Stage 4 hope to share

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

Stage 4 hope to share

Postby mtmama » Thu Apr 11, 2019 11:28 am

Hi everyone, new here. My 47 year old brother-in-law was diagnosed in January with stage IV, BRAF 600VE. Mets to liver, small spots to peritoneum, CEA 37. He had virtually no symptoms, just a suddenly a little pale and flu-y. We were stunned at the diagnosis. He is one of the healthiest people we know.

As part of his support team (reading, research) I did so much searching for stories, and I wanted to share his story so far in return. Disclaimer: I'm not a scientist, direct caregiver, patient or medical expert. I have worked as a journalist covering health-related stories, but I'm not a professional researcher or particular expert in the health field. My only agenda here is to share what has so far been of help or comfort to him and his family, as determined by them.

He's consulted and continues to consult with MSK, U of M, and Detroit Beaumont, where he currently receives care. He's on round 6 of 5FU, scheduled for 12. He has tolerated therapy well, none of the legendary nasty side effects.

The part of his story I wanted to share relates to supportive therapies, diet and fitness. He is a fit and healthy guy to begin with, and is one of the 1 in 100 Americans who ACTUALLY eats 5 servings of veggies a day, works out, etc. This has helped tremendously in terms of his ability to withstand treatment; he has tolerated chemo extremely well, with just some nausea and fatigue in the days after.

One of my reasons for posting here is that even with his top-notch doctor access, suggestions and support for integrative therapies have been absent. They did recommend a Mediterranean diet, but one PA told him "eat what you normally eat; you need to stay strong and keep weight on. A milkshake after chemo is fine." To me, this was a red flag and seemed incomplete.

To complement his care, I researched and found some reputable, evidence-based resources that have been game-changers for him, including:
-Life Over Cancer: The Block Center Protocol for Integrative Cancer Treatment
-Anti-Cancer, by Dr.David Servan-Schreiber
-Anti-Cancer Living: Transform your life and health with the mix of six (by MD Anderson's Lorenzo Cohen)


I also connected him with Dr. Jen Green, the Research Director of KNOW, the Knowledge in Naturopathic Oncology She lectures on integrative oncology across the US and Canada, and she founded the Naturopathic Department at Beaumont Hospitals in 2008. He is her patient, and she put him on a specific protocol to support his treatment. According to him and his wife, this appointment was a game-changer, one full of hope, support, and concrete tactics. All of her suggestions were listed with links to supporting research and evidence and prescribed with the blessing of his primary oncologist.

Even with his pre-existing healthy diet, he made significant changes.

-No beef, pork or dairy, except for the occasional dinner out or treat
-Following a Mediterranean diet
-A once-weekly subscription to Sun Basket to help with prep
-Additional vegan protein sources/shakes to keep weight and energy
-Melatonin and reconfigured sleep schedule, to ensure maximum restful and healing sleep
-IV Vit. C weekly
-Turmeric
-Turkey mushrooms capsules
-Green tea
-Vit. D
-exercise (he already worked out 4-5 days a week, tennis, weights, cardio)
-visualization exercises (targeting the chemo to the tumors)

Of these, the sleep, diet, and Vit. C have seemed to make tremendous difference in how he feels, particularly the Vit. C's effect on chemo side effects.

When he told his oncologist that he was lifting weights, the doc actually swiveled his desk chair around and just stared at him.
He was also shocked that he has yet to miss a day of work.

My brother-in-law is remarkable, and his case is an exception. There's no doubt there are plenty of unknowns ahead and their journey with this is just beginning. But I wanted to share this information as I think it would benefit so many. It has not only helped my brother in law feel better than he felt at diagnosis, but it has given him and my sister a sense of hope, control, and concrete positive action. Their whole family is on board with the diet and exercise, and they walk the talk. He's optimistic, smart, and very very compliant. I think all these things matter. Above all, he's extremely hopeful, and he's living his life each day.

After 5 treatments, CT scan showed shrinkage and his CEA is now 4.6. Doc is discussing HIPEC options, TBD. Onward it goes.

Love to all of you in this community who get up each day, live your lives, and lift others up here in this forum.

Pyro
Posts: 240
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Thu Apr 11, 2019 6:19 pm

Your brother is a lucky man to have you! It all looks like a great plan, a plan never survives first contact with the enemy, just remember that. I have more but can you confirm he’s only currently getting 5FU? That wouldn’t make sense unless he’s currently getting radiation?
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

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

Re: Stage 4 hope to share

Postby mtmama » Thu Apr 11, 2019 8:59 pm

Sorry, you're right, he is actually on Folfox w/Avastin.

Man plans, and cancer has... other plans. Yup. We'll see. If one person connects with an integrative therapy that helps or takes anything from his story, happy for it!

brokenwings
Posts: 67
Joined: Mon Jan 07, 2019 1:50 am

Re: Stage 4 hope to share

Postby brokenwings » Fri Apr 12, 2019 12:21 am

This is so interesting, specially the IV Vitamin C. There are so many studies that explain its benfits to those with a KRAS or a BRAF mutation. There's even a Trial in phase 3 in which some patients get IV vitamin c + their usual protocol.

Best of luck to your brother-in-law!

Hugs,

Paola
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

Pyro
Posts: 240
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Fri Apr 12, 2019 7:16 am

You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and bad on the internet, however, most medical text books are not indexed, trust your doctor. Decide on your own for some of the more complex procedures, for example HIPEC. It seems like the hot item right now and cancer has seen this type of hype before, I’ll attach what I saw and you decide. I was 38 when diagnosed, age is on his side but stage 4 is a long game, don’t forget to live now, he will win some and lose some, you never know what the next scan brings.

https://www.cancernetwork.com/news/no-o ... tal-cancer
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
ginabeewell
Posts: 221
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 hope to share

Postby ginabeewell » Fri Apr 12, 2019 8:34 am

Pyro wrote:You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and bad on the internet, however, most medical text books are not indexed, trust your doctor. Decide on your own for some of the more complex procedures, for example HIPEC. It seems like the hot item right now and cancer has seen this type of hype before, I’ll attach what I saw and you decide. I was 38 when diagnosed, age is on his side but stage 4 is a long game, don’t forget to live now, he will win some and lose some, you never know what the next scan brings.

https://www.cancernetwork.com/news/no-o ... tal-cancer


I have to agree here. Before my chemo started, I announced my intention to eat a healthy diet, plant-based and no refined carbs, no sugar, etc. My doctors all but laughed at me, and said, “That’s great but you may hit a point when all you want to eat is Frosted Flakes, and on that day I want you to eat Frosted Flakes.”

I tried to follow my diet for a few rounds of chemo. I was miserable - and I lost a ton of weight. One morning my “green juice” made me nauseous, and I couldn’t drink another again. Once I got down to 90 lbs (and an infection that landed me in the hospital), my husband convinced me that there was literally NO WAY to get my weight back without being less restrictive on my diet. I had a chemo break and gained back almost 30 lbs.

I still try to eat mostly healthy, but I’ve had to rely way more on dairy and other things that I started out trying to avoid. Now I can keep my weight on - and I’m not miserable. And I do eat Frosted Flakes on my bad days!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 hope to share

Postby boxhill » Fri Apr 12, 2019 10:02 am

5FU plus Avastin with no Oxaliplatin?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

brokenwings
Posts: 67
Joined: Mon Jan 07, 2019 1:50 am

Re: Stage 4 hope to share

Postby brokenwings » Fri Apr 12, 2019 12:11 pm

Pyro wrote:You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and bad on the internet, however, most medical text books are not indexed, trust your doctor. Decide on your own for some of the more complex procedures, for example HIPEC. It seems like the hot item right now and cancer has seen this type of hype before, I’ll attach what I saw and you decide. I was 38 when diagnosed, age is on his side but stage 4 is a long game, don’t forget to live now, he will win some and lose some, you never know what the next scan brings.

https://www.cancernetwork.com/news/no-o ... tal-cancer


Hi there

I have to agree with you and Gina on the food.
I did exactly what she did (a very restrictive diet) when I was diagnosed and I also lost way too much weight. Between the diet and the nauseas from chemo... I just had to stop the diet and eat whatever I could/wanted to.

Concerning HIPEC, there is a lot of disagreement between oncologists right now. But... Prodige 7 was a flawed study. My surgeon participated in that study and told me that their big mistake was using Oxaliplatin as the chemo agent. Usually (whether it's in the US or France) the agent used in HIPEC is mitomicyn C (I hope I spelled it right!). In any case, I think everybody agrees on the fact that the most important part of the surgery is the debulking... so you need a good surgeon!
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

brokenwings
Posts: 67
Joined: Mon Jan 07, 2019 1:50 am

Re: Stage 4 hope to share

Postby brokenwings » Fri Apr 12, 2019 12:12 pm

ginabeewell wrote:
Pyro wrote:You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and bad on the internet, however, most medical text books are not indexed, trust your doctor. Decide on your own for some of the more complex procedures, for example HIPEC. It seems like the hot item right now and cancer has seen this type of hype before, I’ll attach what I saw and you decide. I was 38 when diagnosed, age is on his side but stage 4 is a long game, don’t forget to live now, he will win some and lose some, you never know what the next scan brings.

https://www.cancernetwork.com/news/no-o ... tal-cancer


I have to agree here. Before my chemo started, I announced my intention to eat a healthy diet, plant-based and no refined carbs, no sugar, etc. My doctors all but laughed at me, and said, “That’s great but you may hit a point when all you want to eat is Frosted Flakes, and on that day I want you to eat Frosted Flakes.”

I tried to follow my diet for a few rounds of chemo. I was miserable - and I lost a ton of weight. One morning my “green juice” made me nauseous, and I couldn’t drink another again. Once I got down to 90 lbs (and an infection that landed me in the hospital), my husband convinced me that there was literally NO WAY to get my weight back without being less restrictive on my diet. I had a chemo break and gained back almost 30 lbs.

I still try to eat mostly healthy, but I’ve had to rely way more on dairy and other things that I started out trying to avoid. Now I can keep my weight on - and I’m not miserable. And I do eat Frosted Flakes on my bad days!


Same here!
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

Pyro
Posts: 240
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Fri Apr 12, 2019 12:35 pm

brokenwings wrote:
Concerning HIPEC, there is a lot of disagreement between oncologists right now. But... Prodige 7 was a flawed study. My surgeon participated in that study and told me that their big mistake was using Oxaliplatin as the chemo agent. Usually (whether it's in the US or France) the agent used in HIPEC is mitomicyn C (I hope I spelled it right!). In any case, I think everybody agrees on the fact that the most important part of the surgery is the debulking... so you need a good surgeon!


I hope that would be written somewhere, either way, all that for a month longer (or a few) seems a bit too intense at least for me! I’d also be concerned that most (all?) oncologist aren’t on board, your mileage may vary. The longer I’m on this forking roller coaster, the more I realize that quality of life is more important to me, and eventually, I think most people come around to this.
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: 103
Joined: Mon Jan 21, 2019 4:25 pm

Re: Stage 4 hope to share

Postby Pyro70 » Fri Apr 12, 2019 6:59 pm

I too was essentially symptom free during my 6 months of FOLFOX/avastin. After chemo and before my first surgery I took a 3 week road trip sightseeing and kiteboarding through Egypt. I didn’t follow any specific diet, so anecdotally it’s not required.

You have to remember with all this unproven stuff, it’s essentially a shot in the dark. There are obvious things you need to do (get enough calories, protein, and other nutrients), but beyond that, it quickly turns into quackery. The reason that oncologists turn their nose at this stuff is that most of it is quite ridiculous. It’s sad so many “doctors” take advantage of emotionally vunerable cancer patients to make a quick $$$. Very evil when you think about it...
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

Pyro70
Posts: 103
Joined: Mon Jan 21, 2019 4:25 pm

Re: Stage 4 hope to share

Postby Pyro70 » Fri Apr 12, 2019 7:00 pm

brokenwings wrote:
Pyro wrote:You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and bad on the internet, however, most medical text books are not indexed, trust your doctor. Decide on your own for some of the more complex procedures, for example HIPEC. It seems like the hot item right now and cancer has seen this type of hype before, I’ll attach what I saw and you decide. I was 38 when diagnosed, age is on his side but stage 4 is a long game, don’t forget to live now, he will win some and lose some, you never know what the next scan brings.

https://www.cancernetwork.com/news/no-o ... tal-cancer



Concerning HIPEC, there is a lot of disagreement between oncologists right now. But... Prodige 7 was a flawed study. My surgeon participated in that study and told me that their big mistake was using Oxaliplatin as the chemo agent. Usually (whether it's in the US or France) the agent used in HIPEC is mitomicyn C (I hope I spelled it right!). In any case, I think everybody agrees on the fact that the most important part of the surgery is the debulking... so you need a good surgeon!


I’m 99% certain oxaliplatin is the standard HIPEC drug used in Europe.
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

brokenwings
Posts: 67
Joined: Mon Jan 07, 2019 1:50 am

Re: Stage 4 hope to share

Postby brokenwings » Sat Apr 13, 2019 3:22 am

Pyro70 wrote:
brokenwings wrote:
Pyro wrote:You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and bad on the internet, however, most medical text books are not indexed, trust your doctor. Decide on your own for some of the more complex procedures, for example HIPEC. It seems like the hot item right now and cancer has seen this type of hype before, I’ll attach what I saw and you decide. I was 38 when diagnosed, age is on his side but stage 4 is a long game, don’t forget to live now, he will win some and lose some, you never know what the next scan brings.

https://www.cancernetwork.com/news/no-o ... tal-cancer



Concerning HIPEC, there is a lot of disagreement between oncologists right now. But... Prodige 7 was a flawed study. My surgeon participated in that study and told me that their big mistake was using Oxaliplatin as the chemo agent. Usually (whether it's in the US or France) the agent used in HIPEC is mitomicyn C (I hope I spelled it right!). In any case, I think everybody agrees on the fact that the most important part of the surgery is the debulking... so you need a good surgeon!


I’m 99% certain oxaliplatin is the standard HIPEC drug used in Europe.


That's funny, my surgeon (based in Lyon, France), told me that he usually uses mitomycin C (same as in the US)... At least I know that's what he's going to use on me! He said that it's an old drug but the best for HIPEC... But I couldn't speak for the rest of the surgeons in Europe, I just thought that what my surgeon does is what everybody else does around here!
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

Pyro
Posts: 240
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 hope to share

Postby Pyro » Sat Apr 13, 2019 7:37 am

Pyro70 wrote:I too was essentially symptom free during my 6 months of FOLFOX/avastin. After chemo and before my first surgery I took a 3 week road trip sightseeing and kiteboarding through Egypt. I didn’t follow any specific diet, so anecdotally it’s not required.

You have to remember with all this unproven stuff, it’s essentially a shot in the dark. There are obvious things you need to do (get enough calories, protein, and other nutrients), but beyond that, it quickly turns into quackery. The reason that oncologists turn their nose at this stuff is that most of it is quite ridiculous. It’s sad so many “doctors” take advantage of emotionally vunerable cancer patients to make a quick $$$. Very evil when you think about it...


SIDEBAR - sort of. @Pyro70, good name, funny when youre signing up you never see the guy who took the original name except this time , I digress. the article I found and worry about:

https://www.nytimes.com/1999/10/03/us/h ... ience.html

If you read about th S African study in there, turns out they falsified a bunch of data, came out later. Article show the tail wagging the dog in patient care and it can be, all about money. It’s breast cancer, but people will get the point. I know it seems like I’m comparing this to HIPEC, but obviously they are different. My point is, be careful!
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: 103
Joined: Mon Jan 21, 2019 4:25 pm

Re: Stage 4 hope to share

Postby Pyro70 » Sat Apr 13, 2019 11:26 am

Pyro wrote:
SIDEBAR - sort of. @Pyro70, good name, funny when youre signing up you never see the guy who took the original name except this time , I digress.

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 ;)

Pyro wrote:
the article I found and worry about:

https://www.nytimes.com/1999/10/03/us/h ... ience.html

If you read about th S African study in there, turns out they falsified a bunch of data, came out later. Article show the tail wagging the dog in patient care and it can be, all about money. It’s breast cancer, but people will get the point. I know it seems like I’m comparing this to HIPEC, but obviously they are different. My point is, be careful!


It’s a legitimate worry. CRS/HIPEC could easily have been the next bone marrow transplant. The good news is that even the Prodige7 trial shows a benefit of CRS. Once you’ve gone through CRS adding HIPEC likely isn’t that big of a deal and Prodige7 showed an okay safety profile of HIPEC. My Hipecs were before prodige7. If I had to do it again, I’d likely push for CRS only. However, one also needs to be aware that no trial has randomized people to CRS vs systemic therapy (and likely none ever will). It is possible that all the benefit of CRS seen in prodige7 is due to “patient selection”. I remember I argued this point with an oncologist while in a hospital bed after my last surgery. He strangely either didn’t understand the concept or would admit to it :).... But I suspect CRS does have a benefit. It seems like local control of cancer is a good idea. New data is showing SB radiation for oligometastatic disease has a benefit. The same benefit if locoregional control likely also applies to CRS. In my case, I needed surgery because I was about to become obstructed. Once you’re in there you may as well do CRS/debunking. This likely applies to many patients...


I have a ton of respect for my HIPEC surgeon, he is a very dedicated surgeon and cares about his patients, yet he still is doing HIPECS after Prodige7 and points to all the potential flaws in the study (different drugs, Multicenter, etc.). He is hoping other studies will show a benefit. The quote “a man has a hard time seeing the truth if his paycheck depends on it” comes to mind though...

As the bone marrow situation points out, shenanigans happen with real medicine/doctors despite most being well intentioned. Cancer quacks are are entirely bullshit/evil...
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


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