Amandako

On Jul 11, 2012 3:05 PM rose2617 wrote:

My husband was recently diagnosed at age 57. He also has liver mets. That means no surgical options and Stage IV. Like your Dad, no symptoms and feels fine. He has just started this week with a chemo cocktail called Folfironox. If your Dad has no other health issues then this is the best chemo option available. It is a difficult treatment, is new, but clinical trials found it doubles the life span as long as one is able to stay on the chemo. Sadly, it still is not very long. The average is 6mo, on folfironox a year. Now that is an average. Some have made it longer, up to 2yrs. It all depends on the person. Once the PC has broken out and travelled the blood stream it can be anywhere. Our Dr said that having a pet scan to find out will only increase our stress levels. We are in a state of shock here. 

Prayers for you and yours Rose. It is a shock. My dad had some heart issues a year and a half ago and all blood work at an extensive ultrasound came back clear. It's amazing that a cancer of this kind can form and spread SO FAST! He got his port put in last Thursday and started his first Chemo with Gemcitabine on Friday. He will also be taking Tarceva by mouth which a grant was available for help paying for the drug thank God! It's $5,000+ a month! The more I learn about this disease the more I wonder why there is not more research. A cancer that is soooo bad and sadly so underfunded. I wish I could have learned about this another way but from now on I do intend to try and get the word out and donate money regularly for reasearch. I did log onto Pancan and you can sign up for them to send you a real nice package of information on the cancer for free. Also they have a place where you can send letters to congress about research money etc.

Thank you so much. It's so nice to have a place like this to go and just talk to someone. I will check out the link you sent me. I'm very glad that you're was caught early. Thanks again, Amanda

Thank you for the reply. He has an appointment Monday to discuss the port for Chemo, I'm going to go with him and my mom. My mom went with him last time. It was just weird because everything I've read is so bad. They seemed to have been more hopeful after the appointment. His doctor is very highly regarded. I guess at the time the best news is that both his liver and pancreas they said are functioning properly. If you don't mind me asking how are your treatments going? Are you experiencing bad side effects? 

He's decided to go ahead to do chemo.

My dad is 68 years old and in good health. He had a colonoscopy that came out fine but they found something in his CT scan. It now appears that he has 2 masses on his pancreas and 5 lesions on his liver. They said it appeared to be secondary cancer on his liver from the pancreas. At the time he has NO symptoms of the cancer and looks so good. Everything I read about pancreatic cancer is just an utter horror story. He had his first appointment at the cancer center and it's inoperable they will be doing Chemo soon. I just want an idea as to how much time someone in this type of situation might have. I want him to have hope but I feel like the doctors are sugar coating this instead of just giving it to us straight. I know that only God knows when it's your time. And I'm fine with that. I just want some kind of idea what to expect with this. So far it seems like he has not got that from his doctor.

My dad was also just diagnosed about a week ago. My parents live an hour away. And I too am totally overwhelmed. Gemcitabine is what they have said they will do for my dad. I've reasearched like crazy on the computer since all this happend. I've read good things about Folfirnox but I read some where that you could not drink anything cold for a period of time after having it. Which for me would be very hard to do. My dads is also in his liver. 

Our doctors have not been so blunt as to how much time he has or anything like that. Which is hard too. I want him to have hope but at the same time I don't want it to be sugar coated. In your dads situation I've read a lot about Pallitave care which unlike hospice you get chemo and treatment but you are monitored for pain and basically kept in as much comfort as possible. 

I too am just learning about all this stuff. I don't have any great advice but anytime you need someone to talk to I'm here for you. I will be praying for you and your family.

On Jun 28, 2012 6:59 PM puddy wrote:

i also started my journey in september. surgery in november because of a diagnosis of stage lll  and the fact that i am probably older than others on the board i chose not to have chemo . it isn't an easy decision and one that i made with my physician and my family. The statistics are not very encouraging no matter what course one takes.  I am 7 months out now and doing fine so far.It "" target="_blank" rel="nofollow">http://far.It " target="_blank" rel="nofollow">far.It 's a shame other cancers take priority over the pc. We could use some good news on cures too.  i am on your side and will pray for your continued remissions.

If you don't mind me asking how old are you? My dad who is 68 was just diagnosed and they were offered a chance at a clinical trial but he'd have to wait 4 weeks and could still be turned down for it. They've decided to start Chemo and opt out of the trial. I'm amazed as I've started learning about this cancer how little money is spent on research for it. I agree about the statistics. I've read where so many people have said they wish they could go back and not put their loved on through Chemo because while in some cases it prolonged their life it did not help the quality. So glad to find this site. Praying for you all. 

My dad had his first appointment yesterday at the Canecer Center. He has 2 masses on his pancreas and what appeared to be secondary cancer in his liver. He's 68 and in good health. They said his pancreas and liver are both functioning properly at the time and he shows no signs of the cancer. It was found in a CT scan. They told him he might be able to participate in a double blind chemical trial. He would get the normal chemo he would have otherwise gotten with 2 chances to get the new drug GS-6624. One person out of 3 is given a placebo and the patient and doctor does no know what you are getting. Sorry to ramble... My mom is not sure what to do. It's scary. I'd love to know what others thoughts are when it comes to clinical trials? Is it something you would do?......

On Jun 27, 2012 9:42 PM cindyh wrote:

On Jun 27, 2012 8:35 PM Amandako wrote:

On May 24, 2012 8:48 PM cindyh wrote:

Hi All! I'm newly diagnosed and still contemplating treatment options.  I have been told that surgery is out due to my mass being on my tail and over the spenic veins etc.  Also told that radiation is out due to the spread into my liver and stomach linings.  Has anyone had surgery or radiation in spite of the above?  I hate the thought of chemo almost as much as having cancer.  Would also love to hear about alternatives to chemo, and helpful chemo treatments.  Thank you in advance for any responses! Warmly,  Cindy H

Cindy, my prayers are with you. If you don't mind me asking how are you doing now? My dad was just diagnosed with the same. 

Hi Amandako,

I just had my 3rd gemzar treatment.  Side effects have been ok....much better than they could have been with other more agressive chemo's.  My worst day is 2 days after my chemo....naseaus, weak, exhausted, constipated, 'fluish'.  I happen to get acupuncture on that day and seem to 'bounce back" well.  My problem is having a hard time taking it easy on thurs and friday.  I'm sure if I limited my activity on those days it would help.  My cancer is also mat. to my stomach lining, lungs, and some lymph nodes.  I am 55 and in good health other than this d*** cancer....those things are all on my side. I won't get a cat scan again until I finish my next round of chemo which will be in a month...that will be the real indication of how the chemo is working.  How about your dad?  How is his health, age, etc.  I'll put you both in my prayers!!

Waiting is the worst. I hope you find out the Chemo is working! My dad is 68 and had a tripple bypass and stents put in 2 years ago. He went to the dr. because he was having some pain in his side. They did a colonsocopy which came out good and then did a ct scan where they then found the spots. He had his first appointment at the cancer center today and although they can not operate they said he may be able to participate in a clinical trial. Will be praying for you all. So glad to find this site. It's nice just to be able to talk sometimes. God Bless :)

Prayers and blessing for you and your sister.