May, 2009
Dialog between Andy Kinnecom and Ana Prado
ANDY: Hi Ana, I have a few questions to ask you, and in no particular order. I think your answers will be a positive help for many women out there who are recently diagnosed with peritoneal cancer.
ANA: ask all the questions you want. I am very open to helping any others with this disease.
ANDY: When were you first diagnosed?
ANA: November, 2005. Stage IV Primary Peritoneal Cancer.
ANDY: Did you have the tumor debulking surgery?
ANA: Yes, on Monday, Dec. 5, 2005 @UCSF/Mount Zion Hospital in San Francisco, CA.
ANDY: Any other surgery?
ANA: Yes ... they took EVERYTHING … ovaries, fallopian tubes, uterus, cervix, and the omentum .... even my appendix!
ANDY: Were you in the hospital for other treatments?
ANA: Yes, on April 20, 2006 @UCSF, I had exploratory Laparoscopic surgery of my bowels … she took samples of the ascites that was in my belly & it was confirmed that I still had cancer cells ... also, during this surgery, my doctor/GYN-ONC, put in the IP port under my left rib so I could begin the IP chemo ... Taxol & Cisplatin for 6 cycles … from May 1, 2006 to Aug. 23, 2006
ANDY: Can you describe your entire chemo regimen? In other words, # of cycles, types of drugs?
ANA:.Chemo #1 Dec. 13, 2005 to March 10, 2006..5 cycles thru chest port of Taxol & Carboplatin .... it was NOT working, my belly was full of ascites & I looked like I was an anorexic who was 10 months pregnant! It was very painful and the Ascites almost killed me! It was stopped for 7 weeks until I got all my counts back up and I had the exploratory surgery/IP Port implanted in belly.
Chemo #2 May 1, 2006 to August 23, 2006 ... 6 cycles of Taxol & Cisplatin ... done in the Intraperitoneal port.
Chemo # 3 In January 2008, I had a CT/PET scan which confirmed 3 lymph nodes with metastatic cancer...so I did 8 cycles of Gemzar & Carboplatin from Feb 14, 2008 to July 23, 2008..done in my chest port...Currently I am still in Remission, AND I still have BOTH PORTS!
(BTW, I also did chemo in 1991 & 1998 for Breast cancer ... so I had two mastectomies both followed by chemo BEFORE I had PPC ... so, altogether I have done 5 different chemos in 17 yrs!!!)
ANDY: So you had both IP and IV?
ANA: Yes, both.
ANDY: Where did you get treatment?
ANA: #1 chemo was done in Santa Rosa, CA at Redwood Regional Cancer Center, except for the first cycle of it was done 1 week after my tumor debulking surgery, while I was still in the hospital.
And # 2 chemo (IP chemo) was done @ UCSF Mount Zion Hospital ... DAY ONE I would have to be admitted to the hospital for 2 nights/3 days stay.
On DAY 2, or the next week, I would go back to the outpatient Cancer Center @ UCSF to get the Day 2 chemo.
ANDY: Were you in a clinical trial?
ANA: No
ANDY: Where did it metastasize to?
ANA: It had spread thru the lymphatic system to my lungs!
I had Pleural Effusions in both lungs so I had to have a
"thoracentesis" or draining of the fluid from both my lungs 2-3 weeks prior to tumor debulking surgery ... Cancerous cells were found in the fluid & I was told I was a Stage IV because of it ... In my surgery/Pathology report, I had cancer on my OMENTUM, PELVIC PERITONEUM, OVARIES, FALLOP. TUBES, UTERINE & APPENDICEAL SEROSANA .... largest tumor deposit in pelvis=1.5 cm.
Maximum diameter of largest abdominal tumor=16 cm (which was on the omentum)
Many of my lymph nodes were also involved..
Right pelvic nodes, metastatic carcinoma in 5 of 5 lymph nodes.
Left pelvic, metastatic in 1 lymph node (Biopsy #1)
Left pelvic lymph node #2 dissection: Metastatic carcinoma in 6 of 12 lymph nodes.
Para-aortic lymph nodes: Metastatic carcinoma present in 21 of 21 lymph nodes.
ANDY: Do you have family?
ANA: Yes, I am the oldest of four … I have one sister & two brothers
My Mom is still alive as well and she is a Breast cancer survivor and also carries the BRCA-1 gene as well as 3 of her sisters & I do .... I never knew my real father, all I know about him is that he is from Mexico City. I have 2 grown children … a 27 yr old daughter and a 21 yr old son ... my daughter has 2 boys ... the oldest is 6 yrs old & the youngest is 6 months old.
My son only has one baby son, who is 6 months old too … just a week older than his cousin! So I have 3 grandsons … My oldest grandson is my JOY!! He calls me his "Little Nana"...
I have 2 nieces, 2 nephews and a great-niece who passed away in 2006 at the age of 9 months of Spinal Muscular Atrophy.
ANDY: Are you in contact with others with PPC?
ANA: Yes ... a few .... one lady I met locally here in Santa Rosa, Ca @ an American Cancer Society function, The "Look Good, Feel Better" program ... she is still surviving her PPC stage 3 cancer, and by some miracle was still able to keep her reproductive organs and have a baby! But after the birth of the baby in March 2008, she did have a complete hysterectomy and had to do more chemo...
I also used to keep in touch with Leah Dorfman on her website "The Peritoneal Cancer Survivors Club" better known as "The Peritoneal Cancer Sucks Club"....but she passed away in late November 2008 from her battle with PPC.
I have a profile on MedHelp.org now since Leah passed away ... but I am looking for more of a one on one friendship, the Medhelp website has too many "cliques" on them and I never get any responses from the women on there.
ANDY: What were your symptoms? When did they start?
ANA: I had the Urge to Urinate Really bad!! I would say that started about 2 1/2 yrs before the diagnosis. I never get sick, and twice in the year before/of my diagnosis, I had a really bad "stomach flu"... nausea, diarrhea and headache ... but then about 8 months before the diagnosis, I also had very painful, heavy clotting periods and off & on I noticed my pants felt tighter around the waist ... but everyone was telling me I "looked like I was losing weight".... I also felt nauseas after eating very little and my back started to hurt as well as my legs ... I thought it was "menopause" since I had just turned 40 ... also, I would get vertigo and the diarrhea and constipation got worse as the year went on ... I had been telling my doctor for over a year about the diarrhea but she kept saying it was "lactose intolerance, don't eat anything diary!"
2 months before the diagnosis, I had a very strange period ... I am always regular ... this was in Sept. 2005 my period lasted 2 weeks, and I continued to spot off and on thru October...I also was noticing being intimate was beginning to get very uncomfortable .... So I went to my primary doctor once again and she said that maybe I was bleeding due to a "STD" !!! I was shocked & I knew it WAS NOT an STD .... she still gave me antibiotics just in case ... but they made me so nauseous and after a week I had to stop taking them & when I seen her on October 12, 2005, I told her I was still not feeling too good, so she said if I didn't feel better by Monday Oct. 17th, I should have an Ultrasound to make sure I didn't have fibroids or gallbladder problems .... so she gave me a prescription to have the Ultrasound and I had the Ultrasound done on Oct. 19, 2005 ... the Technician did an Vaginal Ultrasound as well....
I did not get the results of this exam until 2 wks later on Nov, 1, 2005 ...
the nurse who called to tell me I may have a "ruptured cyst" and to see my Gynecologist as soon as I could....But I had so much pain by November 1, 2, 3 and 4th, 2005 I called my Oncologist as well and he recommended I go to the ER to get help with the pain....I did see my Gynecologist and she referred me to the Doctor at UCSF in San Francisco...
On November 10, 2005, my local Oncologist had the results of my bloodwork and CT scans I had when I went to the hospital/Emergency room the week before...he said I had a Stage IV ovarian cancer!
He recommended as well, for me to see the GYN/ONC specialist in San Francisco...that is what I did......I seen her on November 18, 2005 and she did my tumor debulking surgery 2 1/2 weeks later on Dec 5 2005....
During all that time in November 2005 till my surgery, I was in so much pain, I had to stop working, I went on a Leave of Absence immediately and signed up for State Disability as well....the pain got worse and I was having trouble breathing due to the Pleural Effusions. I could not lay flat on my back or even lay on my belly because of the fear of not being able to breathe and my belly being so bloated and painful...
ANDY: How many hospitalizations have you had in the past three years, and why?
ANA:. not counting the IP chemos, I have been in the hospital 3 times ...
1...March 17 to 27, 2006 hospitalized due to malnutrition, ascites in the belly, all my blood counts were dangerously low as well as all my electrolytes...
2...April 20, 2006...Laparoscopic exploratory surgery+removal of a small bowel adhesion+insertion of the IP Port...
3...Oct. 8, 2007...ventral hernia repair....
ANDY: What 2 or 3 or 4 things come to mind to give advice to others with PPC?
ANA: #1..Let your family help you get through the IP chemo...let them take care of you...cook for you, wash your clothes, clean your house, Ect..
#2..Don't be too proud to ask your family or friends for help and ask them to Pray for you!!
#3...Try to Pray even if you don’t feel hopeful...listen to positive, uplifting music or watch funny movies. Do things that make you happy when you feel good.
#4....Don't be afraid to tell your Doctor NO!!! tell them the truth about your pain and don’t let them send you home early from the hospital if they try to send you home before you are ready! (my doctor tried to do that to me! I refused to go home til she relieved my pain! or else I probably would have died if she sent me home that March 2006)
#5...Insist on getting a PET/CT scan at least once a year and fight for your insurance to cover it!!!
ANDY: Have you had recurrence?
ANA:.Yes, in January 2008 to 3 lymph nodes..."1 prevascular lymph node within the mediastinum..consistent with metastatic disease" and more inferiorly and just posterior to the right common iliac vein is a 1 x 1 cm lesion, which likely represents metastatic stranding and fluid as well as a 7 millimeter low density lesion just medial to the common iliac vein" and "posterior to the inferior vena cava in the mid abdomen, a 2.1 x 1.1 ovoid lymph node..also consistent with metastatic disease..
ANDY: What other websites would you recommend, if any?
ANA:.Ovarian Cancer National Alliance, American Cancer Society, Organized Wisdon,and Ovations for a cure...
ANDY: Thank you Ana!
The Martha C. Kinnecom Peritoneal Cancer Foundation Inc. is a 501(c)3 non-profit corporation
www.PrimaryPeritonealCancer.org
PRIMARY PERITONEAL CANCER FOUNDATION
Keep Hope AliveAna Prado
Diagnosed November 2005
