CA-19 has elevated even more

Posted by MommaCandy @mommacandy, Sep 3, 2023

So for those of you who were kind enough to respond to my previous posts THANK YOU and once again i'm reaching out...
so they did a new CA-19 blood test....his last one was done before his referral to UVA (near end of July) and was 24,642... the latest one (done prior to his first dosage on Thurs was over 32k...i've not told him that because he's already thinking he's not going to survive this even though the docs have told him he's in that 15%-20% who DO have a good chance of survival because of how early it was caught...i KNOW they probably will repeat this with every visit but is it normal to have jumped THAT much??

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That's "only" about a 30% increase in one month. The numbers are huge by comparison to mine and suggest an aggressive cancer that needs to be treated soon, so I don't mean to make light of it by any stretch.

My numbers, although much lower in absolute terms, basically doubled (100% increase) every month before starting treatment, and increased once more after treatment began, before starting their downward trend. The percentage change is one factor to consider as part of the overall assessment.

Different people have different biology and chemistry... some don't produce CA19-9 at all, some produce more than others in a similar state, and anyone's CA19-9 can have multiple contributors to their abnormally high level.

I just hope his doctors don't waste too much time evaluating his progress on Folfirinox. If his response is unimpressive or mixed with bad side effects, it might be worth trying a different regimen sooner rather than later. I think 6 months on Folfirinox was kind of a waste on me, when the response trend was already pretty evident by the 3rd month. The fact that I'm getting a better response to GAC makes me wonder where I'd be if we had switched to that before my Whipple.

Anyway, @mommacandy , you continue to be a hero/heroine. Many blessings and best wishes to you!

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@markymarkfl

That's "only" about a 30% increase in one month. The numbers are huge by comparison to mine and suggest an aggressive cancer that needs to be treated soon, so I don't mean to make light of it by any stretch.

My numbers, although much lower in absolute terms, basically doubled (100% increase) every month before starting treatment, and increased once more after treatment began, before starting their downward trend. The percentage change is one factor to consider as part of the overall assessment.

Different people have different biology and chemistry... some don't produce CA19-9 at all, some produce more than others in a similar state, and anyone's CA19-9 can have multiple contributors to their abnormally high level.

I just hope his doctors don't waste too much time evaluating his progress on Folfirinox. If his response is unimpressive or mixed with bad side effects, it might be worth trying a different regimen sooner rather than later. I think 6 months on Folfirinox was kind of a waste on me, when the response trend was already pretty evident by the 3rd month. The fact that I'm getting a better response to GAC makes me wonder where I'd be if we had switched to that before my Whipple.

Anyway, @mommacandy , you continue to be a hero/heroine. Many blessings and best wishes to you!

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idk if you read my response to on my previous thread to his first chemo but he's been sooo sick...he has two different nausea meds but he's not eating...plain and simple...his blood sugar is staying in the 300+ range (except this morning it was 192, after he only ate a bowl of 2 packets of oatmeal made with water yesterday about 3 pm). He's saying the smell of food cooking is flipping his stomach...today he's eaten half a sandwich and drank an ensure...thats it...i'm sorry but i gotta cook for me and hubby...can't help if he can't stand smell of me cooking...sigh..

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@mommacandy

idk if you read my response to on my previous thread to his first chemo but he's been sooo sick...he has two different nausea meds but he's not eating...plain and simple...his blood sugar is staying in the 300+ range (except this morning it was 192, after he only ate a bowl of 2 packets of oatmeal made with water yesterday about 3 pm). He's saying the smell of food cooking is flipping his stomach...today he's eaten half a sandwich and drank an ensure...thats it...i'm sorry but i gotta cook for me and hubby...can't help if he can't stand smell of me cooking...sigh..

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@mommacandy , I did see that, and am sorry you, your hubby, and your friend are all going through this.

Since I became diabetic at the same time I was diagnosed with PC, I've basically had to give up oatmeal and most cereals because of the sugar, but especially the first couple days after chemo. The steroids they mix in as anti-nausea pre-meds are notorious for driving up blood sugar. I probably use more insulin within 3 days of chemo than I do in the next 11 days.

In my infusion, the anti-nausea meds include Emend (Fosaprepitant), dexamethasone (steroid), and Aloxi. (They replaced my original Zofran IV with Aloxi because it remains active longer. That might be something to ask your infusion center about.)

For at-home anti-nausea meds, I have Zofran, dexamethasone, and Compazine (in that order), but I do everything I can to limit it to the Zofran.

I realize your friend has pain med issues as well as psychological issues, and Compazine might be contraindicated for him.

Two other alternatives are CBD and medical marijuana. I've had success with CBD gummies and oil calming my stomach and head down without any psychoactive effects. I had a surprisingly bad episode with a medical marijuana gummy, so all I can say about that is your mileage may vary.

I eat a lot of sugar-free Jello gelatin and pudding with sugar-free whipped cream the first few days after an infusion. Microwaved sausage and coffee with artificial sweeteners is not exactly the "Breakfast of Champions," but it keeps me alive, provides some protein, and keeps my blood sugar alarm silent most of the time.

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My mom had a jump before starting chemo. She started at 1500, then 2100 to 21,000. Then after weeks she creeped up to 46,000 and a week later it was 51,000. She’s had two rounds of chemo and her numbers will be rechecked in 1 month. I don’t think it abnormal to creep up a few thousand within a weeks time.

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@bella71

My mom had a jump before starting chemo. She started at 1500, then 2100 to 21,000. Then after weeks she creeped up to 46,000 and a week later it was 51,000. She’s had two rounds of chemo and her numbers will be rechecked in 1 month. I don’t think it abnormal to creep up a few thousand within a weeks time.

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Ty that's really good to know

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My husband's CA 19-9 was 24,000 at first diagnosis and it had bumped up to 34,000 3 weeks later just prior to his start on Folfironox. After 6 months of treatment is numbers are down to 1,000. He also had a terrible time eating - he totally lost his appetite and wouldn't eat. He ended up getting a feeding tube in his stomach and that has been a God send. Our oncologist also dropped his Folfironox to 75% and that has been MUCH easier for him to tolerate while still making progress. Most of nutrition is now coming through the feeding tube and his weight has stabilized. He is feeling better and better each week. We also use a set of off-label Meds and supplements in addition to standard of care treatment designed to stop the cancer's ability to feed itself.
I hope that your husband feels better soon.

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UPDATE:
his CA-19 numbers have dropped from 33k at end of Sept to a little over 3k on the blood work yesterday... i'm pretty happy with this as he has talked to the doc yesterday and was asking him realistically what is hsi survival chance to which doc say that he's in the 15% that have a chance of it being cleared and then of that most have about a 30% chance of actually beating it... He was having a hard time with that, so when we got the results this morning it was a true pick me up... we go back to doc next week for another visit and chemo and i'm sure doc will give him a boost with that....
anyways just wanted to give yall an update since yall are so very helpful to me!!!

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Wow, that's an amazing drop. Congrats, thanks for the update, and hang in there!!!

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