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by Ashlee H.
Fri May 09, 2014 8:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ashlee off to a mini stay at the hospital
Replies: 57
Views: 4940

Ashlee off to a mini stay at the hospital

Well, Stivarga has failed me. It was doing ok on the cancer markers....but it has caused liver damage. I'm off to the hospital tonight for what ONC feels will be just a few days. He says the numbers haven't peaked yet, so he wants me in the hospital for observation. Thank goodness I always have my h...
by Ashlee H.
Fri May 09, 2014 8:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Bilirubin was normal 3 days ago when other liver enzymes were up...it went from .8 to 5. Being admitted to the hospital tonight. ONC said I haven't peaked yet, so it is basically for observation. I'm off Stivarga.
by Ashlee H.
Tue May 06, 2014 6:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Well, I told you all I'd keep you posted - so here is the update. Saw my ONC today. I'm feeling pretty good and he said to have a scan in 4 weeks and he'd see me in 5 weeks. I wasn't crazy about not having labs for 5 weeks, but welcomed the break. A few hours later he called me and said my CEA had o...
by Ashlee H.
Mon May 05, 2014 10:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

If you go to the Stivarga website, they have a "Reach" program that helps with co-payments. I'm very lucky to have a low co-pay so I haven't checked into the program.
by Ashlee H.
Mon May 05, 2014 1:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

The first five days I had a hoarse voice, body aches, and a bad headache. At that point my ONC took me off it for 5 days and then started up again. He told me he has found if side effects come up too rapidly that is when things seem to go bad quickly. When the drug was reintroduced, I still had the ...
by Ashlee H.
Mon May 05, 2014 12:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

I'm day 5 days into my 2nd cycle. Still better than all the other chemos. I'll get labs this week to see if anything has changed. My ONC really says it takes 3 months before we will know. I'm still only on 3 pills a day, but I think after I see my ONC this week, I'll be alternating one day 3 pills, ...
by Ashlee H.
Mon May 05, 2014 11:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How do we die?
Replies: 39
Views: 8128

Re: How do we die?

There is no easy answer this. As we all react differently to chemo, we will have a wide range on how we die. From what I've seen personally, and what I've learned from this site over the years, it seems impending death is pretty obvious about 2 months before dying. The last two weeks especially are ...
by Ashlee H.
Thu May 01, 2014 10:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Probably stopping current chemo
Replies: 5
Views: 1280

Re: Probably stopping current chemo

I was in your place in February. I was just done. Chemo made me feel dead and was only working on 80% or so of my cancer. I know you and your ONC aren't crazy about Stivarga but it seems we are finally getting some positive stories about it. As long as they don't start you at the max (4 pills) and t...
by Ashlee H.
Thu May 01, 2014 10:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: husband doesnt want to do chemo for rest of his life
Replies: 8
Views: 1867

Re: husband doesnt want to do chemo for rest of his life

Chemo for life is a tough decision. For me, when my quality of life is poor and there is no joy in my life, then I don't want to have chemo in my veins. Standard chemo was killing me faster than the chemo. I'm now on Stivarga and am working 40 hours a week. It's been a fairly easy chemo - no infusio...
by Ashlee H.
Thu May 01, 2014 10:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HIPEC as early as next week?? Whaat!!! :)
Replies: 49
Views: 5834

Re: HIPEC as early as next week?? Whaat!!! :)

Happy Dance Time for sure! Great news!
by Ashlee H.
Thu May 01, 2014 10:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Today I just started my second cycle of Stivarga. My doctor told me Stivarga will not get rid of the tumors, but may keep me stable. The drug is even surprising him. Seems it takes about 3 months to see any improvement, if there is going to be improvement. I hear many people give up after two months...
by Ashlee H.
Mon Apr 28, 2014 8:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ok, really freaking out now....
Replies: 6
Views: 1467

Re: Ok, really freaking out now....

Amy - it would help us if you put information in a signature (go to "User Control Panel). When were you last tested? When were you DX? What kind of treatment have you had? Has the CEA been a good marker for you? It has for me, so I do know when it is up FOR ME, the cancer is active again. We ju...
by Ashlee H.
Mon Apr 28, 2014 2:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 64813

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Sharon - From what I'm hearing, the biggest thing I think the ONCs have learned is not to start patients on the full dose - 4 pills. Ease into it with 2 or 3 pills. For the first cycle, I saw my ONC every week for labs. I'm on my week off of Stivarga. I tire easily and my face has gotten really dry,...
by Ashlee H.
Mon Apr 28, 2014 10:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pros and cons of Pain Catheter
Replies: 9
Views: 1264

Re: Pros and cons of Pain Catheter

I think you are talking about an Epidural. I've have procedures with and without it. Most people love them. If they work right, you end up taking less pain meds. If you are on blood thinners, they don't like to do them because there is a risk of complications. My first epidural, only 1/2 of me was n...
by Ashlee H.
Sun Apr 27, 2014 8:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newbie, boyfriend stage IV colon w lynch syndrome
Replies: 3
Views: 983

Re: Newbie, boyfriend stage IV colon w lynch syndrome

You indicate you live in San Diego, so Moore's Cancer Center in La Jolla would probably be the place to go if he moves down to San Diego. Moving up the coast, there is UC Irvine, USC, and UCLA. All have trial studies. Dr. Lenz is at USC and is the "go to guy" for Colon Cancer and always ha...

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