USPC Reoccurance Need Your Help

This discussion board has been so encouraging and helpful. I would really appreciate your thoughts and suggestions. When the doctor looks at you and says "he's out of bullets" and that additional chemo may not provide any more benefit, that he cannot tell you if you have 3 mos, 6 mos, or 9 mos (not years) left, it's just hard. I don't want to accept it and as long as my mom is up for continuing the fight, we will support her. My mom has been blessed with a long life and I keep holding onto the fact that it is our God who numbers our days...not the doctor. If my mom feels "OK" she's willing to continue. When she feels lousy...she'd rather move on to the next world. I don't blame her. Here is her journey. Again, I would appreciate your thoughts and experiences as we are unsure of the next step.

My mom was diagnosed in late 2008 with UPSC. She had a hysterectomy and 2 treatments of Carbo/Taxol. In January or February of 2009 she suffered from a pneumonia which required surgery (to remove empyema or pus on the lungs). We nearly lost her. At that time, my mom decided that she didn't want anymore chemo because her CT scan was clear and she nearly died of complications from the pneumonia. We didn't realize the gravity and tenacity of the disease.

All was well for nearly two years. Then, in February 2011, she had abdominal pain. A CT scan confirmed mesenteric infiltration. My mom was again placed on Carbo/Taxol and seemed to be responding as her Ca=125 was coming down (from 260s to 80s I think). She had problems with low platelets and often the treatments were delayed. Finally, sometime in August 2009, they dropped the Carbo and just gave my mom Taxol. During her treatments with Taxol, she had a consult with a Hem-Onc doctor. Her platelets were low (she had a problem with low platelets even before chemo). She was started on Nplat shots which she received weekly to help stimulate platelet production. This seemed to work for her and she missed less treatments. Her Ca 125 was steady, but in mid November of 2009, it doubled and my mom's belly filled with fluid (ascites). She had a paracenteis which confirmed, of course, metastatic disease.

Since mid November, my mom's condition has deteriorated. The doctor started her on Adriamycin (doxorubicin?) in Dec. 2011. After 3 rounds, her ascites has been kept in check, although she still has pockets around liver and in mesenteric fat. Her most recent CT scan showed an new and enlarged lymph node in the right iliac chain. It is pressing on her ureter so she is in danger of losing her right kidney. She is to have a stent placed in the ureter to open up the tube and hopefully relieve some symptoms. So, there is no significant change, after 3 rounds of Adriamycin, in the CA 125. With the new findings of an enlarged lymph node. The doctor has deemed this 3 chemo unsuccessful and, that's when he told us he's "out of bullets"....we can go on hospice care, try chemo...his suggestion was a Gem/carbo combination, but there may be no benefit as far as longevity is concerned.

My mom has gone from 130 lbs to who knows what...(she doesn't like to talk about it now)...but I can see her bones and outline of her muscles...she must be less than 100 lbs. She wasn't eating initially because of fluid on the belly, then no appetite (started appetite stimulants twice a day), constipation has been an ongoing issue as well as a feeling of pressure in the upper abdomen. She has tired of many of the oral supplements. I saw on one CT that she has a small hiatal hernia. The doctor gave us Protonix and Reglan to try. I think she is feeling a little better on these drugs (protonix). I have ordered Scandishakes online as she seems to tolerate those, but she takes half a package which defeats the purpose of having a 600 cal shake in 8 oz! We simply cannot make her eat. She knows what she needs to do, but implementing it is something else!

So, my mom is just taking this in stride it seems. I think she is preparing herself for more chemo. I really would like some reassurance that the Gem/carbo is the best choice for her. Back in 2008, her original tumor was sent to OncoTech. It came back weakly Her2 positive (+2), 70% ki-67 3+, 80% p53 gene product 3 +, and little or no estrogen/progesterone sensitivity, no MDR-1 detected. I have seen studies from Yale that seem to suggest that Herceptin and other monoclonal antibodies may be useful. But, my mom's doctor never mentioned use of Herceptin....maybe because she was not strongly positive or the expense? What about Avistan?
I tried to get chemo sensitivity profiling through "rational therapuetics" and weisenthal cancer group, but there is a glitch in Florida. Florida labs/hospitals cannot send tissue/fluid to labs outside the state of FL unless those labs are licensed by the state of FL (archaic with the CLEA laws), so the chance I had with the previous ascites fluid was lost. I have since contacted the Director of Labs at my mom's hospital facility and have found that we can send the specimen to the dr. office and then they can send direct out of state....red tape. She doesn't have enough ascites fluid to drain off now and the doctor told me we couldn't remove the lymph node. I didn't think about the needle aspiration. It really is not the quantity of tissue or fluid the lab receives but the quality...more cancer cells the better for testing.

It just seems like they are on the cusp of making a big break through with this disease. If we can all hang in there long enough, there has got to be a cure or some drug combo that will keep it in remission.

Any thoughts? Thank you for allowing me to get things off my chest!

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