Longest survivor of INOPERABLE stage 4 adenocarcinoma pancreatic cancer with metastisis to the liver

Thanks a mill for the long email.

Would bottled water at a supermarket suffice as distilled water?

On Jan 28, 2018 1:59 PM patrigib wrote:

Sorry for your father. It won't be easy but you never know how it will turn out.

My husband was diagnosed Sept 2014, adenocarcinoma plus liver mets. He is still alive and had only chemo (folfirinox, 5 fu maintenance, folfiri, gemzar and now docetaxel). Next scan Friday and results the next week.

They also told us he'd have a life expectancy of 12 months max when it was discovered. His nephew died 2 years before  from the same desease at the age of 42 and lasted only 6 months. Treatments are improving. So let's hope for the best. Please keep us informed.

Pat

Thanks a mill. Great to hear of people beating the odds. Gives everyone else so much hope

Hi there, I am Twisha, from Hyderabad, India. I wanted to ask if stage 4 pancreatic cancer is curable or not? I'm hoping it is curable. I have seen some stories online of cancer survivors which say it is curable with a particular medicine or treatment. Need help for my father. What treatment did your wife have and where? Which doctor? The doctors here say that he only have days to months left. Please help me. 

On Oct 04, 2017 2:23 AM detihw1 wrote:

On Jan 31, 2017 4:28 AM detihw1 wrote:

On Nov 17, 2015 3:19 PM detihw1 wrote:

I was diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer metastisis to the liver in January 2013.  I underwent 7 sessions of gemzar/abraxane whereupon I suffered pulmonary problems to the extent I was hospitalized for three days and came home on oxygen in early April of 2013.  I have been on oxygen ever since.  I had quit my heavy smoking habit some 10 years previous but still had mild copd when I started chemo.  My research indicates it is likely the chemo exacerbated this copd to the severe stage with which I continue to survive.  Chemo was suspended for one month but ca-19-9 scores had improved from 5800 to 115 and liver mets were shrunken by 1/2 as indicated by pet scan.  At my insistance the gemzar/abraxane regimen was restarted for 5 more sessions but the ca-19-9 scores increased to 995 at which point my onco insisted that we stop the gemzar/abraxane.  Discouraged, but not giving up, I began the folfirinox regimen for 7 sessions.  In November of 2013 my ca-19-9 score had fallen to normal (<35) and the pet scan showed no active cancer so chemo was suspended.  It is now November of 2015 and my ca-19-9 scores continue to be under 27.  I feel great except for the oxygen requirement and consider myself one of the luckiest men alive.  I turned 65 last August.

Continued by detihw1

In May of 2016 my ca 19-9 had risen to 66 so I had two more folfirinox sessions.  My ca 19-9 returned to normal level of 26 and has been normal since then.  Pet scan still showing NED.  It is now February 2017 and I will soon be 67 years old.  I'm feeling great but still on oxygen but exercise daily.  Never give up, the white coats are coming! 

Continued by detihw1

In may of 2017 my ca 19-1 score came back as 36.  It was discouraging because I assumed I would have to resume folfirinox chemo for the first time in 18 months.  Miraculously, my score fell back into the normal range on the next months test.  It has continued to fall each monthly test since then and the latest test has it at 27 again, well into the normal range.  My onco is astonished.  I continue to swim 70 laps daily and maintain my vitamin supplements but still have a glass or two of wine each day.  I am so lucky and thankful, I wish the same for all of you, don't ever give up!  I enjoyed my 67th birthday two months ago and my onco advises "keep doing whatever you are doing".  I had no surgery or radiation, just the chemo regimen outlined earlier.  I am nearing four years since diagnosis and still NED. Here is hoping and chemo rocks, don't pass it up is my advice.

SSo happy to read these posts..hooe you are still doing well!!! What supplements/vitamins do you take?

Hi, my name is sofia.. my mom was diagnosed with pancreatic cancer on august 2017.. She had a succesful whipple operation at John hopkins hospital. She started preventive chemio one month after surgery. There were 12 sessions in total, 2 per month. On january 2018, she did her first ct scan follow up and everything was OK. On april 2018, right after chemio treatment was finished, she went to her 2nd follow up and found 3 lesions on her liver that indicate metastasis. Since she just finished her 1st treatment she will start chemio after may 25th to gain strenght. I would really appreciate any experiences that could provide hope to me and my family I know that life expectancy in scenario is poor but i truly believe that only God can say when our time is done. Appreciate you experiences

On Apr 22, 2018 3:53 AM Sofm1212 wrote:

Hi, my name is sofia.. my mom was diagnosed with pancreatic cancer on august 2017.. She had a succesful whipple operation at John hopkins hospital. She started preventive chemio one month after surgery. There were 12 sessions in total, 2 per month. On january 2018, she did her first ct scan follow up and everything was OK. On april 2018, right after chemio treatment was finished, she went to her 2nd follow up and found 3 lesions on her liver that indicate metastasis. Since she just finished her 1st treatment she will start chemio after may 25th to gain strenght. I would really appreciate any experiences that could provide hope to me and my family I know that life expectancy in scenario is poor but i truly believe that only God can say when our time is done. Appreciate you experiences

Hello, when I read your message I had to reply. My father is in pretty much the exact same position down to the whipple at Johns Hopkins, was your surgeon Dr. Wolfgang? Unfortunately they couldn't get everything and he too ended up with mets to the liver, but recovered and went back on chemo. We are currently doing Gemcitabin (before surgery he was on 5FU and some radiation). Chemo seems to be keeping the tumor in check, but his CA19-9 is going up which is scary. We are going to see if we can try an alternative treatment bc chemo is so brutal, possibly keytruda or another drug if we can get it. Supposedly some trials and research have shown that it works in about 20% of cancer patients. Considering the odds of this horrible disease we feel it's worth a try if nothing else is working. Best of luck to you and feel free to reach out if you have other questions or anything. God bless and I hope your mom gains her strength back soon. 

On may 03, 2018 1:35 AM Hope134 wrote:

On Apr 22, 2018 3:53 AM Sofm1212 wrote:

Hi, my name is sofia.. my mom was diagnosed with pancreatic cancer on august 2017.. She had a succesful whipple operation at John hopkins hospital. She started preventive chemio one month after surgery. There were 12 sessions in total, 2 per month. On january 2018, she did her first ct scan follow up and everything was OK. On april 2018, right after chemio treatment was finished, she went to her 2nd follow up and found 3 lesions on her liver that indicate metastasis. Since she just finished her 1st treatment she will start chemio after may 25th to gain strenght. I would really appreciate any experiences that could provide hope to me and my family I know that life expectancy in scenario is poor but i truly believe that only God can say when our time is done. Appreciate you experiences

Hello, when I read your message I had to reply. My father is in pretty much the exact same position down to the whipple at Johns Hopkins, was your surgeon Dr. Wolfgang? Unfortunately they couldn't get everything and he too ended up with mets to the liver, but recovered and went back on chemo. We are currently doing Gemcitabin (before surgery he was on 5FU and some radiation). Chemo seems to be keeping the tumor in check, but his CA19-9 is going up which is scary. We are going to see if we can try an alternative treatment bc chemo is so brutal, possibly keytruda or another drug if we can get it. Supposedly some trials and research have shown that it works in about 20% of cancer patients. Considering the odds of this horrible disease we feel it's worth a try if nothing else is working. Best of luck to you and feel free to reach out if you have other questions or anything. God bless and I hope your mom gains her strength back soon. 

Hi,

Dr. Jin He was my mom's surgeon. He is part of Dr. Wolfgang's staff.

I hope my mom tolerates this new chemo. I dont want her quality of life to be affected. is horrible to see her in this stage.

How old is your dad? when was his surgery done?

God Bless you and your whole family in this stage of your lives.

On Feb 27, 2018 2:38 AM Kernenn32 wrote:

On Oct 04, 2017 2:23 AM detihw1 wrote:

On Jan 31, 2017 4:28 AM detihw1 wrote:

On Nov 17, 2015 3:19 PM detihw1 wrote:

I was diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer metastisis to the liver in January 2013.  I underwent 7 sessions of gemzar/abraxane whereupon I suffered pulmonary problems to the extent I was hospitalized for three days and came home on oxygen in early April of 2013.  I have been on oxygen ever since.  I had quit my heavy smoking habit some 10 years previous but still had mild copd when I started chemo.  My research indicates it is likely the chemo exacerbated this copd to the severe stage with which I continue to survive.  Chemo was suspended for one month but ca-19-9 scores had improved from 5800 to 115 and liver mets were shrunken by 1/2 as indicated by pet scan.  At my insistance the gemzar/abraxane regimen was restarted for 5 more sessions but the ca-19-9 scores increased to 995 at which point my onco insisted that we stop the gemzar/abraxane.  Discouraged, but not giving up, I began the folfirinox regimen for 7 sessions.  In November of 2013 my ca-19-9 score had fallen to normal (<35) and the pet scan showed no active cancer so chemo was suspended.  It is now November of 2015 and my ca-19-9 scores continue to be under 27.  I feel great except for the oxygen requirement and consider myself one of the luckiest men alive.  I turned 65 last August.

Continued by detihw1

In May of 2016 my ca 19-9 had risen to 66 so I had two more folfirinox sessions.  My ca 19-9 returned to normal level of 26 and has been normal since then.  Pet scan still showing NED.  It is now February 2017 and I will soon be 67 years old.  I'm feeling great but still on oxygen but exercise daily.  Never give up, the white coats are coming! 

Continued by detihw1

In may of 2017 my ca 19-1 score came back as 36.  It was discouraging because I assumed I would have to resume folfirinox chemo for the first time in 18 months.  Miraculously, my score fell back into the normal range on the next months test.  It has continued to fall each monthly test since then and the latest test has it at 27 again, well into the normal range.  My onco is astonished.  I continue to swim 70 laps daily and maintain my vitamin supplements but still have a glass or two of wine each day.  I am so lucky and thankful, I wish the same for all of you, don't ever give up!  I enjoyed my 67th birthday two months ago and my onco advises "keep doing whatever you are doing".  I had no surgery or radiation, just the chemo regimen outlined earlier.  I am nearing four years since diagnosis and still NED. Here is hoping and chemo rocks, don't pass it up is my advice.

SSo happy to read these posts..hooe you are still doing well!!! What supplements/vitamins do you take?

Two summers ago my pet scan indicated a 1.5cm tumor in my lower esophogus.  I had a gastroscopic exam and biopsy indicating adenocarcinoma.  I went through 35 sessions of radiation. one more session of folfirinox, and 8 sessions of carbotax chemotherapy.  The subsequent pet scan indicated no evidence of disease.  I have had two more pet scans indicating no evidence of disease since then and my ca-19 and cea markers are again well into the normal range for the last year.  It has been six years since my stage iv pancreatic cancer and I continue to be healthy except for my continued 24/7 oxygen requirement.  I still swim 100 laps a day and feel great.  Never give up, the white coats are making greater progress everyday.  God bless America and the medical establishment.

Where To Find Great Information

Everyone,
          If you want the latest info on what works and what doesn’t go to the largest Pancreatic Cancer thread at:
https://compass.cancerfighter.com/message-board/message/all,
          Although the thread title references Nanoknife and IRE, the forum is certainly not limited to those topics.  The thread goes far beyond.
          Here are some of the topics covered recently via ASCO and other postings:
[X] The sequence in which the standard therapies work best, and how to prepare the best treatment plan.
[X] How to improve the standard therapies, even outside a clinical trail.
[X] Many oncologists are uncertain what to do after two lines of therapy fail.  How to find the best 3rd line and 4th line therapies.
[X] How to find the Emerging Therapies that metastatic patients need to survive.  They are identified in the past 2 years of ASCO conference reviews.
[X] How to find the best Clinical Trials, and why you must review them BEFORE starting even the first session of therapy.
[X] How to improve surgical resection by using Irreversible Electroporation (IRE).
[X] The best adjuvant therapy for resected patients.
[X] How peritoneal, spine and lymph node metastases can be treated.
[X] How apparently small things like PERT and antibiotics can be important.
[X] How to prevent weight loss and wasting, and how to prevent too-common life-taking hospital-acquired infections.
[X] How to select the best Medicare plan.
         PhilipJax