Saturday, September 17, 2011

Bad News, Good News

Even sweet doggies get IVs
Yesterday my gyn/onc and I chatted a bit before I had my third infusion in this course of treatment for recurrent ovarian cancer. He confirmed what I expected--that Cedars Sinai had not received any Doxil and did not know when they would. He said that their pharmacist was dealing with multiple vendors now in an effort to secure some but no success. However, he thought some of the smaller treatment clinics may be getting some small amounts of Doxil. Oddly enough that made me feel good given that many times I have heard from sisters that they could not get either Taxol or platinum drugs at the smaller infusion centers.

So it looks like I will continue my treatment with only carboplatin. The good news is that it is really knocking down my CA 125 numbers. After two infusions I have dropped from 100 to 15, which is almost in my baseline remission zone, which is 8-12. The doctor is optimistic that I will only need one more infusion after the one I got yesterday.

My only nagging concern is that, as Dr. Li confirmed, studies show that average time in remission and overall survival  is better with a combination of Doxil and carboplatin than with Doxil alone. And the longer you are in remission, the more likely you will respond to carboplatin in the future (i.e. be carboplatin sensitive). So there may be some problem in the future for me because I missed Doxil this time but only time will tell whether I am in the average group or as Dr. Li says at the good end of the bell curve with a lengthy remission ahead of me.

Which leads me to a discussion of studies and numbers.  While I was looking for studies about the effects of Doxil in combination with carboplatin on remisssion and survival, I came across a few studies that had not seen in the past.  The first study sent my heart soaring because it said the average five year survival rate for my type and stage (initially IIIa) of ovarian cancer is 45%. (Another report said 41% which also made me feel ok).  I had read in the past survival rates in the 25-30% for my type and stage of cancer.  Hopefully these new stats mean treatments are getting better and hopefully the drug shortages will not cause the stats to decline again.

On the other hand, contrary to what my doctor had told me, my recurrence may mean my survival rate has dropped.  If I am reading these stage criteria correctly, the fact that my cancer has spread to my lymph nodes should mean I am now IIIc.  Staging is done during surgery but it would seem to me that now we know it has spread to the lymph nodes (which the doctor explained to my worried husband that it had nowhere else to go) should the stage not be IIIc?  Another question for the doctor. If I am IIIc, my survival rate just dropped to either 35% or 23%.  Ooops!

My doctor tells me not to look at the stats on the internet.  They are old and they are averages for a population.  They do not predict to the individual, i.e me.  Someone has to be out at the good end of the bell curve.   I know that the statistics do not tell me how long I will live.  I once taught college statistics and have a PhD in psychology which fully covered study design (so don't get me going on some of the medical studies I have cited here).  But it is hard not to feel like I have a five year expiration label on my forehead. No one knows for sure how much time one has.  In the meantime, we need to keep going to make sure that ovarian cancer is recognized as the serious problem it is and that drug shortages are remedied.

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