July 18, 2010 at 5:13 am #18602haiminhMember
So what do you think? If a person is normal, just with increased CA199, does she need to have further test and what test she should take? For my Mum, I am having a blood test again for her in 2 weeks. And then, if things are still not good, she may have a PET scan a month after.
Best wishes for you.
MinhJuly 17, 2010 at 6:38 am #18601rowena32Member
your directions were so clear and simple, that I was able to follow them. I don’t know if my back pain is the same, but I will mention it to the doctor, again, on Monday. Mine is more of a back ache, than pain. After a good night’s sleep, the next morning it is fine, but by evening it is back, again.
There is a lot of good information here. Thanks, for helping me find it.
TheresaJuly 16, 2010 at 7:56 pm #18600gavinModerator
You are so right Marion in what you say about here being such a wonderful place for us all. I would have been lost without everyone over the last few years.
Best wishes all,
GavinJuly 16, 2010 at 7:51 pm #18599lainyParticipant
Unfortulately I had to cancel the meeting for now. Because Teddy is getting more tired and more uncomfortable I felt that he would want the total time with his children. Some work some don’t and some other family members are coming to see us. We have almost 14 days penciled in pretty good. Just not the right timing. Darla and Margaret understood. Leaving for the ONC now and will update Teddy’s status tonight. Love you, lovely lady!July 16, 2010 at 7:17 pm #18598
I agree, Darla. And to carry it a bit further everyone those, who are spoken for and those who are posting will always be accessible to us. They are just a mouse click away. What a wonderful place this site has become.
Darla, you must be looking forward to meeting up with Lainy and Teddy. I wish that I could be there too.
MarionJuly 16, 2010 at 6:51 pm #18597darlaParticipant
Me too, —SIGH— but it is wonderful to know their spirit and wisdom lives on here. DarlaJuly 16, 2010 at 5:07 pm #18596
Pam…I so much agree with you. We are fortunate in that we can retrieve their postings at any time. They still guide us with their wisdom, compassion, and their infectious humor.
MarionJuly 16, 2010 at 4:48 pm #18595cherbourgParticipant
Jeff and Peter in the same post! I really miss both of them…
PamJuly 16, 2010 at 7:02 am #18594
Theresa……we have several incidences of spine involvement due to CC. In fact, you might want to read up on JeffG’s comments.
The easiest way to find his posts regarding this is the following: scroll up to where to top, you will see, starting from left:
Main User List Rules Search Forum, etc.
Click on: Search Forum,
a Search window will appear:
enter – “spine” in the box that says: Keyword Search
and enter “JeffG” in the box to the right under: Author search.
Jeff had an MRI, a CT scan, and a bone scan. It confirmed mets to spine. He received several doses of radiation which gave him great relief.
You had mentioned back pain several months back and it had not been addressed, but I believe that it should be looked at now.
I assume that you will be heading to UCSF on Monday. Drive safely and good luck. I will be thinking of you and am sending all my best wishes your way.
MarionJuly 16, 2010 at 5:57 am #18593rowena32Member
Hi, Andy and Marions,
I am so glad to see you discussing the CA-19-9. I had a blood test on Monday, and the CBC and the CMP results looked fine except the WBC was just a little low and the ALK Phosphatase was a little high, but the doctor who put in my bile duct stent said it would never be normal. I have a metal mesh stent in one bile duct on the right side and they could not get to the left side. My total bili is within normal so that means that it is draining.
I got the results from the CA-19-9 test today and it was very depressing. It had gone from 6658 to 9880. It had been going up each month but never over 1000 in a month. I have not been on chemo since the 5th of November for my doctor said that if it is slow growing which the scans have shown, the doctor did not want to act, on the CA-19-9 results alone.
I had a MRI today and hopefully, the doctor will have the report when I see her on Monday. At that time, she will, also, have the blood tests results. I am afraid that the MRI will show some growth or new stuff as I have been having some back pain. At first, I thought it might be from pushing and lifting, I had done, but now, I am wondering if it isn’t the cancer.
Could my stent need to be replaced or opened if I have no symtons like I did the first time? Andy, do you have a stent and did it need replacing without you realizing it??
Does anyone know what may be causing the back pain or is that what goes along with CC? I have mentioned it to the doctors, but they don’t say too much, but now that it has gotten worse, it worries me.
I appreciate all the good information that is on this board.
TheresaJuly 15, 2010 at 10:25 pm #18592
Andy….this confirms our experience on this board. Stent replacements have shown to decrease the CA-19-9 tumor markers not always, but often. Thanks for sharing and please, continue to do so.
MarionJuly 15, 2010 at 10:12 pm #18591andyParticipant
I’ve just been catching up on CA19-9 as my values went down when my chemo and other treatments succeeded in 2009, but in 2010 they’ve gone up and down erratically. However it seems that if your bile duct is blocked or inflamed, it secretes the same CA19-9 as a cancer even though there is no cancer there! A simple gall stone will do it.
References for this start with Wikipedia (http://en.wikipedia.org/wiki/CA19-9) and then go to:
http://www.ncbi.nlm.nih.gov/pubmed/10065510 (in 1999!) or more recently
So in my case it has simply coincided with my stents getting blocked (CA919-9 goes up) then when they sort themselves out CA19-9 goes down again.
My relief is that it’s nothing to do with cancer – I just wish one of the medics had told me in the first place!
AndyJanuary 5, 2008 at 3:32 am #18590annshalParticipant
Jeff and Peter, thank you for your input on this. There are so many questions with CC and as one Dr. said to us, “contrary to what people believe, we Dr’s do not have all the answers”.January 4, 2008 at 5:18 pm #18589peterMember
CA19-9 seems almost more art then science in my discussion with Docotors. My experience personally is that the direction of change is a good indicator of the course of my disease and is supported by my clinical self assessment and how I feel.
I have had liver docs tell me that they believe CA19-9 can fluctuate with Ascities and/or liver disease which are both common side effects for CC. The ascities may, or may not, be cancerous so they postulate that it doesn’t necessarily indicate cancer activity.
Regardless, a drop is good and Jeff’s ponderings make good sense to me.
-PeterJanuary 2, 2008 at 11:25 pm #18588jeffgMember
Ann… CA-19 count as you probally know is used for monitoring the aggressiveness of tumor activity; lower the count less active, higher more active. I can’t say for sure but with blockage the serum can’t leave the body properly and and is more likely to be absorbed, With stents in place the serum can flow and depart the body more quickly. That is just an educated guess. I really can’t think of anything else except maybe a big change in diet. I’ll keep on researching this that is for sure.
- You must be logged in to reply to this topic.