CA125 keeps rising, running out of options

[tgren64]

My wife was diagnosed with Stage3C ovarian cancer in 2006.  She had surgery to remove her ovaries & debulking.  Then 6 treatments with Taxol/Carboplatin and her CA125 continued to drop.  After the 6 treatments the doctor declared her in remission.  They monitored her CA125 counts and then after six months the numbers started going up again.  They did a CT scan and determined the cancer had returned.  She had another surgery in May 2007 to remove her uterous, a section of bowel, and debulking.  Did chemo again for the 6 treatments of Taxol/Carbo but the CA125 didn't get as low as they wanted.  So the doctor suggested "maintenance" chemo and watch the CA125 count.  Over 2008 they have given, Doxil (caused bad reaction to her skin), then Topotecan.  The CA125 continued to rise.  Did a CT scan in July 2008 and noticed dark shaded areas on her liver.  Switched to Gemzar.  Her CA125 count reach 1839 and they tried to combine Gemzar & carboplatin.  The CA125 finally dropped a little to 1678, but the next Gemzar/carbo treatment she had an allergic reaction to the carbo and they had to stop it.  They continued with the Gemzar and tried to add cisplatin.  But again she had a reaction to the cisplatin shortly after they started giving it.  So now the doctor is giving Taxol by itself.  He talked with us privately and said since she can't tolerate the platinum-based chemo, there is not much chance of curing the cancer.  He suggested making some happy memories and enjoying the holidays.  Her CA125 count for this week had risen again to it's highest level of 2195.

So, I guess my questions for this forum, has anyone had similar experience?  We have friends & family suggesting getting second options, going to other medical centers, trying herbs & vitamins, etc.  My wife's doctor is already a specialist in Gynocologic Oncology and other people usually go to him for their "second opinion".  She has been through so much pain & struggle over these last 2-1/2 years.  What are your expiences that might help us out?

Thank you.

[crecco]

Lori,
  The best way to recieve answers is to start a new post. When you get to the forum, start at the very top an click on the green box that says "post a question" Then type out the question that you have. You have posted in the middle of another post and are not as likely to recieve the help that you would if you were to start your own post.Please try that.
  I wish you luck.
  Chris

[dawnlyn]

Since you live in Michigan I thought I would mention the Cleveland Clinic.  I have attached a link regarding the clinic and the treatment RFA that Survivor Susie mentions above.
You are in my thoughts and prayers.
Love,
Dawnlyn


http://www.****.***

[manneca]

You are in a great area for medical care in general. Duke, UNC, Wake Forest all have excellent medical facilities. I heard the best gyn/onc docs from Duke just moved to UNC. Give them a call. I can't imagine that you would have a problem unless you don't have insurance.

I'd contact UNC first, then Duke. My sister lives in Asheboro and her friend had stage 3 ovarian and went immediately to Duke and they looked at her almost the same day.

My thoughts are with you.

Make sure you get an gynecologicical oncologist.

[Lori1103]

Doctor's just found a large ovarian cyst.  11cm. at one end and 3cm at the other end.  It's oblong.  They believe it is cancer.  I'm having a hard time finding a doctor to take my case and admit me for surgery.  Who should I contact?  I live in the Raleigh, NC area.  Even my own gyn won't take me as a patient.  A urologist found the cyst.  How do I locate good cancer centers/hospitals in my area?

[crecco]

Yes seek another opinion!  There are many other drugs out there that can be tried for your wife. And the radiofrequncy ablation is a very good option for cancer that shows up in the liver. It is a very easy procedure with little to no pain and can be done several times as it does not damage healthy tissue.
  While there is nothing wrong with making happy memories, make sure that she has the chance to make them for a long time.
  Might I suggest Chicago in your search for a bigger cancer center. (There is also a Cancer Treatment Center of America very close to there)
   Chris

[momofsandj]

I think you might have a lawsuit against the first doctor if you wanted to pursue it -- standard procedure unless you told the doctor that you wanted to have children appears to be to remove everything --and he could have either come out during the surgery or sent someone to ask you what your wife would have wanted him to do before he closed her up ----- but in fact, that wouldn't have stopped the recurrence so I don't know if it's worth the aggrevation.

There are a lot of us out there that are no longer platin sensitive and so it can't be used -- there are still plenty of drugs to try if the taxol doesn't work.  Again, Navelbine, Avastin, and others are there.  If your doctor isn't knowledgeable about it, make sure you take your wife to a medical oncologist for a second opinion.  The med oncs are sometimes more up on the new treatment options than the gyn onc.  Also, it may be worth the trip to one of the major cancer centers like Dana Farber, Mass General, or MD Anderson in Texas for a consult.  You can't just stop if the taxol doesn't work ---

I had really awful reactions to the Doxil too -- the worst my doctor had ever seen.  I'm on topo now and hope to heck it works because my platelets get so beaten up I can't even try Gemzar.  I am also 3C ---- Doc said next up is the Avastin.

Good luck to you and your wife and keep us posted (no pun intended)

Jeanne

[tgren64]

Thank you all for your comments and suggestions.  I can clarify one issue.  My wife's first surgery was at Univ. of Michigan Hospital.  Her doctor decided not to remove her uterous during the surgery, we did not know until a couple days later.  His reasoning was that there was no sign of cancer on the uterous.  It was "an innocent bystander".  He said it was a "placeholder" to help keep intestines in place.  He determined to leave it alone and concentrate on debulking.  We had to switch doctors/hospitals a year later for the second surgery due to a change in my company's insurance.  The second doctor (her current doctor) expressed surprise that they didn't take out the uterous during the first surgery.  But, he said to second-guess the 1st doctor would do no good he had to deal with the current situation, he removed it during the second surgery.  

My wife had another treatment of Taxol today.  We are hopeful that it will bring her CA125 count down.  The most recent CA125 count was 2195.  They will take another blood test on December 3rd.

[momofsandj]

I agree wholeheartedly with Ronni and Sharon ----- we all need to remember to have good times and make happy memories when going through all this because eventually they will be just memories for those we leave behind.  But that doesn't mean that we are leaving any time soon --- No matter how good you think your doctor is, he can't be that good if a full hysterectomy wasn't done unless your wife told him not to do it.  There are so many new drugs to try that are not platin based that haven't been tried for your wife that I can't believe he would say that.  There are clinical trials that she might qualify for that could possibly help ---- Avastin is ovarian cancer's reply to Retuxin for lymphoma; patupilone is being tried, there's navelbine which has been used in lung cancer with some luck in ovarian, and even dastanib, a leukemia drug is in trials for ovarian.

There is no way you should listen to this guy -- RUN RUN RUN to a major cancer center or another gyn/onc or even a good medical oncologist ---

DO NOT GIVE UP at least not yet --- there's too much hope to give up now

Good luck and be assertive --- MD doesn't mean GOD

Jeanne

[survivor_susie]

*Please* do research on a new procedure called radiofrequency ablation.  It is for ovarian cancer which has spread to the liver.  Successfully kills the cancer while leaving the liver alone.
Best of luck!

[bohan54]

Don't forget to work on making those happy memories while you're seeking other opinions.
Sharon

[Mags711]

I also would be as aggressive as possible trying to find another doctor to give another opinion.  I know that chemo is terribly exhausting and it is hard to find the strength to go on, but you are the only one that can determine when you are finished.  I take alot of supplements, exercise, meditate and employ various other therapies to strengthen my physical body and emotional spirit.  I will keep you in my prayers and send positive energy your way.  Maggie

[JC145]

I TOTALLY AGREE WITH RONNI .... GET ANOTHER OPINION!  Will keep you and the family in my prayers. Judy

[vegas2cr]

Run do not walk to seek a second or even third opinion... There are many other chemo options to try.. Avastin is just one off the top of my head.. I do not understand how they could not remove her uterus the first time.  Debulking surgery is to remove uterus cervix fallopian tubes ovaries omentum apron and even your appendix to try and ensure that no cancer is left behind.. I am assuming she was never optimally debulked...

Please please seek another opinion.  Don't know where you live but hopefully you can go to a large name medical center...

In the meantime you will be in my prayers... good luck.. Ronni