I've pretty much not been on any treatment since my last dose of the immunotherapy on February 22. I so wish that it would have worked, but it didn't so on to the next one; Rubaca which I only took for 3 weeks since it was thought it was making me sick and ultimately ended with a hospital stay over Easter Weekend. It's hard to say if that was what was making me ill or if it was the tumor that is growing from outside of my stomach but pushing into my stomach. At that time I was actually having two different abdominal pains, one was from a radiation induced colitis, which has finally resolved after several rounds of Prednisone.
I decided that after that experience I needed a chemo break through my many travels over the past few months, which is exactly what my body and mind needed. It was a nice break too. Unfortunately I felt rather sick through most of it with horrible stomach pain after eating. A scan done in May showed the tumor had grown nearly 1 cm from early March to measure 3.1cm. From the looks of the CT, the barium swallow and the endoscopy that I had in early June, it seems like this is the culprit. However over the past few weeks I've felt pretty good with eating and rarely have pain. I'm not sure if it is because I've learned how to eat to not have pain, if the tumor has shrunk on it's own, or if the Rubaca is finally out of my system and the cause of my pain. Who knows, but whatever it was, I'll take no pain.
It was decided in May per Dr. Dan and other physicians at St. Lukes that surgery was my best option. However I met with a surgeon the day I returned from Hawaii and after seeing the results of the barium swallow and the endoscopy he felt the surgery was to risky because it would involve a surgery of the pancreas as well, because the tumor is backed up to the pancreas. The pictures show the tumor of the stomach opening into the duodenum (where the food goes from the stomach into the intestines.) I did ask the surgeon what happens if the tumor gets bigger and I can't digest my food. He told me he would consider surgery then or put a tube in where I could pass fluids. Um no, I'm a foodie and life without food would be miserable and unacceptable. How un-fun and un-cool it would be to go to lunch with my girlfriends and have to watch them eat delicious food while I sipped on my Ensure.
Dr. Dan had talked with Dr. P in Boston who proposed we try a once a day pill to block the estrogen that is being produced by the adrenal glands. It is thought that maybe the tumors are hormone related. This medicine is typically used in breast cancer treatment. I kept feeling like I needed to go to MD Anderson in Houston since I had talked to Kirts boss back in March who had ovc and went there with good results. Dr. Dan was in full support of another opinion as well. So I made the phone call and got an appointment June 30 with the director of gyn oncology who Dr. D actually happened to do her fellowship under.
MD Anderson and Mass General have both looked at my pathology slides. Mass General told me that this was a high grade tumor that was fast growing. MD Anderson disagrees and feels this is a low grade tumor that is slow growing and typically resistant to chemo, which would explain why I haven't seen any progress over the past 2 years (Yes it's been 2 years since I've had a recurrence).
I was super impressed with MD Anderson and Dr. S. My visit consisted of us all sitting around a table discussing my disease and my treatment. I didn't feel rushed (which I never have by any of my physicians) and I was given plenty of time to ask questions. Dr. S and her team also feel like the estrogen blocker was the way to go. I loved that at the end of my visit, even though we agreed that I can continue to have my scans and treatment by Dr. Dan or Dr D, that Dr. S told me I will always be her patient and she can see me or answer my questions at any time.
I started the Letrozole (estrogen blocker) 6 Days ago. I pretty much don't feel much different other than a few more aches and pains, which is a side effect. It's more like just feeling like I worked out a little too hard. Nothing I can't handle. They say it causes hot flashes, but I've only felt my face flush once for a few minutes.
The first week in October I will have another CT scan to see if the tumors are shrinking or staying the same size. I hope and pray for these results. If not there is another medicine group called a Mek Inhibitor that we can try.
The Thursday that I arrived for the Ovarian Cancer Retreat in NC I started having excruciating low back pain, the same pain I had from the tumor in my right posterior iliac crest that was radiated in March. Talk about disappointment. For 15 days I took pain meds nearly around the clock for some relief of pain. I couldn't get comfortable especially at night as the pain was worse with any position in bed. Miraculously I had no pain yesterday, with the exception of a little at night and today has been the same. Does this mean the Letrozole is already working? I hope so, but I also believe that Heavenly Father is listening to me and answered my pleadings to take my pain away or at least make it bearable.