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by CM35
Sat Mar 05, 2016 5:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda question
Replies: 15
Views: 3739

Re: Keytruda question

I was on keytruda back in September. If it were me, I would take the dose being provided by the manufacturer. In the meantime, could your onc continue working with your insurance to try getting it approved for off-label use? Then perhaps dosing would be more under the prescription of your doctor. My...
by CM35
Thu Feb 11, 2016 3:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LAR or Not
Replies: 36
Views: 4683

Re: LAR or Not

I know this is a very difficult decison, and definitely personal. No one person can tell you what to do...however, I have had TWO LAR procedures done, both open, during major metastectomy operations. It is definitely major surgery, but I will say absolutely doable! My first LAR was in conjunction wi...
by CM35
Sat Jan 02, 2016 9:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: peritoneal activity
Replies: 8
Views: 2804

Re: peritoneal activity

I have ongoing peri mets. I have had them removed via surgery, I have also had them surgically removed in conjunction with HIPEC. HIPEC is the gold standard for treating peri mets, and can be curative for some. It didn't work for me, however we are currently managing my disease with a combination of...
by CM35
Thu Dec 17, 2015 1:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New met in 3 weeks???
Replies: 7
Views: 1685

Re: New met in 3 weeks???

Happened to me this past summer. Liver was clear in July, 4 weeks later I had a liver met - 1.6 cm. I ended up having RFA, seemed to take care of it. Started chemo 10 days after the procedure.
by CM35
Thu Nov 26, 2015 12:14 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Percutaneous Liver RFA
Replies: 2
Views: 840

Re: Percutaneous Liver RFA

I had a percutaneous RFA on a small liver met. I have also had HIPEC. NO COMPARISON! Lol! My procedure took about 3 hours, and was done under general anesthesia. I woke up sore where the probe was inserted, which was between my ribs, in the middle of my right side. The kind nurse in recovery gave me...
by CM35
Sun Oct 11, 2015 10:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: dental work while on avastin
Replies: 4
Views: 1953

Re: dental work while on avastin

I had a cleaning and a few fillings done while on Avastin. I had to have labs the morning of to make sure my counts were OK - ANCs and platelets. I have a few teeth that need some more extensive work (either crowns or implants), but I am not putting that kind of money into this stage IV mouth! My de...
by CM35
Sun Oct 11, 2015 9:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: If you've had peri mets -- did you have any symptoms?
Replies: 19
Views: 3946

Re: If you've had peri mets -- did you have any symptoms?

I've had/have peri mets. No symptoms whatsoever. Mine have always been in my pelvis. Ranging in size from sub-cm nodules to a 9 cm ovarian met. Never had any pain or any other issues. Most have been picked up on ct, except those that were involved with adhesions, and they were very small. My CEA is ...
by CM35
Tue Sep 29, 2015 12:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When to tell children your dying?
Replies: 25
Views: 10324

Re: When to tell children your dying?

This is directed at Julie's question of how does one define "imminence" as it pertains to death... I guess in my case, we are leaving it as 'we will know its time, when we are there.' I would hope, at the least, I would have months to live when get there, but I suppose that's a chance we a...
by CM35
Sat Sep 26, 2015 10:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When to tell children your dying?
Replies: 25
Views: 10324

Re: When to tell children your dying?

This is a question I ponder often. I don't think there is a right answer. My daughters are 4 and my oldest will be 6 in two months. They were 1 and 3 when I was diagnosed, so they have no recollection of having a mother without cancer. We have always chosen to be honest with our children, but only g...
by CM35
Fri Sep 25, 2015 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My lastest
Replies: 38
Views: 5592

Re: My lastest

I am so sorry to read this, Richard. Your grace in the face of this situation is admirable and remarkable. I am wishing you pain-free days. Your family is in my prayers.
by CM35
Fri Sep 25, 2015 9:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HIPEC Surgery - Best Surgeons. MSKCC? or ?
Replies: 9
Views: 1503

Re: HIPEC Surgery - Best Surgeons. MSKCC? or ?

I can't help with the question of who or where is the best as far as HIPEC centers or surgeons for pseudomyxoma peritoniei, unfortunately. I had HIPEC in May; during my initial consult, I remember my surgeon saying that appendiceal cancer and pseudomyxoma peritonei had the best response to HIPEC. Th...
by CM35
Thu Sep 17, 2015 8:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I'm gonna need folfiri and a pet scan. info please?
Replies: 12
Views: 1820

Re: I'm gonna need folfiri and a pet scan. info please?

Lara, I have had at least half a dozen PET scans, the last just 3 weeks ago. PETs are easy, it has the big "donut hole" like the CT, but your body inches through it over about 25 minutes. I have never had to do the "breathe in hold your breath" instructions with a PET, so my expe...
by CM35
Fri Sep 11, 2015 10:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: UPDATE advice needed - I'm in the hospital with ovarian cyst
Replies: 42
Views: 5374

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Lara,
I am so sorry you are going through this...just plain sucks. :( I will PM you tomorrow about my HIPEC experience... I am thinking about you... As for NED, based on the fact your surgeon removed everything visible, my guess would be yes... Hang in there!

Colleen
by CM35
Thu Sep 10, 2015 8:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: UPDATE advice needed - I'm in the hospital with ovarian cyst
Replies: 42
Views: 5374

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Lara, I just want to say I think you are doing everything right! Good luck tomorrow, I'm thinking of you...

Colleen :)
by CM35
Wed Sep 09, 2015 11:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Peritoneal Carcinomatosis
Replies: 4
Views: 1549

Re: Peritoneal Carcinomatosis

Have you looked into HIPEC? As far as aggressive treatment of peri mets, HIPEC is probably at the top of the list. I have no personal experience with MDA, but from what I understand, they have very limited circumstances in which they recommend HIPEC. It sounds like your husband has extensive disease...

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