Ovarian Cancer 2004 Recurrence, Liver, Ongoing
The Overview
My history with Granulosa Cell Cancer of the Ovary began in 1978. At that time I had a total hysterectomy. The cancer recurred in 1994, that time on the transverse colon, and surgery was done to remove the tumor, followed by 200 hours of chemotherapy. In Dec. 2003, 2 1/2 months after my husband's death, the cancer recurred. It was located behind the bladder and intestines and was removed surgically without disturbing any organs.
After this third recurrence, I found myself obsessed with "strategizing for the future." I felt it was time to sell my house and downsize. So I began work on reducing
the stuff in a 3 BR 2 car gar house. I don't care if I never see another garage sale or dumpster. I located a suitable mobile home and I moved June 5. My new home was halfway between my old house and real estate office, and the home of my long-time girlfriends who always seem to end up baby-sitting me when I get sick. I continued my real estate work with the co-worker who stepped in to help me in July 2003 when my husband got cancer. I thought I had things well arranged.
Just about the time I was getting settled and loving my new home, I began to get those same old OV cancer symptoms: distended abdomen, discomfort after eating with bloating, etc. I saw my ob/gyn/onc Aug. 5 just before I took off for a spontaneous visit to family in Michigan. (I found myself reaching out and grabbing joyful activities at the drop of a hat; my mentality was "life is too short.") After I returned home, a CT scan showed a tumor in/on my liver. A biopsy proved it to be the ovarian cancer. I was scheduled for a follow-up visit to decide treatment.
But the cancer didn't wait. There came another night of crisis, reminiscent of my previous experiences with GCT. I was out to dinner Sept. 29, and I got very sick. My girlfriends called an ambulance and we spent the better part of the night in ER. I was in excruciating pain (which continued for weeks afterward). It was a week before I could get in to see my cancer doc---a LONG week. He put me in the hospital for a couple of days to get the pain stabilized.
I have such a history with this Granulosa Cell Cancer (this is one you never get rid of if it has ruptured and "seeded" your abdomen; you just treat it as it reoccurs). My doc feels I have a better chance of getting extended quality life by doing chemo rather than trying to get it all by surgery. So I'm taking a course of six-hour IV drip every three weeks for six rounds. There are a lot of anti-nausea and other meds to counteract the chemo side effects. I'm losing my hair, so I'm dusting off all the hats and scarves from my 1994 chemo, and crocheting a few more hats. I'm staying with friends so they can keep an eye on me.
The Details
The sickness and pain that flattened me during this recurrence included chills, fevers to 103, nausea and vomiting, and abdominal pain, mainly in the upper abdomen and under the rib cage, pain to the touch and during breathing. This pain ranged 8 to 9 on a scale of 1 to 10, and Tylenol didn't budge it. Vicodin helped, if the dose was big enough and often.
I had several CT scans. The first one showed the tumor on the liver. From the size of the tumor, I feel it had been there last December while we were distracted trying to put out the fire of the tumor behind the bladder. I recalled that doctors had mentioned a "shadow" on my liver, even back several years ago. My next CT scan was a guided biopsy. The radiologist said the tumor was solid at the top, softer in the middle, and fluid at the bottom. He was able to take samples from all sections, and all proved the tumor to be Granulosa Cell Ovarian Cancer. Another CT scan showed two big areas of fluid build up. Yet another CT scan (very similar to the liver biopsy procedure) was done to put in a drain, with a plastic botttle about 6 inches long to collect the "pond scum" that was draining off. Doc said he was aiming to drain off only the one area--the one easier to reach--and hoped the other one might drain along with it. In theory, the more it drained, the less the pain. That drain was removed in about a week.
It seemed to take forever to get the pain under control. The doctor took me off Vicodin and put me on time-release morphine. The morphine made me sleepy all the time but didn't knock out all the pain. A schedule of Percocet kept the pain at bay, but it gave me such bad (and painful) constipation that the cure was no better than the disease. Eventually, after the first round of chemo, the pain was handled very well with only time-release morphine, which I think was perhaps in part because the chemo had shrunk the tumor enough to relieve some of that awful pain. I was very grateful to see that day, I can tell you. Three months after they had stabilized my pain with time-release morphine sulfate, I weaned myself off morphine (with Dr's approval). It took me from December 27 to January 5 to "get clean." The results were wonderful. The excruciating pain was all gone!
The Chemo
First Chemo, 27-Oct-04
On Monday I met with a nurse who oversees all the chemo infusions at UCI. Things have come a LONG way since my 200 hrs of chemo in 1994. She gave me booklets on both my chemos: carboplatin (paraplatin) and Taxol (paclitazel). These are published by Bristol-Myster Squibb Oncology in Princeton, NJ, and do a good job discussing side effects and what the patient can do before, during, and after chemo to lessen side effects. I received another high quality publication called "The Patient Active Guide to Living With Ovarian Cancer" provided by the Wellness Community in Washington, DC, and paid for by a grant from GlaxoSmithKline Oncology.
They put a port-a-cath in my chest and neck. I never heard of anyone getting two holes put in them for this purpose. Anyway, the port was still so sore that they used the old-fashioned IV in arm to administer chemo the next day. I had lots of anti-nausea, etc., meds and I felt quite good. The chemo nurse did tell me to hit these meds and "aids" tomorrow to handle expected side effects: Zofran (expensive!!!) and Decadron for delayed nausea and vomiting; Compazine and Ativan in two days for nausea; iron tablets 3/x/day for anemia; Colace and Senakot for constipation; 1 glass tonic water per day to help prevent leg muscle cramps; 8 glasses water per day; small frequent meals ("grazing," she called it) with emphasis on getting protein and calories; add 1 T dry milk to foods to boost protein; 2 rest periods each day; light exercise each day; LAUGH several times a day.
Chemo was Wed., and Thurs-Sat. were "so-so." Saturday night was a nightmare with vomiting, painful constipation, suffering with a headcold, and numbness in both hands. Pain levels were 8 & 9, but the night finally came to an end somehow or other. A couple of days later I was able to write this report:
The first few days after chemo I felt like I hit some slippery steps and bounced all the way down--on my head! Things are OH SO MUCH BETTER now. My cold is better, constipation is gone, and the vomiting has stopped (looking back, I think the nausea might have come from the iron and other strong meds I was taking, rather than just from the chemo). The dressing is off my port a cath and I got to take a shower. My hair began to fall out, so I chopped it off short. The biggest concern is that I've lost the feeling in both hands. The neuropathy dictated a change in chemo from Taxol to Taxotere, and this chemo required only a 3 hour drip. My energy level is good, although I sleep a lot. But BEST OF ALL--the excruciating pain I had in my abdomen has eased!! I can get by with just time-release morphine caplets every 12 hours, and I haven't had any "white knuckles and crying real tears" pain since last weekend. I am so grateful for that.
Fifteen days after chemo I remained active and felt quite good, but my hair was falling out with a vengeance. I collected many hats and scarves during my previous chemo and afterward, so I was ready. In preparation for my second chemo, the chemo nurse phoned me to review my various medications. And then she gave me the results of my blood tests. The CA 125 (which indicates cancer presence) had dropped from 72 to a normal 26!
My 2-4 rounds of chemo weren't bad, although I did have numb fingers and lost my taste buds for a week or so afterwards. On Dec. 11 I moved from my friends' house and back to my own home full-time. My chemo #5 was harder. Energy loss was fierce, my fingers were numb and it felt like somebody was pulling off my fingernails, I had rough spots and sores in my mouth and on my gums. I didn't know if I could hack #6 chemo. But then I got my hands on the book "Ovarian Cancer Your Guide to Taking Control By Kristine Conner & Lauren Langford." It gave me hope, and I took chemo #6, drinking almost a gallon of water that day, as suggested by the book, to attempt to alleviate side effects. I think the extra water did help a little.
My final chemo day was Feb. 9, 2005. My blood markers were CA 125 at 6 and Inhibin A at 1.9. A week after that two of my sisters came to visit me from the midwest, and we managed to do quite a few activities, although I had to rest a lot and nothing tasted right. I noticed that my bones and joints were aching a lot more than before chemo. March 7 more family came to visit, and the next day I noticed that my fingernails were discolored with purple "smudges." Two days later my nails were brown, and one of them was coming loose. I contacted the chemo nurse, who said it was a fungus and got me an Rx for a generic of Diflucan, as well as an cream called Clotrimazole. March 15 I had a CT Scan of the abdomen, and March 23 I heard the results by phone. The Ascites (fluid) was gone, and the granulosa cell tumor on the liver had shrunk from 5.5 cm to 4.8 cm. The oncologist had already told me "No more surgery," so he recommended more chemo. Meantime three more of my fingernails had begun to come loose, and the aches and fatigue persisted.
I spent a lot of time thinking about the quality of my life on chemo and trying to balance it with possible prolonged life. I didn't want any more chemo. At this point a shorter life with higher quality was the road I would choose. When I met with the oncologist, he suggested two more sessions of chemo. I protested. I told him two more rounds of chemo and I wouldn't have any fingernails at all! He said it was the Taxotere that caused the nail problem. My chemo would be carboplatin only. So I went forth with that.
Chemo 7 was unremarkable, except for the fatigue. Taste buds were a bit haywire, but not as bad as with the Taxotere combo. On chemo 8, the anti-nausea meds got the best of me. I ended up two days later with constipation so bad I had to be taken to the emergency room by ambulance. One day in ER and another day in a hospital bed was required before my intestines were clear, and it was another week of careful food management at home before I felt decent. I'm supposed to get another CT scan, but in my present state of mind, I don't want any more chemo, so I really don't want to know what's on the CT scan! I'm plunging forth with summer travel plans, and I'll pretend I'm Scarlett O'Hara and "think about that tomorrow."
During my summer travels, I decided I had something to live for. I went back to the oncologist. My Inhibin levels had gone up to 30. Before we even set up the CT scan, we knew more chemo was required. So I went on Cisplatin and Gemzar for 18 weeks, July 29-Nov. 18, 2005.
This time the side effects were mainly fatigue. By Nov. 1 I had to have a blood transfusion because the chemo was doing a number on my blood. Nausea was controlled by heavy-duty meds. I had one hospitalization for partial intestinal blockage, which cleared itself without surgery after the hospital put me on "nothing by mouth" for a day or so. The CT scan they did during that hospitalization showed that the GCT in my liver was 4.8 cm by 3.2 cm by 3.0 cm, which was larger than I had envisioned and hadn't shrunk that much after a year of chemo. But the growth of the tumor was under control, and there was no pain. However, I was exhausted by the treatments and asked the oncologist for a break. He said a couple of months couldn't hurt. I really enjoyed the holidays.
My next appointment was Jan. 25, 2006, to decide future course of treatment. The chemo nurse had prepared me for another round of chemo, and in fact told me I would probably be on chemo the rest of my life, as long as I can tolerate it. But before I went to my Jan. 25 appointment, I sought out a second opinion. It kept bothering me that my regular oncologist wouldn't even consider surgery, and I felt surgery was the first line of defense.
I learned a lot from the second oncologist -- most important, that this tumor is almost always ON the liver, not IN the liver. He said they wouldn't do surgery on a tumor like this if it were 3.0 cm or smaller; they'd probably do Radio Frequency Ablation. He reviewed my records and told me he felt I had had excellent treatment with my oncologist. A viable reason to change doctors would be if I wanted to change hospitals (my oncologist is at a "teaching" university hospital, and while I'm getting sick of the constant stream of newbies who do my exams, I'm not ready to move on until my oncologist retires).
For my Jan. 25 appointment with my regular oncologist, I was all prepared to go back into chemo. But my doctor said we would stay off chemo awhile to allow my bone marrow more time to recover. Although I have regained most of my energy and my blood counts are good, it seems there's a delicate balance between "managing" the tumor versus killing me with chemo. My Ca 125 came in at 6 or 7, and the Inhibin at 13. Doctor scheduled another CT scan and said I was to see him every month. I went home like a kid let out of school, with time to catch up on a few things, such as updating this website!
Back to my GCT story from the beginning: My Life With Granulosa Cell Carcinoma
