any peeps with BRAF mutation on here?

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Robino1
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Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sun Dec 17, 2017 8:50 am

Achilles Torn wrote:
Robino1 wrote:Good to hear that news, I'm sure!! :)

CT scan shows continued positive news!! We've decided to drop the oxi. Since we plan on me being around for a very long time, we don't want to take the chance that there are permanent damages. If it starts going the other way, we can always add it back in.

MRI shows a bulging disk that could be the cause of the jolts I'm feeling across the top of my feet when I bend my neck down. So looks like I'm going to be seeing a new specialist for that.

Bright side: less time in the chemo chair! :D


Glad to hear you are getting good news from your CT scans.

That jolt in your feet when bending your neck is quite likely a side effect from the nerve damage of Oxiliplatin. I had it for about 3 months after my last Oxi treatment and then it when away. It's sometimes known as L Hermittes sign and you can find past posts about it as several people have experienced it after Oxi treatments.

Cheers
AT


I'm fairly sure that it is from the oxi but of course the oncologist says no. I did read on the forum about L. Hermittes so was more certain of oxi being the cause.

Now that oxi has been dropped, it'll be interesting if it goes away.
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

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sun Dec 17, 2017 9:07 am

rp1954 wrote:MRI shows a bulging disk that could be the cause of the jolts I'm feeling across the top of my feet when I bend my neck down. So looks like I'm going to be seeing a new specialist for that.

I'd seriously consider talking to the supernutritional type of integrative MD(s) or ND. Both of us have had near crippling episodes or eras of back problems that were responsive to one or more nutritional recipes based on the old medical research and literature. Several of these happen to have 5FU augmenting, mutant inhibiting or immune building properties too. The NIH has supportive megavitamin C papers on KRAS and BRAF mutant inhibition too. Our own data show cocktails as most successful.

Some of our experiences were high loading doses, then tapered off: 10,000 -50,000 iu of vitamin D3 + 45 mg MK4 (the particular human K2 vitamer), 12 - 20 grams/day of oral vitamin C QID or frequent IV vitamin C, 1-2 TSB fish oil or equivalent concentrate + gamma linolenic acid, 1-9 grams MSM, 2-6 g glucosamine, chondroitin. And less sugar and less weight. When we hit the most important component(s) levels, a lot of pain disappeared in 1-3 days, ultimate healing and taper down over weeks or months. My wife has had this stuff with 5FU for up to years.


I currently am high dosing with D3 and C. I'm also using some other supplements. I've cut out white sugar and just use raw sugar for my morning two cups of coffee. Local honey in my tea in the evening. If my blood counts are low, I switch to processed honey. Now that I'm off the oxi, blood counts should not be as much of an issue.

My weight is great, at 5'6" my weight fluctuates between 129-135. I like to stay at 130 and do weigh myself daily.

I'm not having any pain. It's just an interesting sensation that travels across the tops of my feet. :o :wink:

I will look up that MK4 and have no clue what MSM is?

I'm very pleased with my progress at this point. :D
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

AnonSurvivor
Posts: 18
Joined: Fri Oct 16, 2015 12:04 pm

Re: any peeps with BRAF mutation on here?

Postby AnonSurvivor » Sun Dec 17, 2017 8:32 pm

I was also BRAF V600E and stage IV. I had a right hepatectomy and cholecystectomy in October 2012. Then 12 cycles of FOLFOX/Avastin followed by 8 more of just Florouracil and Avastin. The cancer never returned after surgery.

More detail in viewtopic.php?f=1&t=52785&p=465619&hilit=anonsurvivor#p415796

Robino1 -- there is often a "hangover" of Oxali neuropathy side effects, so don't be discouraged if the effects linger for a while. Mine actually worsened noticeably for about 60 days after I quit it. It is about 95% gone now after almost five years since my last dose.

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Robino1
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Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sun Dec 17, 2017 10:06 pm

AnonSurvivor wrote:I was also BRAF V600E and stage IV. I had a right hepatectomy and cholecystectomy in October 2012. Then 12 cycles of FOLFOX/Avastin followed by 8 more of just Florouracil and Avastin. The cancer never returned after surgery.

More detail in viewtopic.php?f=1&t=52785&p=465619&hilit=anonsurvivor#p415796

Robino1 -- there is often a "hangover" of Oxali neuropathy side effects, so don't be discouraged if the effects linger for a while. Mine actually worsened noticeably for about 60 days after I quit it. It is about 95% gone now after almost five years since my last dose.


I expect to have a 'hangover' of sorts for a while from the Oxi. I know most will probably be temporary and that is fine with me. As long as it does its job.

Congratulations on being NED for so long!!! That is so encouraging! :)

May it continue forever!!! :D
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 » Mon Dec 18, 2017 6:47 pm

Wow. Alon you had all those mutations and BRAF and you survived it. Amazing! I’m hoping the same for Mr Ziggy. He is a thin man to begin with so don’t know about fasting, but can say he likes his green tea and always ate healthy. The 325 mg of aspirin a day is intriguing. I don’t know why some of you responded so well to FOLFOX, and he didn’t respond at all. It just spread to para aortic mediastinum and peritoneal like wildfire. Any thoughts as to why? I really was shocked by it all. His attitude is ok, not fantastic. But I try to be his cheerleader, support and love. Many blessings to you and all of you this season.
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: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Tue Dec 19, 2017 8:01 am

Zig2017 wrote:...It just spread to para aortic mediastinum and peritoneal like wildfire. Any thoughts as to why?

That super high CA19-9 level you mentioned before likely indicates a high level of BRAF activity, high levels of HIF-2a, and velcro like molecules that attach floating tumor cells to blood vessels, that had grown to a high tumor load too. We presumably suppressed KRAS activity, HIF-1a, CA19-9 (measured), and the cancer cells' "velcro" attachment with cimetidine, IV vitamin C, 5FU etc for years at low tumor mass load but some broad seedling dissemination.

Recent papers show that BRAF is more intense with HIF-2a, with higher CA199 levels than KRAS. Matsumoto (2002) and his other papers showed successful addition of cimetidine to daily 5FU for stage III patients with intense CA19-9 staining of their cancer tissues. These heavily CA199 stained stage III patients did not convert to mCRC with cimetidine added; those without cimetidine had the worst OS and all died before even the first cimetidine treated patient died. These papers' stats and markers may imply that cimetidine interferes with BRAF activity or expression, too.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Tue Dec 19, 2017 8:19 am

Robino1 wrote:I will look up that MK4 and have no clue what MSM is?

MK4, menaquinone-4 or menatetrenone, is the human form of vitamin K2 with a special transport molecule. The Japanese prescribed it as osteoporosis drug and as an experimental treatment for liver cancer. We buy it as a supplement, much more affordable but still a little pricey and harder to get (mostly mail order).
MSM stands for methylsulfonylmethane, the oxidized form of DMSO, commonly used for pain relief in the joints with glucosamine and chondroitin. MSM may have other useful properties. It is inexpensive and commonly available in supplement stores, Walmart, etc.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

User avatar
Robino1
Posts: 462
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Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Tue Dec 19, 2017 8:34 am

Tagamet? Or another brand?

Does your wife take it daily/365 yr?
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 » Tue Dec 19, 2017 5:43 pm

RP1954 thank you. I’ve been completely baffled and you explained that very well. When we meet with doctor I’m going to bring up the cimetidine. I’ve got some studying to do and I thank you for laying this all out. This is just an immortal unstoppable monster. I will talk at length after my homework on all of this and see what Dr Yaeger says. I feel like an 5F tornado is about to bear down on the house and I’m hoping we can somehow shut this Godzilla down. 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

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Dec 19, 2017 6:43 pm

RP1954 the protocol Mr Ziggy is on targets EGFR, BRAF and the MEK signaling pathway. They find with the BRAF mutant cancer using a 3 way inhibition of these works better than just using 1 drug. Melanoma had a better response, but that's a different beast. What are your thoughts on this? He is on the Beacon Trial and thankfully is getting all three drugs. If God forbid this doesn't do it, or the cancer mutates like it does, I'm wondering what pathway might then be activated, and how to shut that down? Also wondering how long the response will be on this protocol, four or five months before progression? What next? just rambling and thinking ahead on this. Thanks for any thoughts on this peeps.
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 » Tue Dec 19, 2017 10:44 pm

MSM may have other useful properties. It is inexpensive and commonly available in supplement stores, Walmart, etc.[/quote]

Hello, rp, for stage IV, how many mg cimetidine do you recommend to start? 800mg or 1600mg? The one we can get form Wal-Mart is either equate or Tagamet with 200mg cimetidine. Does that mean we need to take 4-8 pills daily? Thanks a lot!
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

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Fri Dec 22, 2017 12:39 pm

Zig2017 wrote:RP1954 the protocol Mr Ziggy is on targets EGFR, BRAF and the MEK signaling pathway. They find with the BRAF mutant cancer using a 3 way inhibition of these works better than just using 1 drug. Melanoma had a better response, but that's a different beast. What are your thoughts on this?

I'm not working on that area. More chemo types are typically harder on both patient and cancer cells. Our strategy has been find the nicest conventional drugs and modulate them heavily by nutrients with strong anticancer pedigrees and some documentation, based on tissue and blood tests.

...[if] this doesn't do it, or the cancer mutates like it does, I'm wondering what pathway might then be activated, and how to shut that down? Also wondering how long the response will be on this protocol, four or five months before progression? What next? just rambling and thinking ahead on this. Thanks for any thoughts on this peeps.

Are you getting blood results every 2-3-4 weeks?

From our point of view, the primary step forward outside of trials, is adding adjuvants to an existing protocol, after consultations for compatibility, staying on treatment every day. The idea is to undermine cancer with multiple angles and hits, without regrowth during cycles or vacations. Theoretically you might do add-ons with the experimental protocol you're on now, but most likely it means restarting a xeloda based formula with lots of extras. The problem later in the illness is more numerous, bigger/thicker, chemo hardened mets with less organ and immune capacity.

Most people can't find, or won't commit to an intensive enough effort to home in on an effective solution - they make small efforts to finesse the cancer, when major moves are necessary - the blood tests and lots of powerful supplements (e.g. 50,000+ iu vitamin D caps, IV vitamin C and 2 dozen others) with substantial daily chemo. Our advantage has been outstanding quality of life with mild drugs and supplements; maximum tolerated nutrient and chemo/celecoxib dose is a much better living situation than heavy duty conventional chemo.
Last edited by rp1954 on Fri Dec 22, 2017 4:48 pm, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Fri Dec 22, 2017 12:44 pm

rachel2017 wrote: Hello, rp, for stage IV, how many mg cimetidine do you recommend to start? 800mg or 1600mg? The one we can get form Wal-Mart is either equate or Tagamet with 200mg cimetidine. Does that mean we need to take 4-8 pills daily? Thanks a lot!


800 mg was the minimum recommended by the Japanee doctors, LEF supported mostly 1000-1200 mg in 2010, mentioned 1600 mg possible. Cimetidine has a caution with Avastin, grouseman's wife did do both. We used 1600 mg for several years. Cimetidine would be only one small part of the treatment picture in late stage 4 or mCRC when the CA19-9 is elevated. For low peak CA19-9 readings, those with peak CA199 from 0 to under 2 units aka "ultralow", cimetidine is considered fundamentally ineffective with daily chemo.

Again, we used lots of other things for stage IV.
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 Dec 22, 2017 7:51 pm

Again, we used lots of other things for stage IV.[/quote]

rp, thanks for the information. My mom never got the CA199 checked. Should we get the CA199 done before use the cimetidine? If her CA199 is lower than 2, and she doesn't need to try the cimetidine at all. Is it right? What kind of other things we use for stage IV. She is during the chemo treatment now. She is also using Vit D3, Calcium, CoQ10, Vit C, fish oil, herbal medicine and acupuncture right now. She walks two hours daily and doing the Qigong during her walking. She is also doing the self massage. Despite the cancer spreads aggressively. We are trying so hard to maintain her general body condition in order to confront the possible future treatment.
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

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Fri Dec 22, 2017 10:15 pm

rachel2017 wrote:...Should we get the CA199 done before use the cimetidine?....What kind of other things we use for stage IV. She is during the chemo treatment now. She is also using Vit D3, Calcium, CoQ10, Vit C, fish oil, herbal medicine and acupuncture right now.

I've discussed several blood tests that have been useful for us, some frequently, some +-annually or even one time. The longer you have heavy chemo the more it will distort a lot of the blood tests, so sooner is better for the first measurements on irreplaceable data. That limited supplement list and typical doses I would speculate as "mild inflammation, immune and quality of life support." We found these articles useful reading

If Folfox is failing and there is no new magic antibody or trial suggested, her oncologists will probably want to try Folfiri-Avastin next. I would probably avoid mixing cimetidine with Folfiri-Avastin. Folfiri is harsh and others have found cimetidine+Fofiri harsher, but have had success with IV vitamin C and K with supplements added.

The problem that your mom faces right now is finding something that slows or reverses CRC's spread and growth. For us, there have been critical threshholds of adjuncts and well aimed supplements to reverse a biomarker or improve a blood panel, between lots of something and MTD. People often don't get enough of credible types of adjuncts and supplements to visibly move their blood markers in a useful amount. I've even seen this with heavy chemo. This is important several ways. First of course is the need to stop the cancer with adequate doses, but also important, especially with alternative and experimental stuff, is that people need reassurance or they're more likely to quit. 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.

She walks two hours daily and doing the Qigong during her walking. She is also doing the self massage. Despite the cancer spreads aggressively. We are trying so hard to maintain her general body condition in order to confront the possible future treatment.

I interpret that as an aerobic exercise credit for HIF-1a etc.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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