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CA 125 was going down nicely, then it went up-Carbo Gemzar Avastin

carolleigh profile image
7 Replies

I always write here when I have a problem, more than when it's going well... so when I read here I see lots of people probably do that. It had been going well. I am my first recurrence, Carbo Gemzar with Avastin. It had been going down after my doctor added Avastin, but this week went up 3 points, from 6.9 to 7.2. (mine run low). Does that ever happen and it will go down again without having to do anything different? I am just scared. My CA 125 dropped a lot when I started Carbo Gemzar, then it started going up again. The we added Avastin and it's been going down well, and now this. What am I to think. Of coure it's the weekend and the doc isn't in. I have to remember not to look at my numbers on the weekend. :-( Thanks if anyone had this experience and can tell me that it can go down again.

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carolleigh
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Mamaw1 profile image
Mamaw1

I have been told that Ca125 will go up and down. As long as it stays in the normal range there is nothing to worry about so the Dr says.

carolleigh profile image
carolleigh in reply toMamaw1

Thanks so much for reaching out! I think that is between chemo though, not during chemo. I talked to a wonderful woman on the Share helpline who told me something similar, so I will just wait till Tuesday and call my doctor. I felt better yesterday after I posted. Then last night I dreamed by car was towed! Anxiety dream. I am hanging in there and keeping my spirits up. Thanks again for replying. It means a lot at times like this. :-)

OCfighter profile image
OCfighter

CA 125 goes up and down - I was told that if it jumps over 10 points it may be something to pay attention to.

I was also told inflammation may trigger you CA125 to jump.

Your doctor is monitoring this with you...ask her/him for guidance

Best wishes

carolleigh profile image
carolleigh in reply toOCfighter

Thanks. I guess I have to wait till Tuesday when he is in the office (holiday weekend). I don't want to call him. I just want to get through the next couple of days without anxiety. I really really appreciate you reaching out to me. It helps to have people respond. Thanks again!

carolleigh profile image
carolleigh

FYI, I got to talk to my doc and he says .3 points isn't enough to panic about and that we will try more avastin or something before we switch. I will get an extra CA 125 test this week too. He also assumed me there are lots of options for me. I feel better. Thanks everyone!

Margiedolly profile image
Margiedolly

Hi, Carolleigh! How are you these days? You had asked me a very pertinent question during our chats a while back about CBD oils and pancreatitis. You asked me how I knew it was my pancreas. I just got my MRI results of my pancreas. They found two cysts, one at the head and one at the tail of my pancreas. They also found some precancerous cell changes in my pancreas, all we're considered to be remnants of a serious bout of pancreatitis. Apparently a inflammation in the pancreas can cause pancreatic cancer.

I no longer use any CBD oil, as whenever I try it my pancreas spazzes out. I was using "Ethos" brand, "Relief" and "Beauty Sleep". They changed their name to "Green Revolution". They are RSO.

I realize this is a rare reaction to CBD oil, but what a heavy price to pay. I will now require surgery on my pancreas to remove the precancerous lesions.

I hope you are doing well, and your CA125 counts are behaving!

💖Margaret

carolleigh profile image
carolleigh

Thanks for asking. What about you? How are you doing?

I just got back from Vegas… so happy. I was healthy, walking 8 miles a day and I didn’t gain weight although I had two buffets among other food. :-)

It’s my understanding that you don’t use any cannabis products now, right? It’s not just CBD, it’s all of the cannabis stuff. Meanwhile I am supposed to figure out how much CBD vs. THC I should take. I have a free source, but not 1 gram a day. I want to learn more about that. even though I almost sort of did that last time before remission. Basically I have a lot to learn and I just have too much to do, so I don’t prioritize it. I think maybe I am not so convinced about it as a cure… but I just don’t know. I try to do a little cannabis every day at least.

One thing I noticed is that on the boards online people ALWAYS have the rare side effects or occurrences. It seems like everyone has one or another unusual thing. Confusing…

Maybe in the future when there is even more cancer, they will have resources and programs people like us can attend to learn about cancer in the best ways. I often feel like I need more scientific info that’s made for cancer patients, very up to date if there are stats, etc. I don’t feel like there is any of that.

I feel better since my doc finally told me that Avastin (which I take with carbo gemzar) works like that, up and down. I am not sure I believe him. At this point I see that communication is never exactly perfect. He told me in a month we might try to pump chemo directly into my abdomen. It will be about a month when I see him.I had a CT Scan. He said it’s shrunk by 75%, now 3 grans of rise size, and no more cancer anywhere else. If my CA 125 doesn’t get down to 5.8 then we will try the other thing directly into the abdomen. My mini tumor is in the lymph node area.

Also March 23rd I have this:

thesecondopinion.org/ A panel of doctors just for me. My social worker from Shanti will take me there and do it with me.

Thanks again for asking! I appreciate that a lot. :-) Let me know how you are too.

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