Educate Me

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Educate Me

by Meleroni on Thu Mar 01, 2007 12:00 AM

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Hi,

 I am inquiring about my mom. Our world fell apart 2 days ago when the Dr. phoned her @ home and said he saw a mass on her pancreas and several tumors on her liver. He advised a pancreatic tissue biopsy and she had that terribly awful painful thing done to her this a.m. My mom is only 58. She eats right, exercises, and has mild complaints as of recently of abdominal pain, bloating, indigestion. AND ..this is what we find. I'm not ready to lose my mom. I'm only 34!!! We are currently awaiting the results of the biopsy within the next few days....somebody please fill me in on this terrible cancer. Any hope that my mom can beat it???What's the best treatment??? WE all love her and she has so many years left on this earth. 

Thanks,

Melanie 

RE: Educate Me

by uj on Thu Mar 01, 2007 12:00 AM

Quote | Reply

Hi, 

I am truly sorry to hear about your mom.   You may want to look at this site:

http://pathology.jhu.edu/pancreas%5Fchat/ 

From what I've noticed, a lot of patients/caregivers who are part of the board are very helpful and shares a lot of their experiences regarding treatment.

You can also look at this site: www.pancan.org

I hope this helps.

UJ 

  

RE: Educate Me

by Beebes on Sat Mar 03, 2007 12:00 AM

Quote | Reply

My Mom had the exact same symptoms and was diagnosed October of 2005 with adenocarcinoma of the pancreas and metastisis to the liver. I am also 34 years old. I know how you feel. I wish that I could say things had gone well. She passed away on October 23, 2006 at the age of 57.I can feel your pain because I have lived it. I hope beyond all else that your Mom does not have this devastating disease.

 I spent a year researching every single option there was. The learning curve for this disease is extreme. You feel like you have so many decisions and so much that you need to research and yet you have no time. I think there are some things that I learned which may be helpful.

The first thing is to find a doctor who is willing to work with you. Our first experience with a doctor after my Mom was diagnosed was very negative. He told my Mom that she should go home and die peacefully. They gave my Mom 6 months. She lived almost a year. During that time she saw 2 daughters get married, one graduate from high school, and three grandchildren come into the world. She moved my sister into her dorm for her freshman year at college 1 month before she passed away. Time is precious - even when your time is short. She fought every minute. I know that she desperatley didn't want to leave, but she was there for some extremely important events. I do not think she would have been if she had taken the advice of her first doctor.

 The second thing is to go to a comprehensive care hospital. By this I mean a large cancer center. They have better access to new therapies and off label treatments (for example - using a chemo that is not specifically listed for pancreatic cancer use). We found that our local oncologist was very willing to work with oncologists from other hospitals. My mom lived in a rather small town. Don't be afraid to ask questions and to ask if your local oncologist can cooperate with a doctor from another hospital. Don't be afraid to petition your insurance to pay for therapies not specifically made for pancreatic cancer.

Put together a notebook that lists all treatments. Ask for any reports and keep them with you when you go see other specialists.

Try to keep your Mom eating! My mother got so many books on diets to cure cancer from well meaning friends. The only problem is that pancreatic cancer throws your metabolism into hyperdrive. I answered another post about a Dr. Bruckner below this post. He is a very good doctor who we saw at the end of my mother's treatment. I hope you will read that post as well. He said that fast food or whatever sounded good was the best thing for pancreatic cancer patients because they basically need high carb and high fat. Most pancreatic cancer patients starve to death because they stop eating. I didn't think that would happen to my Mom. She was 181lbs when she started and joked with the doctors who told her to keep her weight on. She said "You mean I don't even get to be thin." Eight months into her illness she was down to 131 which she maintained until the month before she passed. The day she passed she weighed about 85lbs. You should look into Pro-sure which is made specifically for cancer patients. It is only available on line through the folks who make Ensure. Dr. Bruckner also advised my Mom take Tagamet to help with eating, and it did help a bit.

 The one thing that I am sad we did not do was get on a drug called Rexin-G. My mother tried all sorts of chemo. She did Avastin, Gemzar, Xeloda, Oxaliplatin, Lecouverin, Irinotecan. They were successful to a point, but the cancer always mangaged to get around whatever chemo they threw at it. Rexin-G is gene therapy. It is made by Epeius Biotechnologies and is in a clinical trial at the Mayo Clinic in Rochester MN under a Dr. Galanis. They have some really exciting trial info from Japan and the Philippines. What I liked about this drug was that it has very few or even no side effects and it attacks the more aggressive cancers the best. I spoke with several people who have actually taken the drug and who have seen results from it. I also spoke many times with one of it's creators, Dr Gordon. She explained that the goal was not necessarily to cure cancer but to manage it indefinately - much as they do with the AIDS cocktail. So you might have cancer your whole life, but it would never get to the point where it could take over. I learned about the drug in May of 2006 but we didn't decide to do it until August of 2006 and my mother got too sick too fast. I wish that we had tried to get to the Mayo back in May but it was all so scary to think about leaving home. It might be something for you to look into at the beginning of your journey. 

 I hope I am writing this for nothing. I hope you never need to use this information. But if you do it is so important not to give up hope. There was one clinical trial that stood between people dying of AIDS and people living with it. You never know what is around the corner. You never know how your Mom will respond, and miracles do happen.

 Jessie - please let me know if I can be of any further help to you

 

 

RE: Educate Me

by Meleroni on Sat Mar 03, 2007 12:00 AM

Quote | Reply

 

On 3/3/2007 Beebes wrote:

My Mom had the exact same symptoms and was diagnosed October of 2005 with adenocarcinoma of the pancreas and metastisis to the liver. I am also 34 years old. I know how you feel. I wish that I could say things had gone well. She passed away on October 23, 2006 at the age of 57.I can feel your pain because I have lived it. I hope beyond all else that your Mom does not have this devastating disease.

 I spent a year researching every single option there was. The learning curve for this disease is extreme. You feel like you have so many decisions and so much that you need to research and yet you have no time. I think there are some things that I learned which may be helpful.

The first thing is to find a doctor who is willing to work with you. Our first experience with a doctor after my Mom was diagnosed was very negative. He told my Mom that she should go home and die peacefully. They gave my Mom 6 months. She lived almost a year. During that time she saw 2 daughters get married, one graduate from high school, and three grandchildren come into the world. She moved my sister into her dorm for her freshman year at college 1 month before she passed away. Time is precious - even when your time is short. She fought every minute. I know that she desperatley didn't want to leave, but she was there for some extremely important events. I do not think she would have been if she had taken the advice of her first doctor.

 The second thing is to go to a comprehensive care hospital. By this I mean a large cancer center. They have better access to new therapies and off label treatments (for example - using a chemo that is not specifically listed for pancreatic cancer use). We found that our local oncologist was very willing to work with oncologists from other hospitals. My mom lived in a rather small town. Don't be afraid to ask questions and to ask if your local oncologist can cooperate with a doctor from another hospital. Don't be afraid to petition your insurance to pay for therapies not specifically made for pancreatic cancer.

Put together a notebook that lists all treatments. Ask for any reports and keep them with you when you go see other specialists.

Try to keep your Mom eating! My mother got so many books on diets to cure cancer from well meaning friends. The only problem is that pancreatic cancer throws your metabolism into hyperdrive. I answered another post about a Dr. Bruckner below this post. He is a very good doctor who we saw at the end of my mother's treatment. I hope you will read that post as well. He said that fast food or whatever sounded good was the best thing for pancreatic cancer patients because they basically need high carb and high fat. Most pancreatic cancer patients starve to death because they stop eating. I didn't think that would happen to my Mom. She was 181lbs when she started and joked with the doctors who told her to keep her weight on. She said "You mean I don't even get to be thin." Eight months into her illness she was down to 131 which she maintained until the month before she passed. The day she passed she weighed about 85lbs. You should look into Pro-sure which is made specifically for cancer patients. It is only available on line through the folks who make Ensure. Dr. Bruckner also advised my Mom take Tagamet to help with eating, and it did help a bit.

 The one thing that I am sad we did not do was get on a drug called Rexin-G. My mother tried all sorts of chemo. She did Avastin, Gemzar, Xeloda, Oxaliplatin, Lecouverin, Irinotecan. They were successful to a point, but the cancer always mangaged to get around whatever chemo they threw at it. Rexin-G is gene therapy. It is made by Epeius Biotechnologies and is in a clinical trial at the Mayo Clinic in Rochester MN under a Dr. Galanis. They have some really exciting trial info from Japan and the Philippines. What I liked about this drug was that it has very few or even no side effects and it attacks the more aggressive cancers the best. I spoke with several people who have actually taken the drug and who have seen results from it. I also spoke many times with one of it's creators, Dr Gordon. She explained that the goal was not necessarily to cure cancer but to manage it indefinately - much as they do with the AIDS cocktail. So you might have cancer your whole life, but it would never get to the point where it could take over. I learned about the drug in May of 2006 but we didn't decide to do it until August of 2006 and my mother got too sick too fast. I wish that we had tried to get to the Mayo back in May but it was all so scary to think about leaving home. It might be something for you to look into at the beginning of your journey. 

 I hope I am writing this for nothing. I hope you never need to use this information. But if you do it is so important not to give up hope. There was one clinical trial that stood between people dying of AIDS and people living with it. You never know what is around the corner. You never know how your Mom will respond, and miracles do happen.

 Jessie - please let me know if I can be of any further help to you

 

 


 

Thank you Beebes for all of your information. I am truly sorry about your mom. I am very saddened to say that is what the CTSCAN diagnosed my mom as having adenocarcinoma. We did the pancreatic biopsy on Friday and we're supposed to get results by TUESDAY. THIS seems like forever and like we're wasting precious time before we even act. My moms suffering is starting to increase. She is complaining of a "hairball" feeling caught in the the middle of her belly and is sleeping in her recliner to maintain a comfortable feeling. She wishes they could remove the pancreas and treat the liver with chemotherapy and then ablate the lesions or remove them. Was this an option for your mom? I've started doing alot of research and the mass in her pancreas is in the tail end. USUALLY, it could be surgically removed, but I'm unsure now that the the cancer has spread. We're hoping to get to MD ANDERSON for tx. options. We're in La. there in Texas.

Also, I'm not sure how much my mom is willing to go through to fight this deadly disease. I empathize and understand, but the selfish part of me doesn't want to see her go. I also don't want her last months on earth to be pain ridden. Doesn't look like I'll get that wish though. I think the last time I saw my mom healthy and feeling healthy is the minute before she got this news. THE word CANCER scares the heck out of you and your world as you used to know it is gone forever.

 THanks Again.

Melanie

RE: Educate Me

by Beebes on Sat Mar 03, 2007 12:00 AM

Quote | Reply

Yes, it's true, everything does change. It's like waking up in a nightmare. I felt like we were being chased by some awful thing that we could not escape. I am so sorry. But no matter what there is always hope. Some people respond very differently to the treatments. There is a place on the Pan Can website for survivors. Their stories bring a lot of hope. Many of them had the Whipple procedure which my Mom was not a candidate for. But there are some who are either cured or living way past 1 year with the disease. They are the exception, not the norm. But there is no telling whether your Mom will be the norm.

 One thing that is very very common for people diagnosed with pancreatic cancer is that they get very depressed. A lot of doctors put them immediatly on an antidepressant. I don't know if the have offered this to your Mom.

MD Anderson is a wonderful cancer center. They have a lot of doctors there who are pancreatic cancer specialists. The more brains the better!

My mom never wanted to go far from home. For us going to Dr. Bruckner was a 6 hour drive and even that was too far for her comfort. But he has many patients that he has managed way past the first year through a constant series of chemotherapies. I know of one in particular who has gone back to work and who has a pretty good quality of life.

Which reminds me, I forgot to mention is that there was a study done on people who recieved treatment for pancreatic cancer. Those that did the best were those who had constant monitoring of their disease and who switched from one therapy to another as soon as the first one failed. Our oncologist back home always suggested that 3-4 months go by between catscans. We quickly realized that they needed to happen every 6 weeks or so, so that we could change therapies when one got around the cancer. That is very important!

Lastly, I would check out the Mayo clinic study on Rexin-G. The last time I talked to the folks running that study they were having very positive results. We never made it that far. I have read copiuos studies on chemo and the end result was always the same. This treatment is different because it attacks the cancer cells in the blood before it even lands on the organs and causes the cell to stop dividing. It attacks the most rapidly dividing cells first. The downside is that unless you get it through the Mayo trial (or they have one in California as well)  it is insanely expensive because it has not yet been through all of the trials it needs to go through. It's at least worth looking at.

I hope that they will be able to do surgery on your Mom. I'm pretty sure that they will say it isn't an option if your Mom has lesions in her liver. Unfortunately they refuse to do the surgery once that has happened. I always just wanted them to take it out. That was our main goal, to beat back the cancer so they could take it out. But I think if they put your Mom through that very serious surgery they will have to wait a month or two before continuing with chemo (In order to allow your Mom to heal from the surgery) and by that time the cancer will have taken over. At least that is how I understood it.

I am praying for your miracle.

Jessie

RE: Educate Me

by Wunderchu on Wed Mar 07, 2007 12:00 AM

Quote | Reply
"Rexin-G(TM), The World's First Tumor-Targeted Gene Therapy Vector, Stymies Metastatic Cancer"

http://www.medicalnewstoday.com/medicalnews.php?newsid=56021

RE: Educate Me

by Meleroni on Wed Mar 07, 2007 12:00 AM

Quote | Reply

 

On 3/3/2007 Meleroni wrote:

 

On 3/3/2007 Beebes wrote:

My Mom had the exact same symptoms and was diagnosed October of 2005 with adenocarcinoma of the pancreas and metastisis to the liver. I am also 34 years old. I know how you feel. I wish that I could say things had gone well. She passed away on October 23, 2006 at the age of 57.I can feel your pain because I have lived it. I hope beyond all else that your Mom does not have this devastating disease.

 I spent a year researching every single option there was. The learning curve for this disease is extreme. You feel like you have so many decisions and so much that you need to research and yet you have no time. I think there are some things that I learned which may be helpful.

The first thing is to find a doctor who is willing to work with you. Our first experience with a doctor after my Mom was diagnosed was very negative. He told my Mom that she should go home and die peacefully. They gave my Mom 6 months. She lived almost a year. During that time she saw 2 daughters get married, one graduate from high school, and three grandchildren come into the world. She moved my sister into her dorm for her freshman year at college 1 month before she passed away. Time is precious - even when your time is short. She fought every minute. I know that she desperatley didn't want to leave, but she was there for some extremely important events. I do not think she would have been if she had taken the advice of her first doctor.

 The second thing is to go to a comprehensive care hospital. By this I mean a large cancer center. They have better access to new therapies and off label treatments (for example - using a chemo that is not specifically listed for pancreatic cancer use). We found that our local oncologist was very willing to work with oncologists from other hospitals. My mom lived in a rather small town. Don't be afraid to ask questions and to ask if your local oncologist can cooperate with a doctor from another hospital. Don't be afraid to petition your insurance to pay for therapies not specifically made for pancreatic cancer.

Put together a notebook that lists all treatments. Ask for any reports and keep them with you when you go see other specialists.

Try to keep your Mom eating! My mother got so many books on diets to cure cancer from well meaning friends. The only problem is that pancreatic cancer throws your metabolism into hyperdrive. I answered another post about a Dr. Bruckner below this post. He is a very good doctor who we saw at the end of my mother's treatment. I hope you will read that post as well. He said that fast food or whatever sounded good was the best thing for pancreatic cancer patients because they basically need high carb and high fat. Most pancreatic cancer patients starve to death because they stop eating. I didn't think that would happen to my Mom. She was 181lbs when she started and joked with the doctors who told her to keep her weight on. She said "You mean I don't even get to be thin." Eight months into her illness she was down to 131 which she maintained until the month before she passed. The day she passed she weighed about 85lbs. You should look into Pro-sure which is made specifically for cancer patients. It is only available on line through the folks who make Ensure. Dr. Bruckner also advised my Mom take Tagamet to help with eating, and it did help a bit.

 The one thing that I am sad we did not do was get on a drug called Rexin-G. My mother tried all sorts of chemo. She did Avastin, Gemzar, Xeloda, Oxaliplatin, Lecouverin, Irinotecan. They were successful to a point, but the cancer always mangaged to get around whatever chemo they threw at it. Rexin-G is gene therapy. It is made by Epeius Biotechnologies and is in a clinical trial at the Mayo Clinic in Rochester MN under a Dr. Galanis. They have some really exciting trial info from Japan and the Philippines. What I liked about this drug was that it has very few or even no side effects and it attacks the more aggressive cancers the best. I spoke with several people who have actually taken the drug and who have seen results from it. I also spoke many times with one of it's creators, Dr Gordon. She explained that the goal was not necessarily to cure cancer but to manage it indefinately - much as they do with the AIDS cocktail. So you might have cancer your whole life, but it would never get to the point where it could take over. I learned about the drug in May of 2006 but we didn't decide to do it until August of 2006 and my mother got too sick too fast. I wish that we had tried to get to the Mayo back in May but it was all so scary to think about leaving home. It might be something for you to look into at the beginning of your journey. 

 I hope I am writing this for nothing. I hope you never need to use this information. But if you do it is so important not to give up hope. There was one clinical trial that stood between people dying of AIDS and people living with it. You never know what is around the corner. You never know how your Mom will respond, and miracles do happen.

 Jessie - please let me know if I can be of any further help to you

 

 


 

Thank you Beebes for all of your information. I am truly sorry about your mom. I am very saddened to say that is what the CTSCAN diagnosed my mom as having adenocarcinoma. We did the pancreatic biopsy on Friday and we're supposed to get results by TUESDAY. THIS seems like forever and like we're wasting precious time before we even act. My moms suffering is starting to increase. She is complaining of a "hairball" feeling caught in the the middle of her belly and is sleeping in her recliner to maintain a comfortable feeling. She wishes they could remove the pancreas and treat the liver with chemotherapy and then ablate the lesions or remove them. Was this an option for your mom? I've started doing alot of research and the mass in her pancreas is in the tail end. USUALLY, it could be surgically removed, but I'm unsure now that the the cancer has spread. We're hoping to get to MD ANDERSON for tx. options. We're in La. there in Texas.

Also, I'm not sure how much my mom is willing to go through to fight this deadly disease. I empathize and understand, but the selfish part of me doesn't want to see her go. I also don't want her last months on earth to be pain ridden. Doesn't look like I'll get that wish though. I think the last time I saw my mom healthy and feeling healthy is the minute before she got this news. THE word CANCER scares the heck out of you and your world as you used to know it is gone forever.

 THanks Again.

Melanie


 

RE: Educate Me

by Redstar on Tue May 29, 2007 12:00 AM

Quote | Reply
This cancer is quick! You mansioned hairball. Keep up the water intake its important. No food my become the norm. Its not the eating that me painful but, the full stomach pushing on the pancrease.  Cancer Treatment Center Of America is where we have experienced. They are great as well!  They deal with the person as a whole. Mind, body and spirit. They access your situation and let you know where you are and you make the calls with them. There are professionals there for things besides cancer. They have nutritionists, surgeons, pain control, and a perfessional to get your mind straight through it all. They line up in front of you and address who they are and what they do. Then they ask who do you want to talk to. You choose the people you need when your there. Nurses are exellent on all levels and they have all that you will need onsite. Test results are back by far faster then if you were to stick with home town hospital. I have never herd of a good outcome with PC when someone stuck with home town hospital. Definaltly in what ever you do make sure to find a hospital that specializes in cancer. Good luck to you.
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