any peeps with BRAF mutation on here?

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Shana
Posts: 342
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 1:28 pm

Mrs. Ziggy,

I finally took the time to go back and read all of your posts from Day 1. Wow, your sharing of all the good and the bad is both heartwarming and heartbreaking at times but I'm grateful that you are able to chronicle the difficult journey. I follow NHMike's journey too, everyone on this forum has so much to offer from their own experiences as well as information about trials and supplements.

I laughed when you wrote about all of this being above your pay grade. I'm with you on that, I feel like I need to go back to school!

Praying for your husband and so many others on here for successful treatment and improved quality of life. I'm glad we all have each other to celebrate the good days and support each other on the rough ones. Take good care of yourself because you have much to live for and I know you want to continue to be there for Mr. Ziggy.

Hugs and good vibes on their way to both of you ❤️

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

mhf1986
Posts: 112
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Tue Feb 13, 2018 8:02 pm

Hi Mrs Z! Did you all go to the hospital today to get Mr Z checked out?

We went up for FOLOX+A, first treatment since Dec 26. Sort of glad to be back into the routine. New scheduling system causing problems for us (a 3 hour wait between Dr and infusion? no thanks) but perhaps they will get it worked out.

Robino, if all goes well we are headed to Fort Lauderdale in 10 days: please order some extra warm weather for us. The OX really makes DH cold.

Hugs to all,

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: descending 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: scan stable, CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: scan shows growth of liver tumors/lung nodes; 6.4 bilirubin too high for irinitican, started Vectibex

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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 Feb 13, 2018 8:20 pm

mhf1986 wrote:Hi Mrs Z! Did you all go to the hospital today to get Mr Z checked out?

We went up for FOLOX+A, first treatment since Dec 26. Sort of glad to be back into the routine. New scheduling system causing problems for us (a 3 hour wait between Dr and infusion? no thanks) but perhaps they will get it worked out.

Robino, if all goes well we are headed to Fort Lauderdale in 10 days: please order some extra warm weather for us. The OX really makes DH cold.

Hugs to all,

M


The weather will be grand!!!! Your husband is going to enjoy the warmth. :D

Fort Lauderdale is about 1 1/2 hour south of me. I think we are done with any of that chilly weather we experienced this winter. ;)
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 Feb 14, 2018 8:09 am

Hi all,
I don’t know what to say, but I know you’ve all been very supportive and kind to me and Mr Ziggy. I wish I had better news to report. Today Mr Ziggy is getting stents put in his ureters due to some kidney stones and disease blockage. Hopefully they can he’s still a bit weak. He has absolutely no pain at all thank God. Never has had pain, just weakness and nausea. The stents will hopefully help with that. No blockages in intestines, but inflammation where they reconnected his small and large colon. So eating is a problem, can’t put feeding tube in.

So the nurse at Sloan called me Monday. Nothing is stopping his particular disease and he can’t physically handle more treatment. Sloan and local hospital recommend hospice now. And recommending in patient at that. The nurse called again from Sloan (on speaker phone) and told both Mr Ziggy and I. As kind and compassionate as she was, shouldn’t the doctor have done that? I don’t know how I feel about that. Of course we are both sad, but I’m not surprised. I want to wish only the best for all of you! You are all great people and I hope and pray you all continue to do well and enjoy life! God bless
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: 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 » Wed Feb 14, 2018 8:45 am

Zig2017 wrote:Hi all,
I don’t know what to say, but I know you’ve all been very supportive and kind to me and Mr Ziggy. I wish I had better news to report. Today Mr Ziggy is getting stents put in his ureters due to some kidney stones and disease blockage. Hopefully they can he’s still a bit weak. He has absolutely no pain at all thank God. Never has had pain, just weakness and nausea. The stents will hopefully help with that. No blockages in intestines, but inflammation where they reconnected his small and large colon. So eating is a problem, can’t put feeding tube in.

So the nurse at Sloan called me Monday. Nothing is stopping his particular disease and he can’t physically handle more treatment. Sloan and local hospital recommend hospice now. And recommending in patient at that. The nurse called again from Sloan (on speaker phone) and told both Mr Ziggy and I. As kind and compassionate as she was, shouldn’t the doctor have done that? I don’t know how I feel about that. Of course we are both sad, but I’m not surprised. I want to wish only the best for all of you! You are all great people and I hope and pray you all continue to do well and enjoy life! God bless


Mrs. Ziggy

I am so saddened at your news. I truly hoped for a much better outcome. You have been (as had Mr. Ziggy) so brave and so supportive in fighting this damned disease. I am sincerely thankful he is in no pain.

My heart is breaking for you. Hugs and love from afar.
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

User avatar
Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: any peeps with BRAF mutation on here?

Postby Shana » Wed Feb 14, 2018 3:28 pm

Zig2017 wrote:Hi all,
I don’t know what to say, but I know you’ve all been very supportive and kind to me and Mr Ziggy. I wish I had better news to report. Today Mr Ziggy is getting stents put in his ureters due to some kidney stones and disease blockage. Hopefully they can he’s still a bit weak. He has absolutely no pain at all thank God. Never has had pain, just weakness and nausea. The stents will hopefully help with that. No blockages in intestines, but inflammation where they reconnected his small and large colon. So eating is a problem, can’t put feeding tube in.

So the nurse at Sloan called me Monday. Nothing is stopping his particular disease and he can’t physically handle more treatment. Sloan and local hospital recommend hospice now. And recommending in patient at that. The nurse called again from Sloan (on speaker phone) and told both Mr Ziggy and I. As kind and compassionate as she was, shouldn’t the doctor have done that? I don’t know how I feel about that. Of course we are both sad, but I’m not surprised. I want to wish only the best for all of you! You are all great people and I hope and pray you all continue to do well and enjoy life! God bless


Mrs. Ziggy,

I don't have the words to adequately express my sadness at your news. MSK is considered foremost in cancer care and it's mind boggling that your husband's cancer has been so aggressive.

Thank you for sharing your journey with us and I still hope that there is more time and treatment options out there. You are both so brave, I'm glad that he's not in physical pain, that is a blessing. Please let us know how you are doing, we are always here to lend an ear and support.

Many hugs from afar,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Feb 14, 2018 5:15 pm

Thank you Shanna and Robin. I appreciate it. Today was a little tough butt he’s doing ok. The hospice I called couldn’t have been more lovely. My friends dad had them and said they were wonderful. I feel he will be in good hands during the day. I love him and he told me he adored me today! That made my day! Also I actually enjoy taking care of him and being useful. And he isn’t keen on other people around him except nurses and doctors. They bring comfort too. God definitely calmed my heart today. Love you guys!
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 Feb 14, 2018 5:52 pm

MHF 3 hour wait between doc and treatment? Are you going in earlier? We would sometimes have labs at 7:30, then sometimes ekg or something and consult with doc then treatment. Those were usually long days. Even just labs and treatment took a few hours waiting around and such. Yeah it’s good being on a routine!
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: 112
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Wed Feb 14, 2018 7:41 pm

Mrs. Z, Sending you hugs and prayers. Am at a loss for words. Well, I will say do what feels right for you and for him, that's all that matters.

As far as scheduling goes, DH has blood work on Friday or Saturday, maybe Monday, at a local lab; results are ready either the day before treatment or the morning of. We usually leave the house at 6:30 to see the Dr at 8, followed by treatment at 9:15, done by 1:30. This new scheduling protocol only allows for a certain number of patients per nurse at a time which means fewer appointments. The Dr only allows treatment to be booked for the next time once DH has started the current day. By the time I got to the scheduler to get his March 6 treatment booked, the only slot available was 11:45. I don't know if it's staffing cuts or what. I talked to the scheduler again today and she kept saying it's the new computer program. I fussed at the head lady yesterday. But I also found out some Dr's allow for more future scheduling so that's what I've asked for. We'll see...

Please take care,
M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: descending 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: scan stable, CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: scan shows growth of liver tumors/lung nodes; 6.4 bilirubin too high for irinitican, started Vectibex

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Feb 15, 2018 8:35 am

MHF with everything you have going on I feel bad for you that there’s stress with scheduling. It’s required that he gets it at the day/time needed. I know we spoke to the RN assigned to Mr Ziggy and his doctor about scheduling later appointments in his case. I also got a little persistent when I got push back about rescheduling times but sometimes these guys feel poorly and the early hour rush is hard on them. Maybe try that route. It worked for us, don’t feel like a pest to them. It’s on them to get you in when needed and the times needed. Sending all my love to you today! 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

lkub
Posts: 18
Joined: Mon Mar 14, 2016 12:14 am

Re: any peeps with BRAF mutation on here?

Postby lkub » Sat Feb 17, 2018 12:44 am

Mrs. Ziggy - I just read this whole thread. My fear is that my husband is just a few months behind Mr. Ziggy. He just had the ureteral stents put in a week ago. He has small pleural effusion, and now bone mets. They had him start FOLFIRI+Avastin on Wednesday after FOLFIRI+Erbitux failed. He's in a lot of pain right now and also sleeps a lot. I've accepted the fact that I will lose him, but I'm so afraid of what lies between now and then. I don't want him to suffer for a long time. I want our children to remember their daddy strong and smiling. But like you said...no matter what, God is still good. I will be praying for you and Mr. Ziggy.
DH-stage 3b rectal signet ring cell dx 11/15 age 41
rad/xeloda 12/15-1/16
total colectomy&ileo(jpouch) 3/16
4/16 CEA 0.6
oxali&xeloda 3/16-8/16
clean CT 9/16 NED
10/16 reversal
4/17 CEA 1.4
10/17 CEA 44.4
10/17 CT mets to nodes peritoneum pelvis-stage 4
10/17 biopsy KRAS/BRAF/NRAS wild
11/17 port
11/17 FOLFIRI+Erbitux
1/18 Erb failed CT mets spine/pelvis
2/18 stent ureteral obst
2/18 FOLFIRI+Avastin
3/18 small bowel obstr
3/18 CEA 114
4/18 FOLFOX+Vectibix FAILED
5/18 ascites
Lynch neg

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Feb 17, 2018 8:12 am

Dear one,
I can’t imagine what you’re going through right now. I know it is so hard thinking about losing a life partner, and it must be even harder with children. My heart hurts for you but there is still hope and time if they are treating him. Your hubby sounds like a very strong man. The treatments aren’t easy I know. Please try to surround yourself with supportive family and friends and I hope you have someone close to share things on a spiritual level. Whether that be minister, rabbi, etc. I also think speaking openly and honestly with hubby as he goes through treatment is vital. Most of all love on him a lot. I wrote a long post here yesterday on the status of my husband’s journey, but it apparently didn’t post. My sincere love and prayers go out to you, and I’m hoping your family is trying to keep things as normal a routine as possible for the kids. I also learned if someone wants to help with kids, house, groceries and whatever, let them. They sincerely want to express love and want to help. All my 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

mhf1986
Posts: 112
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Sat Feb 17, 2018 9:07 am

Mrs. Zig, my deepest condolences to you. Prayers, thoughts, hugs, more prayers too.

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: descending 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: scan stable, CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: scan shows growth of liver tumors/lung nodes; 6.4 bilirubin too high for irinitican, started Vectibex

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 » Sat Feb 17, 2018 9:20 am

Mrs. Ziggy,

Your husband passing has hit me harder than any of the others for some reason. That was so fast! My heart hurts for you. I can't seem to stop crying.

May you be blessed with the knowledge that he deeply loves you.

Oh GOD I hate this disease.

All my love to 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
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 17, 2018 10:03 am

Thank you sweetheart. I know he’s in a better place and waited to get home to his wife and kitty. It was a privilege taking care of him as he deserved love and care at his end of life. He deserved only the best. Today the sun is shining and even though it is chaotic right now, these are earthly things and will get sorted out. Main thing is we are here and will carry on each day. God has been so good through all of this and every time something happened, someone came along side of me to help. And believe me I’m completely alone in unchartered waters. But I have a good captain! I’m grateful for the years I knew and loved my husband but I know it was time for him to go. He could have suffered pain and a long illness time, he did not. Never had pain at all. Just nausea and that was controlled. I’ve grown to love you Robin and all and will continue to come on here because I care about ups and downs and successes! Live every moment and go do everything you enjoy doing, now. That’s what I tell people regardless of health status. 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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