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 » Sat Feb 10, 2018 9:02 am

NH Mike how are you doing? You’ve been through so much too. I’m only strong because I’m in crisis mode and don’t have a choice I just pray and leave it in Gods hands and do what I can. Maybe I should hold back on what’s happening, I really don’t want to upset anyone. Everyone here is going through there own struggles and worries. All my love and prayers 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: 965
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Sat Feb 10, 2018 9:49 am

Zig2017 wrote:NH Mike how are you doing? You’ve been through so much too. I’m only strong because I’m in crisis mode and don’t have a choice I just pray and leave it in Gods hands and do what I can. Maybe I should hold back on what’s happening, I really don’t want to upset anyone. Everyone here is going through there own struggles and worries. All my love and prayers Mrs Ziggy


I think that you should say what's happening as it can potentially help other people. I sometimes find it hard to read about the difficulties of so many other people.

I have my struggles too but they often seem small compared to others.
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
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

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Robino1
Posts: 346
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sat Feb 10, 2018 11:04 am

Zig2017 wrote:NH Mike how are you doing? You’ve been through so much too. I’m only strong because I’m in crisis mode and don’t have a choice I just pray and leave it in Gods hands and do what I can. Maybe I should hold back on what’s happening, I really don’t want to upset anyone. Everyone here is going through there own struggles and worries. All my love and prayers Mrs Ziggy


Please don't hold back! Bad or good, I might be in those same shoes. Better to be prepared than to go in blindly.
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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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 Damnit
BRAF V600e

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LPL
Posts: 343
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: any peeps with BRAF mutation on here?

Postby LPL » Sat Feb 10, 2018 12:50 pm

Dear Ms Zig,
You wrote:
I’m only strong because I’m in crisis mode and don’t have a choice I just pray and leave it in Gods hands and do what I can. Maybe I should hold back on what’s happening, I really don’t want to upset anyone.

Please don’t think that you should not write here. Someone might have experience and can advice.
Finding strengh (you didn’t even know you had..?) in ”crisis mode” is something that I can relate to. And many others here too I would think. It’s almost like you can switch on extra energy and act like a machine at times when needed.
Whishing & hoping all the best for you & your DH. /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

NHMike
Posts: 965
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Sat Feb 10, 2018 1:45 pm

I'm only saying that reading about the difficulties of others is often tough on me but that's just my reaction. My usual approach to dealing with that is to withdraw from the forums for a while and maybe trying to think about something else for a while. I don't want anyone to stop writing on my account - I think that people do better when they let it out.
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
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 » Sat Feb 10, 2018 6:11 pm

Thanks everyone, I do share sometimes in the hope someone can relate. I wish everyone the best! We learn from each other.
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

mhf1986
Posts: 99
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Sun Feb 11, 2018 6:01 pm

I'm not claiming I'm amazing...Any supportive spouse, friend, relative, or buddy of a patient is a rockstar.

The patients are the real heroes.
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: hemicolectomy (descending), perm. colostomy, CEA 114
11/16: port in, then FOLFOX + Avastin
4/17: CEA 11
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, change to CAPOX+A
12/17: CEA 29
2/18: CT scan stable, CAPOX no fun, back to FOLFOX+A

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Mon Feb 12, 2018 6:29 am

Mr Ziggy and all of you are hero’s. He puts up with a lot from medicine and side affects which I don’t know I could do. I’ve had chemo and it’s tough. But for people with metastatic disease it’s ongoing they don’t get a break. With doctors trying this or that, trying to figure out what will work. Even at Sloan they don’t have all the answers, but I’m so grateful we have the doctor we do. This is all she does all day long! Just colon. I have to say they have helped him a lot. I don’t know if he’s going to treatment tomorrow. He might have to go to the hospital. Can’t even keep water down. Got a call in to Sloan this morning. Will find out.
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: 346
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Mon Feb 12, 2018 8:31 am

Prayers!!

Keep us posted. {{{{hugs}}}}
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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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 Damnit
BRAF V600e

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Shana
Posts: 227
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: any peeps with BRAF mutation on here?

Postby Shana » Mon Feb 12, 2018 11:18 pm

Robino1 wrote:My CEA marker climbed again after going back down a bit after the last increase.

What this means? I have no clue. A bit disheartening for sure. Just saw the results so I'm still processing. I guess I will have to wait for the next check.


Robin,

Waiting and wondering are tough, no doubt. I know you're strong and optimistic and you will get through this because of who you are but that doesn't mean it's easy. Sending you lots of positive thoughts and hugs!

My CEA was down from the stratosphere to 38.7 in Dec and I did the happy dance! Down again to 33 in January and did another happy dance.. Feb results today showed 36.5.. no dance :( small increase which oncologist said is not significant enough to be concerned... but she wanted to discuss increasing chemo dosage to see if I could tolerate a higher dose so it gave me mixed signals. I agreed to increase dosage today and I know it's going to mean more side effects. I need to make an appointment for next CT for March 2nd and feel more anxious now of course.

"Sometimes your journey will take you off of your path... it's still the same journey" Leigh Standley
DX - 12/16
MSS - KRAS wild
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage

Removal of primary tumor and resection still on back burner. Have to be able to be OFF chemo one month prior and one month after surgery and evaluate benefit vs risk.

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Robino1
Posts: 346
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 Feb 13, 2018 7:55 am

Thanks Shana :)

Decreases are SWEEEEEET! Increases, notsomuch. Putting all thoughts of what if's out of my mind and concentrating on not letting it get to me until I get the next test.

Planning upcoming events (multiple families coming end of March, beginning of April) and making sure I'm ready for a crowd of grandkids! The families will overlap for one night. 16 people total :mrgreen: It will be sweet chaos! :lol: Grandkids ages range from 18 all the way down to 2.

They are all from Michigan and the weather here in Florida will be a much welcome change for them. ;). Pool heater will be on to the glorious temp of 85* so even if the weather is not as cooperative, the water babies (whole family loves swimming) will still be able to enjoy the pool.

As you can see, my mind is concentrating on living. Each day is a gift and I'm unwrapping each one to its fullest. I will deal with the tests when I have to. Not before.

Oh, hubby found out at Christmas he will have his first biological grandchild in August. We just found out it's a boy!! He (and I ) are so excited. He became an instant grandpa when we said 'I do'. Holy cow! That makes 7 grandchildren! Sheesh. Christmas is getting more expensive. :shock:

Ok, I'm rambling now.

Sorry to hijack the thread. :oops:
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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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 Damnit
BRAF V600e

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Feb 13, 2018 8:26 am

Robino you’re not hijacking the thread! I want to hear about grand babies, visits, family and Florida! You sound like you have a very full life with activity and lots of grand kids! So much fun! I wanted to ask, is Florida warm right now? Just wondering how it is in the winter. I’ve been there a few times, are you on the West or east coast?
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: 346
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 Feb 13, 2018 9:24 am

Zig2017 wrote:Robino you’re not hijacking the thread! I want to hear about grand babies, visits, family and Florida! You sound like you have a very full life with activity and lots of grand kids! So much fun! I wanted to ask, is Florida warm right now? Just wondering how it is in the winter. I’ve been there a few times, are you on the West or east coast?



Florida is warming back up. We had an unusually cold winter this year. By cold I mean highs only in the 60's. LOL! Although we did get a couple of days where it only hit in the 50's. Right now I'm sitting outside drinking my coffee and the pool is making a lovely sound with the 'waterfall'. The birds are singing and the temp is 78*. Pool temp is still cold so turning on the heater first of March. We will get some swim time before the arrival of the families. Excellent exercise!

I'm on the East coast. They call this the Treasure Coast. We are about an hour north of Palm Beach. We moved here to be closer to hubby's aging mother. She is 86 and still very mobile and has a better memory than I do! She still drives and she drives better than I do!! ROFL! We've been here for 5 years now and I will not move north again.

Strange how since moving down here I first got colon cancer and hubby got skin cancer on his ear and had to have a nice chunk removed. The surgeon did a great job with reconstructing it. Unless you look at it fully, you don't even notice it. Now my recurrence, thought I had beaten that bugger! I think Florida is killing us! Not really butttttttttt. ;)

These cancers were years in the making, obviously, so it isn't Florida's fault. Just seems like it. :roll:

Please, just call me Robin. I always add the 'o' since Robin is always taken. Robino is usually taken also so I just add the '1'.

I guess my philosophy is live but fight when needed. I have to try to enjoy those moments and not let cancer consume me 'literally and figuratively'. If these are to be my last years on this earth, God I hope not!, I want them to be filled with joy when possible. Not filled with anxiety all the time.

I don't know what the future has in store for me but I can still make my plans. My oncologist told me I've learned to live with cancer. I retorted "I'm living".

Head in the sand? No, I don't think so. Just determined to not let cancer define me.
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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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 Damnit
BRAF V600e

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Feb 13, 2018 11:43 am

Robin I believe you will do very well it sounds like your docs are right on you and you are enjoying life. You just transported me to a warm place very descriptive. I know it’s not easy living with cancer, and worries of unknowns, but you’re right it doesn’t define us!
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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Shana
Posts: 227
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: any peeps with BRAF mutation on here?

Postby Shana » Tue Feb 13, 2018 12:08 pm

Zig2017 wrote:Robin I believe you will do very well it sounds like your docs are right on you and you are enjoying life. You just transported me to a warm place very descriptive. I know it’s not easy living with cancer, and worries of unknowns, but you’re right it doesn’t define us!


I'm in total agreement! We need to live every day to the fullest now more than ever. I'd love to wade into some warm atlantic water right now.. sounds divine!

Good luck with Irinotecan, it's been working for me with minimal side effects but I was on a reduced dose and now bumping up from 100mg in December to 120 mg last session and now 150mg yesterday. You the nurses nickname for it I'm sure lol. It's actually a relief to have my colostomy when output increases! I told my family "it's just all about poop" and try to keep my sense of humor :)
DX - 12/16
MSS - KRAS wild
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage

Removal of primary tumor and resection still on back burner. Have to be able to be OFF chemo one month prior and one month after surgery and evaluate benefit vs risk.


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