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by Brearmstrong
Thu Sep 13, 2018 9:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DH had surgery consult yesterday for para aortic nodes
Replies: 10
Views: 820

Re: DH had surgery consult yesterday for para aortic nodes

I had para-aortic nodes at diagnosis and as of my last PET scan in April they are no longer showing up (I'm overdue for a scan now). 5Fu infusions are starting to wear me down so I'm thinking of switching to Xeloda as I want to keep this going as long as possible. If they come back and it is in a l...
by Brearmstrong
Tue Sep 04, 2018 11:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DH had surgery consult yesterday for para aortic nodes
Replies: 10
Views: 820

Re: DH had surgery consult yesterday for para aortic nodes

Brearmstrong, Dr. Bartlett did not use the word cure, but he said with surgery, " it could go away and never come back or it could come back again." So I guess that's the best we could hope for anyhow. My husband's oncologist said if his scans are clean after he completes chemo he would b...
by Brearmstrong
Sun Sep 02, 2018 7:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DH had surgery consult yesterday for para aortic nodes
Replies: 10
Views: 820

Re: DH had surgery consult yesterday for para aortic nodes

cLD Sounds like a good plan is in place. My journey is similar and I was fortunate to find a surgeon who would remove the nodes. So far so good as it’s been 3 1/2 months and I am currently on xeloda pills for maintenance. The surgery can be tricky given the location so I am happy that they will go a...
by Brearmstrong
Wed Aug 22, 2018 12:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Kras G12V or G12D, NIH trial needs you
Replies: 19
Views: 1019

Re: Anyone with Kras G12V or G12D, NIH trial needs you

This sounds wonderful. I'm currently stage IV NED (well just had a CT scan this morning so we shall see) and I'm G12D. I will give them a call. Thank you for letting us know!
by Brearmstrong
Sun Jul 08, 2018 5:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CT scan report and PARA-AORTIC Lymph Nodes!
Replies: 7
Views: 549

Re: CT scan report and PARA-AORTIC Lymph Nodes!

Hi, try not to panic. I was stage 3C but had a quick recurrence after 12 rounds of folfox. My tumor was on the right side so when it came back to the para aortic lymph nodes I was then stage IV. It does mean that it is now through out his blood stream but don’t give up hope that it can be treated! I...
by Brearmstrong
Mon Jun 25, 2018 6:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CBD OIL
Replies: 9
Views: 834

Re: CBD OIL

I have been using it since a few months after my diagnosis so about a year and a half. I make up my own capsules with high grade CBD oil and then THC oil that I get from my medical dispensary. I don't think it's done anything for my cancer (it came back stage IV three weeks after finishing 12 rounds...
by Brearmstrong
Mon Apr 30, 2018 6:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS and BRAF MUTATIONS
Replies: 14
Views: 1949

Re: KRAS and BRAF MUTATIONS

Thanks all! JP18, your mom is similar to me. I am having (hopefully) surgery to remove my metastic spread to para aortic nodes in two weeks. How did you mom make out with that surgery? I'm also MSS and Kras 12D. Wondering what her drs are saying about long term prognosis? Is she on maintenance chemo...
by Brearmstrong
Fri Apr 27, 2018 1:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS and BRAF MUTATIONS
Replies: 14
Views: 1949

Re: KRAS and BRAF MUTATIONS

These are great articles, thanks for sharing. Wondering if anyone is doing IV vit C currently and if so, did they have to find a facility that will administer and do you have to pay out of pocket? My oncology center doesn't offer this but I'm willing to do on my own. Any estimates on how much it cos...
by Brearmstrong
Tue Apr 17, 2018 12:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Marijuana is helping with my bathroom trips
Replies: 7
Views: 1359

Re: Marijuana is helping with my bathroom trips

I use medical marijuana with high levels of THC and CBD and can honestly say that there is no way I could be getting through chemo without it. Thanks for sharing that tip! Glad you are cured and well!

Brenda
by Brearmstrong
Tue Mar 27, 2018 1:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My wife - Stage IV survivor, 9 years NED.
Replies: 12
Views: 2283

Re: My wife - Stage IV survivor, 9 years NED.

My gosh she was so young. I can't imagine how scary that must have been for both of you. Thank you so so much for coming back on the forum to provide the hope we are all seeking. I'm happy to hear she's been NED for 9 years!!!!
by Brearmstrong
Fri Mar 23, 2018 6:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 21
Views: 3291

Re: KRAS Mutation- any one long term NED?

Thanks again to all that post here. So my oncologist agreed with me to do the surgery after my 8th round which was scheduled for this past Wednesday. That was all great until the bloodwork came back and my white blood cells tanked again even with Nuelasta shots after each disconnect from the pump. T...
by Brearmstrong
Mon Mar 19, 2018 6:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 21
Views: 3291

Re: KRAS Mutation- any one long term NED?

Thank you everyone. Mike, your post gave me hope and that's all most of us are looking for! I appreciate you sending me the trial information. I meet with my oncologist this Wednesday and my plan is to ask if we can do the surgery now rather than after 12 round of folfori w/ avastin. I think 8 is mo...
by Brearmstrong
Thu Mar 15, 2018 6:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 21
Views: 3291

Re: KRAS Mutation- any one long term NED?

Larry, we seem to have similar signatures. You can get to NED! I just know it. I just had my 7th round of folfori and avastin. After three rounds, I had a CT scan and showed no shrinkage of my enlarged lymph nodes but didn't show growth either. We can get through this, I'm just very nervous that if ...
by Brearmstrong
Wed Mar 14, 2018 12:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 21
Views: 3291

Re: KRAS Mutation- any one long term NED?

Thank you Betsy, exactly what I needed to hear today. Thank you so much for posting and I wish you forever NED!!!

-Brenda
by Brearmstrong
Wed Mar 14, 2018 8:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 21
Views: 3291

KRAS Mutation- any one long term NED?

I have been searching the archives for talk about KRAS mutations. I'm feeling a little hopeless that I'm doomed because of no immunotheraphy options. If folfori fails then I'm out of options except clinical trials. Has anyone here achieved long term NED with a KRAS mutation? Thanks in advance! -Brenda

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