Lainy, I fell like you are everyone's mom on this board!! We appreciate you so much!
Hugs,
Susie
2 Yesterday 23:43:19
Re: Clear scan (8 replies, posted in Good News / What's Working)
Great Randi!!! Can I ask when your next scan will be?
Take care!
Susie
3 Yesterday 23:41:06
Re: Lauren Doing a Tad Better (11 replies, posted in General Discussion)
Thanks Lainy!
4 Yesterday 17:03:22
Re: Lauren's 2nd Surgery News (38 replies, posted in General Discussion)
Lots of prayers, Pam.
5 Thu, 16 May 2013 12:40:30
Re: Lauren's 2nd Surgery News (38 replies, posted in General Discussion)
Great news Pam!!
Keep us posted on her recovery!
Take care!
Susie
6 Wed, 15 May 2013 17:26:07
Re: Primary Biliary Cirrhosis (4 replies, posted in General Discussion)
Lainy,
I am pretty familiar with PBC, used to see some patients who got transplanted for it.
I had my hepatologist test me for PBC, blood work for AMA, it came back negative. The reason I thought i may have it is because I also have high cholesterol.
My hepatologist told me PBC is not usually associated with CC but PSC is. I know lots of our member's have PSC (primary sclerosing cholangitis) and that is a well known risk factor for CC.
take care,
susie
7 Tue, 14 May 2013 22:44:31
Re: MRI abdomen/CT chest scheduled for tomorrow (13 replies, posted in General Discussion)
Randi, lots of prayers for good results!
Susie
8 Fri, 10 May 2013 12:26:55
Re: Blood Pressure (11 replies, posted in General Discussion)
My BP has been low since my resection. Not sure why, but I am routinely in the 90's systolic.
Take care,
Susie
9 Fri, 10 May 2013 12:25:08
Re: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
Great news! Keep us posted and lots of prayers for you and your family!
Susie
10 Thu, 02 May 2013 15:21:20
Re: Announcement: I will be gone May 22 - June 6th (22 replies, posted in Members' Cafe)
Have a great time!!!
Take care,
Susie
11 Tue, 30 Apr 2013 21:59:23
Re: Lauren's Surgery (122 replies, posted in General Discussion)
Wow, May 15th is going to be a BIG day around here!
Lots of prayers for you both.
Pam, FYI, I have a picture of my tumor. It's a picture of the 40% of my liver removed with the tumor in it. It is quite neat.
Take care,
Susie
12 Tue, 30 Apr 2013 21:54:06
Re: Another PET down (9 replies, posted in Good News / What's Working)
Great news!! Thanks for sharing!
Susie
13 Mon, 29 Apr 2013 15:23:31
Re: Sweats, Fainting, and Blurry Vision--Oh My (10 replies, posted in General Discussion)
does he have blood sugar issues?
14 Fri, 26 Apr 2013 22:20:45
Re: Lauren's Surgery (122 replies, posted in General Discussion)
I just read your latest blog entry. I love all the dog pictures! They are cuties.
Glad to hear Lauren is improving and look forward to hearing her surgery is set.
So glad to hear she lost so much weight.
Take care,
Susie
15 Fri, 26 Apr 2013 21:54:13
Re: Lauren's Surgery (122 replies, posted in General Discussion)
Great Pam!
16 Fri, 26 Apr 2013 21:51:24
Re: Ca19-9 steadily rising (10 replies, posted in General Discussion)
What does his scan show? My Ca 19-9 went higher after I started on chemo and even worse during radiation.
17 Thu, 25 Apr 2013 11:49:14
Re: Clean scan (18 replies, posted in Good News / What's Working)
Eli,
That's exactly the news I was hoping for! So glad to hear she is doing well.
Take care,
Susie
18 Tue, 23 Apr 2013 20:01:31
Re: Gemzar/Xeloda (17 replies, posted in Chemotherapy)
Suzy,
I was on Gem/Cis and handled it pretty well other than it destroyed my blood counts. I only had 6 cycles, so I'm sure the effect is cumulative. I had radiation with Xeloda and had terrible acid reflux/vomiting, but I think it was from the radiation. I've never been on Gemzar combined with Xeloda, but from what I understand those are both milder than Cisplatin. But everyone is different. I know hand/foot syndrome can be common with Xeloda, especially the higher doses.
I'm glad to hear you've done so well on chemo.
Take care and keep us posted!
Susie
19 Mon, 22 Apr 2013 21:28:35
Re: Clean scan (18 replies, posted in Good News / What's Working)
Eli, how does your wife feel? What's day to day life like for her? I remember our treatment was pretty similar.
I feel pretty good. I am up to 125lbs! I was 118 before I get sick and went down to 104lbs at my worst during radiation.
I take omeprazole for acid reflux. I was off it for a while, but seemed to need to clear my throat frequently, so I went back on it. I take Creon with meals. Not sure if it helps or not, but it doesn't bother me, so I stay on it. The reason I started it was for floating stools. but no other symptoms.
I work from home full time. I am pretty active again. I run frequently, just around 3 miles, but I'm thankful to be able to do that.
Overall, I'm very pleased with my post treatment life. You would think it would be much worse considering everything my body has been through.
I hope your wife is feeling good! I think of you both often.
Take care,
Susie
20 Mon, 22 Apr 2013 19:20:47
Topic: clean scan (11 replies, posted in Good News / What's Working)
So, that was the quickest I ever got a test result back!
I am happy to report my ct scan showed no evidence of disease!
I am so thankful and grateful! God is good! And I must say my oncologist is pretty awesome for releasing my results so quickly.
I will sleep good tonight.
Thanks for listening!
Susie
21 Mon, 22 Apr 2013 13:33:42
Topic: going for my ct scan (7 replies, posted in General Discussion)
I get my 2 yr post resection ct scan and blood work today. Prayers are appreciated!
I had a lovely weekend at the coast. My husband and I went there to get our mind off of the scan but as we were driving home I could feel the tension starting. I didn't sleep well last night and will be fortunate to sleep at all tonight. You know how it goes.
I should get the results by Wednesday.
Take care everyone,
Susie
22 Wed, 17 Apr 2013 22:27:04
Re: Biopsy in morning (19 replies, posted in General Discussion)
Glad it went well, Kris!
23 Wed, 17 Apr 2013 15:40:22
Re: How to Die in Oregon (death with dignity) (12 replies, posted in General Discussion)
No, it's not on you tube. Per the movies website here are the options:
See the film:
Watch on HBO
Buy the DVD
Rent or buy on iTunes
Rent on Netflix
24 Wed, 17 Apr 2013 15:03:21
Re: How to Die in Oregon (death with dignity) (12 replies, posted in General Discussion)
Thanks for responding. It is an interesting topic and a topic I wish I didn't have to think about at 33, that's for sure!
Has anyone seen the documentary? I'm thinking of watching it since it involves a CC patient, but I know it will be terribly sad and difficult.
Take care,
Susie
25 Wed, 17 Apr 2013 11:07:05
Topic: How to Die in Oregon (death with dignity) (12 replies, posted in General Discussion)
I was wondering if anyone as ever seen this documentary? It features a patient with cholangiocarcinoma who chooses Death with Dignity, which is legal in Oregon. For those of you who may not of heard of it, here is the definition: Death with Dignity Act which allows terminally-ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose
What are everyone's thoughts on the subject? I know it is controversial and highly debated but I would still like to hear people's opinions.
Take care,
Susie
