any peeps with BRAF mutation on here?

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Robino1
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Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Thu Dec 07, 2017 3:06 pm

I'm going with: There is still improvement right now! ;)

I get my next CT scan tomorrow and won't know the results until Thursday. So I am going to think positively. I've done 10 sessions with chemo. Not sure what comes next yet. I am ready to keep fighting though! :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

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susie0915
Posts: 840
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: any peeps with BRAF mutation on here?

Postby susie0915 » Thu Dec 07, 2017 3:47 pm

Positive vibes coming your way with your scan tomorrow. Your attitude is awesome. Keep us updated. Praying for good news.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Dec 07, 2017 5:44 pm

Only thinking positive for you scan tomorrow Robino! Def let me know when you get results next week. xo
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: 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 » Thu Dec 07, 2017 7:09 pm

Absolutely :)

Thank you!
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 » Fri Dec 08, 2017 3:34 pm

CT scan is done. I got home and just for shits and giggles, I checked my medical portal and noticed that there was a new lab report posted. My CEA is still declining! Yay!! :D It was 90.7 and is now down to 70.7. Chemo is still working and I have a great feeling about the CT scan.

Crossing fingers, toes and eyes....makes typing VERY difficult... ROFL

Anyway. I will post when I get the results of the CT scan on Thursday.

Keep fighting the fight!
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

NHMike
Posts: 1683
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Fri Dec 08, 2017 3:35 pm

It's got to be cool seeing the mets shrink on imaging. Or at least read about the sizes going down.
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

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

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Fri Dec 08, 2017 3:45 pm

NHMike wrote:It's got to be cool seeing the mets shrink on imaging. Or at least read about the sizes going down.


It's so cool just seeing the numbers go down ;)
Any movement in kicking cancer's ass is an amazing feeling :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 » Fri Dec 08, 2017 6:50 pm

I’m hoping the same. Robino you encourage me. All of you do! I know Mr Ziggy has high numbers and lots of mets but I’m hoping by early January when he gets his CT scan I’ll be able to celebrate too! I wish he responded as well as Robino to the FOLFOX, but hoping these drugs will melt his cancer back. I think that will be my New Years wish for him. You guys all rock with how you responded. It gives me hope! 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 » Sun Dec 10, 2017 8:42 am

Ok so the rash started...on his forehead. He looks like a teenager with acne. I told him he’ll have to start the antibiotic the doctor gave him for when this happens. He of course is pushing back on that. I don’t think Mr Ziggy is going to like it if it gets worse... other than the fatigue he is eating very well. Just nausea sometimes, and then it’s Zofran for that. I was surprised how over-night that rash seemed to pop up! We go in Tuesday to see doc, get labs and infusion. Have a good week everyone!
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
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Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sun Dec 10, 2017 8:59 am

For the nausea, keep a chart of how long after infusion time and the nausea starts. If he can stay ahead of it, it is better.

Example: for myself, my nausea started in the late afternoon after pump disconnect. So I pop a pill about 2 pm on the day of disconnect. That's all that I need for the cycle.

Most side effects are pretty regular in how they manifest themselves. If you can figure out the timing, you can get ahead of them or start working to decrease them early on.

I'm sorry that Mr. Ziggy is experiencing these. Hopefully the drugs are making the cancer absolutely uncomfortable also. Enough to make it throw its imaginary hands in the air and say "I give up!" and go away ;)

It is possible that he may not need to take the antibiotic for the whole rest of the time. I get thrush about 2-3 days after I am disconnected from the 5FU pump. I use the Magic Mouthwash for about 3-4 days when I feel the first signs of it at the edges of the roof of my mouth. It does have to run its course for a bit and I get the rough feeling all over the roof of my mouth. When I start feeling smoothness again, I stop using the Magic Mouthwash (has an antibiotic in there) and I am good until the next bout.

I'm like your husband in that I don't like having to take antibiotics or meds unless absolutely necessary. Sometimes they ARE needed.

Good luck on Tuesday!!!!!
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 » Sun Dec 10, 2017 11:24 am

Thanks Robino! Yes with new meds new symptoms I guess. Also bathroom hasn’t been good, not going. So off I go go for senekot. That’s a good tip about the nausea. He usually gets it if he bends over to pick something up or twists. Also the hiccups. We’ll get through it, though I appreciate insight from you because you are actually experiencing these things and I’m not. All my best! 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

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Dec 13, 2017 8:52 pm

Interesting tidbit yesterday when we met with the oncologist and nurse. They both said separately that they like to see the patients on this protocol getting the rash. Apparently their responders get it! I was surprised and happy to hear that! So was hubs! This is his third week getting infusion and taking the meds. Keeping high hopes for his CT scan January 2nd. All my best, 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

User avatar
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 » Thu Dec 14, 2017 11:25 am

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
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

Achilles Torn
Posts: 103
Joined: Fri Dec 16, 2016 2:41 pm

Re: any peeps with BRAF mutation on here?

Postby Achilles Torn » Sat Dec 16, 2017 7:18 pm

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
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

rp1954
Posts: 1365
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Sun Dec 17, 2017 6:37 am

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 high dose 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.
Last edited by rp1954 on Sun Dec 17, 2017 8:57 am, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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