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by crazylife
Mon May 07, 2018 1:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Path report - kras and tp53
Replies: 4
Views: 974

Path report - kras and tp53

Can someone help me decode this thing. Any insight would be appreciated. Positive for the following somatic alternations in rather clinically validated panel: 1.kras exon 3 p.q61r 2.tp53 exon 5 p.q167 Positive for the following somatic alternations in the investigational panel: 3. Amer1 4. Apc 5. Ap...
by crazylife
Thu May 03, 2018 4:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mystery Sepsis?
Replies: 5
Views: 1404

Re: Mystery Sepsis?

Crazy! Glad he is on the mend.
by crazylife
Mon Apr 30, 2018 4:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV - Off chemo two years
Replies: 4
Views: 2025

Stage IV - Off chemo two years

Wanted to share that DH is approaching two years off chemo as a stage IV patient. He did the initial 6 months of folfox as mop-up to his liver and colon resection. He then had 5 spots pop up in his lungs which were removed in November and January of this year. Anyone else have similar experiences wi...
by crazylife
Thu Feb 22, 2018 10:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Stage IV currently in NEDville? Please share any advice or tips? P
Replies: 72
Views: 22556

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

My husband is stage IV and has been off chemo since June 2016. He had nodes pop up in both lungs and after close to a year of stability those nodes were removed. Right lung surgery in November and the left in January.

We are now hoping it stays away for a bit as he is NED.
by crazylife
Sun Jan 14, 2018 1:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beansmama is gone.
Replies: 38
Views: 12029

Re: Beansmama is gone.

I thought she had this beast beat! Ugh. Prayers to her family.
by crazylife
Tue Jan 09, 2018 10:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mother stage IV, terrified
Replies: 25
Views: 10013

Re: Mother stage IV, terrified

Can you get her to see Dr. Kemeny in NYC at Memorial Sloan Kettering? She specializes in patients with liver only disease and may be able to help your mom. She has helped many people on this board live for many years and even be NED. I believe mariane (member on the board) had over 10 lesions and ha...
by crazylife
Sat Dec 30, 2017 3:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung surgery advice
Replies: 15
Views: 3450

Re: Lung surgery advice

Hi all! DH is 5 weeks post-op and still having lots of nerve pain and general tiredness. He is going for pre-testing for the second surgery in two weeks. Is pain at this stage normal and expected and ok for second surgery? Would love to hear your experiences with recovery. He's also lost ten pounds ...
by crazylife
Thu Dec 14, 2017 5:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why would my Oncologist say Surgery is no longer an option
Replies: 11
Views: 2931

Re: Why would my Oncologist say Surgery is no longer an option

Agreed. Medical oncologist said no to surgery and surgical oncologist fought for it. Contact them yourself if needed. We did.
by crazylife
Tue Dec 05, 2017 7:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung surgery advice
Replies: 15
Views: 3450

Re: Lung surgery advice

Thanks sophy and Stevieb!

DH is recovering from right lung surgery. 3 mets found and nothing else after a thorough check. Left lung surgery in 6 weeks.

I want to look into adapt. Who did you guys contact?
by crazylife
Wed Nov 29, 2017 8:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Still NED three years after lung mets surgery
Replies: 12
Views: 2458

Re: Still NED three years after lung mets surgery

That's so great! DH is recovering from surgery on his right lung and going for the left one in about 8 weeks. He's in a lot of pain, so I will show him this for encouragement. Did they tell you the likelihood of cure was very very small? They've told us this but we went for it anyway also, what is A...
by crazylife
Mon Nov 13, 2017 3:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Results of PET scan and questions about the liver!
Replies: 18
Views: 3579

Re: Results of PET scan and questions about the liver!

DH PET scan showed 3 lung lesions with high SUV uptake. But the CT shows 6 spots. I just don't get it. Which test is the most reliable?
by crazylife
Tue Oct 31, 2017 12:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung surgery advice
Replies: 15
Views: 3450

Re: Lung surgery advice

I had to go to London (Dr. Ladas) because no doctor in the US would do surgery, had too many nodules. Dr. Ladas removed 12 bilateral lung nodules during my two surgeries with him. Gotcha. Doctor mentioned my husband is pushing the limit with 5 nodules, so makes sense. Do you know if having surgery ...
by crazylife
Tue Oct 31, 2017 7:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung surgery advice
Replies: 15
Views: 3450

Re: Lung surgery advice

Stevieb

Wondering why you opted for laser surgery instead of surgery in US. Trying to be thankful the surgeon is willing to do it but he gave us the whole "this only buys some time" speech. I hate these doctors sometimes. We get it, why remind us all the time. Ugh.
by crazylife
Mon Oct 30, 2017 10:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung surgery advice
Replies: 15
Views: 3450

Re: Lung surgery advice

No, that's sort of what I am wondering. Are these a better option than surgery? No idea if we should jump into surgery or look into other options.
by crazylife
Mon Oct 30, 2017 9:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung surgery advice
Replies: 15
Views: 3450

Lung surgery advice

DH has about 5 nodules. Surgeon has agreed to go in and remove them and DH will lose about 25 percent lung capacity. DH has been off chemo since June 2016 and this is all that has popped up. What are thoughts on this? I am a nervous wreck as to whether or not this is a good decision. They can't abla...

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