CA125 rise experience.

[Ang80]

I don

[katditty]

I was diagnosed with stage 111c Ovarian Cancer in January 2006; I had had severe IBS for many years and any OVCA symptoms I might have presented with were masked by IBS.  I had optimum debulking surgery in Jan. 06, then complications in Feb. postponing my first chemo.  Then 2 courses of vascular chemo w/carbo and Taxol followed by 4 courses interperitonial chemo w/Cisplatin & Taxol then 2 more vascular courses, ending in Aug. 06  CA-125 started out at 623 pre-surgery and ended at 10, which left my husband and me very hopeful about my outcome.  We just got back from a 3 month road trip in Mar. during which I did not have any CA-125 levels drawn. In Dec. 06 before we left, my CA-125 was 19; in march it was 34; Last week's draw, it was 46.2. CT scan in Mar. showed some fluid in abd. cavity, some fluid in lungs, and my Gyn. Onc is watching a lymph node in my groin which has remained the same size since Sept. 06.  She says she is not concerned about the steady rise in my CA-125 level; because I have such severe IBS and have been having a "constant roller coaster ride" of IBS episodes since Jan., with abdominal pain, diarrhea/constipation alternating, fatigue and other IBS symptoms, she feels that this is what is causing the rise in CA-125 levels, and that we should just keep doing monthly CA-125 tests until I see her again in mid-June.  From reading all the postings here, I can see that my levels are not terribly high, but they have been steadily climbing and they did more than double in the 3 months and now have climbed again.  I admit I am having trouble remaining calm in the face of all this, and my husband is also feeling stressed about it.  The IP chemo was so hard on us both, and we have been concerned about what treatments might be available if I do have a recurrence.  Now I see that there are going to be options, but I am worried anyway; I had been feeling so much better until Jan., then the IBS episodes started again, and with the exception of the horrible 3 litres of ascites fluid in my abdomen just before I was DXed, I feel just about how I did when I was DXed.  I guess I'm just scared and looking for some support from others who have been here.  Thanks for listening.

[Jatoo]

Hello Fiana,

It is great to be hearing from you again. Both Avastin and MORab 003 are monoclonal antibodies. If the mechanism of MORab is the same or similar to Avastin which inhibits angiogenesis ( stops tumor growth ) then your mom should be in good hands. By the mere fact that they are already in phase II is a very good sign for everybody. It means more are more biologic drugs (which generally are not toxic to blood counts: WBC, RBC, platelets, etc.) are available to prevent if not lengthen recurrence.

All the best for your mom,

Jatoo

[Hazel30]

Hi there.  My Mom is on the trial for MORAB 003.  You can go to www.clinicaltrials.gov and type it in the search area and select the second one down.  The study is to see if this bio agent can delay recurrences weather its a month, 6 months or a year.  If it can help women then its great.  My Mom is doing fantastic on it.  She has 4 more treatments left and I hope and pray that this will delay her remission for a long while.  She works and does the every day things.  I hope that these bio agents are the future treatment for all people that are dealing with cancer.  I know they are looking for particular personal history as far as chemo goes but thats all writen in the trial information.  Best of Luck to You

[Jatoo]

Hello and thanks for posting. You are probably one of the very few that uses Avastin here besides my wife. She has also been on a continuous "chemo" since 2005 (almost two years now). As you may have noticed, she uses Avastin with Gemzar (reduce dose) and CA 125 down from 500 to 74.

Ultimately I would like her to stop Gemzar ( which is cytotoxic -harsh on the blood counts like Taxol) and just use Avastin. Now Avastin may not be enough, although it has produced complete remission on its own as a result of a clinical trial. On the other forum that I go, a lot of women uses Avastin and more would want to use it if not for insurance. Many states are now covering Avastin through medicare and I have seen Aetna is also covering it, at least as what one patient mentioned.

The other promising drug which is not a "chemo" drug is Sorafenib and also lately VEGF trap. While Avastin is a monoclonal antibody, Sorafenib is a kinase inhibitor but both are biologic drugs that prevents angiogenesis (starving of the tumor in simple words and not forming new ones). When both Avastin and Sorafenib were combined the result was tremendous. It is now on phase II or III clinical trial with NCI. Both Avastin and Sorafenib are FDA approved but for other cancers. So they can be used "off-label". And this means once my wife scans and CA 125 will be better I would recommend to switch Gemzar to Sorafenib (taken in pill form). And that means we are finally out of "chemo" and its toxicity.

Please keep on posting to exchange some data and to learn from each other.

Thank you,
Jatoo

[dot-to-dot]

I am 46 years old and was diagnosed when I was 44 with stage IIIc OVCA. Since then, I have had continuous chemo.   During this time and CT scans that I have had do not "show" any cancer, but my CA125 is just now to 16.  So we (my doctor at Ohio State U. - James Cancer Center) have been treating a number.  I was wondering what drug or antibody that your mother has been using.  I have had 8 rounds of Taxol and Avastin most recently which seemed to work until the last round when my CA125 went from 10 to 16.  Ten is the lowest it has been and like I said it has taken me nearly 2 years to get there.  But, even though I am young, I just think my body can't take much more chemo.  I just saw a doctor at Sloan-Kettering in NYC and said that he thought my doctor need to give me a rest from the taxol, perhaps continue the Avastin a little even if my numbers go up which they most likely will.  I just thought whatever your mother was getting could be something I could use.

Thanks,
dot-to-dot

[Hazel30]

Hi Ang,  I too have followed your posts for the past few months.  I just want to share my Moms story with you and tell you that even if she may be going through a recurrence there is still MUCH hope as Jatoo stated.  Although I hope that is not your Moms case.  My Mom finished her first line of treatment in May 06.  After 9 months her ca-125 began to rise, not double though.  It kept going up 6-7 points every months.  Her lowest being 3.  She had absolutely no symptoms at all, works full time and feels great.  Her CT scan was almost clear except slightly enlarged lymph node that was still in normal size range.  So her gyn/oncol recommended a clinical trial for a biological agent which is in study to delay recurrences in non symptomatic women that are only expiriencing a rise in the ca-125.  Remember this is not chemo just a biological agent which is antibodies.  Its for 9 weeks once a week she is in her 6th week and her recent ca-125 test showed that her ca-125 has slowed down alot only at 52.  She has 4 treatments left and hopefuly that will put her back in normal range.  So my point is that there are many option out there especialy being that your mom is NOT platinum resistant is a BIG plus.  She has many options.  Keep us posted and try not to stress your self out.  I know how it is I went through it and still do every time we get her blood work results.

[baguba]

Hi Ang~

I appreciate how concerned you are about your Mom, but as the other posts said, plesae don't place undue stress on yourself until you know if there is in fact a problem.  I can only share my experience with you and hope it will help.  I did recur last May after almost 5 years, so had 6 rds. of taxol/carbo.  My CA125 was low from pre-surgery (22), but went up to 100 after surgery, then slowly crept down from 15 to 4.3 in February, while I am on a years' maint. program of Taxol only.  In March it went up to 8.1 (which is almost doubled, yet "normal"), but for me is an indicator becasue it is what raised the red flag for my recurrence.  I waited anxiously for the entire month of March and until this past Tuesday when another CA125 was drawn, and it had gone back down to 6 again. I have a CT scan scheduled for May 3, but my onc. does not seem worried at all. She said we women will drive ourselves crazy over this....and she is so right!    It's a very nerve racking, crazy roller coaster we're on, but this test is so sensitive. Please keep in mind that anything can elevate it.  If your mom's scans are clear and she is feeling well, perhaps this is just where here CA 125 level is going to stablizie at; and if not, please remember, as Jatoo, indicated, there are so many, many options out there.  I wish you all the best, and will keep you and your Mom in my prayers.  Let us know how she does when her results come back.  God Bless!  Judie :)

[gah_70]

Hi Ang,

Not knowing all the specifics of your mom's dx, I can only tell you about my story.  I was dx in August '05 w/stage IIIC.  Had surgery, optimal debulking, and 6 standard treatments of chemo.  Presurgery, my CA125 was 3053.  After surgery, it was 101, and fell to 15 after chemo.  However, it has been on the rise since last September (my doctor uses a different scale for testing CA125 - on his, 0-20 is normal).  Last month, it had risen to 26, so I was scheduled for a CT to determine if I was recurring.  Good news is that I am not.  I had kindey stones and gallstones, however.  I asked my Oncologist if this could cause a rise in the CA125 since it is so sensitive, and his honest answer was, "I just don't know."  

Does your mom seem to be having any other symptoms?   I know it is much easier said than done to not worry, but until you get the results back next week, no need to put undue stress on yourself.  I know how it is though.  The waiting is the worst.  Just keep in mind there are other things that can affect the CA125, so even if it does come back high, that is not a definite sign the cancer has returned.  

Best wishes to you both.  Please let us know what she finds out.

Gail :)

[Jatoo]

Hello. Somehow worry will always be there. It is a question of how we face life.

But just to ease your mind: it is excellent that your mom had no recurrence within two(2) years. My wife recurred in three months making her platinum resistant. That means your mom can always go back to CarboTaxol which is an excellent combo for non-platinum resistant patients. And then you have others like Taxotere, Cisplatin, weekly Taxol, weekly Carbo and so on. She can also go to 2nd cytoreduction surgery which can put her back on remission since it has been two years. Then you have Doxil, Topotecan, Gemzar, etc. And then most of all the very promising biologic drugs.

It also depends how your mom is feeling right now. She may need a PETCT scan to check whether there is cancer activity. But we are jumping ahead since it would depend whether her next CA 125 will double. But then as what I told you, she has so many options to get back on remission. I think right now we are getting close to a stage where OvCA can be considered a chronic disease and not life-threatening.

I hope this helps.

Jatoo