My Timeline (2009-2012)

Spring and Summer 2009: Everything is quiet. I feel very good and healthy, despite the cancer that’s inside me. I’ve definitely mastered the art of “Living” with this disease. I’m thankful that all scans, MRI’s and even a colonoscopy during this time came back looking good. There has been no progression of the disease now for over 24 months. It’s hard to not think I’m cured, but the reality of it is that the tumors are still there.

Sept 2009: Received results back for my routine bloodwork. Chromogranin A (CgA) came back with an unexpected increase since my last check from March. Doc is not concerned at this point, as it’s not a trend and all of my scans still show no signs of progression. Previous mark was 236, Sept results = 685. Have scheduled MRI and bloodwork follow-up for Dec 4. So we’ll see what happens then.

Dec 2009: MRI still shows no signs of growth. Chromagranin A was up again. Will continue to monitor

March 2010: Chromagranin A was up to 902. Next MRI is scheduled for early June. No pain or discomfort. Have increased exercise and improved diet.

April 2010: Began a treatment plan with a Wellness Chiropractor – first to relieve migraines that I had been experiencing, but I also immediately noticed a reduction in the number of flushing episodes, sometimes going without any in a given day. This has been unheard of for me up until now.

June 2010: MRI continues to show no signs of growth and symptoms are well controlled. Trying to follow a diet that is more organic and gluten free. When I follow this diet, I have drastically reduced the number of flushing episodes. Since symptoms are well controlled and we’ve had no growth for 3 years, decided to lower Sandostatin dosage from 30mg to 20mg.

January 2011: Back with Dr. Al Benson and Dr. Riad Salem at Northwestern University in Chicago, due to relocating to the city with my husband. Had an MRI, CgA and 5-HIAA checked. All come back the same – MRI shows no growth and CgA and 5-HIAA are elevated but not significantly over the prior check from Oct 2010. Happy with 20mg of Sando/month but would actually like to get off of it completely due to gallstones that have formed. I also am beginning to believe that my symptoms have improved more with my diet change than with the shot. There is a new report to indicate that Sando helps to prevent future tumor growth, but I don’t personally believe it, as I was on Sando for over a year (my first year) and had significant tumor growth during that time. I attribute the stall of my tumor growth to Theraspheres treatments, as that was when the tumors actually shrank and haven’t grown since.

Spring and Summer 2011: This summer was pretty uneventful medically (which is a good thing, right?) I did go through some times where I became tired of being a patient and just didn’t want to hassle with it anymore. But who doesn’t go through that after dealing with this for so many years. I took about a 3 month break from the Sando, and my symptoms and number remained the same. But decided (after numerous talks with a few different oncologists) that it wouldn’t be best to stay off of it forever. I can’t deny what my condition is and that the sandostatin is designed to treat it.

Fall 2011: Another quiet period medically, but more time was certainly spent contemplating what I want to do next. I attended the Carcinoid/NET patient conference that was in Indiana in September and heard Dr Woltering, Dr Boudreaux and other Carcinoid/NET specialists discuss current treatment options and their specific medical view point on how to treat the disease. Decided it was probably time to stop being so complacent with my own care and scheduled an appt for New Orleans in December

December 2011: After having several labs drawn and completing a series of scans from MRIs to Octreoscans, we went down to New Orleans to visit with the NET Program doctors and here their take on my condition. More details of this visit are described in my Jan 15 blog entry. Most notably NKA is at 190. Goal will be to reduce tumor load by 75% and bring that down through a liver cyto-reduction surgery and the use of new “nanoknife” technology.

January 26, 2012: Liver surgery was performed at Ochsner Hospital in New Orleans by Dr Philip Boudreaux and his amazing team. 37 tumors were removed from the liver, three were left in and were treated using nanoknife technology – thus reducing my tumor burden by over 90%! What is left is all confined to the liver and was difficult to remove surgically due to size and location. MIBG is a potential treatment that may be used on those in the future.

Spring & Summer 2012: A very slow healing process. I did return to work in March, but continued to experience “side-effects” related to the surgery. I had to continually remind myself that I had a HUGE surgery and that it would take my body time to heal completely. Although, my strength eventually came back, on various occasions I still experienced abdominal swelling and fluid collection in my abdomen. Couldn’t quite figure out why, but resulted in 3 seperate paracenthesis procedures to drain the fluid from my abdomen

May 2012: Had Octreoscan and MRI performed, and bloodmarkers checked. Visited with local oncology team at Northwestern, as well as Dr. Woltering and his team down in New Orleans. All were quite pleased with the bloodwork (CgA and other markers are now just barely higher than a regular person’s). The scans didn’t show any new progression of the disease, but are considerably more difficult to read due to the use of of chemo-gel during the surgery.

Sept 2012: Had 6 month post-surgery scans completed, and visited again with Northwestern team of docs and Ocshner (Dr Woltering) team of docs. As stated above, the use of chemo-gel during the surgery (which affects the quality of imaging) local radiologists interpreted my disease as progressing. However, with an additional CT scan and Octreoscan, both teams are now comfortable to state that my disease is NOT progressings. Labwork indicates the same. Interestingly – the CT scan also showed that my inferior vena cava (which runs through the liver) is now being compressed slightly by my liver (due to the way parts of it regenerated after the surgery). This is what has been causing my fluid build-up in my abdomen. Temporarily on diuretics, and may end up having a stent put in to help open it further.