any peeps with BRAF mutation on here?

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

Re: any peeps with BRAF mutation on here?

Postby rachel2017 » Fri Dec 22, 2017 11:24 pm

You also need professional support for the alternatives, where opinions and capabilities will vary greatly. In the best circumstances, several opinions will add up to better answers.

Thx, Where can we get the professional support?
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 Dec 26, 2017 1:40 pm

Ok back to BRAF.... Mr Ziggy’s CEA was 1,807.7 and it’s now .... wait for it..... 207!!!!!! These biologicals are kicking butt. We have a CT scan January 2 so I’m expecting regression. I’ll let you all know what transpires! Happy New Year all!!
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: 1216
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Tue Dec 26, 2017 1:45 pm

Zig2017 wrote:Ok back to BRAF.... Mr Ziggy’s CEA was 1,807.7 and it’s now .... wait for it..... 207!!!!!! These biologicals are kicking butt. We have a CT scan January 2 so I’m expecting regression. I’ll let you all know what transpires! Happy New Year all!!


That's fantastic news - so glad things are heading fast in the right direction.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Dec 26, 2017 6:24 pm

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
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: 1216
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Tue Dec 26, 2017 6:48 pm

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


I was in a similar situation on the surgeon part. The local oncologist was suggesting local surgeons, none of them specialists (we actually don't have any in my state). Folks here and some of my family members recommended the second opinions. They were a huge pain to set up but I'm very glad that I went that route. It's kind of a known thing here and someone will suggest it eventually.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

User avatar
Robino1
Posts: 433
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 Dec 26, 2017 8:20 pm

Zig2017 wrote:Ok back to BRAF.... Mr Ziggy’s CEA was 1,807.7 and it’s now .... wait for it..... 207!!!!!! These biologicals are kicking butt. We have a CT scan January 2 so I’m expecting regression. I’ll let you all know what transpires! Happy New Year all!!


That is fantastic news! :D

Happy New Year and wishes for continued success!!
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
BRAF V600e

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Dec 27, 2017 7:48 am

Thank you Robino. I pray for continued success for you as well. I do believe God wiped away my husbands tears yesterday. What a Christmas gift. He needed encouragement badly. I’ve been through a lot of stuff myself, including stage 2 Breast cancer, mastectomy and chemo. I know what cancer fatigue and pain and chemo feels like. With this perspective it changes you a lot, and helps you to help someone else. Thank God I went through it first and am able to help my husband. Not all caregivers have that added perspective but I can say it helped me figure out what to do for him and ease symptoms etc. It was easier for me to accept it on myself than it was for me to accept this clean living and eating man to get it if that makes sense. We all walk the razors edge, we just don’t fall off at the same time. I wish everyone success in their treatment and love and support from family. Peace.
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

rp1954
Posts: 1311
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Wed Dec 27, 2017 4:26 pm

The problem with both KRAS and BRAF mutants, for patients running out of options, is that they need to re-sensitize the cancer cells to previous medicines, like 5FU etc. This is made tougher by larger, more numerous mets that need more aggressive treatment. Usually oncology quits cold rather than try multimodal and multiple adjunct answers.

There are documented cases where 5FU became effective again with celecoxib or IV vitamin C+supplements (we've used both and more). The principal problem appears to be that patients and doctors take too few, too hestitating, too small steps to be effective, partly because of the lack of highly experienced medical advisors, partly because some specialized information and expertise is dispersed. When we share information here. the more details you post, it can help overcome this problem in both directions.

As for help, we use a local internal medicine MD that is interested in alternative medicine, the most qualified I could find. Read various articles in the LEF reading list. Then we used the free phone consultations at Riordan Clinic (IV vitamin C) and Life Extension Foundation (supplements) for some parts. Medical literature for more. Some people use Block Center or Raymond Chang for additional integrative medicine support, they are pricey. Some people use Lexington.

I view all of these places as offering pieces of a total package. In the end, for us, it is gathering these carefully selected pieces together, calibrated for maximum dose/impact with all our data. We do our own reading/research, ask for feedback, and consult our local doctor. Of course, there are precautions and we use more complete bloodwork, more similar to a trial staff, rather than insurance hobbled clinical medicine.
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 » Wed Dec 27, 2017 7:49 pm

Celecoxib... is that a rheumatoid arthritis drug? Also Mr Ziggy is believe it or not allergic to vitamin c. He breaks out in rashes from eating oranges or lemons especially. Would the IV vitamin c be ok for him to take? Just wondering because I’ve heard good things about vitamin c infusions. I’m guessing eating the fruit and the pulp etc would be different and hopefully the infusion (different delivery) might not give him a reaction?
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 » Wed Dec 27, 2017 7:51 pm

You also mention Pepcid I believe... he had been taking that since FOLFOX but he had progressed anyway. Or should that have been taken with say the IV vitamin?
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: 1216
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Wed Dec 27, 2017 7:52 pm

Zig2017 wrote:Celecoxib... is that a rheumatoid arthritis drug? Also Mr Ziggy is believe it or not allergic to vitamin c. He breaks out in rashes from eating oranges or lemons especially. Would the IV vitamin c be ok for him to take? Just wondering because I’ve heard good things about vitamin c infusions. I’m guessing eating the fruit and the pulp etc would be different and hopefully the infusion (different delivery) might not give him a reaction?


I'm allergic to a lot of fruits like apples, plums, pears and citrus to a lesser degree. But I can eat cooked apples, plums, pears, etc. It might be something in the skin or something that cooking gets rid of.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Dec 28, 2017 8:33 am

Thanks, NHMike. That makes sense. I’d still be a little wary of the IV vitamin C until I explained his allergy first. Don’t want to make him sick from it!
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

rp1954
Posts: 1311
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Thu Dec 28, 2017 11:25 am

You also mention Pepcid I believe... he had been taking that since FOLFOX but he had progressed anyway.
Pepcid doesn't do anything for CRC, only cimetidine does - specifically for CRC tissues overexpressing CA19-9 (and CSLEX1) that are typically KRAS/BRAF mutants. Hence one of the reasons for CA19-9 blood tests.

...Or should that have been taken with say the IV vitamin?
Both tackle related problems with different advantages, and the expanded overlap was favorable for us. This included skipping oxi- and Avastin, although in a pinch we would still consider adding some Avastin.

Celecoxib... is that a rheumatoid arthritis drug?
Yes, but it also helps chemo kill some common CRC stem cells. Keeping CRC in check has been easier for us when using this. We had delayed using it for several years, outside of 1-2 wks post-op.

Also Mr Ziggy is believe it or not allergic to vitamin c. He breaks out in rashes from eating oranges or lemons especially. Would the IV vitamin c be ok for him to take? Just wondering because I’ve heard good things about vitamin c infusions. I’m guessing eating the fruit and the pulp etc would be different and hopefully the infusion (different delivery) might not give him a reaction?
I agree with Mike's answer as one part or possibility. Several others are that MrZ's immune, digestive and/or liver functions may be compromised, can overlap, and could be improved with directed food concentrates like supplements.

Vitamin D3 deficiency is increasingly linked to immune - allergy problems.
https://www.vitamindwiki.com/Allergy+-+Overview
A lot of people have deficiency conditions that are correctable with vitamin D3 + magnesium + vitamin K2, maybe zinc too. Incidently, we actually use a lot of this to boost the immunochemo formulation and measured blood responses anyway.
Liver detoxification is often treated with sulfur compounds like MSM or N-acetylcysteine (NAC). For several less obvious reasons IV vitamin C may be important with NAC during cancer treatment. Also used silymarin, alpha lipoic acid
Digestive problems are multiple in nature and often variously tackled with digestive supplements like pancreatic enzymes or betaine hydrohloride; and/or niacinamide, B6 or B vitamins (with zero folic acid - only leucovorin/folinic acid or natural folates allowed), glutamine or cabbage juice.

Ultimately, you need doctor(s) that you can trust their clinical judgement and who will support you on blood tests, off-label drug, supplement and vitamin uses to do things like this on an accelerated basis.
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 » Fri Dec 29, 2017 11:39 pm

I'm still in the learning stage of all this so please excuse my dumb questions... and thank you for taking the time to answer me, I've truly appreciated it. You are making me think and I love that. Mr Ziggy really isn't on chemo - it's actually targeted biologics that are hitting the EFGR, MAPK (MEK2) and BRAF pathways. If the BRAF is being inhibited, would this then shut down the Hypoxia Induction factor for 1a and 2a? Please excuse my ignorance as I'm just trying to logically figure all of this out. I know you mentioned Cimitedine and 5 FU but he's not on that. Should he take Tagamet? They told him he can only have Pepcid. They are pretty strict with clinical trials as to what you can and can't take unfortunately. I wish more doctors would use alternative options along with traditional medicines, but until that happens yes we do have to seek out doctors who can help in that regard. The more I study all this the dumber I get. It's like opening Pandora's Box!
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

rp1954
Posts: 1311
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Sun Dec 31, 2017 4:56 am

Cetuximab (Erbitux) is the biologic, an engineered antibody. The other two are small molecule, targeted inhibitor drugs where "chemo" becomes a matter of semantics and marketing.

While MrZ is on trial with active drugs, you're stuck with their requirements, practically and ethically. I would focus on collecting his expanded blood results from them (their list will look more like mine) and the scans. Do they have any PET scans scheduled, too? Also, how long will they supply the experimental treatment if it's +- still working? In any case of coming off trial, I think your preparations right now are for a replacement strategy. If you can get PET scans now and later, that might be an additional view of the degree of cancer - BRAF inhibition, too.

...If the BRAF is being inhibited, would this then shut down the Hypoxia Induction factor for 1a and 2a
Mutant BRAF expands the production of HIF-1a and HIF-2a proteins beyond normal hypoxia response. The degree of inhibition for each HIF probably depends on each drug and mutation, although early papers favored HIF-2a activity from BRAF elmination. Probably "too much shut down" can be a problem too.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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