Patrick Swayze, pancreatic cancer..

[Mackey Mouse]

If you mean like a blood test, I do not believe they have perfected that yet.. My DH's PC was found on an endoscopy.......a routine one we had set up. It was just sitting there in the ampulla vater, not in his pancreas yet.... probably the reason he is doing better than some do with this type of cancer. Night sweats can also be indicative of menopause as I know so well so try not to worry here. I have no idea how old you are but as you start to lose estrogen, night sweats can come your way..

I am so sorry she was gone in 3 months.. that upsets me so as that is what is so deadly with this cancer, you get no warning. Go to those sites, share them with your sisters and read about this type of cancer. Knowledge is power, also it helps when talking to the doctors to know what you are talking about.

How they measure for DH's cancer is they do do a blood test that measures his tumor markings, I forget the code name for it, and also they do periodic CT scans checking his abdomen, his neck, etc. This time they are going to do a PET Scan as well to check his bones as clearly his is in his lymph system...Diagnostically, I do not believe they have a blood test that they do, but I would think that since you and your sisters lost your Mom to this cancer, that your doctors would be listening to your needs. I also have heard that this cancer is familial with melanoma and my husband's father died of melanoma.....he was 88 though when he passed. I would take 88 gladly for my DH..


ps, thanks Julie for giving the blood test the correct name, I can never remember it.

 

[arminnie]

I am so sorry for all of you that are dealing with this.

Stanford (where Patrick Swayze is being treated) is a wonderful institution. I've had gastro surgery there twice (not my horrible gall bladder surgery) and have had many, many gastro tests done there. They are some of the finest doctors in the country - very kind and carrying also.

 

[Mackey Mouse]

I hope he does well with his treatment, it is not an easy treatment to go through and if he had the surgery my husband had......well that is even harder...

 

[DutchsMommy]

Thanks for the info, and julm26 very sorry to hear about your mom. Mackey - I am only 35 so I am thinking it is not likely menopause, but I did do some online research and there are clinical trials going on at Mt Sinai Hospital here in Toronto - mainly looking at the genetic connection with PC. I think I will call the Dr listed and see what I can find out. They are specifically looking for 2 family members affected with PC, but we only know about my mom for sure. Although my Uncle (Mom's brother) who is a Dr has wondered now about their mother who was very young (48 I think) when she suddenly passed. With medical science at that time they really did not know why she died. My mom was also quite young (52) and now that I have a little guy it really worries me to think something could happen to me. So, 'nuf said on a sad topic, but I thank you all for the information and if I find out anything interesting when I speak to the Dr at Mt Sinai I will let you know. Mackey - will be thinking of your family tomorrow - best of luck.

 

[Rustysmom]

When my mom when to the ER with constipation the first time and we heard the awful news that the CT showed pancreatic cancer with mets to the liver and lungs, her oh so caring doctor told me how bad it looked for her and that I should get checked out since it's hereditary.

I'm a little nervous myself because 2 years ago, one of my liver enzymes was a little high and the nurse said "oh, it's probably just a fatty liver" because I'm overweight. I was like what do you mean, JUST a fatty liver? I went on a diet and lost almost 40 pounds after that (which I've mostly gained back due to all the recent stress ) but never went back to get another blood test. Back in October, my Mom had a routine blood test and her liver enzymes were high. Her doctor just said to stop taking Lipitor, but she only took it once in a while, not every day like the doctor thought, and never followed up on it. Little did we know that she had PC. Now I'm imagining everything myself. I woke up with a sore back this morning from sleeping on my old bed at Mom's house. Every time I get a pain, I'm wondering if it's PC.

 

[Mackey Mouse]

35 is young for menopause, I do agree, now pre menopause, I was early 40's when I started losing the beloved estrogen and then of course they threw me on ERT at 44, not good and for 7 years... so I get to worry about other cancers.....DM, my eldest daughter is your age, I wish she would post here, but has a new baby and he is all consuming, but my girls are worried too. They are watching their Dad like hawks and yet have this PC hanging over their heads too.. Hugs to all of you.

I would get as much as information as I can, do whatever I could medically research trials etc......and I once heard that it could skip generations as well....truly they do not know much about this disease as they are not doing enough RESEARCH on it.. and they should.

Hugs all around.. DH is dressed, and it is now my turn so that we get into Boston for his scans... I will post when I get home.. this is his first PET scan which they should be doing all along anyway with this cancer, but then we all know the insurance companies do not want to pay for it.. shame on them, but that is another story.

 

[Mskanga]

For those of you who think 35 is too early for menopause I want to say it IS very possible , it may not be common but is sure is possible. My sister was 35 whe she had her last period , my aunt ( mom's sister ) was 32 , my mom was early 40's and I am 44 right now and I haven't had it for the last two years.
Don't get me wrong , it is a good thing to check things out but what I mean is don't think that because someone is young , it cannot be menopause. Like a friend of mine always tells me ....don't bleed till you are shot .

 

[Torontogal]

My father just passed away from pancreatic cancer only 1 month ago. He was admitted to the hospital end of November. We thought it was kidneys tones, blocked ducts, ulcer, anything but cancer. He had stomach pains, could not eat, chills, and lost weight. In December he was diagnosed with Stage 4 adenocarcinoma pancreatic cancer which metasized to his lungs. It spread to his lungs and finally his liver and kidneys one week before passing. Chemo did not work. My father went into a diabetic coma and died peacefully. He was my hero and I miss him so much. I never thought my father would get such a deadly form of cancer. He never smoked, drank, was a vegetarian. He was a wonderful father. I am so thankful I got to say what I needed to say to him and be with him from day 1. This disease is a death sentence. There is no cure but you can simply buy time if it is caught early.
Anyway, I know there are others on here who have lost dear ones and my heat goes out to all of you. Thanks for reading.

 

[Mackey Mouse]

TG...hugs to you... I am so sorry for the loss of your Dad. I hate those words....adenocarcinoma, ampullary carcinoma, pancreatic cancer, hate them all.

I take my days and his as well, one day at a time, keeping one step ahead of Mr. Death and just trying to live.

 

[TaraPA]

Marsha are you back from DH's scans yet? Do you get the results right away?

My dad's bone scan was "indicitive of suspicious areas elsewhere in the body" whatever that means, PSA prostate test was fine, the Cat Scan showed some small spots on his lungs, but not elsewhere. The MRI results have not come back yet. They make it sound like this is all good so far. They said they will do another Cat Scan in 8 weeks to see if the spots on his lungs have changed & take it from there. I guess it could be worse. I don't really know how to interpret the results!

My Colon Transit Study is done, the doctor didn't call so I'm assuming all was well. I go tomorrow for my bloodwork - I'm wondering now about that test that was mentioned on here - CA 19-9 - it's too late to call my doctor & ask about it, they're closed. I'm wondering if I can request it myself at the lab tomorrow morning. From my lab order, it all looks like routine tests that were ordered.

Hang in there to those of you that recently lost family to PC. It's been almost 2 years that DGF passed away quickly from it & I miss him still. He was 89 so he had a wonderful, long life, but it still hurts!

 

[Mackey Mouse]

Hi....no results yet....we meet with the doctors next week and Tom wants to wait till then.. Me, I want to know as soon as the results are in, and then still meet with them to discuss if he needs further treatment. But this is his to make the decisions on and we will do it his way. I do think that it may take a 4 days to get all tests in and read, chest, pelvic, etc.. they do it on their terms not on our needs.....

Tara, I am not sure what those scans meant either, but I would certainly want to know what they think those spots on the lungs are??? Maybe they want to do another scan in 8 weeks to have a comparison from the one they just did.

I would make a list of questions...do you go with your Dad or does he handle it alone? Anyway, make a list and get those questions answered....I say this all the time, knowledge is power... you need to ask the right questions to get the answers.. My daughters and I ask all the questions.. Tom never questions the doctors as he feels they have his best interest at heart and I truly believe they do, they are wonderful, but I need to know what the options are.

Anyway, keep in touch here and let us know how he is doing..

 

[honeymom]

I am so sorry for all of you who have lost loved ones, or are involved in battles with this dreadful disease. I lost my 40 year old cousin to it just about a year ago. He got the diagnosis and was gone 5 weeks later. It was horrible.

 

[DutchsMommy]

My father just passed away from pancreatic cancer only 1 month ago. He was admitted to the hospital end of November. We thought it was kidneys tones, blocked ducts, ulcer, anything but cancer. He had stomach pains, could not eat, chills, and lost weight. In December he was diagnosed with Stage 4 adenocarcinoma pancreatic cancer which metasized to his lungs. It spread to his lungs and finally his liver and kidneys one week before passing. Chemo did not work. My father went into a diabetic coma and died peacefully. He was my hero and I miss him so much. I never thought my father would get such a deadly form of cancer. He never smoked, drank, was a vegetarian. He was a wonderful father. I am so thankful I got to say what I needed to say to him and be with him from day 1. This disease is a death sentence. There is no cure but you can simply buy time if it is caught early.
Anyway, I know there are others on here who have lost dear ones and my heat goes out to all of you. Thanks for reading.

FYI - I am in Toronto too and they are doing clinical trials at Mt Sinai related to PC and genetics. There is info on the site if you are interested.

 

[Torontogal]

Hi DutchsMommy,
I am sorry to hear about your mom. My father was admitted to the hospital in Nov. and diagnosed in Dec. He passed away 1 month later. He wanted to live so badly and kept asking us about treatment. It was so hard to tell him that chemo was not working.
My father was too weak for any clinical trials. I did not hear there is a genetic component to this disease. I am suspecting there is a huge link with diabetes. My father was Type 2 and suddenly became insulin dependant at a late age (65). I think that should have been a red flag that something was not right with his pancreas. He was 78 when he passed. It is very hard and I miss him so much. It has only been less than 2 months for me.
My father got a second opinion at Princess Margaret. They simply told him to start Gemzar (chemo) which did not work. Please keep me updated on what you find out. I would love to hear more...

FYI - I am in Toronto too and they are doing clinical trials at Mt Sinai related to PC and genetics. There is info on the site if you are interested.

 

[afcgirl]

My dad passed away 6 years ago from pancreatic cancer. He was way too young. It is a horrible disease.

I agree that there is not enough information out there about it, especially since it is so common and so deadly. I thought Katie Couric might take up the cause when her sister died of it, but it seems she is focused only on colon cancer.

I am very sorry for Patrick Swayze and his family. It is truly a nightmare to live through.

 

[Mackey Mouse]

I think back when they said the words ampullary carcinoma, falls under pancreatic cancer, as it is quite rare.....To me, it means now, cancer found in the ampulla vater before it goes into the pancreas....meaning found early. The treatment is the whipple procedure and then keep hitting the patient with chemo and radiation when it comes back. They have no other options, that and surgery...hence there needs to be more research..

When DH was diagnosed we did not realize how serious this was, we had no time, he was being operated on immediately within diagnosis and then we dealt with the aftercare....now that was something. We had a visiting nurse twice a week....big deal, it was full time care that my daughters and I did and we were novices then. I will not go into how hard it was to take care of someone who has this surgery....drains for months, it was bad.

Anyhow, my point I am making, is now everywhere I turn I hear Pancreatic cancer... I do hope that Patrick can bring a face to this cancer and help with raising money for testing and more awareness...It is a bad one....Someone once told me that a big corporation was approached to help bring this one out in the open, and they said we really do not want to be involved it is not a happy cancer.

Dear God, sometimes I am shocked how ignorant people can be, of course it is not a happy one, the patient is in the battle for his life. Without research, it is like fighting a battle with one hand tied behind your back.. People need to help people..

Enough from me this morning....we will have scan results next week and hopefully we get a bit of a reprieve..........it would be nice.

 

[TaraPA]

I agree with you 100%!

So what is a PET scan? My dad, after having a bone scan, Cat Scan, PSA test, MRI & bloodwork is now being sent for more bloodwork & a PET scan tomorrow. They cannot find what these spots, or bone lesions as they are calling them, are from. They're seen spots on his pelvis, spine & lungs so far in the last 10 days. It seems they are going round & round - can't they determine something from all these tests? I'm just frustrated. They sent him to a rheumatologist yesterday & they said it's definitely not arthritis related, or anything muscular.

 

[Mackey Mouse]

http://www.radiologyinfo.org/en/info.cfm?pg=PET&bhcp=1

Be thankful they have ordered this one for him, it is probably the cadillac of tests and insurance companies hate to pay for them. I hope that from this scan they can tell you what is going on with him, it is that good.

This is DH's first pet scan.....having PC for 3 years, this is the first time we have had this test. For some reason, they prefer to do CT Scans, but not everything shows up all the time. Pet Scan is the way to go..

 

[TaraPA]

Thanks soooo much for that link, now I understand it. Looks like if they don't diagnose something from the PET scan, they may be baffled as to what is going on. We're all going on vacation together on Monday for 9 days, so hopefully he'll get the results before we head out!

 

[Mackey Mouse]

And Tara, have a great trip when you go... and here's hoping it is nothing... absolutely nothing. Benign...no big deal.. I have that in my prayers for you.