CA 19-9 and pancreatic cancer: What do the numbers mean?

I had to move from Folfirinox to Gemcytobene as well but my CA19-9 rose with ut. I am now on same regimen as your wife and CA19-9 is stable. I have lesions in the liver as well and will do a CT in two weeks...hope to see stabilization rather than progression of disease. The best to your wife.

My wife's recurrence was treated with 8 GAC treatments then 10 more GA treatments. The CA19-9 bottomed out after the 6th GAC treatments but started rising despite "staying the course" with more treatments. We were ready to quit treatments because the side effects are so debilitating and our requests to go back on folfirinox were being rejected. Finally, we got the approval to switch to Onivyde (same as folfirinox but with the liposomal modified irinotican). After 2 Onivyde treatments, her CA19-9 has dropped 59%! We won't get another scan until after the 6th treatment but now have renewed hope that the cancer can be beaten. Our oncologist is also reviewing clinical research for additional agents for treatment and eventual maintenance. CA19-9 is only one data point but has been very good at predicting recurrence or absence of tumors for my wife.

To LML -your statement "feeling of threat" is profound, I was not able to phrase it as that. And denial crops up also - reverts to childhood thought process for me; if not recognized it may go away. My spirituality is very sincere with daily thoughts of that I am here. Six years now and fighting for more life and daily prayers of thanksgiving.. We have to keep the LIFE a very superior element of our thinking. Your last sentence "Cancer --- and continuing to the end of your paragraph", I recall when the Dr. spoke the word cancer - can only describe my brain as expanding and retracting. I asked my son who was standing near me if he was okay with this - he said yes; and everything ran its course since then. Please try to move past what we feel is our life sentence - I try to live in the thoughts of Brother Lawrence, "The Practice of the Presence of God". Wishing you peace and courage. P.

thanks caryn..i have a feeling they will tell us the same thing so im looking for second opinion options..thanks so much for the information and prayers for you for a successful surgery.

@mcendroski

After 8 folfirinox treatments and 28 radiation treatments I was told I was not a candidate for the Whipple due to arterial involvement. My surgeon, who had seemed enthusiastic about my chances for resection prior to radiation, declined to operate after reviewing the final CT scan. This was at an NCI comprehensive cancer center, rated top 50 in the US. (My CA 19-9 dropped from a high of 94 unit/mL to 7 at my final blood test).

I came to Mayo Jacksonville for a second opinion. After an MRI my new surgeon said he saw no arterial involvement. I'm due for surgery on Nov. 10.

I highly endorse second opinions!

my husbands ca19 9 number started at 125 in June they are now 36 and normal range is 0-35. He had scans after 6 treatments which showed the tumor still there it also was close to sma artery dr said it had not pulled away enough for surgery..after treatment 7 his ca 19 9 numbers where 36 so im hoping this means its shrinking and he can have surgery. The onocologist says sometime the tumors decenegrate..so being hopeful that after chemo is complete he can have surgery.

@annebauer19
My wife went to Johns Hopkins for her SBRT. She also had her surgery there since they are a pancan center of excellence. She also had IORT (intra operative radiation therapy during her pancreatectomy). JH is one of the few operating theaters with this capability. IORT is used to treat the surgical margins and was apparently succeful in my wife's case since she has had no recurrence in the extensive surgical bed. She has experienced skip-metastasis to the ovary but that start of that tumor likely predated her pancreatectomy.

SBRT is ideal for localized therapy since it doesn't overdose large areas of the body but it is limited to use when there is a well localized target.

Once again, I'm not a clinician, just relating experience through my wife's treatment. Please be sure to check with your medical team and get second opinions. JH was our second opinion source and continues to review her scans while undergoing treatment locally.

Hello again. Thanks for the info about sbrt. I have been reading about. It seems like it accomplishes what regular external radiation does in a much shorter time. I don't know if there is a downside..I would also like to know which treatment centers are doing it..sorry to hear about metastasis. For your wife she has been through so much..wishing you both well.

I appreciate the explanation, @beachdog . It sounds like a very effective treatment method. Do you mind sharing the facility where your wife was treated?

Sbrt is focused radiation treatment. Gold fiducials are implanted in the target area of the pancreas via EUS. The fiducials are targeted during the radiation which creates a pattern like the spokes of a bicycle wheel. That way the target gets the main radiation and the rest of the body receives minimal exposure. In my wife's case, they used photon radiation and the tumor was 100% necrotic after 5 treatments. There are a limited number of facilities with the technology to perform sbrt.