Part 2: Clean so far (sort of …)
- This topic has 49 replies, 17 voices, and was last updated 12 years, 7 months ago by
.
-
Posts
-
Hi,Jim,
Can you quote the”impression statement” from the two PET/CT scans that you said are cleans.You can email me thru this web site if you want to to protect your privacy if you want.
The CA19-9 values cannot be compared between different hospital or labs due to different methods or machines used. At the most you can compare ca19-9 from AGH or CPMC in itself only.
Ca19-9 above 129 is of concern especially if is intrahepatic CCA.unless you were very stressful during those tested dates(eg. Infection,or fever or emotional related stress.)
I will try to get the PET/CT IN 2 or 3 month instead of four.
Low dose of Xeloda by mouth and do nothing but scan every three month was suggested to me after 14 month gemzae but I opted for nothing instead to see how my liver response,six month later my CCA recur with 2.1x2cm tumor and had a second resection later. So if you want preventive chemo,Xeloda may be your question to the oncologist next time.
As patients of CCA;The odds are high for recurrence (>65%); so be always prepare for options even you are feeling good now and I think when we think we feel health enough,this is the time that we will have enough energy to help ourself to do research or go for second opinions. This is my current approach for handling my CCA because I think even I will do all my best, the hope of finding a good quality of life with current available treatment is no picnic.
Other people may think differently and for that I think they are not wrong either.
God bless.Hi Jim,
Lauren’s CA-19-9 went up every month. Now it is going down. I was quite concerned because people on this site seem to freak out about them so much. I asked the PA that works with Lauren’s oncologist about this and she said it is just one of the tools they use along with scans and other tests. It causes them to be aware but really as long as scans are looking good and the patient is feeling well they don’t worry. So I am not going to anymore either!!
Take care.-Pam
Lainy, I don’t like doing nothing, when something is clearly going on. I think my visit with the onc next month will include a question about the wisdom of doing chemo again.
Jim, your doctors are doing exactly what Teddy’s did for him. He also had CA19 increasing but everything else was normal. More scrutiny is all they can do if nothing else is showing up. I know its more anxiety but you are in great hands and I hate to see you spend the energy worrying when they see nothing to worry about, yet. I am sure you are going to make your milestone of 3 years and please try taking it day by day, I know, I know, easier said than done. I will keep sending good vibes and wishes your way!
I’m going to continue being an optimist and post here. Quick recap:
1) Had a successful resection 4/2009
2) Clean scans and blood results until August 2011
3) I’ve had two PET/CT scans, one mid August and one mid October 2011, both clean (both were head through mid thigh).
4) Blood work through August were perfectly normal until 8/1.This is a summary of blood results through a few days ago:
Date CA 19-9 Value Hospital Lab
6/11/09 17 AGH
7/1/2009 13 AGH
7/9/2009 10 AGH
7/23/2009 7 AGH
7/30/2009 12 AGH
8/6/2009 29 AGH
8/14/2009 24 AGH
8/27/2009 16 AGH
9/3/2009 13 AGH
9/17/2009 82 AGH
9/23/2009 28 CPMC
10/29/2009 24 AGH
12/3/2009 13 AGH
3/13/2010 13 CPMC
2/11/2011 19 CPMC
8/1/2011 88 AGH
8/5/2011 133 AGH
8/17/2011 73 CPMC
9/22/2011 102 AGH
10/12/2011 59 CPMC
11/11/2011 102 AGH
12/9/2011 86 AGH
1/9/2012 156 AGHDate Bili Direct Bili Total Hospital Lab
3/18/2011 0.29 1.00
8/1/2011 0.31 1.40 AGH
9/22/2011 0.41 1.60 AGH
10/12/2011 0.20 1.60 CPMC
11/11/2011 – 1.50 AGH
12/9/2011 0.42 1.40 AGH
1/9/2012 – 1.40 AGHAGH=Atlantic General Hospital, Berlin, MD
CPMC=NY Presbyterian Hospital, NY, NYAll bili numbers prior to 3/2011 were normal and there have been no notable symptoms evidenced. I feel well and everyone says I look great, but I’m concerned about the CA 19-9 results and wondering if anyone else in the cc community has seen this. My doctors at NY Presbyterian are at a loss to explain the cause, and short term have opted for increased scrutiny (monthly blood tests and PET/CT scans every four months).
After two years of normal, normal and normal, this is worrisome at best! I was hoping (and still am) to celebrate three years clean in just a few short months.
- The forum ‘Good News / What’s Working’ is closed to new topics and replies.