other countries, like the UK, Canada, etc, from everything you have posted, your wife has had the foremost care, my wife has had some genetic tests, where they have isolated a gene mutation. Perhaps bc/TNBC is the result of genetic mutations, rather than environmental toxins, if it's a case of genetic mutations, the scientists are making strides.
 I had this list of clinical trials, don't know if it can help...

https://clinicaltrials.gov/ct2/results?term=parp+and+Triple+Negative+Breast+Cancer&Search=Search

My wife has had genetic testing through UCSD/Moores Cancer Center, they sent out tissue and blood to :

Guardant360: blood tested for tumor marked cells, after recent therapy, it showed it was not present in my wife's blood system, but this was only 6 months after final chemo (Taxol)

FoundationOne: found highly mutated gene "EGFR" (F795C) > recommended drug called "Lapatinib" FDA-approved, it lookd like this would be in a clinical trial if she has recurrence...her oncologist has placed her with University research for clinical trials


Carris Life Sciences: they basically affirmed the chemotherapy drugs my wife has already had, that carboplatin/cisplatin " have potential benefit"

and...

docetaxol
nab-paclitaxel
paclitaxel             also "potential benefit"

hope this helps .... G.





wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2017 at 6:08am
Dear Gordon,

Thank you so much. This was the kind of information that I was after when I created this thread. I hadn't heard of EGFR mutations previously but when I searched past threads in this forum and online, it looks like the mutation does occur with TNBC. Also we are receiving our Caris Life Sciences results tomorrow. We will discuss them with our oncologist and see what we can do. It may be too late in the day for anything as clinically my wife is very poorly but I'll not die wondering what if either. Take care,

Best regards,

Manc-hubby

Edited by Manchubby - Mar 30 2017 at 6:32am
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2017 at 8:45pm
I  relate to everything you are saying, my wife's oncologist ,I think is very good, he said "Keytruda" has " not been effective for breast cancer going to the lung... but it has shown good results  for melanoma,"..... he seems to be in the forefront of my wife's condition, should it go to the lungs,...

 here is his info, he is a no-BSer...

https://www.scripps.org/physicians/5341-james-sinclair
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2017 at 10:43am
Thank you Gordon. I think the sort of consensus amongst oncologists here now is that breast cancer is not particularly immunogenic as compared to other types of cancer. There are some exceptions as in IMMU-132 is showing very promising results as in almost 70% response rate overall. But even from the results of various presentations at the San Antonio breast cancer conference in December 2016 where combinations of immunotherapy and chemotherapy were used in phase 2 trials, the responses look like they were not very different to the chemotherapy single agent. A LOT of work is yet to be done with TNBC in particular. Anyway we are still awaiting the Caris results but resigned to nothing really. Best regards, Manc-hubby

Edited by Manchubby - Apr 01 2017 at 10:43am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 12:59am
Manchubby,
My prayers go out to your wife and you,I wish I can do more, you are a wonderful husband.
Hugs
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 7:01pm
Thanks for your update, I'm sorry I am not smart enough or wonder with any conviction if my wife's genetic mutation/lab results can translate into successful therapy.

 Like you, we are trying to live each day

G


Edited by gordon15 - Apr 03 2017 at 8:42am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (2) Thanks(2)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2017 at 5:34am
Dear Gordon,

If I may, my personal advice to you as a couple would be when your wife's condition is stable to go and make a lot of memories together. It's not so much as a bucket list but spend time travelling somewhere nice or doing activities that she or you both love doing. There will always be the next treatment or the next scan. Let those not be your milestones in life. Make the most of now and I say this in a positive way. Best regards, Manc-hubby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2017 at 3:38pm
Deeply disappointed with the Caris life sciences report findings that our oncologist received yesterday. Based on the tumour sample biopsy the two chemotherapy drugs they have recommended are Paclitaxel and Capecitabine. These are two drugs where my wife had tumour progression on let alone had a partial response!! See my original post for case history. My oncologist is going to question them in person about these findings. Also no targetable mutations found either. After a ton of tears today, syringe driver it is now for my soulmate......
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:33pm
I'm sorry Carris didn't come up with any new drug formulas to help you wife. They affirmed the drugs you mentioned as a potential benefit, but like I posted before, my wife has had those chemo drugs already. Keep us posted...

wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 9:27pm
About 4.5 hours ago the love of my life and my soulmate, Niki breathed her last breath.She had been given the syringe driver with pain and anxiety medications but the last two hours of her life she suffered from extreme terminal agitation. My poor unfortunate wife wasn't even spared a peaceful death by the almighty God! Rest in peace now Niki. Your suffering has ended whilst mine is just beginning in this world without you. Manc-hubby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 9:42pm
Manchubby,

Words cannot express my sorrow.  They never seem adequate enough when a loved one passes from this horrible disease.  I'm so sorry of Nikki's suffering and your continued suffering over losing your beloved wife.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 9:57pm
Dear Manc-hubby,
Just like Donna says, there are no words. Thank You for letting us know. You have every right to be angry at this terrible disease. It does not make sense and it never will. Please know that so many on this forum will be thinking of you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2017 at 8:05am
Dear Manc-hubby,
I am also at a loss for words to comfort you.  I appreciate knowing so we can send you additional prayers and thoughts.  It's simply devastating, and I'm so sorry.
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2017 at 8:32am
Thank you all for your very kind messages and support. We are overwhelmed by how people have reacted with such empathy to Niki's passing everywhere. I'm sure wherever she is right now she is fighting already for everyone else who is affected by cancer and TNBC, because that is the sort of person she was. A selfless, most kind hearted, noble angel. I also wish everyone the very best in your lives as well. May God bless you all.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2017 at 2:28pm
Words can't express the pain you must be enduring.





Edited by MikeW - Apr 11 2017 at 2:35pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2017 at 5:19pm
Dear Manchubby, I am so sorry to read of your dear Niki's passing. I am sorry for your loss. Much strength for the coming days and weeks ahead, this is a difficult time for you and your family. You'll be in my prayers.
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2017 at 10:16pm
Dear Manc-hubby, Praying for peace and understanding. God bless.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 4:34pm
I'm so sorry of the loss of your wife. I don't have words now but please know I take your comments to heart.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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