any peeps with BRAF mutation on here?

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Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Dec 31, 2017 9:13 am

Thank you once again for your response. You are correct. I’m asking a lot of questions because yes I’m thinking ahead for after treatment and protocols that will keep the cancer in check.

He is having a CT scan January 2. Although he is having a robust response, yes you are also correct about HIF2a being shut down, but concerned about other pathways including HIF1a. Also concerned that resistance to therapy will come due to other reactivations of other pathways. They didn’t run the CA19-9 this time and I don’t want to ignore that. But the trial is obviously concerned with those other three pathways. They are strict on trials probably because results can get “muddied” and they want to see if the triplet could be clinically meaningful for people with this mutation. Could be practice changing and someday used as a first line therapy. Who knows...

I think most get about a year, but it’s too early to tell since there isn’t enough info yet on durability as the trial is still going on. People are still taking it 5.5 months later. I’m looking ahead to the possibilities of alternative also. Normally these patients do poorly after second line treatment so I’m getting my “ducks in a row” since he obviously won’t be on the trial forever.

Have a happy New Year!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Dec 31, 2017 9:22 am

PS - the more I study about cancer, the dumber I get. I’ve always been fascinated/appalled at the ability of cancer to mutate itself to survive. The genetic coding and chemistry of the human body is so complex, it just reinforces my belief in God. It can’t be duplicated. We are indeed fearfully and wonderfully made. And I want cancer dead!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Sun Dec 31, 2017 10:40 am

Zig2017 wrote:PS - the more I study about cancer, the dumber I get. I’ve always been fascinated/appalled at the ability of cancer to mutate itself to survive. The genetic coding and chemistry of the human body is so complex, it just reinforces my belief in God. It can’t be duplicated. We are indeed fearfully and wonderfully made. And I want cancer dead!


I've just scratched the surface learning about how adaptable cancer is and you really have to learning about cell biology and immunology to understand cancer and it's basically grad-school level stuff. The genetic coding of cell life cycle and the repair mechanisms have many similarities to very complex software systems.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Sun Dec 31, 2017 11:52 am

So far we seem to be able to catch a lot more ("everything"?) with the expanded blood test, where CEA alone just does not hack it (e.g. CA19-9 and AFP; several indirect cancer markers are helpful too). If you can see markers move above the noise level (with noise reduction), you're more likely able to nail mets earlier, vs a bulkier, more spread surprise on the scans 3-12 months later. Also this can give you several to many whacks at formula improvements. There are definite limits to the drug doses, high dose active vitamins and nutraceuticals have been less limited for us. Even one partial reversal is important with a continuous improvement program and someday becomes today.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Dec 31, 2017 6:14 pm

RP absolutely. I remember looking at his blood work back in July after surgery. Wasn’t happy with it and doc wasn’t concerned his CA19-9 had jumped up a few thousand points to 3100. But his CEA was 26 and she was happy and that’s all she focused on. Have to look at the complete work up and never did get his vitamin D3 tested either. I said you aren’t alarmed that the other tumor marker looks like that??? I’m going to look into what you’ve suggested and get some blood tests done for vitamin defiecency too.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: any peeps with BRAF mutation on here?

Postby rachel2017 » Mon Jan 01, 2018 12:02 am

Zig2017 wrote:NHMike you were right about second opinions and going to a cancer center. If he had stayed at his local hospital I shudder to think... this is absolutely unreal! Dare I hope?!? Yes! We are so excited! And the poor man was crying yesterday. What a difference a day makes. Someday we won’t be doing chemo anymore this is my hope. Immunotherapy and or biologics are really practice changing for these patients. No hair loss, but has a rash and throwing up sometimes. Also constipated. We are working on that. He is MSS not MSI but, this is giving him response were there was none to be had. I’m wondering Mike how they sustain this, or if he has a complete response maybe just monitoring? God this is such a rollercoaster at times, but we are riding high right now! Love to all, Mrs Ziggy


So happy for you guys! That's very good new the CEA drop to 200 just over a month. Most likely he will have a nice scan in a few days later. Wish we all can have a good luck in the new year! Happy new year!
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: any peeps with BRAF mutation on here?

Postby rachel2017 » Mon Jan 01, 2018 12:27 am

rp1954 wrote:So far we seem to be able to catch a lot more ("everything"?) with the expanded blood test, where CEA alone just does not hack it (e.g. CA19-9 and AFP; several indirect cancer markers are helpful too). If you can see markers move above the noise level (with noise reduction), you're more likely able to nail mets earlier, vs a bulkier, more spread surprise on the scans 3-12 months later. Also this can give you several to many whacks at formula improvements. There are definite limits to the drug doses, high dose active vitamins and nutraceuticals have been less limited for us. Even one partial reversal is important with a continuous improvement program and someday becomes today.


Happy new year! What kind of doctor we should go to have the lab orders? Thanks!
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: any peeps with BRAF mutation on here?

Postby rachel2017 » Mon Jan 01, 2018 12:51 am

rp1954 wrote:So far we seem to be able to catch a lot more ("everything"?) with the expanded blood test, where CEA alone just does not hack it (e.g. CA19-9 and AFP; several indirect cancer markers are helpful too). If you can see markers move above the noise level (with noise reduction), you're more likely able to nail mets earlier, vs a bulkier, more spread surprise on the scans 3-12 months later. Also this can give you several to many whacks at formula improvements. There are definite limits to the drug doses, high dose active vitamins and nutraceuticals have been less limited for us. Even one partial reversal is important with a continuous improvement program and someday becomes today.


Hello, rp, do you recommended Japanese Agaricus subrufescens?
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Jan 02, 2018 7:58 pm

Thank you Rachel hope you had a wonderful New a year with family!

Mr Ziggy had his CT scan today, he’s been throwing up lately. We are waiting on results and we’re both hopeful it will show good results. Yes a drop of 1,600 on his CEA was very encouraging.

Next appointment on Tuesday is with Dr Yaeger to review results. I’ll keep everyone posted as to how he is doing. He’s been sleeping ALOT lately.

All my best,
Mrs Ziggy xoxo
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Tue Jan 02, 2018 9:43 pm

My prayers going out that you get great news!

May this be a better year for all of us. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 03, 2018 1:13 pm

Thank you Robino, you also! You’re a great encourager especially with your results! xoxo
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: any peeps with BRAF mutation on here?

Postby orlar » Fri Jan 05, 2018 11:11 am

My best to you and Mr. Ziggy. Hoping you have great news next week!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Fri Jan 05, 2018 1:43 pm

rachel2017 wrote: ...What kind of doctor we should go to have the lab orders?

Some kinds of orders might be specialized enough to require outside support e.g. the Lexington group I mentioned earlier; the lab tests we use do not - all are available through the Life Extension 800 number and probably most labs. We just do the orders ourselves, can do them online - no arguments over "standard" or "insured", we're paying. If you do a baseline survey, this might yield enough information to get doctor(s) to add a few, like CA19-9 or LDH or other markers and panels. The occasional major baseline survey has benefits for us, like picking up an attempted runaway on AFP (a "liver cancer" marker frequent in advanced CRC). Also just a larger base chemistry test (24-30 panels) may pick up some items we use like GGTP, LDH, PT/INR, ESR and/or hsCRP for small incremental cost.

....do you recommended Japanese Agaricus subrufescens?

Some generic Agaricus blazei did not fit our benefit to toxcity parameters, which can include liver stresses reflected in SGOT, SGPT and GGTP. Some of the natural literature warned about this, saying something like "alternate in 30 day cycles" but we have higher goalposts. Other immuno modulators we found more useful included PSK (a specific type Coriolus extract), Biothera WGP, astragulus, and extracts for reishi, maitake and shitake mushrooms. Some of these are linked to particular markers.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: any peeps with BRAF mutation on here?

Postby rachel2017 » Fri Jan 05, 2018 7:43 pm

rp1954 wrote:
rachel2017 wrote: ...What kind of doctor we should go to have the lab orders?

Some kinds of orders might be specialized enough to require outside support e.g. the Lexington group I mentioned earlier; the lab tests we use do not - all are available through the Life Extension 800 number and probably most labs. We just do the orders ourselves, can do them online - no arguments over "standard" or "insured", we're paying. If you do a baseline survey, this might yield enough information to get doctor(s) to add a few, like CA19-9 or LDH or other markers and panels. The occasional major baseline survey has benefits for us, like picking up an attempted runaway on AFP (a "liver cancer" marker frequent in advanced CRC). Also just a larger base chemistry test (24-30 panels) may pick up some items we use like GGTP, LDH, PT/INR, ESR and/or hsCRP for small incremental cost.

....do you recommended Japanese Agaricus subrufescens?

Some generic Agaricus blazei did not fit our benefit to toxcity parameters, which can include liver stresses reflected in SGOT, SGPT and GGTP. Some of the natural literature warned about this, saying something like "alternate in 30 day cycles" but we have higher goalposts. Other immuno modulators we found more useful included PSK (a specific type Coriolus extract), Biothera WGP, astragulus, and extracts for reishi, maitake and shitake mushrooms. Some of these are linked to particular markers.


Thanks! rp, I got the CA19-9 order today and will try to get other orders as well. My mom is under the care of an acupunctrist. She gets 1-2 acupuncture weekly. He also gives her a lot of herb medicine daily. It looks my mom trusts him. I need to do some research and collect some useful information. Wish I will have a lot of time to take care of her.
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Jan 06, 2018 8:42 am

I just looked at Mr Ziggy’s CT results. Thoracic nodes same, left lung has some pleural effusion now, infection?
More nodes in abdominal and pelvic. More of them and a little larger on ones that were there. I could seriously vomit right now. CEA came down 1600 points, but they didn’t run CA-19-9 which always goes up first on him. I suppose clinically that doesn’t matter since the CA19-9 was 132,458. No wonder he’s been vomiting more and sleeping all the time.

Oh my God. I just can’t right now. WTF is this stuff?!?!? Sorry... I’m flipping the f$&@k out right now and will have to pull it together. Sorry for potty mouth. Next mode of attack...
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm


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