I was diagnosed with stage four cancer at 43 years old. The doctor's didn't expect me to live longer than six months. By God's grace, I am alive and well eight years later.
Read my "background story" just below for the details. Please feel free to give this site to anyone you think it might help. I am ALWAYS willing to answer any questions. If you email me, and I don't know you, please put RE:cancer or caring bridge or I may not open the email. :)
I am a wife, mother of two, CASA volunteer and a nurse practitioner. I was 43 years old when I was diagnosed with Cancer of Unknown Primary. That means they don't know where it started. On 8/29/2007 I had a little ache under my ribs on the right. And I had a little nausea after walking one and a half miles. I thought my gallbladder was acting up (I may need to reconsider my profession!) The next day, 8/30/2007, I had a gallbladder ultrasound which showed I had several lesions (tumors) in my liver. The largest one was 9.0 x 5.6 cm, (3.5 x 2.24 inches). That same day I had abdominal and pelvic CT scans. Those scans showed that I had tumors in my liver, "implants" (like a net) on my liver and all across my pelvis, covering both ovaries and uterus, and several tumors (at least 5 larger ones) in my abdomen ranging in size from 1/2 inch to 1 1/2 inches. Then I had a chest CT and found 6-10 tumors in each lung, 1/2 to 1 inches. A liver biopsy and a laparoscopy removing my right ovary showed, “poorly differentiated adenocarcinoma of unknown primary.” The tissue was sent to Northside, The Mayo Clinic and Vanderbuilt. I have also had DNA testing. They have never been able to tell where it started.
I started chemo on October 12, 2007. I had Avastin every third week, Taxol and Carboplatin every week. I had that for 33 weeks. During that time I experienced many side effects including; raw and bleeding nasal passages, very sore throat, hoarse voice, loss of taste, thinning hair, loss of eye brows and eye lashes, yellowing nails, fatigue, some short term memory problems, some dizzzyness.
From August to December 2007 my tumor markers (blood test) had been returning to normal and the PET scans (like xrays) showed that the tumors were shrinking. My turmor markers all stayed within normal limits. The PET scans, although showing some improvement each time, showed no real shrinking of the tumors. So I went to a specialist, Dr. Greco, at Vanderbilt. He said that those medications had helped me all they could and recommended a change.
I started the new medications, Gemzar and Irinotecan on May 30, 2008. I continued Avastin every third week. I had treatment for two weeks and got the third week off. With this chemo I had fewer side effects but the fatigue remained. I also had more nausea and vomiting. This medicine affected my immune system, by lowering my white blood cell count. That means I had a harder time fighting off infections so I had to be careful about going out and being around other people during the times my counts were low.
I was on that treatment until October 28, 2008 when the doctor's decided that I was stable and that the cancer could very well be dead. The decision was made to stop treatment and just monitor.
March 30, 2009 my CA 125 (tumor marker) went up and the PET showed a new tumor in my abdomen, about 1/2 inch. I started chemo again on April 17, 2009. Weekly Taxol, Carboplatin and Avastin again.
August 18, 2009. I responded very well to treatment. My tumor markers and PET showed improvement almost immediately. We did 6 rounds of chemo (18 weeks). I finished my last treatment and we decided to continue Avastin every third week indefinitely.
August 12, 2010 I had to start treatment again! I was just one week short of a year! It has always been the Doctor's goal to put me in remission for as long as possible but they have all agreed they don't expect me to ever be cured. (To be clear, I expect something different.)
I came off taxol and carboplatin on August 30, 2011. Went to Italy for Thanksgiving.
Started treatment again May 25, 2012 . Weekly Taxol and Carboplatin with Avastin every third week. It's been over a year and my PET scans is exactly the same, activity in my liver and left lung. No improvement but no advancement either.
September 5, 2013 raised Carboplatin dose at our request. Did see improvement in tumor markers almost right away.
October 2, 2013 got a blood clot in left jugular. Started daily Lovenox injections.
November 13, 2013 infected port-a-cath removed in office.
November 21-27, 2013 STOPPED CHEMOTHERAPY, admitted to Kennestone for IV antibiotics. November 25th PICC line inserted. IV vancomycin and zosin while at hospital. Went home on IV vanco and cipro. Serum Creatinine started rising, up to 1.87. Stopped vancomycin and cipro, started IV cubicin. Continued that until CPK levels started to rise (1000) and muscle cramps and aches. Stopped on 12/26/13. PICC taken out at Dr. Bahari's on 12/31/13.
4/4/13 - Scans show spinal cord decompression and ALOT of activity. Metz to bones (Thoracic and Lumbar). In hospital, radiation to T3, T4, T5.