Saturday, August 14, 2010

No evidence of residual disease & genetic testing results

My sister asked when I will know if I am in remission, and several of you have asked for updates.

At the moment, just over 9 months after surgery and more than 3 months after finishing the standard chemotherapy, I have no evidence of residual disease by physical exam, CT scan, or blood test (CA-125, which is not reliable for everyone but was elevated in me prior to surgery, less so but still high after surgery and before chemo, and has been in the normal and very low range very since). That is good news. That is, in fact, as good as it can get at this point.

I am still taking my investigational drug, Avastin, every 3 weeks through next February or so. I have developed high blood pressure as a result of the Avastin - a common and some times dangerous complication. But so far my blood pressure is adequately controlled with my medication, so I can continue the Avastin hopefully through the end of the intended course.

I had my most recent physical exam last Thursday (occur every 6 weeks), and will have the next set of lab tests (also occur every 6 weeks) and the next CT scan before this month is out. So all is good.

My energy, stamina and mental concentration continue to improve weekly, but are still not back to normal yet. The neuropathy (nerve damage from the chemotherapy that resulted in numbness, tingling and weakness in my feet and legs) has improved tremendously but still is not back to normal. It has improved enough for me to realize that I have a corn on one foot and probably a Morton's neuroma (a painful nerve condition) on the other that were not bothering me as long as my feet were numb - so recovery is a mixed blessing! I am not getting back to normal as fast as I would like, and it is harder and harder to tell, when I nap on a weekend day, whether that is evidence of wisely "listening to my body" or evidence of just being lazy. Good to be at a point where I have to worry about the difference again...

How long can I expect to continue to have no evidence of disease? Impossible to tell. And believe me, I have tried to find medical literature that will predict it for all sorts of reasons. Most recently my air conditioning went out this weekend and I have to decide between a short term investment of replacing an engine and condensor or a long term investment of replacing the whole system.

One study predicts an average of 10.4 months before recurrence among stage III and IV patients who got standard chemo, extended nearly a year longer by Avastin (I am stage III, but Stage III C, so close to stage IV). Another predicts an additional 2 years on average of disease free survival added by the investigational dosing I got on this investigational trial. Overall the statistics say 20-40% 5 year survival and about 10% 10 year. And if you get 10 years out without evidence of recurrent disease, I am not sure what that means with ovarian cancer, but I think you can think in terms of possibly a cure. Who knows. I have good reason to be optimistic that my experience may be predicted by the more optimistic statistics, but no way to know for sure.

I think I am going to replace the whole AC system and assume I am investing for the long run.

Since there have been at least 2 instances of ovarian cancer and another 2 of breast cancer among our extended family and I know some of you have been worrying about what it means for your own risk or that of your daughters, I decided to get tested for the BRCA1 and BRCA2 genes (the genes recognized to be associated with hereditary risk for ovarian and breast cancer). The good news is that my tests were entirely normal with no mutation detected. Does that absolutely garantee that there is no increased genetic risk for breast or ovarian cancer in our family? Well, no. There is always a possibility that there is a rare genetic risk not recognized by these tests (and not yet identified by science). But it makes it unlikely.

And it is also possible that others of you may have one of these mutations, even though I do not. If you really want to know your own risk, then you (or your mother) needs to be tested. But this suggests to me that there is likely no clear genetic risk that came through the Walker side of the family, which is the side shared by 3 of the 4 cases mentioned above. So my disease does not likely have ominous implications for anyone else.

On another note, last week 3 women asked me who cut my hair. It made me laugh. But grateful that I again have enough hair for people to actually mistake my style as a fashion choice, I optimistically dropped by my stylist to inquire how much longer it needs to get before he can do some intentional shaping. He told me to come back in another month or so...

I think I am going to keep it short. It feels great in this really hot weather and is awfully easy to manage.


  1. Louisa,
    I am thrilled to hear this great news! And even more happy to hear that you are taking an optimistic view by purchasing the new AC unit. You may be happy (or maybe a little bittersweet) to hear that Eda's last scientific paper on NK cells was just published in xenotransplantation. I was pleased to see that her technician and post-docs persevered to see the work through to a publication -- a due tribute to her scientific accomplishments.

    I will send as many positive thoughts your way as the mental airwaves can hold ; )

    Take care and keep working on getting your strength back -- those drugs take a nasty toll on your body!


  2. This is fabulous news, Louisa! I am delighted for you.