If you want prayer stop in here!

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Pyro
Posts: 294
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Tue Aug 13, 2019 3:40 am

Thank you folks, I KNOW it helps. My oncologist punted until next week, told me I still needed to heal from my emergency blockage surgery. I’ve missed 3 infusions at this point and I don’t meet with the oncologist until next week, he knows where my heart lives in this issue. Comfort care sounds so good.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Mohrfamily
Posts: 168
Joined: Tue May 22, 2018 4:04 pm

Re: If you want prayer stop in here!

Postby Mohrfamily » Sat Aug 17, 2019 9:09 am

Please keep up the prayers my DH had and MRI this week that contradicts what the PET says that his liver is worse the MRI and CEA say smaller not bigger!

Hope is alive and well in His name and my soul!
DH dx officially stage IV with liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: If you want prayer stop in here!

Postby jep » Wed Aug 21, 2019 5:16 am

Hey everyone . . . my husband and I will be heading off the the hospital this morning for his ARP surgery (he is also have 2 para aortic nodes removed) . . . Please pray for him . . . thank you!
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

Wewillfight
Posts: 12
Joined: Sun Mar 03, 2019 5:27 am

Re: If you want prayer stop in here!

Postby Wewillfight » Wed Aug 21, 2019 5:29 am

@pyro

I pray for you.

Just wondering would youse consider trying the stivarga+keytruda combo before stopping chemo or is that what you have tried.

All the best to you and fam
40 y/o
Diag Nov 2016 stage IIIc, surgery, colostomy, 2 lymph involved
6 months FOLFOX
NED
Nov 2018 recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
Clear scans
August 2019: small bowel inflammation, partial blockage symptoms

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: If you want prayer stop in here!

Postby stu » Wed Aug 21, 2019 5:52 am

All the best Jep ! Looking forward to hearing he is safely through .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: If you want prayer stop in here!

Postby boxhill » Wed Aug 21, 2019 9:08 pm

I have been thinking about our member from New Zealand who is a Salvation Army member and quite a devoted Christian (self described). I wondered if anyone here might know how he is. I haven't seen a post from him for a long time and I have been worrying. Unfortunately I can't recall his screen name.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

CrossfitChick1980
Posts: 53
Joined: Wed Nov 25, 2015 9:40 pm

Re: If you want prayer stop in here!

Postby CrossfitChick1980 » Wed Aug 21, 2019 9:57 pm

Hello, I would like to request prayer. Ever since my husband passed away, I have been struggling in so many ways. For those who pray, please pray for me, our 4 daughters, and the will to continue on despite this life being so different.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

Mohrfamily
Posts: 168
Joined: Tue May 22, 2018 4:04 pm

Re: If you want prayer stop in here!

Postby Mohrfamily » Thu Aug 22, 2019 4:46 am

Jep, pyro, and Cross fit

I will think of you all today (continued for pyro)

My husband is terrified of surgery also but understands its a necessary thing if he wants "cured"

CrossfitChick1980 : I hope and pray for your "new normal" to ease in difficulty as time passes.
I pray that this is a post I never have to make on behalf of my husband's own diagnosis as our children are 5 and almost 8 and my step son 11 next week! You and your family are in my thoughts and prayers
DH dx officially stage IV with liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

Pyro
Posts: 294
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Thu Aug 22, 2019 8:49 am

Wewillfight wrote:@pyro

I pray for you.

Just wondering would youse consider trying the stivarga+keytruda combo before stopping chemo or is that what you have tried.

All the best to you and fam


I am MSS, that being said I did Keytruda and it failed. I’ve tried all primary and secondary treatments, I’m not a trial type of person either. I will not go into the last best days of life suffering from chemo/treatment.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Wewillfight
Posts: 12
Joined: Sun Mar 03, 2019 5:27 am

Re: If you want prayer stop in here!

Postby Wewillfight » Fri Aug 23, 2019 1:12 am

Pyro wrote:
Wewillfight wrote:@pyro

I pray for you.

Just wondering would youse consider trying the stivarga+keytruda combo before stopping chemo or is that what you have tried.

All the best to you and fam


I am MSS, that being said I did Keytruda and it failed. I’ve tried all primary and secondary treatments, I’m not a trial type of person either. I will not go into the last best days of life suffering from chemo/treatment.


Totally with ya but this is becoming a main stream 3rd line of treatment now off label

https://www.targetedonc.com/news/regora ... h-mss-mcrc

I hope you are doing okay.
40 y/o
Diag Nov 2016 stage IIIc, surgery, colostomy, 2 lymph involved
6 months FOLFOX
NED
Nov 2018 recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
Clear scans
August 2019: small bowel inflammation, partial blockage symptoms

Pyro
Posts: 294
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Fri Aug 23, 2019 1:01 pm

Not with this.....

All-grade treatment-related adverse events (TRAEs) were seen in 100% of patients. The rate of grade ≥3 TRAEs seen overall was 40%. The most common grade ≥3 TRAEs were rash in 12%, proteinuria in 12%, palmar-plantar erythrodysesthesia in 10%, and liver dysfunction in 6%.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Wewillfight
Posts: 12
Joined: Sun Mar 03, 2019 5:27 am

Re: If you want prayer stop in here!

Postby Wewillfight » Fri Aug 23, 2019 3:10 pm

Did you have bad reaction from keytruda when you tried the monotherapy?

You withstanded alot with other chemo agents ... i wouldnt think reactions will be any worse than say cetuximab which but significant time for many and is manageable

Just spinning this as gunning for you to beat this awful thing

Youre a warrior - i wish you all success with any option chose.
40 y/o
Diag Nov 2016 stage IIIc, surgery, colostomy, 2 lymph involved
6 months FOLFOX
NED
Nov 2018 recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
Clear scans
August 2019: small bowel inflammation, partial blockage symptoms

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: If you want prayer stop in here!

Postby Rock_Robster » Sat Aug 24, 2019 1:02 am

Pyro wrote:Not with this.....

All-grade treatment-related adverse events (TRAEs) were seen in 100% of patients. The rate of grade ≥3 TRAEs seen overall was 40%. The most common grade ≥3 TRAEs were rash in 12%, proteinuria in 12%, palmar-plantar erythrodysesthesia in 10%, and liver dysfunction in 6%.

Full-dose Rego has a pretty disappointing TRAE profile, so it would be interesting to combine a PD1 inhibitor with the results of the REDOS trial = dropping the Rego dose way down and seeing if the same response can still be achieved.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Pyro
Posts: 294
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Sun Aug 25, 2019 10:27 am

Wewillfight wrote:Did you have bad reaction from keytruda when you tried the monotherapy?

You withstanded alot with other chemo agents ... i wouldnt think reactions will be any worse than say cetuximab which but significant time for many and is manageable

Just spinning this as gunning for you to beat this awful thing

Youre a warrior - i wish you all success with any option chose.


I appreciate your help but I’m not beating this awful thing. 90 chemo treatments and multiple surgeries on the same organs only to have it come back in those organs tells me something. I’ve been through to much treatment pain to ever do it again, it’s just too much, patients quality of life is so low on these treatments and I’ve lived it for 4 years. I’m terminal, I’m not going out with chemo in my veins nor be the person that enters hospice 2 days before passing. I have vacations planned and most of my bucket list is complete. I’m a Christian and will go somewhere better where my insides don’t hurt most of the day. I feel better now, mostly recovered from my blockage surgery and going to live it up for a while.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: If you want prayer stop in here!

Postby stu » Mon Aug 26, 2019 3:06 am

Hi Pryo ,

You remind me of someone from my youth . He always seemed talented , musically, intellectually but his sense of humour was what set him apart . He became a thoracic surgeon and to broaden his training he left our shores for a bit and went to one of your finest hospitals . It was there that he discovered he had a rare blood cancer . The reality not lost on his wife , also a medic . He took what he could but also knew when to stop and allow his faith to take over . He wrote a small book . For me a difficult read but a reality .After he wrestled with where you are at and came to a decision and proceeded in that path he focused more on making his days count .

Hope we can support you here as you live life to the fullest where you can . That’s what matters now . Keep the photos coming and we can keep you in our hearts and prayer .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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