Update on my mom.

ovarian_support

I haven’t had time to get on in a while and I thought this would be a good opportunity to post an update.  My mother is now in a phase II clinical trial to measure the effects of an experimental immune enhancing drug or placebo vs Doxil.  The study is double blind, but given the fact that 4 hours after receiving the experimental injection my mother became chilled, nauseous and started shaking uncontrollably the study director at the hospital says she is 90% sure that she is getting the experimental drug.  She did have a serious complication, plural effusion, which was not listed amongst the possible side effects.  Her blood oxygen levels were down to the upper 80’s and she was gasping for breath just walking from one room to another.  The fluid was drained from her lungs, a liter on each side.  The doctor is not sure if this is related to the drug or if it was something that was going to happen anyway as her cancer has spread to the plural cavity of her lungs.  However, the fluid did buildup during her first reaction and it seems very coincidental to have happened at the same time.  She has had mild plural effusion since but nothing that needed to be drained.

  The protocol is that she gets the effusion of Doxil once every four weeks.  Then three days later she is given her first injection of the course and receives that once a week for three weeks with one week off.  My mother has completed the first three rounds of the study and has taken her CT scan to determine if the drugs are working and she can remain on the study.  The scan showed that she had a significant reduction in mass in most of her tumor sites.  Only one had grown but only marginally. 

                After her reoccurrence she was placed on Gemzar/Taxotere with her CA-125 levels in the 900’s after four weeks on that treatment her levels dropped to the upper 200’s and then held stable.  Due to her doctor being out of town for her last three appointments the protocol was not changed.  Her CT scan showed that she had progressed from Stage III to Stage IV with lesions around her liver, stomach and lungs, but not in any of the organs.  We then sought a second opinion with another doctor at another hospital who recommended the clinical trial which her first doctor agreed was a good option as Doxil was unavailable to him.  Her CA-125 levels at the start of the trial were, 1247 on 3/26, 1685 on 4/17, 228 on 5/14, 2312 on 5/27, and 3042 on 6/24.  Due to her increase and CA-125 levels as well as the increase in mass of one of her tumors, her new doctor said that she had mixed results and that we would retest next month to see if the numbers and mass have gone down.  If so then she is out of the trial. 

                I am worried that she may be prematurely removed from the trial.  I had read a post from a woman who was one the phase I version of the trial, felt it was working and was removed from the trial because it looked as though her tumors had grown.  It took a PET scan to show that the tumors seen on the CT scan were partially dead; but by then she had started another program and could not go back.  My aunt also said that she heard that CT scans do not take the full picture and if a tumor decreases in a certain manner it can still seem the same size on the scan.  Also, I had read that dying cancer cells release the protein that is measured in the CA-125 levels, but I haven’t been able to find that article again and her doctor had not heard of it; so I am wondering if it wasn’t just one of those unfounded ‘facts’ found on the internet that is best ignored.  Posts here and on other sites from women who were on Doxil showed varying responses in CA-125 levels and further research suggests that it isn’t the best way to measure response to Doxil, I was wondering if anyone had any thoughts on that.

                So far the only side effect she has had is shortness of breath.  She is scheduled to see a pulmonologist, as the CT scan does not show any reason why she would feel short of breath.  Her SP02 is hit and miss, sometimes 100 sometimes 95, sometimes lower but that is on the meter we bought for home which can’t really be called reliable.

 

  Thank you everybody for your advice and how helpful you all are.  It is really a relief that there are forums like this to reach out to.

scatsm

Ovarian_support

When I was originally diagnosed my ca125 was 1800. After the first round of chemo it went up to 2200. I was told by my gyn/onc that the increase was due to the tumors dying and releasing the protein that measures the ca125...so, I think that rumor might be true! I hope so, and hope that your mom has good news next time.

Susan

seatown

My CA 125 results were similar

Thank you for posting about your mom. I know next to nothing about trials but am very interested because 2 different oncologists have predicted them for my (distant?) future. Just wanted to confirm that I had similar CA 125 results as Susan when I started chemo. When 1st measured 2 yrs ago, my CA 125 was in the high 2000s--can't recall the exact number. After initial chemo, it climbed to the low 3000s, & I was told something similar. Can't recall his words exactly, by my primary oncologist said something like "Cancer cells expending their last energy before being destroyed." From that point it has always gone steadily down with chemo, which I've been on for most of the last 2 yrs.

FYI, I have primary peritoneal cancer, which is treated the same as ovarian cancer. I've recorded my cancer journey & treatment at www.CaringBridge.org/visit/CaroleSeaton

Best wishes to your mom and you.

Carole

ovarian_support

Thank You

Thank you both, I knew I wasn't crazy and I remember thinking when I first read about rising CA-125 levels that it seemed to make sense.  My mom was very grateful to hear that you had both heard similar things from your own doctors.  Changing doctors is stressful for her I think.  I knew it's stressful for me!