Stage 4 hope to share

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mtmama
Posts: 5
Joined: Thu Apr 11, 2019 10:43 am

Re: Stage 4 hope to share

Postby mtmama » Sat Apr 13, 2019 5:34 pm

OP here. Thanks for the links and discussion re: HIPEC. The results don't sound super compelling; I'll share w/my sister and brother-in-law. I'd seen the French study which had sounded more promising.

The vit. C has been very helpful with the chemo side effects, and apparently there is some data to support that it aids in chemo-receptivity, which with a BRAF 600VE diagnosis seems well worth it to them, so he goes weekly.

No Oxiliplatin to my knowledge.

The ND's protocol is based on a lot of nutraceuticals and diet, which is typical. I understand that maintaining strength and weight is critical. Because he hasn't had the extreme nausea, my BIL has been able to maintain a very healthy diet and even gained a pound or two, so it works for him and I think that's an important note. He hadn't even had treatment yet and a medical practitioner said hey, don't change anything/ eat the milkshake, which seemed to set a bit of a low bar. NB: We were on vacation together and he had a margarita. Actually, two. The wheels didn't fall off. :)

I think what's important is he is doing it as he feels he can, and he feels a degree of empowerment making those choices, and those choices are evidence-based and backed by a provider on his team —and he feels they have made a difference.

Thanks again for the thoughts on the HIPEC from the trenches. It's truly helpful.

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Stage 4 hope to share

Postby AppleTree » Sat Apr 13, 2019 10:51 pm

It is always good to read what works for other people, because we are all different.

I take multi vitamin, Vit D and Vit C. Very basic. I eat basically what I feel like. Most things will give me the runs within 2 hours anyway, so I figure I should at least enjoy eating if I have to suffer the consequences. My sister also had chemo. No microwave. Healthy juicing. Hypobolic chamber. IV Vit C. A ton a supplements. Special lamps. She passed in June. What works for one person may not work for another. Perhaps a more important question to ask is, "does it give the patient comfort?"

1 went fro 150 pounds to 99. By the end of my 2nd chemo I could not lift my head at night. I had no idea that my head was so heavy and rested it in the corner of the wing chair. Dr started me out on max dose of Folfox and by treatment 2, I had no hair. Dr was shocked, I was not supposed to lose my hair. After awhile, the dosage was dropped a bit because my platelets were not ready for chemo again on that dose within 2 weeks.

Best wishes to everyone in finding a program that gives you comfort.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Pyro
Posts: 238
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Sun Apr 14, 2019 8:02 am

Pyro70 wrote:Haha yes. I actually have used the screenname pyro70 for many years. “pyro” was the model of my favorite windsurfing sail, 7.0 m2 was the size. So I didn’t even know pyro was taken when I took it ;)


Ever seen Top Gun? Turns out those funny names the fighter pilots all go by is a real thing, thus my name. I was Air Force though, set 1 airfield on fire in Korea.......
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @36, treatment failure

Pyro70
Posts: 99
Joined: Mon Jan 21, 2019 4:25 pm

Re: Stage 4 hope to share

Postby Pyro70 » Sun Apr 14, 2019 5:07 pm

Ever seen Top Gun? Turns out those funny names the fighter pilots all go by is a real thing, thus my name. I was Air Force though, set 1 airfield on fire in Korea.......


Thanks for your service. I wish you luck with Pembrolizumab.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

rp1954
Posts: 1518
Joined: Mon Jun 13, 2011 1:13 am

Re: Stage 4 hope to share

Postby rp1954 » Sun Apr 14, 2019 11:42 pm

Gee, Pyro70, the way you casually toss studies and papers, oncology sites, words n' phrases, strong opinions, and advice out here, you sound kind of medical. Almost like … well, some oncological MDs. Want to give us a hint on any residencies ?
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Pyro70
Posts: 99
Joined: Mon Jan 21, 2019 4:25 pm

Re: Stage 4 hope to share

Postby Pyro70 » Tue Apr 16, 2019 6:30 pm

rp1954 wrote:Gee, Pyro70, the way you casually toss studies and papers, oncology sites, words n' phrases, strong opinions, and advice out here, you sound kind of medical. Almost like … well, some oncological MDs. Want to give us a hint on any residencies ?


Sorry not an MD.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

mtmama
Posts: 5
Joined: Thu Apr 11, 2019 10:43 am

Re: Stage 4 hope to share

Postby mtmama » Mon Jun 10, 2019 4:58 pm

OP with an update on my brother-in-law here. The scan after 8 rounds of Folfox + AVastin showed there was 40% tumor shrinkage and, most important, the peritoneal met was gone. His oncologist is thrilled, and so is he. He continues to stay physically active and feel well.

After consultation with the teams at University of Michigan and MSK, both believed this opened up the door to possible HAI pump option, so he is in consultation with MSK to see what to pursue. Apparently due to the BRAF mutation the mets are sprinkled liberally over the entire liver, and a few more have to disappear before they will consider resection, and I think the hope is to use the pump to get there.

He is currently 10 rounds in and feeling very well on his post-pump disconnect recovery plan. He has added a vit. B regimen that has helped with some tongue tingling/burned sensation and slight neuropathy.

I'll post more after the consult. Healing thoughts to everyone.

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Maggie Nell
Posts: 1075
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Stage 4 hope to share

Postby Maggie Nell » Mon Jun 10, 2019 7:09 pm

Pyro wrote:
Ever seen Top Gun? Turns out those funny names the fighter pilots all go by is a real thing, thus my name. I was Air Force though, set 1 airfield on fire in Korea.......


Better not give yourself away, pyro, they might be seeking afar for folks so as to stick them with the bill for the clean up!
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

stu
Posts: 1089
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 hope to share

Postby stu » Tue Jun 11, 2019 2:56 am

Hi ,

Sounds as though he has had a good result with chemo . I hope the consultation goes well . It sounds like a good plan when the Mets are scattered . The main thing is that he is responsive to treatment .

All the best and keep us informed . We are willing him on .

Take care,

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 .

Pyro
Posts: 238
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Tue Jun 11, 2019 7:32 am

Maggie Nell wrote:
Pyro wrote:
Ever seen Top Gun? Turns out those funny names the fighter pilots all go by is a real thing, thus my name. I was Air Force though, set 1 airfield on fire in Korea.......


Better not give yourself away, pyro, they might be seeking afar for folks so as to stick them with the bill for the clean up!


The best part of being a 24 year old 1st Lieutenant fighter pilot? Everyone expects a screw up now and again, I screwed up and got laughed and then named for it. How many people that age hasn’t messed up with a 40 million dollar airplane? This was darn near 20 years ago, I think I’m safe.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @36, treatment failure

User avatar
Maggie Nell
Posts: 1075
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Stage 4 hope to share

Postby Maggie Nell » Tue Jun 11, 2019 3:32 pm

Pyro wrote:
The best part of being a 24 year old 1st Lieutenant fighter pilot? Everyone expects a screw up now and again, I screwed up and got laughed and then named for it. How many people that age hasn’t messed up with a 40 million dollar airplane? This was darn near 20 years ago, I think I’m safe.


Yet the VA bounced your claim for neuropathy.......think again.
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

Pyro
Posts: 238
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Tue Jun 11, 2019 11:25 pm

Maggie Nell wrote:
Pyro wrote:
The best part of being a 24 year old 1st Lieutenant fighter pilot? Everyone expects a screw up now and again, I screwed up and got laughed and then named for it. How many people that age hasn’t messed up with a 40 million dollar airplane? This was darn near 20 years ago, I think I’m safe.


Yet the VA bounced your claim for neuropathy.......think again.


Well, there’s that. I wasn’t too upset, they got me permanent retirement right away. (Before the magical 20 years)
Still wouldn’t trade it for the world, that’s probably saying a lot on a cancer forum.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @36, treatment failure

Lee
Posts: 5925
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage 4 hope to share

Postby Lee » Tue Jun 11, 2019 11:47 pm

Pyro wrote:[
The best part of being a 24 year old 1st Lieutenant fighter pilot? Everyone expects a screw up now and again, I screwed up and got laughed and then named for it. How many people that age hasn’t messed up with a 40 million dollar airplane? This was darn near 20 years ago, I think I’m safe.


THANK YOU for your service, I am an Air Force Brat (I wear that badge with PRIDE). My dad was a Nav in the US Air Force. He flew with the KC-135 for many years. The Air Force trained him to be on the AC-119 Gunships (Shadow, Special Ops Squadron ) for Vietnam. He lost his life in a plane crash at Ton Son Nhut Air Base on April 28,1970. I've given you a lot of info if you are interested. There is also an association AC-119 Gunships. If you would like more info, let me know.

AGAIN, thank you for your service. Hope all goes well with you. You are in my thoughts and prayers.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Pyro
Posts: 238
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Wed Jun 12, 2019 8:26 am

Lee wrote:
Pyro wrote:[
The best part of being a 24 year old 1st Lieutenant fighter pilot? Everyone expects a screw up now and again, I screwed up and got laughed and then named for it. How many people that age hasn’t messed up with a 40 million dollar airplane? This was darn near 20 years ago, I think I’m safe.


THANK YOU for your service, I am an Air Force Brat (I wear that badge with PRIDE). My dad was a Nav in the US Air Force. He flew with the KC-135 for many years. The Air Force trained him to be on the AC-119 Gunships (Shadow, Special Ops Squadron ) for Vietnam. He lost his life in a plane crash at Ton Son Nhut Air Base on April 28,1970. I've given you a lot of info if you are interested. There is also an association AC-119 Gunships. If you would like more info, let me know.

AGAIN, thank you for your service. Hope all goes well with you. You are in my thoughts and prayers.

Lee


Thanks! And to your father. There is enough here to look it up, funny enough, I was watching a Spooky documentary on YouTube just yesterday. The balls on those guys, definitely not for the faint of heart. It would of been a very interesting mission.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @36, treatment failure


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