Well I got back from my vacation last Sunday with having to have 5 ¼ liters of ascites drained. Prior to vacation I had 18 treatments of radiation for a tumor on my vaginal cuff. My pet/ct scan was cancelled and I started chemo Thursday, topotecan/avastin. They couldn’t access my port, I had a scan and it’s cracked. I need a new one.
I had my ca 125 drawn and it was 28,000, which is the correct number. I’m devastated!!
I so upset to think I don’t know where the cancer is at because of them cancelling my scan. Has anyone ever had ascites drained the second time? Shouldn’t I have a scan to see where the cancer is at? How about the high ca 125, my oncologist didn’t seem concerned. Nine weeks ago I had a scan and the only thing that showed was the tumor on the vaginal cuff, now all of a sudden I must be loaded with cancer. How could this be? I’m so sorry for venting, I’m just so upset. I’m praying someone might give me some help.
Hugs and Prayers to all you Teal Warriors,
Terry
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Update CA-125 Is 28,000
- By ladyjogger31
- Posted October 12, 2009 at 10:14 am · 13 replies
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- By lifeisgrand
- Posted October 12, 2009 at 11:08 am
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So sorry this disrupted your holiday.
What was your CA125 prior to this one? From my understanding the number value doesn't necessarily confirm the amount of disease. Some tumors just excrete more of it than others.
- By Jennali
- Posted October 12, 2009 at 11:34 am
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I am echoing what lifeisgrand just said. My CA125 prior to surgery was 448...belly full of cancer. Now my recurrence is confined to my lymph nodes and my CA125 is 4420. My gyn/onc continues to emphasize to me (cause I was kinda freaked) that the numbers DO NOT correlate to the amount of cancer. He said the trend is going to be to either stop doing CA125s altogether or else, not reveal them to the patient (with her consent and knowledge), because we do tend to freak out.
- By ladyjogger31
- Posted October 12, 2009 at 12:50 pm
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Hi , before radiation it was 300 and climbing, after radiation it was 7,000, then 5,000. Now after radiation in 9 weeks it has gone to 28,000.
- By KathleenLouise
- Posted October 12, 2009 at 1:25 pm
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Don't worry about how many times you are "drained" I had 2 liters taken off end of July and another 2 liters off last week. My friend had to have a catheter installed as she was being drained 2 liters every day. So, the most important thing is to be comfortable. As far as the number correlation, I'm not sure about that. I am in my 3rd line of chemo pending a stem cell transplant and after my first infusion of cisplatin/gemcidibine my Ca125 went down to 492 from 909 but after the second went up to 672. I have to wait a week to do the third as my RBC & WBC are down. The hope is that I am not platinum resistant after a year. Needless to say, the marker does freak me out too.........and like everyone else, we shouldn't let it. Best of luck and stay strong!
- By CATSMEOW
- Posted October 12, 2009 at 2:58 pm
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Was your ca125 drawn BEFORE of AFTER your ascites drain? That COULD make a difference in the numbers.Iam not a dr.but seems relavant to me.
Also I have not had any radiation, but from somewhere I read(dont remember where), It makes your normal cells slightly abnormal.That could be whats going on. When the ca is drawn it shows a higher degree of possible(or not) cancer.
I noticed that your ca was accurate in the relative sceme of your disease.Mine is also. Of course it is not with everyone.
As for the CT scan postponed(cancelled), that may be due to the radiation exposed to you at this point, and the dr. wants to wait. The Ct scans have radiation, and since you just completed a series of radiation, adding on to that may not be what he wants. But, thats not what you want.
Tell him/her you request a MRI. Even though they are not as accurate, you can still gauge your disease with the prior CT in corralation with the MRI.
Hope this helps you.Wishing you the best.Keep Positive
- By MinnieM
- Posted October 12, 2009 at 3:12 pm
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It just dawned on me that the radiation is probably causing inflammation, which can definitely mess with CA-125 numbers. As everyone iterated above -- the number definitely doesn't correlate to the amount of disease since some women never have high values, and other's numbers jump up with the least little thing.
My numbers didn't drop after surgery, or after first chemo -- they went up. The doctor suspected it might have to do with my body's inflammatory response to both. We don't know for sure, but I liked that idea better than my cancer growing right after surgery (which supposedly removed all of it) and after the first chemo. I'm betting you're like me and have a high inflammatory response to the radiation.
- By CATSMEOW
- Posted October 12, 2009 at 5:56 pm
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I know you went to Fox Chase , I went there, and they gave me no chance. I am now at University of Penn. Go see Dr Cuokos. HE will give you Hope .
Keep Positive.
- By TvlBeach
- Posted October 13, 2009 at 9:24 am
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After reading the last post, I know a comprehensive cancer center would have not allowed it to go that long before treatment. Get a 2nd opionion! I know my Dr's would have done something if my CA125 has doubled. I'm so sorry you have to suffer again!
I go to "The Cancer Institute of New Jersey"
- By froedtertgal
- Posted October 13, 2009 at 6:08 pm
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Two months ago, I told my doc I did not want to know my Ca125 number anymore unless I asked for it. Right now, I feel I don't want a number controlling my emotions in between treatments. At some point, I might change my mind, but for now, that's how I want it. It might seem like a tough thing to do, but I feel its been a good change for me and have found it relieves my in-between treatment stress.
What I do know is they will treat me to the best of their ability, discuss options with me, and we will move forward together.
Bless all of you.
- By Jennali
- Posted October 13, 2009 at 9:32 pm
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My doctor offered me the option of not knowing my CA125, and I declined. I still want to know. I am just trying to put it into perspective and look more at the big picture.
- By Cheryl4Teal
- Posted October 13, 2009 at 10:29 pm
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Like Pam here I go to "The Cancer Institute of New Jersey" as well. And yes they too would do something if it doubled right away. My CA125 was at its peak 160. Thats all, yet I had tons of cancer inside me.
ITs a very accurate marker for me , currently im sitting at 14 so im pretty happy, and still recieving treatment 3 more rounds to go.
I too am sorry you are suffering so much again, and wish you the very best and that you get the help you need.
- By Carmeta
- Posted October 14, 2009 at 12:34 pm
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Minutes ago I learned my CA-125, which had been hovering in the 300's for about six months--two weeks ago it was 339-- is now 663! That's three times higher than it was before my surgery and staging at IIIC three years ago. Tomorrow is my 69th birthday and I wonder if I'll get to celebrate my 70th. I don't feel upset by this, but I suspect I'm in shock and the dekadron they infused into me before my chemo yesterday may be making my mood more positive than it would otherwise be. When I crash off the dekadron I'll probably be a basket case.
I must say, reading about other women living with high CA-125s gives me assurance that it doesn't mean necessarily affect the quality of life if we don't let it get us down. Thanks to everyone writing on this topic. Your presence means a lot.
- By SONGBIRD49
- Posted October 14, 2009 at 3:02 pm
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Dear Ladyjogger31: another Fox lady! Me too! and am very content with them. My #1 guy there is Dr. Schilder for oncology and he makes the decisions but I have chemo treatment locally (in Washington Township where I live) and have a #2 oncologist. I noticed you just started Avastin. I am just beginning my 4th month (phase 3 of chemo treatments for recurrent progressive blah blah) but am having wonderful results. It is not without side effects but they seem more manageable than prior chemos I have been on since NOV2008. Anyway, the Avastin was prescribed for me because of the acietes problem I was having. Within 1 month I had 7 liters off, the 2 weeks later another 4, than 2 more weeks had another 4 (ready to remove) but I kept it for an MRI after 1 month on Avastin to prove to myself if worked. And it DOES. I did not even have 1 liter and the Taxol I am having for chemo now with the Avastin dried up all those 4 liters. Alot of times throughout the past 11 months for me, crap has happened and I have been one of those totally bent out over high CA. The Avastin brought it down immediately from 4 digits to 183 and last month it was 154 and I will have another reading next week. We do it the 1st chemo of the month. I drove my oncologist #2 crazy with the whole numbers thing from day one as I am an accountant and was looking for those "exact #'s drop" every chemo. Try not to worry about it. Everything all of these woman before me responding are RIGHT! Good luck with the Avastin I am sure you are going to see a positive turn around and more quickly than you think.
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