New here, 60 y/o father newly diagnosed pancreatic cancer, stage 4 w/ liver mets

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New here, 60 y/o father newly diagnosed pancreatic cancer, stage 4 w/ liver mets

by CeciChickPea on Sat Jun 02, 2018 02:05 AM

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Hello everyone.  My name is Cecilia and after stalking this page since mid-April, I decided to register and begin a dialogue with you lovely people.  I am a very outgoing person when life is good but become a bit of a recluse in times of heartache and despair.  Many of my friends don't even know what is happening in my life at the moment and wonder why i've been in hiding.  I just can't open up to them but I think I may need to share with people who are in my same or similar situation.  

My father was recently diagnosed with Stage 4 PC and liver mets.  He had been battling H. Pylori bacteria for a few months but his abdominal pain was not going away.  In April, they finally sent him for an x-ray of his upper abdomen.  About a week later, the doc called us and told us to come in to the office, which frightened us a bit but I told my dad to relax, that it wasn't uncommon (we thought it may be gallstones - boy were we wrong). They found multiple liver lesions... and let me tell you - some were/are quite large. We thought maybe liver cancer or benign tumors.  Doc said that we needed to immediately head to get a CT scan. He got it the same day.  The next day, April 20th, was the day our world got turned upside down and our lives were shattered.  Diagnoses: A 4cm tumor in the tail of the pancreas and, as stated earlier, multiple liver mets.  Biopsy confimed adenocarcinoma.  

My dad started weekly metronomic chemo (low dose-high frequency) on May 11th, and he goes every friday.  He goes home with a pump of 5FU.  

My comment and question has to do with the tumor markers CA 19-9.  How fast does is usually drop?  Because my father's tumor marker started off considerably higher than most other people with his cancer, even Stage 4.  His initial number was 672,000 on May 11th.  I don't read much about CA 19-9 being this high.  Anyway, today we got some great news.  We found out that the tumor level taken on May 25th (just 2 chemo treatments in) was 227,000.  The doctor was shocked and said that it means my dad is responding to this particular treatment.  I am happy, ecstatic, but also cautious to get my hopes up.  Is this common?  That is a huge drop!  I suspected his treatment was working because he started feeling better overall.... He stopped feeling the abdominal (liver) pain that he had felt since March every time he took a deep breath.  Doctors would say that was due to his swollen liver pushing up against the diaphragm. Anyway... he stopped feeling that pain 2 weeks ago.  And he also has been eating again and has a huge appetite.  He walks better and goes in to work a few times a week, when in the past, he had a general malaise that was keeping him on the sofa.  In mid April, he had to sleep sitting up because the abdominal pain was unbearable.  Now, he goes to bed with my mom and he is active, walks fast, gets up from sitting position with no problem.  He had at one point felt nauseaous and felt bloated.  But not anymore. No diarrhea. No vomitting. 

Any input on your experiences with tumor markers, especially at that high number, is greatly appreciated.  I love my father so much.  He is my best friend and the type of person who would give you the shirt/jacket/pants/socks/underwear off his back and body even if it was snowing outside.  He BBQs and will force you to eat until you drop.  He is always willing to help above and beyond.  He is our rock.  Our family's anchor.  I cannot lose him and will do anything in my power, even if it means taking him to other states (we live in California, USA) or to another country.  I spend my days and nights crying my eyes out hoping and feeling helpless.  Thank you for listening. -Ceci

RE: New here, 60 y/o father newly diagnosed pancreatic cancer, stage 4 w/ liver mets

by rigbycr on Thu Jun 07, 2018 03:02 PM

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Hello Cecillia.  My husband was diagnosed with PC last September and had a Whipple Procedure almost immediately after diagnosis. He had 6 months of of IV Chemo Therapy (Gemzar) weekly for three weeks and off a week so 18 treatments total and 28 radiation treatments Monday through Friday each week with oral chemo (Capecitabine 1300 mg twice daily on days of radiation). I cannot really talk about C19-9 numbers as high as your Fathers but it is wonderful they have come down.  My husbands C19-9 dropped and has been within normal limits after he started taking Essiac Tea Capsuels. Please do some reseach as these have helped many cancer patients per their testimonials. My husband takes the Jazzee Brand of Essiactive Tea Capsuels 500 mg per capsuel twice per day.  We order them from Vitacost. They were not suggested by the onocologist but he said it cannot hurt to take them. After you do your research I think you too will want to order them. Good luck and I pray these help your Father as they did my husband. 

RE: New here, 60 y/o father newly diagnosed pancreatic cancer, stage 4 w/ liver mets

by Claity on Thu Jun 07, 2018 05:46 PM

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The best place to go for answers surrounding pancreatic cancer is Pancan.org They are an amazing group. If you need it they will assign one person to help your father and their site is full of info only for pancreatic cancer. I was diagnosed in 2008 and currently have mets to lungs. Therefore stage 4. But it’s been a good run and those folks helped me soooo much Best of luck to you both. And just a little unasked for advice. Find someone you can talk to and be a support for you. This can be a tiring rough road and we need all the help we can get.

RE: New here, 60 y/o father newly diagnosed pancreatic cancer, stage 4 w/ liver mets

by WYLife2live on Thu Jun 07, 2018 10:05 PM

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Hi Cecilia.  My mother passed away from PC two years ago and hers was on the tail of the pancreas as well.  Her tumor marker was not as high as what you had mentioned but did respond well to chemo pill/radiation.  She then needed more chemo but really did not want to do that anymore and maybe would not have done as well as your father has.  I was then diagnosed with PC a year and half later but mine is on the head of the pancreas.  My tumor marker was not as high as your father's either but I immediatlly started changing my diet to promote a more alkaline state in my body.  The markers started coming down on their own PRIOR to treatments and then I did 12 weeks of chemo, 6 weeks of chemo pill/radiation and now doing another 12 weeks of chemo.  My markers have been in the normal range for at least 5 months now.  And thru all of that I continue to try to eat alkiline promoting foods, staying away from refined sugars and drinking chlorophyll daily.  I feel it has really helped me and maybe would help your father as well.  Blessings.

Bruce

RE: New here, 60 y/o father newly diagnosed pancreatic cancer, stage 4 w/ liver mets

by LiliTM on Wed Jun 27, 2018 07:00 PM

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Dear Cecilia, I'm so sorry for what your dad is going through, and you with him. I am sending my wishes for healing and strength and love. My heart goes to you with all my compassion and understanding. 

My still-young, athletic, beloved dad got an out of nowhere stage 4 gallbladder cancer (similar to pancreatic) diagnosis in March 2017. He is also my anchor, the axis upon which my family spins. I love him more than anything and can't bear to lose him either. I've been trying to do everything in my power all year to be his medical advocate. If there's anything we've learned that could be of help, I would be glad to share.

I hope the drop earlier this month in your dad's CA 19-9, and the fact that he was feeling better, means his metronomic chemo is working!

Which center/doctor is open to doing metronomic chemo? It's something I looked into for my dad, but he did 2 standard-dose regimens (Gem/Cis for 11 months, then Folfiri for 2.5 months) and after progressing on Folfiri, he had to get a biliary stent and we have just started a clinical trial using 2 checkpoint inhibitor immunotherapy drugs and ablation.

Have you asked the doctors about sending tumor tissue for genomic testing? If he has targetable mutations or immunotherapy indicators, you would want to know asap.

Also I am not sure if this applies due to his mets but for pancreatic cancer, I've read about IRE/nanoknife. Might want to look into it? Also there's drug sensitivity testing on fresh biopsy tissue through Dr. Nagourney's Cancer Institute lab in California, although I am not sure how helpful that would be (we weren't able to do it due to the need for a laparoscopic biopsy and knowing that my dad already progressed on 4 chemotherapy agents... I still wish we could have those results though.)

Some things that likely helped my dad get through chemo as well as he did - acupuncture, probiotics, coriolus, curcumin, vitamin d and b12, as much exercise as possible - even a short walk when tired, drinking lots of water, and a healthy plant-based diet. He also journals and talking has been therapeutic for him. We also try to take as much stress away as possible, watch comedy, play games, laugh... basically envelop him in all our love and hope that it is healing in some way. 

It's clear how much you love your dad too. I am like you. I have been heartbroken since the day of his diagnosis, always terrified but fiercely hoping, heart so full with love. Sending love to you, Lili

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