• From: California
  • Registered: Thu, 26 Jul 2012
  • Posts: 36

Topic: CA19

I have a question I didnt think I was going to ask but find myself thinking of nothing else.  The cesplatin has caused permanent ringing in my sons ears so the Onc changed his regimen to carboplatin and of course the gemzar.  He has only had two infusions of the new duo and it is much more gentle to his system. 
When he was initially diagnosed his CA19 was 110,000.  No typo there.  It has plummeted since the June 13th labs and in October had reached a low of 1040.  Well his Nov. results are back up at 1560.  I have read on this forum not to focus on the CA19 but I also have not seen anyone with the high numbers my son has had.  He is doing really great.  His last scans in early October showed "moderate" shrinkage.  If you saw him you wouldn't know he was ill.  His has controlled his nausea with medical marijuana ( legal here in CA, and a god send) and been able to maintain and even gain weight.  He is completely engaged in his life!  I cannot believe he is as ill as the scans show.  And three experienced surgeons have said No Surgery.  I'm waiting for a response from Dr. Kato.  Fingers crossed!!!  I guess my question is does the CA19 mean he is regressing?  Why are his counts so crazy high compared to others on this site?  As always my heart goes out to each and every one here!  Keep up the hope and the fight!!

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,239

Re: CA19

Dear notdoneyet, not sure but I think they take more in to account than the CA when assessing. My goodness that was some kind of drop in a short time! I am so glad to hear he is doing so well and living his life to the fullest. Ah, the ringing in the ears. I have had it for 3 years now, not from chemo, and eventually you get used to it, like an outside noise you hear. Mine comes and goes worse, when I wake up in the morning. There are some over the counter things you can try, they didn't help me. This is weird but mine 'hiss' and it seems to get worse also when my Glucose is high. Go figure. Anyway, I hope you hear back really soon from Dr. Kato.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Amsterdam
  • Registered: Thu, 13 Sep 2012
  • Posts: 6

Re: CA19

Dear notdoneyet,

Your son is not the only one with such high numbers. My mom was diagnosed in June and doctors also said no to surgery. Her CA 19.9 was up to 147.000. My mom is on cisplatin and gemcitabine and her levels dropped to 1200 at the moment. She is doing fine at the moment and scans in October showed shrinkage. Like you said I also can't believe my mom is as ill as the scans show as she is doing so good now. I hope deeply the rise of the CA19.9 doesn't mean tumor growth, i guess you have to wait for another scan to see..
Hoping that Dr. Kato will bring some good news.

Jorrit

Never give up, your miracle is on its way
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: CA19

Hi notdoneyet,

In my daughter, Lauren's case, her Oncologist looks more at how she is feeling and what her scans show. CA19-9 is just another tool he uses. Your son feels good and had shrinkage with scans. That is a great thing. I don't know why your son's test was so high, but look how much it has come down!! Lauren's fluctuate up and down. The reason we watch, but don't worry too much about this test is that it was 126 when she started out over a year ago and it has gone into the 300's and is now in the 200's. Her tumors are smaller now. They were the largest when she was first diagnosed. She feels better now and that is what matters most to us. Another friend on this site has CA19-9's in the 20's and just had two more tumors discovered. Does that make sense? I think this test is great for one thing, and that is for causing stress and worry! I hope your son continues to feel well and surgery becomes an option.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,239

Re: CA19

Jorrit, I like your Mom's update and thanks for letting us know how she is doing. I think Mom's are born with unthinkable strength inside and outside! Please keep us updated and looking forward to more shrinkage (love that word).

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: California
  • Registered: Thu, 26 Jul 2012
  • Posts: 36

Re: CA19

I had to smile and laugh, thank you so much!  You're right it only causes stress and worry!  And apparently from all the ranges of numbers here it really is not a sign of things worsening.  I feel so much better!  The fear just gets ahold sometimes and I can't shake it. 
Thank you everyone and I will let you know what Dr. Kato's response is when it arrives.