Postby mariane » Tue Sep 22, 2015 9:44 pm
Hi! I am 40 years old mom of twins. I am Polish sharing my time between Poland and the States. I had hardly any symptoms, a trace of blood with mucous. I had abdominal pain for 12 years due to stage 4 endometriosis (inherited from my mom). I learnt to live with constant gut pain and ignored it. My dad was diagnosed with stage 2 crc at 74. His cancer was huge, caused obstruction but did not metastasized. He is almost 5 years after his surgery and Xeloda only chemo, NED. I planned to get colonoscopy at 40. It was too late for me. My colonoscopy was scheduled on our 10th wedding anniversary. We planned to celebrate after. Life is so unpredictable.... I got CT scan which showed suspected 3 lesions on my liver. MMR a week later confirmed metastases - there were 7, one 6cm on left lobe and small subcentimeter ones on my right lobe, 7/8 segments + caudate. Since my primary was small Polish oncologists decided to remove primary first. It got resected on July 13th, I did not get colostomy. I walked on second day after surgery and refused pain killers on 3d day. I was adapted to pain sometimes severe because of endometriosis. 4 out of 15 LN tested positive. I got discharged from the hospital 5 days after my surgery and sent my tumor to CARIS for genetic testing. Results were negative for most mutations. Learning about Dr Kemeny and her success rate dealing with hepatic pump I decided to send her my medical records and got appointment on August 3d. She was surprisingly compassionate and warm and promised to fight for me. First CT scan at Sloan showed 10+ liver mets. One of my tumors now 3cm, abutting vena cava inferior. My CEA rose from 46 in late June to 146 at Sloan. Dr Kemeny put me on FOLFIRINOX without biologicals to check my response on chemo. After 3 rounds of chemo I was scheduled for follow up scans. Luckily my response was good, tumors shrunk, looked dead (?!!!) already, CEA down to 20, LDH down to 140 from 370. I am supposed to take one more round of chemo then get HAI pump implanted on October 13th . My surgeon will be Dr D'Angelica. I had consultation with him yesterday. Dr D'Angelica wants to shrink awful mets even more with 3-4 rounds of HAI chemo prior to the surgery. He plans to place HAI pump and maybe get the small caudate met at the same time. I still cannot recover from the shock of my diagnosis. I can sleep most nights now. I pray to God to let me stay here with my babies.
I have many questions. How was the HAI pump surgery? Did you recover quickly? How did it look like? Any suggestions of cheap hotels for my husband ? How was liver surgery itself? I try to be aggressive with my treatment. I also walk 6 miles almost every day even with 5FU pump.
Any suggestions for diet , supplements? Is Curcumin interrfering with Irinotecan? Should I take Cimetidine? My CA 19.9 was 29 in July. I received it in hospital in Poland during my primary resection. I avoid any meat. I have not tasted red meat since my colonoscopy, no sweets, no sugar. I slowly introduce back again more vegetables after colon surgery during chemo. I was always health nut, never drunk, never smoked, exercised, ate healthy, lots of fruits and vegetables, cooked home-made food, baked own rye or spelt bread. I just hate this awful disease. I probably can blame my genes but come on.... my dad was 74....smoked for years, obese, had serious symptoms for 2 years prior diagnosis, his tumor caused blockage but did not went through gut wall... My poor dad is crying now that he would like to die instead of me... I am an only child because of my mom's endometriosis. My both parents are healthy in their late 70ties, healthier than in their past. It is such an irony to be diagnose with preventable cancer at 40.
I TRY to hope for the best. Prayer helps me to fall asleep. Without faith I would go mad.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016
I praise God for every day with my family!