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disease progression with falling ca125 level

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

boy....i knew i shouldn't have gotten my hopes up. two weeks ago when i had my last chemo (gemzar) the nurse told me my ca125 level had gone from 1382 down to 750....a drop of over 600 points! wouldn't that make you assume the gemzar was working? today i saw my oncologist for last week's petscan results and he tells me the disease is progressing. he says that means the gemzar is not working. i tried to make the argument that maybe the progression would have been worse if i wasn't on the gemzar...he said either it works or it doesn't work...no in between. now i'm hoping to get into a clinical trial or find some doxil since those seem to be my only two remaining options.
apparently the ca125 level isn't a very good marker...at least in my case....it's the petscan results that really tell the story.

undertreatment2012
Posts: 126
Joined: Mar 2012

I am so sorry. I was told the ca-125 is a marker only and can tell them a lot usually. But imaging is the real, most reliable. So what is next? Is he putting you on more chemo? How long has your battle been? Is this your first recurrence?? I am hugging you right now. You have my prayers

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

thanks for your prayers....i was dx stage IV aug 2010...after surgery and carbo taxol i was ned for about 6 mo...tried tamoxifen, topotecan and gemzar...none worked. i'm going to try the clinical trial now if i'm a candidate because the enrollment ends in june and i will lose out on that opportunity if i don't try it next. if that doesn't work we will do doxil if we can find any! last option seems to be the carbo/taxol route again altho i guess it's considered that i "failed" on that first time since my remission was so short. i'm not giving up...just need a few days to get over this latest blow...
happy easter to all...i have 16 coming tomorrow so that should definitely take my mind off of this for a while :)

Cindy Bear
Posts: 563
Joined: Jul 2009

I am sorry. I know how disappointed and shocked you must be. Even though I don't hold much stock in the CA-125 number itself, you would think a big drop would indicate less cancer not progression. Hoping your dr. can get you into another treatment plan soon.
Big Hugs,
Cindy

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Your story makes a good case for testing the tumor for chemosensitivity. Ovarian cancer tends to have co-existing tumors that are sensitive to different chemo agents. Some die & some progress during treatment.

Were you given a copy of your report? You would need both the previous & the new reports to compare for yourself to get all the details. The bottom line is the same: it's time to try a different treatment that may or may not work.

I'm almost in the same boat as you (carbo/gem for recurrent disease). I was hoping to put off my next scan since the CA-125 has been dropping. Thanks for sharing your story as I will go ahead with the imaging. I wouldn't be surprised to get the same report as you. I hate being on this roller coaster!

lovesanimals's picture
lovesanimals
Posts: 1256
Joined: Sep 2011

I hope your doctor finds a new treatment plan that works for you. To you and the other women who are in the same boat, I send big hugs, good thoughts and prayers!

Kely

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I am so sorry for your report. I was diagnosed IIIc in Aug 2010 and only had a 9 mos remission. I am using Doxil. It is in low supply but it seems it can be gotten. My first CA125 with doxil went down but they told me it is not a good indicator. I have to wait a few months and get a CT.
I do hope and pray that they find the right drug for you.
I admire you cooking for so many. I am not even cooking for myself! Feel very weak but not really sure why. I was told Doxil would not make me feel like this..hmm
Anyway, Have a wonderful weekend.
Linda

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Sorry to hear your recent news. My numbers have always been high but I am often without symptoms. I too was diagnosed at Stage 4 so maybe that is how it is with us. I am pleased though to see youhave some more options up your sleeve - that must give you some hope. One question - if the CA125 marker isn't a very good indicator, why do they use it?

Keep strong, love Tina xx

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

hi tina.....first of all.....happy easter to you!! i hope you have a great holiday...i'm having 16 over today so that definitely takes my mind off my troubles for a day.
i was completely flabbergasted when my oncologist told me the petscan showed disease progression. even the physician's asst who talked to me during the petscan pretty much guaranteed me that the big drop in the ca125 was an indicator that the gemzar was working. i had my hopes up that the petscan results would back up the ca125 # but something told me not to get too excited. i guess my biggest fear (at least one of them) is that the side effects of the drugs on the clinical trial will be much worse. the gemzar has kind of been a non event...other than fatigue and a little nausea. i definitely have some pain....all over my upper abdomen and way down low in my pelvis....the onc. told me that's from the "seeding" of the disease....i guess the tumors are all pretty small but there's a LOT of them....i'm looking forward to switching next wednesday....this new doctor seems to have a lot more options for me...will keep you posted.... my prayers and thoughts are with you and all the other girls here...you stay strong as well.....love.....karen

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have had my family around me this holiday and it has been lovely.

Its a horrible thing to hear when your onc tells you bad news. He/she is the one person who seems to hold the key for our survival and everything they say is law in some way. My onc told me after I finished Topotecan "Its not good news" and then said my numbers had more than doubled from 485 to just over 1,000. I remember this feeling of sheer and utter panic deep inside and then I felt sick.

But we take in the news and digest it and then learn how to deal with it. It won't go away and it won't suddenly get better. So we have to find a way to go with it and fight it the best we can. I can't remember how many times I have done this, but I do know I will do it again and again because we have no choice.

I too get pain from time to time. My onc cannot tell me what it is - doh. (I am in the process of switching oncologists) So I was pleased to read about the seeding as it makes sense that is what my pain is. I also get hot flushes now I am back on chemo? My onc couldn't tell me why?

I am hoping my new doctor ill be able to give me better answers to my questions. I like to know exactly what is going on in my body and why I am constipated and why my stomach quickly gets full when I eat.

Keep strong Karen and I hope you soon get a break, Tina xxx

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

I am very sorry to hear this news. I will pray for both you and Tina Brown. God bless you ladies.
Hugs Lynda

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Karen, I am getting to the point that I don't even care what the CA125 says. It doesn't mean anything in my case either. I did the same thing as you. I got a good CA125 report and then when I got the pet/scan, it showed progression. So I don't even ask what it is anymore. When it is good the one doctor will say, oh by the way your CA125 was really good. So what. The pet/scan tells the tale. Hang in there. I am praying for you.

(((hugs))))
Linda

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

To cook for all those people! I couldn't do it but had fun making some dishes to bring. I am sorry about your pet scan, I hope your next treatment works for you. I was hoping the Gemzar was going to do it for you, I hate this disease it is so cruel with its ups and downs!
Colleen

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