Very high CA19-9 numbers?
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Hi Theresa……thank you for peeking in on us. But, most of all thank you for sharing your experience with paul. It is invaluable and incredible inspiring to all. Wow, Theresa, your numbers have tumbled beyond imagination and I am beyond thrilled for you.
Have to ask: Has your weight held steady?
Hugs and more hugs,
Marionca-Paul
I am an old member of the board but I have not posted for several months.
I found the members very friendly and helpful, but then when I started losing my discussion board friends, I had to back away. I would check the board every now and then but did not get involved, again.
When I read your postings, I felt I had to say something to you. I am in your brothers shoes with a high CA-19 count. It worried me for it seemed like I was the only one with such a high count, and my oncologist would try to assure me there are several things that could make the count go high and that the scan is what they really rely on. My count was up to 15,000 before they started chemo, again, last August. After I had a few rounds of Gem/Cis, the count went up to 21,000 and then slowly it began to come down. The CT scans are showing no shrinkage, but it is,also, showing no growth. My oncologist and I are both please with my last blood test for the CA-19 is lower than it was when I was first diagnosed in July, ’09. It is still high (941) but much lower than it was a year ago. I am still getting chemo but not as often as when I started. Like your brother, I feel good most of the time. Since your brother got a second opinion from Dr. Fisher, I take it that you are from California. Where is your brother going for his chemo?
I go to an oncologist in Monterey, but I, also, see an oncologist at UCSF Medical Center.
I wish your brother the best.Hello, Marion, so glad to see that you are still here with all of your help. I hope that you are doing well.
pljc……I have learned that about 5 percent of all people lack the Lewis antigen (a blood type protein on red blood cells) necessary to identify CA19-9 tumor marker. It is a bit different with pancreastic patients.
All my best wishes,
MarionMy CA19-9 was 8.3 on the pre-surgery labs prior to my resection to remove my left liver lobe, gallbladder & 5 lymph nodes. I had 9 months of Cisplatin/Gemzar & weekly labs varied from 4.3 to 7. I was tested on my last appt at Duke in Jan2011 and CA19-9 was 6. I was followed for 10 months prior to having a biopsy because none of my labs showed anything wrong! I have Intrahepatic Cholangio, Stage 2, & have been told that CA19-9 will probably never be a realiable predictor for me. Go figure.
My very best wishes for your brother. YOU are a good brother!
Thanks Lainy,
My brother does not have stents yet.
I will remember Levaquin if any blood infection comes up.
We hope to see this week’s CA19-9 number. We’ve asked his doctor for more frequent CT scans so we can correlate with the CA19-9 numbers.No. It is a blood infection that can only be determined by putting the blood sample in a special container along with something else. I am so sorry, I just can’t think of what it is called! It can take up to 5 days which is why the ONC said put him on Levaquin as that will take care of what ever it turns out to be. And it did. Perhaps Percy can help on this one.
Hi Paul. Well mostly I was wondering if your brother had a stent. Stent infections are common and can cause high CA counts. The other I think is something like a blood infection as that is what Teddy used to get and it can only be determined by a special blood test (I am so medically challenged) where they put the blood sample in a LAB jar and it can take a few days to show the virus. Yikes! I am so sorry about this. Teddy would get unbelievable chills and high fevers and I knew the minute it started to run him into ER. They would put him on Levaquin which they said would zap anything he would be fighting and it did do the trick. Wish I could be more helpful. If I can think of any better wording I will post you again.
Update:
The CA19-9 numbers has decreased as reported in the following blood draws:
6/3: ~18000
6/10: ~24000We are cautiously relieved that the numbers are trending down, but his primary oncologist cannot decisively determine how chemo is doing. All 3 liver functions metrics are in normal range now.
Lainy,
Sorry for not responding earlier. What type of infections are you referring to and how do we test for them? My brother has a cough, his oncologist tested that its viral (not bacterial) and for the most part is having my brother ride it out.Paul
Hi Paul and thanks for the update. Just an FYI that a high CA-19 can also be from an infection. Ah, the good old roller coaster ride both physically and emotionally! This is why it is so important for those around your brother to try their best to be very strong. You can be sure that what ever you post here is of value and interest to all our members. Keep up the good work and I look forward to the next report.
Quick update:
Since last I posted and the switch to GTX from gem/cis, my brother’s CA19-9 number increased to ~39000 on a blooddraw from 5/19. (the last CA19-9 number of ~24000 was from 5/13)
The CT from 5/19 show no changes as reported above.
In our visit to Dr Fisher of Stanford for a second opinion, among some of his comments, he explained that CA19-9 numbers do “spike” after initiating chemo. Furthermore, he stated that a good response indicator of chemo treatment is the “good feel” factor, where my brother feels better after the chemo treatments and the pain in the liver decreased. Dr Fisher’s review of the CT scans did not review any changes, but he did caution that CT scan results usually take longer than weeks to reveal.
The 3 liver function metrics (Alkaline Phosphatese (Total), GPT, GOT) have all returned to nominal ranges as of blooddraw from 6/3.
We are waiting for CA19-9 numbers from the 6/3 blooddraw, before his second GTX application.kamnbelle, after 1 GTX application, my brother is not showing any major side-effects. His fingers and toes are drying out and “blackening” but not very significant right now. Taxotere does cause some allergic reactions and my brother has been infused with Benedryl during the same infusion. He is not having nausea and only slight diarrhea. As he is continuing with GTX, I will report back.
Also, Dr Fisher (during the second opinion review) thinks gem/cis is NOT shown to be not effective from the evidence in this case, so he thinks we can go back to that at a later time. Folfox (which I found out is 5FU + oxaliplatin) is next on the table if GTX is not working.Thanks for everyone’s kinds words.
I hope reporting on my brother’s progress will provide helpful info to others.
My brother is approaching only 2 months since diagnosis, and has be a big emotional roller coaster ride.I was interested in the fact that your brother was prescribed Taxotere, right after Cisplatin. PubMed had some info on increased side effects from previous Cisplatin. My dad just had his first follow up at MDA after four rounds of Gem/Cis. No change in tumors, no new growths, the CT scans looked eerily the same as the ones in February. (Background: Dad has several retroperitoneal tumors, but no primary although cholangio is suspected). I took that as good news. However, his CA19-9 had increased from 1600 to 2100. They want him to do 5FU and oxaliplatin. Any thoughts?
Much hope and good thoughts to your brother.Hi Paul, No progression sounds great to me! Interested to know why they changed chemo after 1.5 rounds? Here’s to the new concoction shrinking those tumors!! Nancy
Update:
My brother repeated his CT scan last Thursday and reviewed the results with his doctor last Friday. The scans show no changes to the tumor sizes, they did not increase nor decrease in size. There are no new metastasis in other organs. This was after 1.5 rounds of gem/cis treatment.
There were no mention of any biliary blockage, so I don’t think the doctor can explain the increased CA19-9 numbers. The 3 liver function metrics in the blood draw (Alkaline Phosphatese, GPT, GOT) are still higher than normal range, but have decreased to half of the amount since before starting chemo treatment.
I think we consider that to be good news.
He started his Gem/taxotere/xeloda infusion last friday (abruptly stopping gem/cis in mid-round) and beginning to feel the side effects.
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