Stage 4 hope to share

Please feel free to read, share your thoughts, your stories and connect with others!
mtmama
Posts: 4
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: 153
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 @30, shit still here

Pyro70
Posts: 38
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: 1478
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 mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

Pyro70
Posts: 38
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 13 guests