November 28th Appointment in MDA Houston

Nothing eventful came out of this appointment. We went over the history of my disease. Next the Radiologists at MDA Houston will review the Radiology Reports and Films and provide their own opinion of the films. The GYN group in Houston will then review my case in next Tuesdays meeting. Dr. Ramirez will call me after the meeting to let me know what their recommendations are.

At this point, I am still researching the clinical trials provided to me by Dr. Shah from MDA in Orlando. MDA Houston will only be able to offer clinical trials that are being chaired at their facility. They do not have access to all of the clinical trials in the NCI database as I was originally led to believe. So basically, I need to decide which clinical trial is best for me or whether to go with the standard treatment of therapy for recurrent cervical cancer which is Topotecan.

I'm not schedule to go back to Orlando until Thursday night, but I am going to try to get home earlier if I can.

Timeline

12/03

• Diagnosed with squamous cell Cervical Carcinoma, Stage IIB

• Dr. Craig DeFreese, OB/GYN of Devoted to Women performed a laporoscopy, cervical cone biopsy and LEEP surgery following up on abnormal PAP from 10/03 and complaints of chronic abdominal pain.

• Referred to Dr. Finkler of Florida Hospital Cancer Center

12/03

• CT Scan confirms pathology of cervical cancer

• Dr. Finkler stages the cancer at IIB and recommends pelvic radiation, chemotherapy and lymphadectomy

12/3

• Go to MD Anderson for 2nd opinion

• Dr. Castaldo of MD Anderson confirms Dr. Finkler’s finding except for need for lymphadectomy. I choose MD Anderson

01/2004

• Begin pelvic radiation for 5 weeks

• Begin chemotherapy treatment for SQUAMOUS CELL CERVICAL CARCINOMA It is important to note that the protocol for squamous cell cervical carcinoma is different than that of adenocarcinoma. It is less aggressive. The protocol Cisplatin and 5FU is to enhance the radiation which is the main protocol for treatment of cervical squamous cell carcinomas.

05/2005

• Completed chemotherapy.

07/2004

• follow up CT scan shows significant decrease in cervical tumor and No Evidence of Disease.

• Continue to see Gynecological Oncologist – Dr. Castaldo and Chemotherapy Oncologist Nikita Shaw ever 3 months. All check ups is 2004 are negative for disease.

10/2004

• complain of abdominal pain

12/2004

• Colonoscopy performed by Dr. Ferreira of CRC (Colon Rectal Center). Negative for polyps. Some degree of radiation colitis (inflammation)

2/2005

• Regularly scheduled CT scan. Show NO EVIDENCE OF DISEASE.

3/17/2005

• Sharp shoulder pain begins. Need for constant pain relief medication until after liver surgery in October, 2005.

3/27/2005

• See Primary Physician regarding shoulder pain, Dr. Nerness of Lake Mary Family Practice. Dr. Nerness says that since I had clean CT scan 6 weeks ago, there is no point to have another one.

• He runs blood tests which show a slightly elevated liver enzymes. Recommends sonogram

• Liver sonogram shows nothing in liver, but indicates slight level of fluid around the heart; referred to cardiologist.

• EKG shows no problem with heart

4/28/2005

• Pain is consistent and getting worse. Reported to Gynocologist Dr. Castaldo during regular follow up check up. Referred to Surgical Orthopedic – nothing is wrong in cervix; could be scarring from radiation affecting spine.

05/2005

• Go to Dr. Stephen Goll of Orlando Orthopedics. Explained that #1 concern given my history is cancer. Recommends for MRI, EMG and 6 weeks of physical therapy.

• 5/2005 cervical and thoracic spine MRI shows only minimal degenerative bulging disc. However, given my history I felt that the MRI should have been more extensive – perhaps the liver tumor could have been caught at this point.

6/2005

• follow up with Dr. Goll; informed Dr. Goll that therapy did not help at all and in fact pain has become more severe. Told that there is noting he can do for me and referred to pain clinic.

6/2005

• go back to PCP, Dr. Roger Nerness to recap what has been going on. Dr. Nerness agrees that pain clinic is the next step.

7/2005

• go to see Dr. Preganz who puts me on Percocet. Percocet relieves pain only while continuously medicated. Also informed Dr. Pregantz that my main concern is cancer.

8/11/2005

• Regularly scheduled 6 month CT scan

8/14/2005

• Pain is radiating to rib cage

8/15/2005

• Visit to PCP, Dr. Nerness. Told of continuos pain and concern. Recommends to follow up pain doctor. If pain continues may consider testing for Sympathetic Reflex Syndrome.

8/17/2005

• Informed by Dr. Shaw that 8/11 CT scan shows 6X6 tumor in liver.

8/25/2005

• Needle liver biopsy is negative for cancer. Shows necrosis and inflammation, but no cancer.

8/26/2005

• Referred to Dr. Khaky of Orlando Surgical Group for consult on surgical biopsy. Referred to Infectious Disease Specialist Jose Giron to rule out possible infection. My symptoms included daily fever and I had been out of the country for two weeks in July.

8/2005

• Dr. Giron feels spread of squamous cell carcinoma and no where else is unlikely; it is more likely to be an infection; proceeding with testing for infectious disease; when all tests are negative it was decided to treat me empirically with antibiotic Flagyl. I requested a prescription for pain. Dr. Giron writes me a perscription for Codeine.

8/2005

• Parmacist misinterprets script and gives me Prednisone – 30 g twice a day. I took this medication for 7 days. I found information of the internet about Prednisone that concerned me. When I called my doctor, we discovered that the pharmacist – Albertson’s Pharmacy in Lake Mary – had filled the wrong prescription

8/2005

• coming off prednisone while on flagyl knocked me out. I spent at least ½ of my day of the next two weeks in bed;

Sept 19th

• I notice pain in my right calf. I begin to exercise a little bit each day that week as I grew concerned that the cramping was from too much bedtime. On Friday, Sept 23rd, the pain in my calf is so bad I can hardly step on the foot. Several hours later I realize I have a blood clot and drive myself to ORMC emergency room,

9/23

• DVT to right calf, knee and thigh is confirmed; begin heparin; CT scan shows tumor is now 9 cm

9/??

• Needle liver biopsy is repeated; this time cancer is found; however, origin is unconfirmed because cell type of cancer is adenocarcinoma (it is therefore assumed that this is not a recurrence but a new cancer of unknown origin)

10/03

• Surgery is delayed due to the unknown origin; after tests to rule out stomach cancer; surgery of liver is performed; it is found that the tumor in the liver cause an adhesion to the diaphragm and right lung base – THIS IS MOST LIKELY THE CAUSE OF MY RIGHT SHOULDER PAIN REPORTED ON 3/17/2005 – I HAVE HAD NO NECK/SHOULDER OR ARM PAIN POST SURGERY.

• The surgery takes 6 ½ hours due to complication of adhesion; the entire right lob of my liver is removed;Additionally I suffered from at least two blood clots;

• I spent 7 days in ICU and a total of 4 weeks in the hospital;

10/03

• at some point after the surgery, oncologist informs me that when my original films from Florida Hospital were re-analyzed; it was found that in addition to squamous cell carcinomas I also had adenocarcinoma. Therefore, it is concluded that this is a recurrence of the original cervical cancer.

ISSUES:

#1- I WAS NEVER INFORMED OR TREATED FOR ADENOCARCINOMA IN MY ORIGINAL CANCER TREATMENT; ADENOCARCINOMA TRAVELS THROUGH THE BLOOD STREAM AND IS THEREFORE MORE DEADLY THAN SQUAMOUS CELL; THE TREATMENT PTOTOCAL FOR ADENOCARCINOMA IS MORE AGGRESSIVE THAN THAT FOR SQUAMOUS CELL;
I AM LICKY THAT IT APPERS TO ONLY HAVE SPREAD TO MY LIVER, BUT THEN AT THIS POINT IT IS UNKNOWN HOW MANY MICROSCOPIC CANCEROUS CELLS EXIST.

HAVING NOT KNOWN ABOUT THE ADENOCARCINOMA CAUSED DELAY IN RECURRENCE DIAGNOSIS. THE DVT SEVERELY COMPLICATED MY SITUATION. HAD I BEEN DIAGNOSED SOONER, THE DVT COULD HAVE BEEN AVOIDED.

#2 - CT SCAN/ MRI SHOULD HAVE BEEN ORDERED SOONER THAN 8/11 BASED ON CHRONIC PAIN IN SHOULDER AND CANCER HISTORY.

#3 - PHARMACIST ERROR MAY HAVE LEAD TO THE FATIGUE CAUSING ME TO BE BED RIDDEN AND ULTIMATELY CAUSING THE DVT.



11/05

• Begin 6 treatments of taxsol/carboplatin on 11/15.

• Tumor markers are down after first treatments

12/05

• Second treatment is given 3 weeks later.

• Third treatment is delayed 1 week due to low platelet counts. Subsequent treatments are given at 4 week intervals at the low platelet counts becomes a patter.

03/06

• Sixth treatment received 3/06

05/06

• Follow up tumor markers on 05/06 are slightly elevated

06/06

• Follow up CT/PET show activity in Solar Plexus lymph nodes; inoperable

• Dr. Shah informs me that I will most likely not be cured at this point

07/06

• Dr. Bucholtz administers 6 weeks of tomotherapy to para-aorta;

• Severe pain in abdominal area; feels like rib cage is being crunched; cannot sleep; taking 120 mg oxycontine every 12 hours and up to 30mg oxycodone for breakthrough pain

• Pain starts to subside after about 4 weeks of therapy; natious throughout radiation therapy; throwing up daily; lost 30 pounds

09/06

• Neck/shoulder pain begins; not sure if I just slept on it the wrong way

• Pain intensifies in October

11/06

• Begin physical therapy for neck/shoulder pain

• CT scan 0f 11/01 shows new area of focus on edge of liver and soft tissue in Celiac region

• PET scan confirms metabolic activity in both areas noted in the CT scan

• Pain intensifies greatly to include upper and lower back; taking 40 mg of oxycontin every 12 hours and 15 mg for break through pain

11/27/06

• trip to MDA Houston

Friday, November 17, 2006

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Clinical Trials

These are the clinical trials provided to me by Dr. S that I am considering. If anyone knows anything about any of these drugs, please comment!!!

(1) ISOTRETINOIN, INTERFERON ALFA-2B
(2) VELCADE AND IRINOTECAN
(3) 852A
(4) VEGF Trap
(5) ABI-007
(6) Sunitinib
(7) Bevacizumab
(8) TM - copper reducing compound
(9) R763

November 15, 2006 - Visit to Radiation Oncologist

Dr. B, my radiation oncologist was in a conference when my PET/CT results came in last week. Therefore, he was not part of the conference with Dr. S. His opinion is slightly different from Dr. S's. In fact, his opinion is that the CT/PET results are highly inconclusive. Now, you all know that I have been on this roller coaster ride before. However, I'll take any glimmer of hope that I can get at this point.

It turns out that there are two areas of concern on the CT/PET. First is the previously radiated area. The area of concern happens to be right in the middle of the area that received the highest dose of radiation. While an experienced, although conservative, radiation oncologist reviewed the films and concluded that the new area of concern could not be radiation damage. Dr. B could not agree with 100% certainty. Although possible, it is highly unlikely that cancer could grow in this recently radiated area. The bad news is that if in fact it is cancer, then it is a very tough cancer.

The second area of concern is on the outer edge of the liver, where my liver was resected last year. This is typical behavior of the cancer coming back (to come back to where the incision was made). Nevertheless, the surgery I had last year had clear margins. This means that if the tumor was 6cm, they actually cut out 6cm + x and the x portion was not cancerous. Therefore, the tumor was encapsulated in the mass they removed.

Because my tumor markers are also all slightly elevated, everything is leading to a recurrence; however, the recurrence may be limited to the outer edge of the liver rather than the celiac where I recently was treated.

My next step is to go to MD Anderson at the University of Texas in Houston, which has the #1 Gynecological Cancer Clinic in the nation. They may want to redo all the scans. More than likely, they will make a recommendation for a treatment plan. There are lots of chemotherapies that have not yet been tried for me. Although they used the ones with the highest probably of success, they have not been successful for me. Hopefully the next one will be. Alternatively, I may be going into a clinical trial. There are a lot of anti-angiogenesis drugs out there that have demonstrated remarkable ability to inhibit tumor angiogenesis (the process of forming new blood vessels required for cancer to spread)

Houston Here I come

Robin will be traveling to Houston the week after Thanksgiving for a consult with MD Anderson (November 27th-30th). Anybody want to come along for moral support?

11/8/2006 - Review CT/PET Results

I had a CT performed on 11/1/2206 and a PET scan on 11/3/2006. There is a new area of concern on the outer edge of the liver. Also, the area radiated August/September 2006 shows an area of concern with hyper-metabolic activity. Dr. S suggests that I start looking into clinical trials. She provided me with a list of 7. I have been researching the trials with my dear friends Kathi and Magda. For the most part they look promising; however, I definitely feel that I need some direction in making a choice.

Dr. S has referred me to MDA in Houston where they will review all of my records from the past three years and make a recommendation.