How many treatments does it take for CA-125 to come down?

[MinnieWM]

I was diagnosed with clear cell stage 1c.  My CA-125 went up from 229 to 431 post-surgery in a period of 5 weeks, then went up to 435 3 weeks after my first chemo of carbo/taxol.  I'm wondering if I'm platinum resistance since my doctor had led me to believe it would drop dramatically after the first treatment. (He also said it would drop dramatically after surgery, and that didn't happen either.)

Has anyone else had a similar experience?  What are the other chemo options?  He said I have to go 3 rounds, then they will do a CAT scan.  I'm wondering if something was missed, but he is adamant that there was nothing showing anywhere visually or with CAT scan, and all biopsies were clean.

[Teresa222]

CONGRATULATIONS on finishing the Country Music Half Marathon.  That is a feat for anyone to do, much less while taking chemo. You are my hero!

I hope we can meet next week again if you are available. I have a CT Scan and an appt. with my ONC.
Teresa

[Teresa222]

CONGRATULATIONS on finishing the Country Music Half Marathon.  That is a feat for anyone to do, much less while taking chemo. You are my hero!

I hope we can meet next week again if you are available. I have a CT Scan and an appt. with my ONC.
Teresa

[MinnieWM]

Well, the CA-125 is coming down -- 170 from the previous high of 435.  I had them run my test a week early so that I wouldn't get the results from the doctor, and be unprepared.  

I asked the nurse if the fact that it took a 2nd treatment to start it going down was indicative of platinum resistance, and she said not necessarily.  It could have been my body's reaction to the surgery was a large inflammatory response, which would have skewed the numbers.  I've not heard of anyone else reacting that way; so, guess I'll have to wait till the 3 and 6 month followups to know for sure.  Regardless,  I have the notes all of you sent me on second round treatments and clinical trials so I won't be unprepared.  

The uncertainty of everything is hard, but I'm going to take this as a positive sign, and hope the numbers keep dropping.  Not sure when I will have my first CAT scan, but will let all of you know the results of that.  That should be a better indicator of disease progression that the CA-125, which does not appear to be very dependable.

On an even happier note, I managed to finish the Country Music Half Marathon this past weekend.  I walked more than I ran, but I was training for it when I was diagnosed and hated to give up on this goal totally.  I had started back walking the day I got home from surgery, and gradually progressed from an initial slow .5 mile up to 4-mile walks daily.  I discovered that walking really helped me with the pain in my bones from the Neulasta shot; so, I'm going to try to keep this up through the subsequent treatments.

Anyway, thanks again for all your encouragement and information, which is now in a rapidly-expanding folder.

Minnie

[doicat]

Hello Minnie:

I am also a Clear Cell OVCA person and also the standard Taxol/Carbo did not work for me either.

My numbers did go down after surgery, but started climbing before I even started chemo.  They did drop after the 1st chemo treatment but stopped going down after that.  Long story but, look at my journal and you'll see that after 3 treatments, did a CT scann, then went to MDAnderson.  Bottom line, I'm now on a clinical trial that I recommend you check out.  It is with Doxil (which both my doctors recommended) and the trial drug EC145/Precedent.  Check it out on clinical trials dot org.  I think they are still recruiting and it looks promising.  I'd love to talk to you more about the clear cell thing...I'll also friend you and that way we can Personal message each other.  Teresa 222 is another that you really want to talk to.

Sorry this has come your way but glad you have found us.  

Teresa/Doicat

[Teresa222]

Yes, we need to talk live to see what else we have in common. I wonder if we have the same doctor? I will send you a friendship thingie, then we can exchange email addresses if you like.
Teresa

[MinnieWM]

Teresa,

Thanks for sharing.  You're right -- not a lot of this makes sense.  My gyn/onc won't do a CAT scan until after the 3rd treatment, but I'm going to push to change plans after that if there is no indication that carbo/taxol is working.  I know that Doxil and Topotecan are two second-line treatments, and I'm sure there are others.  I just don't want to waste time on something that doesn't appear to be working from the very start.

I noticed that we're from the same city, and would like to stay in touch with you and all the clear cell girls since we seem to be somewhat odd fish here in the states.  Evidently there is more research going on in Japan, where it is more common, than here.  I've also read that structurally it is closer related to renal clear cell cancer than to other ovarian cancers; so, I'd love to hear from anyone that has undergone a treatment that has worked.  

Thanks so much for responding.

Minnie

[MinnieWM]

Dian,

Thanks for your positive words.  I do have an excellent gyn/onc who was sure my numbers would come down after surgery, and be normal after the first treatment.  Yes, he's insisting on 3 cycles, then a CAT scan before giving up on this, and I'm willing to go that far.  

I'm trying to educate myself on 2nd line treatments because I was caught off guard this last visit when I found my numbers had been rising.  I want to have the discussion about next steps ahead of time, and not be sitting in the examining room writing down what he's saying, but not being sure what it means.

Good luck with your check next Wednesday.

Minnie

[Teresa222]

I too have Clear Cell OVCA.  I am platinum resistant, but did not find out until after the first six rounds of the stuff.  Just from the small number of ladies here with Clear Cell, it seems many of us ARE platinum resistant.  My CA125 fell very quickly while taking my first round of chemo. In fact, it was within normal limits prior to the 3rd treatment. So, the CA125 is not always accurate in determining whether or not the cancer is responding to the treatment. One month after my last carbo/taxol treatment, another tumor was discovered that required more surgery.  It was my ONC's opinion that this tumor was there all the time. So...go figure.

What I am saying is that this cancer is a sneaky one at best.  I would try to get him to request a CT Scan right away.  You might be able to determine from that what is going on. Also, my CA125 went WAY down after my first surgery.  It was 375 or so and went down to 75 even before my first chemo.  As you can tell, most of this doesn't make sense at all. Just try your best to stay on top of it. You do have reason to question quite a few things right now.
Please let us know how it goes for you. Some of we Clear Cell gals try to keep closer in touch. It's been very helpful for us especially when it comes to being platinum resistant.
Teresa

[dian07]

I can sure understand your anxiety about the numbers.  I'm not sure there is a rule of thumb regarding the falling numbers.....I guess we are all different.  Have you asked your onc about the possibility of being platinum resistant?   I doubt he/she will want to give up on the standard carbo/taxol without giving the first three treatments....I think that is the re-consider point.  I know I would be getting anxious too......heck, I am anxious about my 6 month check up next Wednesday......this disease really stinks.   So much waiting to get news we really don't want, but in a way we do!  The waiting is so hard.....so many head games.  All you can do is voice your concerns and make certain you are being heard....then wait.  We are all waiting.  
Hang in there......remember you are your best advocate......if you have questions just keep asking until you get answers.....dont be afraid to get a second opinion.....is your onc a gyn/oncologist?  If not perhaps a referral and second opinion is your best bet.....actually, if you aren't using the expertise of a gyn/onc now is the perfect time to find one.....even if you are....maybe, as I said earlier, now would be a good time to get the opinion of another.  Hang in there....don't stop pushing and please do let us know how you are doing!   Go kick some tires , girl!
Peace.
dian