Can a person survive pancreatic cancer?

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RE: Recovery

by sm0lts on Fri Nov 02, 2012 06:53 PM

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On Nov 27, 2004 12:00 AM Russell wrote:

Dear Penny, I am sure your husband is so looking forwrd to his last treatment. That is one of the dates that I will never forget...May 29, 2001...the day of my last treatment. The recovery process from the treatments was very long for me. As I understand it, the body eradicates the chemo drug through your sweat, your urine, etc. But the radiation treatments can have long lasting side effects. Even today, after four years, I am in a constant state of mild nausea, I fatigue very easily, and I have pain in my incision area. I also suffer from neuropathy. My feet have such numbness, tingling and shooting pain. Sometimes I lay in bed at night with my knees pulled up to my chest and just shake my feet. But Penny...I look at these things as merely minor inconveniences that I have learned to live with...I am alive and have survived one of the most deadliest cancers out there. Novemeber 3rd was my four year anniversary from surgery. Hopefully your husband will recover quickly...everyone is different. I went back to work while I was under my second go around of chemo. At first I was part-time, and then after treaments I went full-time. that lasted for about one year, and then I just couldn't do it anymore...I retired on social security disabilty at the age of 58. My best to you and your husband, and if you have any questons or would like to communicate further, please feel free. Best Regards, Russ

Hi Russ,

 

We haven't spoken yet, but we are to some degree in the same boat.  Next April it will be 3 years since my diagnosis with PC.  Sometimes I feel like a survivor and sometimes I think I'm just whistling in the dark.  But there is not doubt about the remission: PC19-9 markers ranging from 1.4 to 4. PET score of 1.0, no mets anywhere.  And this is with an inoperable tumor wrapped around several arteries.  Six large treatments with Gemzar and 33 radiation treatments got me here; that and a lot of prayers from friends and relatives.

So I look and act healthy, for the most part.  When I'm not looking and acting healthy I am, like you, easily exhausted, frequently nauseous and subject to sharp but short-lived stomach pains after eating.  Sleep has become more difficult, with mild neuropathy and occasional panic attacks that mimic congestive heart failure.  The poor sleep and muscular fatigue sometines make it hard to pry myself off of couch, let alone out of the house.

But, I suspect you know that these physical discomforts are not actually that bad.  What do you expect at 64?  What's worst for me is:

Uncertainty.  Am I a survivor or just someone blessed with a long remission?  Should I measure my future in weeks or years?  The choice I make regarding "there's no tomorow" kinds of road trips and family things vs. committing myself to years of re-education depend on how I answer to this question.

Frustration.  I was laid of from my consulting job just a month before I was diagnosed with PC (probably a connection there).  Two and a half years after being let go I find myself wanting badly to make some kind of contribution to, if not "humanity", at least other people directly.  One of the things that gets me down the most is the little I have been able to accomplish, and the lack of time to do anything about that now.

At a minimum, I need a creative outlet.  Whether I die a week or a decade from now, want a creative outlet.  Does that mean a "job"?  Paid jobs are few for 64-year-old ex fisheries biologists.  Have you tried to get work in your former area of expertise?  Have you tried working at something entirely new?  Have you tried volunteer work  (I'm thinking about being a Hospice volunteer)?

Forgive my blathering.  It's one of the glued to the couch days and I wanted to initiate aconversation with one of the few people who may be in my position.

 

Bruce

 

 

RE: Whipple Procedure U-penn

by vickid on Fri Nov 02, 2012 09:41 PM

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Try some hot peppermint tea,or warm ginger ale.

RE: Recovery

by FDoug on Sat Nov 03, 2012 02:09 AM

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On Nov 02, 2012 6:53 PM sm0lts wrote:

On Nov 27, 2004 12:00 AM Russell wrote:

Dear Penny, I am sure your husband is so looking forwrd to his last treatment. That is one of the dates that I will never forget...May 29, 2001...the day of my last treatment. The recovery process from the treatments was very long for me. As I understand it, the body eradicates the chemo drug through your sweat, your urine, etc. But the radiation treatments can have long lasting side effects. Even today, after four years, I am in a constant state of mild nausea, I fatigue very easily, and I have pain in my incision area. I also suffer from neuropathy. My feet have such numbness, tingling and shooting pain. Sometimes I lay in bed at night with my knees pulled up to my chest and just shake my feet. But Penny...I look at these things as merely minor inconveniences that I have learned to live with...I am alive and have survived one of the most deadliest cancers out there. Novemeber 3rd was my four year anniversary from surgery. Hopefully your husband will recover quickly...everyone is different. I went back to work while I was under my second go around of chemo. At first I was part-time, and then after treaments I went full-time. that lasted for about one year, and then I just couldn't do it anymore...I retired on social security disabilty at the age of 58. My best to you and your husband, and if you have any questons or would like to communicate further, please feel free. Best Regards, Russ

Hi Russ,

 

We haven't spoken yet, but we are to some degree in the same boat.  Next April it will be 3 years since my diagnosis with PC.  Sometimes I feel like a survivor and sometimes I think I'm just whistling in the dark.  But there is not doubt about the remission: PC19-9 markers ranging from 1.4 to 4. PET score of 1.0, no mets anywhere.  And this is with an inoperable tumor wrapped around several arteries.  Six large treatments with Gemzar and 33 radiation treatments got me here; that and a lot of prayers from friends and relatives.

So I look and act healthy, for the most part.  When I'm not looking and acting healthy I am, like you, easily exhausted, frequently nauseous and subject to sharp but short-lived stomach pains after eating.  Sleep has become more difficult, with mild neuropathy and occasional panic attacks that mimic congestive heart failure.  The poor sleep and muscular fatigue sometines make it hard to pry myself off of couch, let alone out of the house.

But, I suspect you know that these physical discomforts are not actually that bad.  What do you expect at 64?  What's worst for me is:

Uncertainty.  Am I a survivor or just someone blessed with a long remission?  Should I measure my future in weeks or years?  The choice I make regarding "there's no tomorow" kinds of road trips and family things vs. committing myself to years of re-education depend on how I answer to this question.

Frustration.  I was laid of from my consulting job just a month before I was diagnosed with PC (probably a connection there).  Two and a half years after being let go I find myself wanting badly to make some kind of contribution to, if not "humanity", at least other people directly.  One of the things that gets me down the most is the little I have been able to accomplish, and the lack of time to do anything about that now.

At a minimum, I need a creative outlet.  Whether I die a week or a decade from now, want a creative outlet.  Does that mean a "job"?  Paid jobs are few for 64-year-old ex fisheries biologists.  Have you tried to get work in your former area of expertise?  Have you tried working at something entirely new?  Have you tried volunteer work  (I'm thinking about being a Hospice volunteer)?

Forgive my blathering.  It's one of the glued to the couch days and I wanted to initiate aconversation with one of the few people who may be in my position.

 

Bruce

 

 

Bruce...

Your post struck a chord with me. I am 66, 1 year 6 months post whipple, with clean scans and marker numbers with bone density back problems from chemo and radiation and find myself kind of lost between thoughts of "wow maybe I will be around for plenty more years" and "this PC could reoccur tomorrow and I am just in a temporary remission right now". I too for the most part look and act like a healthy 66 year old.

As you mention it is the very real uncertainty that is so unsettling.  Is anyone certain at 66?  I suspect not, but it's just that those of us who experience a for real end of life disease get our perspective changed.  I've come to marvel that there are folks who have somehow lived their entire lives with that perspective and have always wrestled with the kind of short term vs. long term decisions you talk about.

So I don't have an answer for you. I try to get up each day and remind myself that my pancreatic cancer is "stable" for the time being, and that because of that the day is a "bonus day" that I get to spend alive and participating in the world. That tends to get me to abandon anything that I am not enjoying doing and I don't put off things I want to do. Who knows this could be as good as I'm going to feel for the rest of my life.

So far as the creative, I'd recommend volunteering of some sort. Hospice, hospitals, tutoring, advocacy (for Pancreatic Action Network for one).  Doesn't take much volunteer time to give some meaningful structure to a week.

Thanks for your post.

RE: Can a person survive pancreatic cancer?

by greeneyedgirl64 on Thu Nov 08, 2012 07:31 PM

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Hello everyone,

I just wanted to post some good news on this board :-) My fiance was diagnosed with inoperable stage IV pancreatic cancer on April 27,2012. The cancer was also in his liver as well as a couple of lymph nodes. His CA-19/9 was at 48,000 and things did not look promising. He had 3 months of chemo and the numbers grew to 724,000. WE never once lost our faith and continued to pray and be faithful followers of Christ through all of this. His doctor switched him to a differant type of chemo and we continued to pray and to thank God for every day....Well, 3 days ago he had another CT/PET scan and it shows NO SIGN of cancer, ANYWHERE!!! All of the spots in his liver are gone and there is no mass in the pancreas,the doctors are truley amazed and have no explanation for his healing but we do and that is faith in our God. Today he will have more blood work to measure the CA-19/9 again. Anything 0-37 is considered "normal", 2 weeks ago it was 210. Remember, at one time it was 724,000! I can not say enough about the care he has been recieving at Sharp Cancer Center here in San Diego and all of the many skilled doctors,specialists and nursing stafff, they are truley amazing :-) And I know that God is the true healer and my Lawrence is a walking testimnoy to that....

                     Elizabeth in San Diego

RE: Surviving Pancreatic Cancer

by oswegodeee on Thu Nov 08, 2012 07:55 PM

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Hi, 

I just saw this post, Have you had any luck in locating doctor?

My husband had the Nano Knife at University of Louisville, KY

Dr. Robert Martin. the operation was long but my husband did well, and was in good shape now for over a year. Talk to them perhaps they will help.

In my prayers

RE: Can a person survive pancreatic cancer?

by Whippleschmiple on Thu Nov 08, 2012 10:43 PM

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elizabeth- good luck to your fiance, and look into diet like in dr. servan-schreibers anti-cancer diet book while on chemo....  too and i think exercise is helpful, faith, prayer, support groups, truly strong will and fight to survive,....  not saying anything less of those that don't but it seems a very strong will to live and BELIEF you will live sometimes seem to help.  was he on folfirinox, something else, a combo...??  any radiation?? Was it neuroendocrine or adenocarcinoma??

RE: Can a person survive pancreatic cancer?

by ws1953 on Thu Nov 08, 2012 11:36 PM

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Thanks for sharing the good news with us. My thoughts and prayers are with you.

Good luck and best wishes.

RE: Can a person survive pancreatic cancer?

by Such123 on Fri Nov 09, 2012 09:25 AM

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Hi,

I was really happy to know that your fiance beat cancer. My husband also has stage 3 inoperable pancreatic cancer and has been through 4 chemo cycles of folfirinox and 28 sessions of radiation.

His tumor has shurnk, but it is still there. Can you please let me know the chemo protocols your fiance followed?

Thank you and my best wishes,

Sucharita

RE: Can a person survive pancreatic cancer?

by ws1953 on Sat Nov 10, 2012 09:18 PM

Quote | Reply

Please google the following:

Dr. Burzynski in Houston, Texas

Dr. Ralph Moss

Dr. Gonzalez in New York.

Also, try to google alternative and complimentary treatment.


WS 

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