It was a cold February day in 2009, when I was doubled over in pain and not feeling well. The pain was something I had not experienced previously. In realty, I thought it was salmonella from the peanuts I ate in a trail mix. My husband recognized my doubled over in pain was not normal and drove me to the hospital. In the emergency room the doctors quickly ruled out several factors. They did an x-ray of my abdomen and saw my inflammation that was not normal and a bowel blockage. I was admitted. After several other tests and a blood test called CA 125 (a blood test can be indicator in some women for cancer). CA 125 normal range is 0 – 35, however, everyone is different and can have a different normal range, therefore, it is difficult to use CA 125 as indicator alone, other test need to be done to confirm cancer. My CA 125 level came back at 2,800 and the tests that were completed, together confirmed a high risk of having ovarian cancer and possibly Primary Peritoneal Cancer. My entire team and including myself (my gut feeling) it was cancer. I needed to go through surgery called debulking. The surgery allows the surgeon to go in and remove all obvious signs of cancer including a complete hysterectomy.
I was diagnosed with stage IIIc (3c) Primary Peritoneal (PPC)/Ovarian cancer. There is four stages of cancer and three grades; a, b, or c. Mine is considered late stage cancer. My cancer was in the colon, ovaries, appendix, and omentum (a sheet of fat that is covered by peritoneum). In addition, two lymph nodes were also found to have cancer.
I was a candidate for the Avasten trial. I would receive the recommended treatment and Avasten or a placebo would be given during the first or second stage or not at all during this trial of one year. My husband and I discussed this thoroughly with each other, our children and our team of doctors and decided to go ahead with the trial.
My first round of treatment was aggressive: Carboplatinum, Taxol and Avasten. I did this for 6 rounds, roughly, 5 ½ months. This treatment was not easy, the side effects for me (it is important to note all of us react differently to chemo) included extreme fatigue, nausea, vomiting, difficulty eating (not really feeling like eating) and the steroids made my face look twice its size. That should not really matter, my face being swollen but it did to me. By the second treatment I was losing my hair.
At the end of the 5½ months, in June 2009, I was informed I was in remission. However, I would stay on Avasten during the next 5 months. I was thrilled; however, it took that long just to feel like I was human again. And at that point, in December 2009, I was informed the cancer had returned. Scared? You bet I was. All I could think of is “Is this it? Is this the end?” I hoped not, and it wasn’t. Thank goodness.
My next line of treatment was Doxil with Avasten. At this time I found out, I was on Avasten during the 1st phase of treatment but was receiving a placebo during remission. I began treatment with Doxil and Avasten for 4 months and the side effects became so Sevier, I was taken off in June 2010. My numbers were good for a short 5 weeks time period and then they began to rise. My oncology team placed me on daily Cytoxen in Sept 2010 and Avasten every three weeks. So far, this combination is working for me and has the least amount of side effects.
Recently, I found out I am BRAC 2 positive and our family is just beginning to digest the information. I have 5 adult children ranging in age 28 through 33. (Yes I was crazy back in the 70’s, not much on TV to watch, hahahahaha.
Knowing what I know now, I showed some of the signs. I had frequent urination, I thought it was normal for my age, I had lower back pain, who doesn’t after five children, feeling full, I was trying to diet and thought it was working, and midriff bulge, again, I thought normal for my age. My age at diagnoses 53, I now know those are some of the signs and symptoms for ovarian cancer. There are no known signs or symptoms for PPC, they are considered the same as ovarian cancer.
I had and continue to have a great team of nurses and Doctors. My team of doctors and nurses at Advocate Lutheran General are, in my opinion, the best! They are compassionate, caring and constantly educating themselves and their patients on the best possible care available. Today, I am a two year survivor.
The love and support of my husband, my children and family members has been instrumental in my survival. In addition, many dear friends who are a phone call away on those bad days and I need a lift. I have a special group of friends that live across the United States and come and visit me every 3 to 4 months and take me away for the weekend. Just girlfriends hanging out and being with each other makes me look forward to the next visit and keeps me going.
Note: If you are currently in treatment for PPC, or are a survivor of PPC, Marge is a great person to get in touch with for information, support and networking.