any peeps with BRAF mutation on here?

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LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: any peeps with BRAF mutation on here?

Postby LPL » Thu Feb 01, 2018 12:42 pm

Dear Mrs Z,
Hugs and prayers from me too.
I have seen others here feeling that nothing is working - and suddenly a ’new’ drug does the trick.
I hope hope hope that Irinotecan will do that for your dear husband!
Kind regards /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

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Fri Feb 02, 2018 7:07 am

Thank you for the well wishes LPL! All my best to you also! He had the Irinotecan yesterday and did very well. He is too weak to walk far so they always have a wheel chair for us. Such great staff. No vomiting! I’m hoping he tolerates it well and is able to see results. We meet with his doctor Tuesday and see if another drug will be added. His tumors on his belly are pretty noticeable now, so we’ll see how they shrink. He looked a bit better yesterday. He doesn’t talk much, but I could tell he wasn’t as ill as the other days. We are keeping up with fluids which is important. He slept well despite getting IV steroids yesterday. Slept like a rock! I was shocked.... hope his appetite improves too. All my best to everyone, love 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

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Robino1
Posts: 451
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 Feb 02, 2018 4:12 pm

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.
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 Feb 02, 2018 10:17 pm

Robino, don’t be disheartened, did they go up a lot? What is doctor saying? Sometimes I just hate those markers! They’ve gone down on Mr Ziggy but obviously it didn’t correspond with what was happening. I’m praying they start dropping like a rock for you Robino, please let me know what happens!
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: 451
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 Feb 02, 2018 10:42 pm

Zig2017 wrote:Robino, don’t be disheartened, did they go up a lot? What is doctor saying? Sometimes I just hate those markers! They’ve gone down on Mr Ziggy but obviously it didn’t correspond with what was happening. I’m praying they start dropping like a rock for you Robino, please let me know what happens!


Just had the test done yesterday so I haven't seen the doctor since. They went up at least 10 points. I won't see the oncologist for another 3 weeks at least. I usually see her every other treatment. Basically every 4 weeks. My CEA is tested when I see her.

It'll take me a bit to get past this but get past it, I will.
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 » Sat Feb 03, 2018 8:20 am

Get past it you will Robino. We have to take it one step at a time. Right now I’m going day by day and so is Mr Ziggy. It is peaks and valleys we celebrate when he feels good and call the doctor when he doesn’t. Right now with everything a mess and financial worries I pray a lot and then do what I can. And so does Ziggy. I keep saying life is so unpredictable I have to leave it in God’s hands. I can’t take on the burdens of next week while we are dealing with today, it would be like carrying a 100 lb box a mile further. I’ll deal with it as it comes. Try to do something you enjoy, today. You are in my thoughts and prayers for a good day Robino. 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: 56
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: any peeps with BRAF mutation on here?

Postby orlar » Mon Feb 05, 2018 12:18 pm

Hi Mrs. Z, I haven't checked in on Mr. Z and you in a while, but have kept you both in my prayers. I start Folfiri+Avastin on Wednesday and hope Mr Z. and I both have good responses to the Irinotecan.
I was fortunate that the Mrs. and I got in a couple quick trips since my chemo ended in Dec.. I hope Mr. Z will feel well enough to enjoy some short outings to visit friends very soon. It does make a world of difference being able to put cancer at the back of the mind, even for a brief time.
Please do not ignore your doctor appointments because as much as you want to be there for Mr. Z, you've got to keep yourself healthy first.
Hugs and prayers to you both!
56yo male DX 5/15/17, Right Hemi colectomy 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D
2/18 PET=liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-7.2
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Mon Feb 05, 2018 1:22 pm

Hi Orlar,
Thank you for the prayers. I definitely hope and pray good ol’ Irinotecan will help for those of you on it and Mr Ziggy. Glad you got out, I’m hoping he will start socializing a bit soon. We have to get the feet and leg swelling under control, and I have to ask about the obstructed ureter as I don’t want his kidney to be damaged. That can’t be good maybe a stent? Will ask tomorrow.

I hope all of you can make it a great day! 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

mhf1986
Posts: 124
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Mon Feb 05, 2018 7:44 pm

Mrs Zig, I can offer the following for swelling as we went through this after the hospital. DH's legs were so big around he could barely walk. Has he developed water blisters from the fluid retention?

First thing we were told was to wrap the legs in ace bandages starting underneath the foot, around the ankle, and up to the knee. If the swelling isn't too bad, check out compression socks instead of ace bandages. There are numerous levels of compression: the higher the number on the box, the tighter. They are a $%^& to get on but do help. DH continues to wear the lowest level now.

Keep legs elevated, either on a foot stool or on a special angled pillow or propped up on pillows in bed.

If he is able, walk and walk and walk but do not stand in one place. The leg muscles move the leaking fluid up.

If you can, while he is lying down, rub his legs starting at ankle and going up towards thighs in long strokes always rubbing up towards waist. I liken it to petting a dog backwards because of the way the hair grows. :roll:

Then there's the protein...eggs...milk...cheese...meat.

Hugs and prayers,
M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 2, ascites mostly gone . :D

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Feb 06, 2018 12:50 pm

MHF good suggestions all! I have been lightly tubing legs up toward heart. Oddly right now not a lot of carbs, he gets chicken with rice or a bit of Mac and cheese which he loves. He also loves yogurt so that as well. He’s also drinking tons of water but don’t know if that hurts the situation or not, but he’s craving it. Thirsty from Irinotecan I guess since it started after that. I try to get him to walk around the house, but he’s weak and so skinny! I’d say at this point maybe 130 lbs but I don’t think so. I will try your suggestions and also get compression socks to help. Thank you! 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 Feb 06, 2018 12:51 pm

Rubbing legs toward heart... god I hate auto correct!!!
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: 124
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Fri Feb 09, 2018 5:36 pm

Sending you some hugs Mrs Z and hope you are doing well. And you too RobinO.

We just got back from blood draw; hopefully back on the treatment path Tuesday. Lab people couldn't find the Dr's orders but I happened to have his email and since DH is at that lab every other week, they did them! Then, surprise...spelling the last name correctly helped them find the orders.

Supposed to rain here all weekend so we may wind up at the mall just walking around and around. At least it's not snow.

Hang in there!

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 2, ascites mostly gone . :D

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Fri Feb 09, 2018 8:34 pm

MHF you are an amazing wife. We don’t realize how much of our time is spent as patient advocates to our hubs and loved ones. So much can be mistaken info in a hospital or clinic setting but we keep all the records etc. in order. Behind the scenes, but right next to our loved ones. My mother in law might have had a cardiac event today, so I spent a lot of hours in the ER before they finally admitted her, plus going home to feed Mr Ziggy and stay with him a bit. She’s 96!!! Had my husband late in life (only child) so she’s obviously concerned and stressed about her son being ill. Poor lady... I felt so bad for her today.
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: 1349
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Fri Feb 09, 2018 8:44 pm

Zig2017 wrote:MHF you are an amazing wife. We don’t realize how much of our time is spent as patient advocates to our hubs and loved ones. So much can be mistaken info in a hospital or clinic setting but we keep all the records etc. in order. Behind the scenes, but right next to our loved ones. My mother in law might have had a cardiac event today, so I spent a lot of hours in the ER before they finally admitted her, plus going home to feed Mr Ziggy and stay with him a bit. She’s 96!!! Had my husband late in life (only child) so she’s obviously concerned and stressed about her son being ill. Poor lady... I felt so bad for her today.


I've been keeping an eye out on Mr. Zig's progress and it's been tough reading it. I'm continually amazed at your strength in support.
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

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O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: any peeps with BRAF mutation on here?

Postby O Stoma Mia » Sat Feb 10, 2018 4:21 am

Zig2017 wrote:Rubbing legs toward heart... god I hate auto correct!!!

I'm sure you can turn off Autocorrect if you don't want it.

In my system there are three options for Autocorrect in the language toolbar:
AUTOCORRECT
( * ) Off
( ) Low
( ) High

Your system might be different.


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