OT: Pancreatic cancer - Goodbye to my father
- Thread starter wbcincy
- Start date
I have been doing great. All of my tests following surgery were very good. I have continued exercising 7 days a week (both weight lifting and cardio) and feel better than I did 15 years ago. Zero problems at this time.
I have done a reasonably good job changing my diet. I have easily, pretty much eliminated beef (thank god for chicken) and am eating more fruits and vegetables. There is one study that says that eggs are a potential cause of colon cancer and several that say that eggs increase the risk of prostrate cancer. Scrambled eggs get me started in the morning, and although I have reduced my egg consumption, which is comparatively large, it is not as much as I would want to.
Thanks very much for asking.
Pancreatic Cancer is called the “Silent Killer” and I know from first hand experience. My wife
complained of a Bad Headache on Nov 30 and said she never got headaches. Finally after 6
hours I convinced her to go to the ER where they initially found pulmonary embolisms,or clots
on the lungs. No big deal, put her on blood thinner and said she would probably go home the
second morning. However the Bad Headache came back that morning and a scan revealed
a growth on the Pancreas, spots on the liver, and one kidney. Clots were going to her brain and
shutting down her motor skills and impacting her cognitive functions. She went to hospice the
next day but right before she summoned the will and the strength to say she loved me. It was
a gift from God and the last thing she said. She passed 3 days later or a week in total. She had
not exhibited any signs of a problem prior and the suddenness was hard to grasp. While I was
Blessed to have her in my life I miss her terribly.
My thoughts and Prayers to your family.
complained of a Bad Headache on Nov 30 and said she never got headaches. Finally after 6
hours I convinced her to go to the ER where they initially found pulmonary embolisms,or clots
on the lungs. No big deal, put her on blood thinner and said she would probably go home the
second morning. However the Bad Headache came back that morning and a scan revealed
a growth on the Pancreas, spots on the liver, and one kidney. Clots were going to her brain and
shutting down her motor skills and impacting her cognitive functions. She went to hospice the
next day but right before she summoned the will and the strength to say she loved me. It was
a gift from God and the last thing she said. She passed 3 days later or a week in total. She had
not exhibited any signs of a problem prior and the suddenness was hard to grasp. While I was
Blessed to have her in my life I miss her terribly.
My thoughts and Prayers to your family.
Dupage, if you've told this story before on the board, I don't recall it. What a tragic story. A week from headaches to passing away? Not many encounter a situation like that.
You have my deepest sympathies.
Good luck to you and your Dad. My Dad passed earlier this summer and it's a hard thing. But just like your Dad, mine was the best guy I ever knew. By a WIDE margin.
Wish I had some magic advise, but I am no medical professional. The only thing I can tell you that made it easier for me, and in many respects for him, is to remain positive, and educate yourself as much as you can on his physical condition and medications. Spend as much time with him as you can watching games and taking him out to dinner with other members of your family. Stay overnight at the house on occasion if a game runs late or if you know you'll have to shovel snow in the morning.
I can't emphasize enough how much a positive attitude helps, and how much it helps to be fully educated on whatever medications he is taking. Sometimes the medications are worse than the disease.
Good luck to you and your Dad. You are both in my prayers.
My ex-wife's father had pancreatic cancer...from what I remember it can also be very painful. He had a procedure done, where he had surgery to cut the nerve going to the pancreas. This helped quite a bit in dealing with the pain and discomfort. Thoughts and prayers your way...
One thing for sure, you’re going to be there for him, come what may, and he’s going to take great comfort from that fact. He’ll look at you and know he did well while he was here.
Cincy, I remember a post you made in reference to Tim Shaw's battle with ALS. You said something like you wish you had his strength. I replied that you may have it and it would show if you were tested. Something tells me you are passing this test.
A couple of days before my father passed my sisters and I were with him and he decided that he had something to say to all of us, collectively. He was tired so I told him, "Dad, whatever needs to be said has already been said." My stepmother told me later that he took great comfort from those words, that after hearing this he indeed felt that he'd done and said all he could for us, so that was the right thing for me to say. But, damn, I can't tell you how many times I've wished that I'd let him speak his mind one last time.
My sincere thoughts and prayers for you and your Dad, Cincy. I hope that it turns out it was just a little tumor on the pancreas, and that there was no spread. PC is one of the worst cancers, but I DO have a friend who is in remission after contracting it. I know next to nothing about his circumstances, other than the fact that they somehow diagnosed it early on. So it is possible to beat it.
Your words seemed right to you at the time and they are right for all time. You spoke from the heart. I believe your stepmother echoed your Dad's feelings. He was comforted and in his final days that is what mattered most.
Wbcincy- I don’t know your family’s situation but if it comes to surgery I know Hopkins in Baltimore and Thomas Jefferson University hospital in Philly are very good medical centers with experience in PC/ Whipple surgery.
There’s a pancreatic cancer network on line that is run by people who have gone through this (IIRC). I don’t know a lot about them but they were a source of info for us and can even send you the number of pancreatic surgeries for all the med centers in your area (or anywhere in the country). Just ask them what you’d like. Good luck.
https://www.pancan.org/facing-pancreatic-cancer/patient-services/
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WBCincy: Another thing to prepare for. If there are alternative procedures for dealing with your father's condition, those who practice each particular method will most likely try to sell you on their own method.
For instance, my polyp (containing an encapsulated tumor only found after the surgery) could have been removed by a snare, which would have required 2 snare procedures. I was told by the surgeon and the snare doctor that one disadvantage of the snare was that it was possible that a little bit of the polyp would be left on my cecum. The disadvantage of surgery was that it would take 6 weeks of recovery. (turned out not to be painful at all, but had to be careful of not ripping up the stitches for 6 weeks.)
I leaned toward the surgery because it would be over in one procedure. Came to this board and everyone agreed with me. What was left out by the surgeon and the snare doctor was that the surgery enabled the docs to get a really good tissue sample (4 inches of my cecum) to check whether my cancer had spread. I had the surgery, and they checked 20 lymph nodes and found none.
If I had undergone the snare procedure and a little bit of my polyp was still there, I would have faced a really difficult choice of whether to have an operation to take out the whole of the polyp. I know I would have been told that the chances of cancer were small, but that they couldn't guarantee that there was some remaining cancer in the small leftover polyp tissue. The snare doc was trying to sell me on his procedure by saying that the surgeon hadn't kept up with the times and didn't know how sophisticated the snare procedure was. (I immediately considered this to be BS but kept my mouth shut.) I am REALLY happy that the docs could get a good tissue sample and do a very thorough job of analyzing biopsies, and lucky for me, not finding any problems.
For instance, my polyp (containing an encapsulated tumor only found after the surgery) could have been removed by a snare, which would have required 2 snare procedures. I was told by the surgeon and the snare doctor that one disadvantage of the snare was that it was possible that a little bit of the polyp would be left on my cecum. The disadvantage of surgery was that it would take 6 weeks of recovery. (turned out not to be painful at all, but had to be careful of not ripping up the stitches for 6 weeks.)
I leaned toward the surgery because it would be over in one procedure. Came to this board and everyone agreed with me. What was left out by the surgeon and the snare doctor was that the surgery enabled the docs to get a really good tissue sample (4 inches of my cecum) to check whether my cancer had spread. I had the surgery, and they checked 20 lymph nodes and found none.
If I had undergone the snare procedure and a little bit of my polyp was still there, I would have faced a really difficult choice of whether to have an operation to take out the whole of the polyp. I know I would have been told that the chances of cancer were small, but that they couldn't guarantee that there was some remaining cancer in the small leftover polyp tissue. The snare doc was trying to sell me on his procedure by saying that the surgeon hadn't kept up with the times and didn't know how sophisticated the snare procedure was. (I immediately considered this to be BS but kept my mouth shut.) I am REALLY happy that the docs could get a good tissue sample and do a very thorough job of analyzing biopsies, and lucky for me, not finding any problems.
Parents are at the oncologist now. I’m rather guarded about what they’re going to be told because I had a chance to review his bloodwork, and his CA 19-9 was 1,750. That a cancer antigen that typically indicates how advanced the stage is. Normal is under 37. Above 150 is considered high. Plenty of studies that show a CA 19-9 that high offers a terrible prognosis. Of course, there are always exceptions.
He’ll get one opinion on treatment today, and then we have an appointment at The James Cancer Center at OSU in two weeks for the second opinion. I’m shocked that with a known aggressive cancer and those highly elevated markers that these things take weeks to get appointments and progress to treatment. It seems like every day of delay would cost 3 on the back end, but that’s just in my mind, I have no idea.
He’ll get one opinion on treatment today, and then we have an appointment at The James Cancer Center at OSU in two weeks for the second opinion. I’m shocked that with a known aggressive cancer and those highly elevated markers that these things take weeks to get appointments and progress to treatment. It seems like every day of delay would cost 3 on the back end, but that’s just in my mind, I have no idea.
So sorry to hear that, cincy. Hang in there as best you can and use us as much as you need to.
This is what drives me crazy about the medical community. Not only is it a delay in treatment, it causes very high anxiety for the patient and the family as well. Just not right.
With the negative, I will also post the positive. The meeting with the surgeon today gave my parents a lot of hope. He showed them in the images how the tumor has not invaded any blood vessels or arteries, and is therefore resectable. He told them he would stage it between I and II. They were obviously very happy to hear that.
What I didn't tell my parents, because I'm certainly not going to do anything to stop them from feeling encouraged or hopeful, is that this surgeon's statements are inappropriate at this point, IMO. You cannot stage the cancer before the PET scan is completed. His CA 19-9 markers are so out of control that they indicate it has spread, whether a CT scan shows it or not. While they are not definitive, they are so high that they require a PET scan rather than a CT scan to determine if the cancer is showing up on distant organs like the liver or lungs. A pancreatic tumor that is small and not on a blood vessel or artery can immediately go from stage I to stage IV upon review of a PET scan. And the CA 19-9 markers create very serious concern about what the PET scan will show. So while I'm glad my parents see a glimmer of hope in what has been a devastating month, I'm a bit upset with the doctor for giving them that hope prior to the PET scan. They don't need a rollercoaster.
That said, I too am pleased to hear that blood vessels and arteries aren't involved. That is very significant. I am also pleased that it appears they intend to perform neoadjuvant therapy (pre-surgery chemo), which early studies tend to show plays a significant role in overall survival for patients with elevated CA 19-9 pre-op. That makes sense, of course, because if the cancer is starting to spread, you don't want to spend 3 months having surgery and recovering before you start chemo, or else the cancer that was spreading has a chance to really bloom. Instead, you knock it down, then remove the tumor, then knock it down again.
There are so many hurdles ahead that I'm glad my parents are focusing only on the one directly in front of them. I can't help but take the longer view because of course I want my unborn children to have met the greatest man they'll ever know.
Next step: PET scan. As I said above, the CA 19-9 level indicate there is serious cause for concern with what those will show. This scan being clear is imperative to his prognosis.
Step 2 - Chemo. This will be tough for me to watch him go through. My dad is normally 6', 185" and runs marathons. He's down to 165 lbs in the past month already, and this will certainly beat him down further. He is strong though, and I'm certain he'll weather this well.
Step 3 - If the PET scan was clear initially and the post-chemo PET scans are the same, the Whipple procedure to remove most of his pancreas, some of the small intestine, and part of the bile duct will occur. This will be a difficult recovery where he again could lose significant weight. It's a complex surgery with complications common. Fortunately, the surgeon they met with today and really liked is married to a Penn State grad, so he must be alright (despite being Notre Dame undergrad himself).
Step 4 - He is able to go with us for our planned trip to Disney World next March. He grew up a Mickey Mouse Clubhouse kid in the 50s and owns a timeshare at the Boardwalk Resort at Disney World that has allowed our family to create incredible memories over the years. It would absolutely destroy him if he were unable to go on this trip with what is at stake.
Step 5 - Adjuvant therapy (post-surgery chemo). Frankly you're beating the odds by a mile to even reach this point. Only 20% of tumors are resectable to begin with. More of those folks are found not be resectable once the surgery begins. Even more are unable to recover enough to begin post-surgery chemo.
Step 6 - Regular scans, tests, and therapies to monitor whether the cancer has spread or returned, depending on where it was after step 5.
Step 7 - 5 years later, the doctors tell him to move on with his life and stop coming back for testing. Only 9% of pancreatic cancer patients ever reach this point, and those with CA 19-9 levels like my dad are more like 3%. Someone has to comprise that 3% though, and if anyone can, it's him.
I'm going to continue posting updates through this process in this thread. I want to provide my knowledge and guidance to my parents through this, but I don't want to ever get them down with my tendency to be too blunt with statistics and likelihoods. So I'll get that stuff out here. It's ok if nobody reads or follows along, it's really just for me. I'm not on social media anywhere, so this is my outlet. Hopefully I'll be posting updates for quite some time.
What I didn't tell my parents, because I'm certainly not going to do anything to stop them from feeling encouraged or hopeful, is that this surgeon's statements are inappropriate at this point, IMO. You cannot stage the cancer before the PET scan is completed. His CA 19-9 markers are so out of control that they indicate it has spread, whether a CT scan shows it or not. While they are not definitive, they are so high that they require a PET scan rather than a CT scan to determine if the cancer is showing up on distant organs like the liver or lungs. A pancreatic tumor that is small and not on a blood vessel or artery can immediately go from stage I to stage IV upon review of a PET scan. And the CA 19-9 markers create very serious concern about what the PET scan will show. So while I'm glad my parents see a glimmer of hope in what has been a devastating month, I'm a bit upset with the doctor for giving them that hope prior to the PET scan. They don't need a rollercoaster.
That said, I too am pleased to hear that blood vessels and arteries aren't involved. That is very significant. I am also pleased that it appears they intend to perform neoadjuvant therapy (pre-surgery chemo), which early studies tend to show plays a significant role in overall survival for patients with elevated CA 19-9 pre-op. That makes sense, of course, because if the cancer is starting to spread, you don't want to spend 3 months having surgery and recovering before you start chemo, or else the cancer that was spreading has a chance to really bloom. Instead, you knock it down, then remove the tumor, then knock it down again.
There are so many hurdles ahead that I'm glad my parents are focusing only on the one directly in front of them. I can't help but take the longer view because of course I want my unborn children to have met the greatest man they'll ever know.
Next step: PET scan. As I said above, the CA 19-9 level indicate there is serious cause for concern with what those will show. This scan being clear is imperative to his prognosis.
Step 2 - Chemo. This will be tough for me to watch him go through. My dad is normally 6', 185" and runs marathons. He's down to 165 lbs in the past month already, and this will certainly beat him down further. He is strong though, and I'm certain he'll weather this well.
Step 3 - If the PET scan was clear initially and the post-chemo PET scans are the same, the Whipple procedure to remove most of his pancreas, some of the small intestine, and part of the bile duct will occur. This will be a difficult recovery where he again could lose significant weight. It's a complex surgery with complications common. Fortunately, the surgeon they met with today and really liked is married to a Penn State grad, so he must be alright (despite being Notre Dame undergrad himself).
Step 4 - He is able to go with us for our planned trip to Disney World next March. He grew up a Mickey Mouse Clubhouse kid in the 50s and owns a timeshare at the Boardwalk Resort at Disney World that has allowed our family to create incredible memories over the years. It would absolutely destroy him if he were unable to go on this trip with what is at stake.
Step 5 - Adjuvant therapy (post-surgery chemo). Frankly you're beating the odds by a mile to even reach this point. Only 20% of tumors are resectable to begin with. More of those folks are found not be resectable once the surgery begins. Even more are unable to recover enough to begin post-surgery chemo.
Step 6 - Regular scans, tests, and therapies to monitor whether the cancer has spread or returned, depending on where it was after step 5.
Step 7 - 5 years later, the doctors tell him to move on with his life and stop coming back for testing. Only 9% of pancreatic cancer patients ever reach this point, and those with CA 19-9 levels like my dad are more like 3%. Someone has to comprise that 3% though, and if anyone can, it's him.
I'm going to continue posting updates through this process in this thread. I want to provide my knowledge and guidance to my parents through this, but I don't want to ever get them down with my tendency to be too blunt with statistics and likelihoods. So I'll get that stuff out here. It's ok if nobody reads or follows along, it's really just for me. I'm not on social media anywhere, so this is my outlet. Hopefully I'll be posting updates for quite some time.
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Profoundly sorry for your loss Dupage. I cannot imagine experiencing what you did. I hope you are comforted by the fact that her last words on earth were of her love for you. I'm praying for you friend.
I am really at a loss for words after reading your post. I will continue to remember your Dad, and your family, in my prayers.
Web, I feel like a new guy and outsider here as many have been here for a long time so threads like this make me uncomfortable to post on. But had to say your posts have been excellent ....lots of strength, knowledge, research, and honesty. The love and respect for your father shines through...he obviously did a great job raising you.
I wish you and your father well through these difficult times. Only wish I could do more.
Alex Trebek says he is resuming chemotherapy after his ‘numbers went sky-high’
“Jeopardy!” host Alex Trebek announced Sept. 17 he would be resuming chemotherapy for late-stage pancreatic cancer. He’s been battling the disease since March. (Allie Caren/The Washington Post)
By Kayla Epstein
September 17 at 11:22 AM
Alex Trebek, beloved host of “Jeopardy!,” announced this morning that he had resumed chemotherapy for his Stage 4 pancreatic cancer, weeks after telling fans that he finished treatment.
“I was doing so well,” Trebek told “Good Morning America” on Tuesday. “And my numbers went down to the equivalent of a normal human being who does not have pancreatic cancer.”
“So we were all very optimistic. And they said, ‘Good, we’re going to stop chemo, we’ll start you on immunotherapy,’ ” he recalled.
The optimism was short-lived. “I lost about 12 pounds in a week and my numbers went sky-high, much higher than they were when I was diagnosed,” he said. “So the doctors have decided that I have to undergo chemo again, and that’s what I’m doing.”
https://www.washingtonpost.com/arts...rapy-after-his-numbers-went-sky-high-he-said/
“Jeopardy!” host Alex Trebek announced Sept. 17 he would be resuming chemotherapy for late-stage pancreatic cancer. He’s been battling the disease since March. (Allie Caren/The Washington Post)
By Kayla Epstein
September 17 at 11:22 AM
Alex Trebek, beloved host of “Jeopardy!,” announced this morning that he had resumed chemotherapy for his Stage 4 pancreatic cancer, weeks after telling fans that he finished treatment.
“I was doing so well,” Trebek told “Good Morning America” on Tuesday. “And my numbers went down to the equivalent of a normal human being who does not have pancreatic cancer.”
“So we were all very optimistic. And they said, ‘Good, we’re going to stop chemo, we’ll start you on immunotherapy,’ ” he recalled.
The optimism was short-lived. “I lost about 12 pounds in a week and my numbers went sky-high, much higher than they were when I was diagnosed,” he said. “So the doctors have decided that I have to undergo chemo again, and that’s what I’m doing.”
https://www.washingtonpost.com/arts...rapy-after-his-numbers-went-sky-high-he-said/
My deceased wife had an ultrasound that was highly suggestive of liver cancer. (large mass the size of a football was found). She was facing a death sentence. Using regular procedures, the next appointment we could get was about 10 days later. I was appalled at the inhumanity and coldness of those from whom we sought an appointment. The idea that anyone could let a human being twist in the wind while facing a death sentence was something I could not imagine until it happened.
Luckily my wife had done medical/biological research and through connections we were able to get an appointment within a day or two.
Plenty of medical community folks more knowledgeable about the disease were upset with the earlier updates from Trebek. Certainly it is better that the initial results were positive than negative, but the media reported on it as though there were a chance Trebek were cured. There is no cure for stage iv pancreatic cancer. At best, they were holding the cancer at bay, and his initial results did not predict he would have increased survival. The "miracle" talk was premature and unsupported. I love Trebek and Jeopardy (ironically, my dad and I talked 6 months ago about how this was a death sentence), among my earliest memories were watching it on the floor of my grandmother's family room when I was 5 years old, so I really hope he's around until they decide my testing is high enough to let me on the show.
Dupage, I cannot image how difficult that must have been for you. What a blessing that (1) you had her in your life, and (2) she was able to say that to you with her last words. Of course, with the blessing of being her husband comes the equivalent pain of losing her. I'm so thankful you knew someone you loved that deeply, and equally sorry for your pain. I hope that time has helped, though I fear it has not.
WB: Great job learning all of the medicine. Your father is very lucky to have your help. Personally, I would be a tad more optimistic than you because, surgeons, like lawyers, tend to underplay their chances for success to protect themselves should something go wrong.
Unfortunately, it seems there are fewer oncologists than there are cancer patients. I have a some connections only a degree or two away from the heads of Pelotonia here in C-bus, I may have to call those favors in.
I don’t know the health system in Columbus but scheduling is done by secretaries with no medical knowledge and they simply fill in what fits between the patient’s schedule and the first available opening for the doc. In some systems it’s centralized scheduling where they may be scheduling for several different hospitals in the same health system (and thus removed from the flexibility of the actual doc office).
If your parents are not handling the anxiety of a 2 week appt, I’d suggest you call the doc’s office and speak to the office manager. Politely explain the situation and ask to be put on the cancellation list or see if the doc can squeeze them in earlier. They will often go check with the doc directly and try to arrange something that works, if possible. Centralized schedulers do not have the flexibility of the actual office.
While it’s totally understandable to be concerned and want everything done very quickly just remember that those 2 weeks in the docs office are filled with other patients and families going through the same nightmare you all are. Like you said- there are more cancer patients than docs. (I don’t mean that harshly but it’s just the plain truth). The 2 weeks will go quickly.
Some suggestions from what we learned-
1. Use the 2 weeks to get any blood work, CT, PET scans etc done. Get copies of the scans before you leave (just ask the tech for a copy) and copies of the official reports sent to you (or picked up which is quicker). Bring all of that with you when you go for the second opinion. It makes everything much more efficient and removes some of the ambiguity a doc may have in suggesting a course of action if he didn’t have those results.
2. Keep a folder with the scans/ reports/ bloodwork etc. The next few months will be a blur and you’ll forget dates and timeline of results. Organization is key and will minimize a lot of the anxiety.
3. It may be best for you (or another family member) to go to these appointments as well. Often patients are distracted and totally miss information presented to them by the doc. They can also not fully comprehend what’s being said but be embarrassed to say so. Don’t be afraid to say you don’t understand or ask for more clarification.
4. It’s also good to write questions down before you go. People forget what they wanted to ask when they get in the room and think of new questions in the car on the way home. (Write the answers down before you get in the car for reference later in your family discussions). Your dad will be distracted trying to process everything and your focused mind will help retain info and get questions asked that he and your mom may not think of.
Sorry for the long post.
Obviously nothing I say or do will make things better. But know you and your wife are in my thoughts and prayers. This is absolutely tragic. I am so sorry for your loss.
WBC, I am sorry to hear about your father's diagnosis. Best of luck to him in his treatment. I was recently diagnosed and treated for bladder cancer. It's something I will have to be vigilant with for the rest of my life. The tumor was non-invasive and low grade. But, that type of BC has a tendency to return.
My mom was diagnosed with PC in 2008 after 6 months of tests to determine why she was jaundice and having digestive system pain. She had PC, but the cancer was not in the pancreas. It was in the deuadenum. The PC cells had set up shop there. She had the Whipple Procedure and spent 2 weeks in ICU, a week in a step down unit, and then single room, then a month of rehab before returning home. The WP made her a diabetic, requiring insulin each day. It took over 4 months from the day of the surgery before she could shower and dress herself. That WP is very involved and it takes a long time to recover. My mom was in remission for a little over a year and then was diagnosed with more cancer. It was in her lungs. But, it was not lung cancer, it was PC in her lungs. The cancer then spread further and eventually claimed her life. She fought for as long as she could. Then one day, after a chemo treatment in Oct of 2011, she said no more. She couldn't do it any longer. She died two months later. For her to say that she had given up, I can't imagine how bad she must have hurt.
Please keep us updated. This board is a great place for support. Your family will be in my thoughts.
Keeping both you, Wb and Dupage, in my thoughts and prayers. Both of you deserve all of our thoughts and prayers in your search for some sort of reconciliation albeit in different ways.
Wb, I liked the advice provided by an earlier poster re going to someone who is near the top of chain of command in the doctors' offices in which you are in contact re having your father seen sooner than later. The organizational piece is very important as is the fact that you have contacts that could be invaluable in having your father evaluated quickly and appropriately. As a cancer counselor, I have come to believe an old adage that there is no such thing as false hope-hope is hope and how each individual processes any situation is unique. Try to stay in the present as much as possible-practice some relaxation techniques such as repetitive breathing exercises or visualization eg imagining yourself at your favorite places, thinking about the sights, sounds, even the smells associated with these places. Get your rest as best you can and eat well and healthy. Consider looking at centers that can offer second, third and even fourth opinions, if necessary, for your Dad's well-being and to work toward his wishes/goals. I wish you all the best-if there are times you/Dad/others feel less than positive, nobody is failing anybody. Sometimes those feelings need to be expressed and dealt with. Keeping you and Dad in my thoughts and prayers.
Wb, I liked the advice provided by an earlier poster re going to someone who is near the top of chain of command in the doctors' offices in which you are in contact re having your father seen sooner than later. The organizational piece is very important as is the fact that you have contacts that could be invaluable in having your father evaluated quickly and appropriately. As a cancer counselor, I have come to believe an old adage that there is no such thing as false hope-hope is hope and how each individual processes any situation is unique. Try to stay in the present as much as possible-practice some relaxation techniques such as repetitive breathing exercises or visualization eg imagining yourself at your favorite places, thinking about the sights, sounds, even the smells associated with these places. Get your rest as best you can and eat well and healthy. Consider looking at centers that can offer second, third and even fourth opinions, if necessary, for your Dad's well-being and to work toward his wishes/goals. I wish you all the best-if there are times you/Dad/others feel less than positive, nobody is failing anybody. Sometimes those feelings need to be expressed and dealt with. Keeping you and Dad in my thoughts and prayers.
Psu00, I've been meaning to ask how you've been doing. I tend to be hesitant about such things, but people on the board do reach out and are supportive.
I’m fine- everything is stable and should
continue that way. Thanks for asking. (The pancreatic issue was with another family member a few months ago).
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One of my best friend's wife has stage IV. SHe has been undergoing chemo for the last 5 months. Her numbers have improved dramatically. She has 2 chemo sessions left, and the plan then is to keep her on "maintenance chemo going forward. She's been treated here in Cincy at Christ. I also have a buddy who's an ER Doc, well connected here and in Columbus- his Father and brother-in-law have both been treated for different types of cancer at the James.
Not sure if I can help, but I would be more than happy to share their info if you want.
millerjs32@hotmail.com
That is very good news.I’m fine- everything is stable and should
Updates:
My parents were very pleased with the surgeon and oncologist here in Cincinnati. Because of that, and because they were able to begin chemo sooner than they would even get an appointment at The James, they chose to go with this group. I am supportive because the hospital and surgeon they are using are high-volume for pancreatic surgeries (100/yr vs 120/yr at the James), and they have been performing the robotic surgery for 7 years to the James' 2.
My dad began chemo today with FOLFIRINOX. The idea that my dad is on chemo is so surreal I think I've simply tucked it away somewhere I can pretend it isn't real. I have convinced my parents, based on the recent studies of Dr. Truty at the Mayo Clinic, that a minimum of 6 cycles is necessary. But I have continued bitching that a PET scan has yet to be performed. A CT scan is helpful, and an endoscopic ultrasound is great, but we need a PET scan or laporascopy to say for certain if it's spread. Needless to say, the insurance companies have balked, claiming it is redundant. I will sue them to the end of the world and back, soon enough.
Because of his elevated CA 19-9 levels and the lack of PET scan, I have remained highly concerned. But I was encouraged that the doctors were so confident in saying he was Stage 1, that it was caught early, he was so lucky, and it could be cured. However, when he arrived for his chemo today and blood work was taken, there was concern expressed regarding his liver levels. Of course there was. I said from the start that this CA 19-9 indicated strongly that it metastasized. I let my guard down and started to believe the hope. But it turns out my research was correct, those CA19-9 levels mean it has spread, in my father's case to his liver, one of the two most obvious places.
I always said after law school that I would only trust myself, because I saw that every profession has its idiots. I abandoned that in hopes these doctors were right about my dad. These liver tests tell me it already spread, that I knew that was the case, that the PET scan was necessary, and that the medical community gives zero ****s. Rough day, thanks for the board.
My parents were very pleased with the surgeon and oncologist here in Cincinnati. Because of that, and because they were able to begin chemo sooner than they would even get an appointment at The James, they chose to go with this group. I am supportive because the hospital and surgeon they are using are high-volume for pancreatic surgeries (100/yr vs 120/yr at the James), and they have been performing the robotic surgery for 7 years to the James' 2.
My dad began chemo today with FOLFIRINOX. The idea that my dad is on chemo is so surreal I think I've simply tucked it away somewhere I can pretend it isn't real. I have convinced my parents, based on the recent studies of Dr. Truty at the Mayo Clinic, that a minimum of 6 cycles is necessary. But I have continued bitching that a PET scan has yet to be performed. A CT scan is helpful, and an endoscopic ultrasound is great, but we need a PET scan or laporascopy to say for certain if it's spread. Needless to say, the insurance companies have balked, claiming it is redundant. I will sue them to the end of the world and back, soon enough.
Because of his elevated CA 19-9 levels and the lack of PET scan, I have remained highly concerned. But I was encouraged that the doctors were so confident in saying he was Stage 1, that it was caught early, he was so lucky, and it could be cured. However, when he arrived for his chemo today and blood work was taken, there was concern expressed regarding his liver levels. Of course there was. I said from the start that this CA 19-9 indicated strongly that it metastasized. I let my guard down and started to believe the hope. But it turns out my research was correct, those CA19-9 levels mean it has spread, in my father's case to his liver, one of the two most obvious places.
I always said after law school that I would only trust myself, because I saw that every profession has its idiots. I abandoned that in hopes these doctors were right about my dad. These liver tests tell me it already spread, that I knew that was the case, that the PET scan was necessary, and that the medical community gives zero ****s. Rough day, thanks for the board.
P.S., I emailed Alan Braverman, GC for Disney, because we're both Duquesne Law grads, to see if he can help make my dad's trip to Disney World any easier in the spring. I assume I won't hear anything back, but I'll let you know if I do.
Oh man, cincy, I was so hoping the docs were right. Are your parents understanding the news? You’re in an extra tough position with the research you’ve done - hard to keep the balance between hope and the numbers.
Totally off the wall question, but do you have your planned Boardwalk dates in March? We’ll be there the first week. Would love to offer to buy you a round or two if it helps get your mind off the weighty stuff for a bit. Sorry, it’s all I have...
