Pancreatic Cancer, Islet Cell/Neuroendocrine Tumors of Pancreas

On 10/14/2008 Marcie77 wrote:

Hello to everyone..

Its been quite some time since I have posted..but wanted to let everyone know, that it has been 18 months since I have had treatment for Non Functioning Islet Cell Carcinoma of Pancreas and I'm doing GREAT..All liver lesions remain gone, all Bone Mets are stable/no new growths..I am taking absolutely NO MEDICINE..back working part-time..Please get in touch with me if you have any questions..would love to hear from anyone else, post whipple or treatment for this type of Pancreatic Cancer..

Marcie Reber, RN, BSN, MSM

Hello Marcie,

I just read your article in the June 2009 PANCAN newsletter.  I am so glad you are doing well!  As I read, I was AMAZED at the similarities between us...except I am an ugly old boy and you are a beautiful lady!  Ha!  I too, was diagnosed when I was 39 with neuroendocrine tumor of the pancreas...9 years ago this afternoon, as a matter of fact.  I am also an experienced RN who works in a cardiac cath lab area in Texas. As I read your story, it brought back so many memories...of my symptoms, diagnosis and feelings of how I came to realize the reality of my illness.

As you can guess, (hopefully-ha!)  I am alive and doing well!  The only difference in our cases was my tumor was in the mid-tail of my pancreas.  I underwent a resection of my pancreas, splenectomy and cholecystectomy.  I experienced a pancreatic bed abcess post surgery and ended up in and out of the hospital for 5 months of 2000.  God blessed me to have clear margins, with no subsequent treatment.

As an added note, I experienced a diagnosis of malignant melanoma 2 years ago, stage 1a, with clear margins post surgical removal.

From what I gather in your story, we are the same age, same profession, same diagnosis, SAME SURVIVAL! 

Thanks for sharing your story...to those out there who are facing this dreaded diagnosis, THERE IS HOPE FOR SURVIVAL!  My favorite message is to remind folks that "Surviving is about God, Thriving is about me!"  We don't control all of our destiny, but we DO determine the journey along the way!!!

 Dale Golden, RN

On 6/16/2009 LuckyD wrote:

 

On 10/14/2008 Marcie77 wrote:

Hello to everyone..

Its been quite some time since I have posted..but wanted to let everyone know, that it has been 18 months since I have had treatment for Non Functioning Islet Cell Carcinoma of Pancreas and I'm doing GREAT..All liver lesions remain gone, all Bone Mets are stable/no new growths..I am taking absolutely NO MEDICINE..back working part-time..Please get in touch with me if you have any questions..would love to hear from anyone else, post whipple or treatment for this type of Pancreatic Cancer..

Marcie Reber, RN, BSN, MSM

 

Hello Marcie,

I just read your article in the June 2009 PANCAN newsletter.  I am so glad you are doing well!  As I read, I was AMAZED at the similarities between us...except I am an ugly old boy and you are a beautiful lady!  Ha!  I too, was diagnosed when I was 39 with neuroendocrine tumor of the pancreas...9 years ago this afternoon, as a matter of fact.  I am also an experienced RN who works in a cardiac cath lab area in Texas. As I read your story, it brought back so many memories...of my symptoms, diagnosis and feelings of how I came to realize the reality of my illness.

As you can guess, (hopefully-ha!)  I am alive and doing well!  The only difference in our cases was my tumor was in the mid-tail of my pancreas.  I underwent a resection of my pancreas, splenectomy and cholecystectomy.  I experienced a pancreatic bed abcess post surgery and ended up in and out of the hospital for 5 months of 2000.  God blessed me to have clear margins, with no subsequent treatment.

As an added note, I experienced a diagnosis of malignant melanoma 2 years ago, stage 1a, with clear margins post surgical removal.

From what I gather in your story, we are the same age, same profession, same diagnosis, SAME SURVIVAL! 

Thanks for sharing your story...to those out there who are facing this dreaded diagnosis, THERE IS HOPE FOR SURVIVAL!  My favorite message is to remind folks that "Surviving is about God, Thriving is about me!"  We don't control all of our destiny, but we DO determine the journey along the way!!!

 Dale Golden, RN

Dale..

Let me REALLY make your day..I just had stage one melanoma removed from my ear..simple summer freckles I've had since a kid..!!!!!  I know there is a relationship between pancreatic cancer and skin cancer..but both of us, NOW thats interesting!!!

Marcie Reber, RN

On 6/17/2009 Marcie77 wrote:

 

On 6/16/2009 LuckyD wrote:

 

On 10/14/2008 Marcie77 wrote:

Hello to everyone..

Its been quite some time since I have posted..but wanted to let everyone know, that it has been 18 months since I have had treatment for Non Functioning Islet Cell Carcinoma of Pancreas and I'm doing GREAT..All liver lesions remain gone, all Bone Mets are stable/no new growths..I am taking absolutely NO MEDICINE..back working part-time..Please get in touch with me if you have any questions..would love to hear from anyone else, post whipple or treatment for this type of Pancreatic Cancer..

Marcie Reber, RN, BSN, MSM

 Hello Marcie,

I just read your article in the June 2009 PANCAN newsletter.  I am so glad you are doing well!  As I read, I was AMAZED at the similarities between us...except I am an ugly old boy and you are a beautiful lady!  Ha!  I too, was diagnosed when I was 39 with neuroendocrine tumor of the pancreas...9 years ago this afternoon, as a matter of fact.  I am also an experienced RN who works in a cardiac cath lab area in Texas. As I read your story, it brought back so many memories...of my symptoms, diagnosis and feelings of how I came to realize the reality of my illness.

As you can guess, (hopefully-ha!)  I am alive and doing well!  The only difference in our cases was my tumor was in the mid-tail of my pancreas.  I underwent a resection of my pancreas, splenectomy and cholecystectomy.  I experienced a pancreatic bed abcess post surgery and ended up in and out of the hospital for 5 months of 2000.  God blessed me to have clear margins, with no subsequent treatment.

As an added note, I experienced a diagnosis of malignant melanoma 2 years ago, stage 1a, with clear margins post surgical removal.

From what I gather in your story, we are the same age, same profession, same diagnosis, SAME SURVIVAL! 

Thanks for sharing your story...to those out there who are facing this dreaded diagnosis, THERE IS HOPE FOR SURVIVAL!  My favorite message is to remind folks that "Surviving is about God, Thriving is about me!"  We don't control all of our destiny, but we DO determine the journey along the way!!!

 Dale Golden, RN

Dale..

Let me REALLY make your day..I just had stage one melanoma removed from my ear..simple summer freckles I've had since a kid..!!!!!  I know there is a relationship between pancreatic cancer and skin cancer..but both of us, NOW thats interesting!!!

Marcie Reber, RN

Dear Marcie,

I am 49 and have the exact same diagnosis. Islet N. tumor in

Pancreas and liver. I am currently on a trial drug which is working ok

but interested in your treatments etc. I saw your article in PCAN

you seem to be doing great. Either  email me or call  if you would like

Number is

Thanks,

 Ben

Hi there.

I too had the same tumors and had a whipple 11/19/09.  Slow recovery, but am doing very well.  I posted my full account titled:  My whipple story.  Feel free to read.  Hope it helps!

Mojo!

Susan

I wanted to share our experience with all of you in hopes that it will help someone else. My husband, Ted, was diagnosed with a functioning NET in the pancreas on April 20, 2008. His subtype is glucogon. His first symptoms which were a reaction to the functioning hormones had occured 12 years earlier but as my Doctor said "it just seemed to be an allergic reaction". He was later diagnosed as a diabetic and had unexplained skin rashes all from the cancer but we did nto know that. He has always been in great shape so the diabetes seemed odd. Our local Doctor took Ted's case to a tumor conference...they felt you might be able to operate and remove the large tumor but not the mets to the liver. We went for a second opinion and that Doctor was very negative...he felt Ted was in the later stages and surgery was useless. Since he was suppose to be an expert we went with his approach for 3 months and that was chemo. Ted had Temador and Zeloda. After a very difficult visit with this Doctor where we realized he did not feel Ted could be healed or have a long life we went back to our original Doctor. By then we understood that we needed to try a different approach after reading online. After a very difficult 12 hour surgery during which Ted lost half of his blood, our doctor removed the spleen, cone of the pancreas, and was able to remove the tumor from the small intestine and aorta. He cut off blood supply to the tumors in the liver as he was not able to do any other treatment. That Doctor recommended we just wait and see what happened as this is a slow growing cancer in most cases but Ted had had a cat scan 3 years earlier where nothing showed up and we both felt it may grow slowly but it could speed up as it had in the last 3 years. We got another opinion who again said "wait". Then after reading online we felt New Orleans or Dr Thomas Odorisio in Iowa City were our best bets. We went to Iowa City. Last August and October Ted went to Basil, Switzerland for treatment there as some others on this board have. This is through Dr Odorisio. Our first results were good and we are praying for even better during our visit in September....We still just have those liver mets to get rid of...nothing else has grown back. A few things I would like to say...I personally don't believe you can stage a rare cancer like this as there are not enough cases to know what different situations mean....Find a Doctor who believes you will be healed and is positiive...and with a rare cancer you need an expert...Ted takes a monthly injection of sandostatin to control the hormonal reactions....(the functioning part) but hopefully the treatment in Switzerland will continue to help that. I would be glad to answer any questions....I wish all of you the best and a healthy long life. Our children are young and Ted plans on seeing them graduate from highschool, college and marry. Some patients in Switzerland (from all over the world) had been diagnosed 15 years earlier!

On Jul 10, 2010 3:55 AM CancerFree2010 wrote:

I wanted to share our experience with all of you in hopes that it will help someone else. My husband, Ted, was diagnosed with a functioning NET in the pancreas on April 20, 2008. His subtype is glucogon. His first symptoms which were a reaction to the functioning hormones had occured 12 years earlier but as my Doctor said "it just seemed to be an allergic reaction". He was later diagnosed as a diabetic and had unexplained skin rashes all from the cancer but we did nto know that. He has always been in great shape so the diabetes seemed odd. Our local Doctor took Ted's case to a tumor conference...they felt you might be able to operate and remove the large tumor but not the mets to the liver. We went for a second opinion and that Doctor was very negative...he felt Ted was in the later stages and surgery was useless. Since he was suppose to be an expert we went with his approach for 3 months and that was chemo. Ted had Temador and Zeloda. After a very difficult visit with this Doctor where we realized he did not feel Ted could be healed or have a long life we went back to our original Doctor. By then we understood that we needed to try a different approach after reading online. After a very difficult 12 hour surgery during which Ted lost half of his blood, our doctor removed the spleen, cone of the pancreas, and was able to remove the tumor from the small intestine and aorta. He cut off blood supply to the tumors in the liver as he was not able to do any other treatment. That Doctor recommended we just wait and see what happened as this is a slow growing cancer in most cases but Ted had had a cat scan 3 years earlier where nothing showed up and we both felt it may grow slowly but it could speed up as it had in the last 3 years. We got another opinion who again said "wait". Then after reading online we felt New Orleans or Dr Thomas Odorisio in Iowa City were our best bets. We went to Iowa City. Last August and October Ted went to Basil, Switzerland for treatment there as some others on this board have. This is through Dr Odorisio. Our first results were good and we are praying for even better during our visit in September....We still just have those liver mets to get rid of...nothing else has grown back. A few things I would like to say...I personally don't believe you can stage a rare cancer like this as there are not enough cases to know what different situations mean....Find a Doctor who believes you will be healed and is positiive...and with a rare cancer you need an expert...Ted takes a monthly injection of sandostatin to control the hormonal reactions....(the functioning part) but hopefully the treatment in Switzerland will continue to help that. I would be glad to answer any questions....I wish all of you the best and a healthy long life. Our children are young and Ted plans on seeing them graduate from highschool, college and marry. Some patients in Switzerland (from all over the world) had been diagnosed 15 years earlier!

I am one year in battling goblet cell carcinoid with associated goblet cell carcinomas. Although my cancers originated in my apendix our experiences with treatments and doctor attitudes are very similar. I have recently been seen by Dr. Thomas O'Dorisio for the second time and find him to be very likeable and positive thinking. Last week I had the 24 hr. full body scan to see if reactors are positive to qualify for the Switzerland treatment. We expect the result to be positive since a scan last December indicated as much. Can you please tell me of your experiences in Switzerland as I am a little intimidated by this. Also did your insurance cover any part of this procedure?

On Jul 10, 2010 3:55 AM CancerFree2010 wrote:

I wanted to share our experience with all of you in hopes that it will help someone else. My husband, Ted, was diagnosed with a functioning NET in the pancreas on April 20, 2008. His subtype is glucogon. His first symptoms which were a reaction to the functioning hormones had occured 12 years earlier but as my Doctor said "it just seemed to be an allergic reaction". He was later diagnosed as a diabetic and had unexplained skin rashes all from the cancer but we did nto know that. He has always been in great shape so the diabetes seemed odd. Our local Doctor took Ted's case to a tumor conference...they felt you might be able to operate and remove the large tumor but not the mets to the liver. We went for a second opinion and that Doctor was very negative...he felt Ted was in the later stages and surgery was useless. Since he was suppose to be an expert we went with his approach for 3 months and that was chemo. Ted had Temador and Zeloda. After a very difficult visit with this Doctor where we realized he did not feel Ted could be healed or have a long life we went back to our original Doctor. By then we understood that we needed to try a different approach after reading online. After a very difficult 12 hour surgery during which Ted lost half of his blood, our doctor removed the spleen, cone of the pancreas, and was able to remove the tumor from the small intestine and aorta. He cut off blood supply to the tumors in the liver as he was not able to do any other treatment. That Doctor recommended we just wait and see what happened as this is a slow growing cancer in most cases but Ted had had a cat scan 3 years earlier where nothing showed up and we both felt it may grow slowly but it could speed up as it had in the last 3 years. We got another opinion who again said "wait". Then after reading online we felt New Orleans or Dr Thomas Odorisio in Iowa City were our best bets. We went to Iowa City. Last August and October Ted went to Basil, Switzerland for treatment there as some others on this board have. This is through Dr Odorisio. Our first results were good and we are praying for even better during our visit in September....We still just have those liver mets to get rid of...nothing else has grown back. A few things I would like to say...I personally don't believe you can stage a rare cancer like this as there are not enough cases to know what different situations mean....Find a Doctor who believes you will be healed and is positiive...and with a rare cancer you need an expert...Ted takes a monthly injection of sandostatin to control the hormonal reactions....(the functioning part) but hopefully the treatment in Switzerland will continue to help that. I would be glad to answer any questions....I wish all of you the best and a healthy long life. Our children are young and Ted plans on seeing them graduate from highschool, college and marry. Some patients in Switzerland (from all over the world) had been diagnosed 15 years earlier!

I am one year in battling goblet cell carcinoid with associated goblet cell carcinomas. Although my cancers originated in my apendix our experiences with treatments and doctor attitudes are very similar. I have recently been seen by Dr. Thomas O'Dorisio for the second time and find him to be very likeable and positive thinking. Last week I had the 24 hr. full body scan to see if reactors are positive to qualify for the Switzerland treatment. We expect the result to be positive since a scan last December indicated as much. Can you please tell me of your experiences in Switzerland as I am a little intimidated by this. Also did your insurance cover any part of this procedure?

Hi....you are in great hands as Ted and I just got back from his follow up in Iowa and the cancer is gone from the liver!!!!!! He has something on his adrenal gland but they are thinking this is not cancer which...would make him cancer free. I know it is intimidating but it will not be as bad as you think. The hospital there is very good...stay as close to the hospital as you can as we did not the first time. Most people know English and the Swiss are very nice people, you will find them helpful. We have young children so I did not go with Ted both times...the time I did not go he was late getting in and the people at the motel were so wonderful! After his second treatment Ted was released from the hospital and he and his sisters went hiking up a mountain. His only side effect was a little nausea. Ted go a high dose and did very well. Unfortuantely, my insurance did not cover any of the treatment but it was worth every dime. Some insurances do so I hope yours does. Dr O has some info that you can send so try that.  Best of luck to you! You are at the right place. God Bless!