Bad news yesterday

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sat Jan 07, 2017 9:55 am

Pita wrote:Hugs and prayers for today Beans, 12:30am now...Nite oxo



Thanks Pita, I slept all day and night for the most part yesterday. But I did wake long enough to pray, you of course were included. I keep you in my daily prayers as well.

Hugs to you,
Beans
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sat Jan 07, 2017 9:56 am

Ajane wrote:{{{Hugs}}} and prayers, Beans.


Thank you Ajane.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sat Jan 07, 2017 9:58 am

Marylandmaniac wrote:
BeansMama wrote:
Marylandmaniac wrote:Beansmama,

I am so glad you got approved for the immunotherapy. You will be in the 60%!!! You are young and strong and positive and such a light in this world!

I keep you in my prayers. Are you on Facebook? I joined Colontown which is a closed group and very supportive as well. I know they have been very busy because there was a news report that mentioned them.


I am so glad my insurance approved 13 cycles. My oncologist was surprised as well. I am praying to be part of the 60%.

I am on Facebook but have never heard of Colontown. Is it one you need to be invited to join or can you ask to join on your own?

Keeping you in my prayers as well.


You go to the Colontown Public Library group on Facebook which is public. There you can request to be added. They will send you a friend request and then an email with instructions. Basically you give them a brief introduction about yourself. I know they have had a lot of requests recently so if it takes a few days that is why.

I hope and pray that your 13 cycles aren't too taxing on you and that you are NED after!!


I will check it all out. Thanks Maryland!!!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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

Re: Bad news yesterday

Postby Maggie Nell » Sat Jan 07, 2017 1:28 pm

BeansMama wrote:
Maggie Nell wrote:Rut roh!!.....earworm..... :shock:

Haha! Great one Maggie! I'm on Opdivo, have a song for that one? If so I can download it, and sing your lyrics while getting my treatments! I bet my nurse would love that!!!!! (I happen to think I have a spectacular shower singing voice, but my family tells me otherwise)


Well, off the top of my head....

Heigh ho, heigh ho
it's Opdivo we know
We keep on singing la la la

I lubs my Opdivo

O-P-D
I-V-O
M-O-U-S-E

:shock:
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.

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Bad news yesterday

Postby Pita » Sun Jan 08, 2017 12:47 am

That was good too!!! and especially off the top of your head :lol:
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sun Jan 08, 2017 8:10 am

Maggie Nell wrote:
BeansMama wrote:
Maggie Nell wrote:Rut roh!!.....earworm..... :shock:

Haha! Great one Maggie! I'm on Opdivo, have a song for that one? If so I can download it, and sing your lyrics while getting my treatments! I bet my nurse would love that!!!!! (I happen to think I have a spectacular shower singing voice, but my family tells me otherwise)


Well, off the top of my head....

Heigh ho, heigh ho
it's Opdivo we know
We keep on singing la la la

I lubs my Opdivo

O-P-D
I-V-O
M-O-U-S-E

:shock:


Thanks Maggie!! Not bad for off the top of your head! I shall irritate my kiddo with that all day! :mrgreen:
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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

Re: Bad news yesterday

Postby Maggie Nell » Sun Jan 08, 2017 9:09 am

I feel some Rodgers & Hammerstein coming on.....I'm going to lie down until it
goes away! :shock: :roll: :mrgreen:
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.

Need2talk
Posts: 32
Joined: Sun Oct 02, 2016 7:24 pm
Facebook Username: Janicejones

Re: Bad news yesterday

Postby Need2talk » Sun Jan 08, 2017 10:57 pm

I was diagnosed in September of this year, and you always responded to everyone of my questions. You are an amazing person and I check on this site quite frequently to check on you! You can definitely be part of this 60 percent and there are new things every day. You will remain in my thoughts and prayers!!!!

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WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Bad news yesterday

Postby WriterGirl1969 » Sun Jan 08, 2017 11:41 pm

Maggie Nell wrote:...when my surgeon came up, took a look at it ..went mmmhmmm then dramatically ripped it in half, then into little pieces - threw it all up in the air and said....

"Oh, look, it's snowing!........You ain't dying on my table or under my watch".

It was way empowering when he made that gesture being Good Friday, Easter and with all that rich symbolism.

I was under the influence of some mighty fine pharmaceuticals though, but it was the right support I needed at the right
time, when that surgeon took up the fight and scared the bat-nurse off. Doctor sent me the message that I was going
to have all the time in the world to get my house in order. Just in case.


That is an *awesome* story, and so true. The right support at the right time can really make all the difference. Thanks for sharing that one, Maggie Nell! :)
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Bad news yesterday

Postby WriterGirl1969 » Sun Jan 08, 2017 11:47 pm

BeansMama wrote:Haha! Great one Maggie! I'm on Opdivo, have a song for that one? If so I can download it, and sing your lyrics while getting my treatments! I bet my nurse would love that!!!!! (I happen to think I have a spectacular shower singing voice, but my family tells me otherwise)


Never fear! As I am always keen to remind my father (who sometimes sings so off key he does harmony without meaning to), all you really have to do is "make a joyful noise." :wink:
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Bad news yesterday

Postby TXLiz » Mon Jan 09, 2017 1:56 am

Late night browsing and stopping in to say hello to Beans Mama. Hoping and praying for you and your fam. Opdivo looks very promising from the info I found online! We got your back Mama so get your rest and hug your babies!
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Mon Jan 09, 2017 2:17 am

Need2talk wrote:I was diagnosed in September of this year, and you always responded to everyone of my questions. You are an amazing person and I check on this site quite frequently to check on you! You can definitely be part of this 60 percent and there are new things every day. You will remain in my thoughts and prayers!!!!


Thanks Need2Talk! I still pray for you every day as well.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Mon Jan 09, 2017 2:21 am

TXLiz wrote:Late night browsing and stopping in to say hello to Beans Mama. Hoping and praying for you and your fam. Opdivo looks very promising from the info I found online! We got your back Mama so get your rest and hug your babies!


Thanks Liz! We are hoping the Opdivo does well. So far the side effects are definitely not as bad as the chemo side effects, but we all know how that can change over time :D
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Mon Jan 09, 2017 2:22 am

WriterGirl1969 wrote:
BeansMama wrote:Haha! Great one Maggie! I'm on Opdivo, have a song for that one? If so I can download it, and sing your lyrics while getting my treatments! I bet my nurse would love that!!!!! (I happen to think I have a spectacular shower singing voice, but my family tells me otherwise)


Never fear! As I am always keen to remind my father (who sometimes sings so off key he does harmony without meaning to), all you really have to do is "make a joyful noise." :wink:


That is right! Joyful noise is a wonderful thing!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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Green Tea
Posts: 461
Joined: Mon Oct 24, 2016 10:48 am

Colontown

Postby Green Tea » Mon Jan 09, 2017 10:00 am

Marylandmaniac wrote:... Are you on Facebook? I joined Colontown which is a closed group and very supportive as well. I know they have been very busy because there was a news report that mentioned them.

Colontown News Report:
http://www.nbcnews.com/health/cancer/colon-cancer-patients-seek-latest-treatments-through-social-media-n700591

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