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mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member

Postby mariane » Fri Sep 25, 2015 1:25 pm

I ma sorry. I will correct my post. I am still learning about biologicals. There is so much I need to learn.
Last edited by mariane on Fri Sep 25, 2015 1:27 pm, edited 1 time in total.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: New member

Postby KWT » Fri Sep 25, 2015 1:27 pm

mariane wrote:I ma sorry. I will correct my post. I am still learning about biologicals :)


I saw that you're wild anyhow, and the onc already knows this so no biggie.

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member

Postby mariane » Fri Sep 25, 2015 1:32 pm

Yes. I searched for options for KRAS-wild and quadraple negative tumors after I was diagnosed . I knew Avastin by brand name and forgot the international name. I changed my post so I will not mislead anybody. FOLFOXIRI looks promising as first line of treatment but it is toxic.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: New member

Postby Maggie Nell » Fri Sep 25, 2015 11:38 pm

Apparently, Irinotecan is known *ahem* affectionately in this forum as "I-run-to-the-can!"

This thread addresses the trifecta
viewtopic.php?f=1&t=43627
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

Nik Colon

Re: New member

Postby Nik Colon » Sat Sep 26, 2015 5:18 am

Maggie Nell wrote:Apparently, Irinotecan is known *ahem* affectionately in this forum as "I-run-to-the-can!"

This thread addresses the trifecta
viewtopic.php?f=1&t=43627

Lol, funny! I never had that problem, but I have been on oxycodone which is known to cause constipation, so it seems to equal it out :)

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member

Postby mariane » Sat Sep 26, 2015 9:56 am

I am oversensitive to Atropin (given to avoid cramping during infusion) and have constipation for 2-3 days than run-to the can begins :) This Monday is my last FOLFIRINOX cycle.

I try to live relatively normal life. I pray, walk 6 miles every morning without rain, research crc, clean, cook, do homework with my Kindergarteners, read to them. My kids know I am sick. They know I have cancer but they deeply, deeply believe I will be cured one day. I do not know whether I should talk to them about my possible death. I think they overheard too much while adults talked anyway. They pray for me evening without any encouragement. They say they pray for me even on playground. They made books (wrote and illustrated them) for me so I will have something to read in the hospital.
I try to stay optimistic. It is hard. I had good response to systemic chemo - 40-50% shrinkage after 3 cycles of FOLFIRINOX and according to my surgeon tumors looked necrotic on scans. No extra liver disease on scans. The surgeon was sure I will make it to the resection. I have to survive HAI, resection surgery, more chemo than everything depends on biology of the tumor itself. I had rectal tumor - I may have lung recurrence, all kinds of recurrence. I try to console myself that my primary was quadraple negative but only God knows what it's true biology was. It was growing very fast... There is so much science does no know at this point. We only know my mets are chemosensitve but they will mutate. Tumors are unpredictable .... I hope for the best. I have to stay sane for my babies. I have to stand up and fight.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

RickWhosoever
Posts: 47
Joined: Sun Sep 27, 2015 11:47 am

Re: New member

Postby RickWhosoever » Sun Sep 27, 2015 6:35 pm

Praying for you! " Lord, my God, I cried out to you and you healed me" Psalm 30:2
Jan '15 Dx Stage 2 Rectal Cancer
5 weeks chemo/radiation
May '15 LAR
Oct '15 Finished 8 cycles of Oxi & Xeloda
Now - trying to live life to its fullest

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member

Postby mariane » Sun Sep 27, 2015 8:32 pm

Thank You!
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: New member

Postby Maggie Nell » Mon Sep 28, 2015 6:20 am

mariane wrote:
I try to live relatively normal life. I pray, walk 6 miles every morning without rain, research crc, clean, cook, do homework with my Kindergarteners, read to them... I hope for the best.... I have to stay sane for my babies. I have to stand up and fight.


I think, Mariane, that most will agree that the first year after a dx is kinda rough. I was only dx this April after emergency
surgery so I'm still bumbling my way. Trust everything goes smoothly for you with the upcoming procedures.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member

Postby mariane » Mon Sep 28, 2015 8:20 pm

I try to keep hope. All my oncologists seem to be optimistic after my good systemic chemo response but I have my very dark moments. They have already planned my resection. I had last FOLFIRINOX before surgery today and still wear the awful 5FU pump. I cried half of the night before leaving for it. I have my very dark moments. My kids watch me very carefully, come to me, did art projects for me to show, danced in front of me to provide entertainment , kissed my hands when I told them that touching cold objects hurts. They simply bring more tears to my eyes. I try to stay composed for them.
Something cheerful for everybody: my local oncologist who is also a hematologist told me that he treated famous basket ball player (I do not want to mention the name of the big fish of the 90ties publically but everybody can guess) for AIDS 12 years ago. One day he did not see him living next 6 months. The fish is still swimming and doing well :) At that time everybody was searching for HIV meds. He told me that the same race for cure is seen in immunology now. The he is very optimistic in finding something working soon.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member

Postby mariane » Wed Sep 30, 2015 9:31 pm

mom_2_3 I sent you priv a few days ago but I am not sure whether you received it. I still see my message in the colon talk "outbox" but not in " sent messages"
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!


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