Follow up from the follow up visit Nov 12

The surgeon and I agreed that I was not ready to go back to work and should defer my return until Dec 1. More importantly, he informed me he wants to start chemotherapy next Tuesday Nov 18. That is several weeks sooner than I anticipated and I will have to scramble to find some folks who can drive me back and forth to Gainesville for chem on Tuesdays and again on Fridays for labs since i can't drive myself yet. the chemo will consist of 2 IV drugs that are the same or very similar to the 2 that formed the back bone of my treatment before, Carboplatin and Taxol. The total course will consist of 6 cycles each 3 weeks in duration. But the new thing is that because this was one isolated recurrence with all the other biopsies completely clean, he wants to consider throwing in a 5 week course of radiation therapy after the 3rd cycle of chemo. This is not standard but is occasionally done. the risk is that radiation of the gut which is hard to avoid if you irradiate the abdomen can lead to long term complications resulting in diarrhea, nausea, vomiting and malnutrition after 10 or more years (or did in the early days). But RT has improved over the decades and can now target better and minimize side effects. The potential pay off is the possibility that you may totally ablate the tumor cells, leading essentially to cure. I am leerly of RT but leaning toward thinking the possibility of outcome may justify the risk. My doc presented this proposal to his local tumor board today and apparently they favored it. He wants to also consult colleagues at MD Anderson and Cleveland clinic. I apprecaite his caution and am intersted to hear what those consultants advise. Stay tuned. Anyone planning to come this way who wants to drive me to a chemo in Gainesville on a Tuesday or a lab draw on Friday just call me with the date and I will put you on the calendar! Louisa

No surprises

Surgery Oct 28 found recurrent ovarian cancer, but isloated apparently to one single spot. This is good news. I will have to go through chemo again but the prognosis for chemo leading to another long term remission is excellent! I am very pleased. My wonderful cousins Jane and Bruce Greyson came down from VA to bring me home, set me up here and take care of me, Balsam and the household for the first week, then headed back to VA today leaving a very well stocked fridge and freezer. This was much easier the second time around. I will know more after the follow up visit on Nov 12 but for now Balsam and I are content and well cared for at home.

Here we go again

I am reactivating this blog because, as most of you know, I am going back to surgery on Tuesday Oct 27. I have been most fortunate and done unbelievably well for about 5 years, but I have a little cyst that has been slowly growing in my pelvic regions for about a year now. The only way to figure out if it amounts to some that sends me back to chemo or amounts to nothing is to go in and take it out and look. To be perfectly honest the idea of surgery is not nearly as exciting and fun the second time around. So that is what will happen. I know I have done a lousy and erratic job of updating my friends about this upcoming event, so this may take some of you by surprise. Thanks for supporting me anyway. This time the surgery will be at NE GA Medical Center in Gainesville, GA so I can stay with the same medical group that handled my chemo and has followed me along. A friend (Jessie) will take me up Monday night and stay until I am out from under anesthesia. Another friend who is retired (Jan) will come to visit on Wednesday. My cousins (Jane and Bruce) will arrive Thursday and bring me home and stay until I can operate on my own. So thanks for your concern - I am good and I have the support I need. Hope you are well. Louisa

3.5 year post chemo follow up

Today I had my 6 month followup, which marks 3 and a half years since the end of standard chemotherapy. Because I packed the CT and exam into the same day, the official CT reading was not back yet. But reviewing it with my doc, the usual ambiguities apply but the exam was good. Last CA-125 was 2 months ago and still hanging at 5.6 (anything below about 30 is within normal limits). Next CT and exam in two months - which puts them in December in between my birthday and Christmas. What a busy month!

April 11, 2013 - last every 3 month follow up

Today I again had a CT scan, physical exam and CA-125 blood test as part of my last routinely schedule every 3 month follow up exam. This marks 3 years from the end of the platinum (routine) chemotherapy, and 2 years since the end of the investigational Avastin therapy. All results were clean! CT and exam unchanged, CA-125 remains 5!!!! This means my follow up drops to half - an exam, blood test and CT every 6 months for the next two years. I still have my port, which needs to be flushed every month or, when it fails to flush easily like today, every 2 weeks. But if that becomes an inconvenience or limiting for a job, the doc says we can consider taking it out. (probably unless there are problems it would stay in place for another 2 years or more). So that is all great news! And means that now I have to get serious about losing all the chemo weight instead of, whenever confronted by chocolate, just deciding it does not matter because what if I pass up this perfectly good chance to eat chocolate and then discover at my next follow up visit that my cancer is back? Well it was a good excuse while it lasted.

Next to last highest risk period check up Jan 3

Still a clean bill of health. Doc says recurrence almost univerisally within the first 3 years after finishing platiunum based chemo. For me that will end mid-late April. So only one more follow up during the highest risk period for recurrence, then follow up drops to every 6 months. Fingers crossed.

Most recent 3 months follow yesterday was good

In fact it was excellent. Physical exam with no signs of recurrence of disease. Blood test (CA-125) was bouncing around 4 to 5 to 3 last 2 measures. Normal is anything less than, I forget, but somewhere around 30. Next exam in October with CT exam. After that January 2013. After that April 2013 at which point I will have officially made it out long enough that my follow up exams frequency will drop to just once every 6 months because my risk of recurrence will have gone down.

So far so good. Current recovery goal is to once again meet the PHS fitness requirements. Next test scheduled for end of June. Ironically at the moment I can make the push up and side bridge tests but probably won't quite be able to meet the cardio requirement. (or the weight exam - which may be interrelated). Well - I can always try again in September.

CA-125 associated with March 2012 exam normal

CA-125 from 2 year follow up exam last March 28 = 7. Which remains below baseline. So that is good.

Follow up Exam one year after completion of trial

Wednesday March 28,2012 I had my one year follow up exam after completion of the investigational chemotherapy trial i was enrolled in, which was a 2 year follow up after completion of the standard chemotherapy. CT scan and exam were both completely clean. YEAH!!!

The blood test CA-125 is still pending because we forgot to draw it in advance, but I fully expect it will also be clean.

I also had a longer discussion with my doctor to answer the following questions:
What is the curve of the relapse rate? Rising over time? Dropping over time? Stable over time?
Answer: Highest risk of relapse is in the first 3 years after chemo.

What is the starting point for counting time out?
Answer: the end of standard chemotherapy (end of platinum drug chemo).

So since I completed my platinum chemo in April 2010 i am now 2 years out and still with a clean bill of health. One year more to go before the chance of relapse drops even lower.

To celebrate I had a wonderful one week visit from college friend Rosa Crocker during which we trooped over much of the Western NC mountains. And tomorrow I depart for Omaha Nebraska where I will watch the largest crane migration in the world (sandhill cranes) and then celebrate Easter with Susan Thomas and Sherri Buss - two more college friends who visited Atlanta this time last year to celebrate the end of my chemo. and the following weekend to Oklahoma to see my neice Emily dance in the last ballet of her college career.

Progress on my list of things I have to accomplish before I fully relax continues - the only major thing left on the list is getting all my paperwork at home organized optimally. And a visit with my architect Monday showed progress on the design for the house on the lot in Hayesville NC.

I am looking forward to hosting both my brothers and sister-in-laws the following weekend for the party celebrating the wedding of my first nephew, Judson Cowan and the lovely Blair Hume, which occured in Paris France on March 5.

It is one of those lovely times when life is just going well. I hope your springs are all going as nicely.

CA-125 associated with Dec 22 follow up exam

CA-125 = 5 pretty much steady state with my past values of 9 - 4 and way below the cut off that divides normal from elevated.

So all results from dec 22 exam are in and are good. YEAH!!!