OT: Pancreatic cancer - Goodbye to my father
- Thread starter wbcincy
- Start date
I know it's easier said than done, but hang in there, cincy. We are all pulling and praying for you and all yours.
Agree 100%. In fact, my clinical GI oncologist is a man named Alan Venook at UCSF. He’s one of the best in the world and why I’m still around. He doesn’t even suggest using PET scans because of the high rate of false positives. The only reason I still get them is 1) for continuity of scans (I started by getting one) and 2) because my heath insurance is fantastic and has covered up to 4 per year.
Mayo now uses a PET MRI. They may be the only place in the country using them yet, but supposed to offer the best images.
Interesting. Thanks for sharing. I’m admittedly not on top of the latest a couple of years out. I should do a better job there.
That is one beautiful 10 pointer. Wow!!!!!!!!!!Personal cathartic update:
My dad's 3rd round of chemo is tomorrow. His beard has turned into a goatee, which is now on the cusp of being a clean-shaven face. While he suffers many of chemo's side effects (hair loss, fatigue, mouth sores, neuropathy, etc), he has been extremely fortunate nonetheless as he has no debilitating nausea. He discussed with me this past week the depression that comes with the couple days following a chemo session. It was something he was completely unprepared for, having no life experience with depression or the dark places it can take you. Understanding it now, he's hopeful he'll be able to handle it better going forward.
Of course, being the type of man he is, he continues to be concerned with others rather than himself. I can't recall if I mentioned this previously in this thread, but when the word finally came that he had pancreatic cancer, the first thing my dad did was to tell my mom that he was sorry. Having just been told that his own life was likely nearing its end, all he could think of immediately was to be sorry for what it would mean to others. My dad is a blessing and a curse in that regard, being exactly the type of father anyone should hope for, but also creating a standard I can't ever meet as a father myself.
I had a call with the head of pancreatic surgery at the Mayo Clinic last week, and I thought it was worth mentioning because it's pretty cool for the guy to take time and discuss my dad's case with me despite my making clear he would not be a patient there. Dr. Truty is a former college football player who lost his father to pancreatic cancer, and he is worth mentioning here for being a decent human being, and for doing great things in advancing PC treatment.
I've tried to calm down about the PET scan thing. It hasn't happened, and at this point any metasteses could be dead and wouldn't show up on a PET anyway. They should see it when they open him up if it has spread, and close him back up quickly. I'll be sure to bring this up in advance. I don't want to be paranoid, but I want to make sure they know they shouldn't be looking to cash in on a surgery unless it's warranted.
Also, not bad for a pancreatic cancer patient undergoing chemo:
Best of luck to your dad. God bless.
Cincy,
One of my best friend's wife is in the same exact situation here in Cincinnati.
She went through I believe 12 chemo treatments at Christ Hospital. He's an executive at Christ too.
I would be more than comfortable to put you in touch with him. Her numbers are great, but she's getting a "maintenance" chemo treatments every 2 weeks.
If you'd like to reach out to me and I'll put i him in touch with you that would work.
Call day or night.
I know her struggle has been great. She is a trooper and not sure I could have gone through what she has and is.
Stay strong. I don't do PM.
513-703-1278
Jeff
Quick update.
When I showed up at my parents' place for the holidays and my father and I went for a walk with our dogs, he immediately started telling me what he planned to ask his oncologist with respect to CA19-9. He ended it with "so that's that." It was clear to me that my mother had been telling him what I intended to talk to him about and that walls were already up to combat my protestations. I let it go for a couple days. Then, on the night of December 22 (knowing he was to meet with his oncologist the morning of Dec. 23), when it was just my father and I, I decided to show him a video that supports my position (a lecture by Mayo Clinic pancreatic expert Mark Truty, you can watch HERE, he's incredible). My position is that you have to normalize your CA19-9 if you can. It doubles your life expectancy, and when someone is responding as well to chemo as my father, that may mean 1 or 2 more treatments of chemo adds years to his life. Well, his response is immediately combative. Everything is "I already know this," "you've already told me this." Except he also says "this is just one person's opinion, I'm sure there's another study that says the opposite." Problem is, I've put hundreds of hours into reading these studies, there is no counter-study. He wants to treat it as though I'm reading WebMD, or this is "eggs are bad for you, eggs are good for you." It's not. Within 5 years, it will be standard treatment for pancreatic cancer that, if possible, CA19-9 must be normalized before proceeding with surgery, otherwise it's a waste of time. But for now, it's not.
My father tells me "at some point I have to just trust my doctor." My reaction is...why? Trust, but verify. We have unlimited knowledge available to us, I don't have to trust a doctor who finished in the bottom half a mid-tier medical school, why should I? This doctor has no information available to him that I don't as well. He's following presently acceptable protocol, I'm studying what will be the protocol 5 years from now. He told me that I don't understand what I was asking him to go through. I stated I wasn't asking him to go through anything, just that I needed him to know what he was deciding, but he was free to decide whatever he wanted. Very long story short, it was the most difficult conversation I've ever had with my father. I'm trying harder than anyone involved here to save his life, but I'm the enemy. He just wants to listen to the oncologist and surgeon, who are spreading nothing but rainbows and sunshine, and not hear from me, who is saying you have to do this or you cut your life in half. He told me that it is vital he remain hopeful, and I'm destroying that. I say I'm offering the same hope, just that I'm offering the only path to actually achieve it.
The next day my father met with his oncologist and asked to have an additional round of chemo. He had that chemo on New Year's Eve. So, I'm treated as the enemy, but my advice followed. His CA19-9 was down to 144 on Dec. 19. I'm hopeful it will normalize with one final round of chemo (under 37, he started at 3200). I won't fight him to do more. He did not have his CA19-9 drawn at his latest treatment. I said he should and was told "it doesnt matter anyway." Yet now he's going to have it drawn next week at his request. Once again, i'm the bad guy, but then he does what I say he should.
His Whipple surgery is now scheduled for January 30. I'm going to be concerned up until the surgery is complete because I'm worried that with his initial CA19-9 being extremely high, they'll find its spread upon opening him up.
Good news is the most recent CT scan couldn't even identify the tumor. However, I viewed this a bit differently. We know its there, yet the CT cant show it. That's why I argued from the start a CT wasn't sufficient, because there could be tumors elsewhere it wouldn't even show.
Regardless, I've informed my father of what I know. He may not like it or accept it, but he knows it. He can choose whatever he likes moving forward, and I will only be supportive and positive. If his CA19-9 normalizes because of this extra treatment, the hurt I've felt from the reaction to me will have been worth it. Even if it doesnt, I'll know I did all I could.
One final aside. I wish I had brothers more like me. I have two older brothers, one 11 years older than me, the other 3. The oldest barely graduated high school and takes pride in being trash, but is a veteran and lieutenant at a prison. But he has come here from PA to visit my father 0 times since his diagnosis. The other is a high school dropout who likes to be drunk or high more than make anything of himself. He lives a perfectly fine life if drinking and playing video games with your friends is all you need from life. Anyway, on Christmas Eve, when my father tells that brother that he's going to have another chemo treatment, his response is, alcohol aided "that's stupid, you're supposed to be done already." It's a minor thing, but it's just so frustrating that I spend hundreds of hours immersing myself into this, and I have brothers who don't care, and don't care how ignorant their comments are. But they're the good guys for simply being supportive. I'm the bad guy for saying we have to do X.
I'll post again after the surgery. Here's hoping nothing is found to have spread and the surgery goes well.
When I showed up at my parents' place for the holidays and my father and I went for a walk with our dogs, he immediately started telling me what he planned to ask his oncologist with respect to CA19-9. He ended it with "so that's that." It was clear to me that my mother had been telling him what I intended to talk to him about and that walls were already up to combat my protestations. I let it go for a couple days. Then, on the night of December 22 (knowing he was to meet with his oncologist the morning of Dec. 23), when it was just my father and I, I decided to show him a video that supports my position (a lecture by Mayo Clinic pancreatic expert Mark Truty, you can watch HERE, he's incredible). My position is that you have to normalize your CA19-9 if you can. It doubles your life expectancy, and when someone is responding as well to chemo as my father, that may mean 1 or 2 more treatments of chemo adds years to his life. Well, his response is immediately combative. Everything is "I already know this," "you've already told me this." Except he also says "this is just one person's opinion, I'm sure there's another study that says the opposite." Problem is, I've put hundreds of hours into reading these studies, there is no counter-study. He wants to treat it as though I'm reading WebMD, or this is "eggs are bad for you, eggs are good for you." It's not. Within 5 years, it will be standard treatment for pancreatic cancer that, if possible, CA19-9 must be normalized before proceeding with surgery, otherwise it's a waste of time. But for now, it's not.
My father tells me "at some point I have to just trust my doctor." My reaction is...why? Trust, but verify. We have unlimited knowledge available to us, I don't have to trust a doctor who finished in the bottom half a mid-tier medical school, why should I? This doctor has no information available to him that I don't as well. He's following presently acceptable protocol, I'm studying what will be the protocol 5 years from now. He told me that I don't understand what I was asking him to go through. I stated I wasn't asking him to go through anything, just that I needed him to know what he was deciding, but he was free to decide whatever he wanted. Very long story short, it was the most difficult conversation I've ever had with my father. I'm trying harder than anyone involved here to save his life, but I'm the enemy. He just wants to listen to the oncologist and surgeon, who are spreading nothing but rainbows and sunshine, and not hear from me, who is saying you have to do this or you cut your life in half. He told me that it is vital he remain hopeful, and I'm destroying that. I say I'm offering the same hope, just that I'm offering the only path to actually achieve it.
The next day my father met with his oncologist and asked to have an additional round of chemo. He had that chemo on New Year's Eve. So, I'm treated as the enemy, but my advice followed. His CA19-9 was down to 144 on Dec. 19. I'm hopeful it will normalize with one final round of chemo (under 37, he started at 3200). I won't fight him to do more. He did not have his CA19-9 drawn at his latest treatment. I said he should and was told "it doesnt matter anyway." Yet now he's going to have it drawn next week at his request. Once again, i'm the bad guy, but then he does what I say he should.
His Whipple surgery is now scheduled for January 30. I'm going to be concerned up until the surgery is complete because I'm worried that with his initial CA19-9 being extremely high, they'll find its spread upon opening him up.
Good news is the most recent CT scan couldn't even identify the tumor. However, I viewed this a bit differently. We know its there, yet the CT cant show it. That's why I argued from the start a CT wasn't sufficient, because there could be tumors elsewhere it wouldn't even show.
Regardless, I've informed my father of what I know. He may not like it or accept it, but he knows it. He can choose whatever he likes moving forward, and I will only be supportive and positive. If his CA19-9 normalizes because of this extra treatment, the hurt I've felt from the reaction to me will have been worth it. Even if it doesnt, I'll know I did all I could.
One final aside. I wish I had brothers more like me. I have two older brothers, one 11 years older than me, the other 3. The oldest barely graduated high school and takes pride in being trash, but is a veteran and lieutenant at a prison. But he has come here from PA to visit my father 0 times since his diagnosis. The other is a high school dropout who likes to be drunk or high more than make anything of himself. He lives a perfectly fine life if drinking and playing video games with your friends is all you need from life. Anyway, on Christmas Eve, when my father tells that brother that he's going to have another chemo treatment, his response is, alcohol aided "that's stupid, you're supposed to be done already." It's a minor thing, but it's just so frustrating that I spend hundreds of hours immersing myself into this, and I have brothers who don't care, and don't care how ignorant their comments are. But they're the good guys for simply being supportive. I'm the bad guy for saying we have to do X.
I'll post again after the surgery. Here's hoping nothing is found to have spread and the surgery goes well.
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@wbcincy
Keep up the great work. You might not realize it, but your parents (especially your father) appear to be listening to you but in a manner that is “indirect”. It’s their preferred manner of dealing with this. Don’t take it personally.
As our parents get older two things happen..they get harder-headed and they (your Mom & Dad) become more unified, which is understandable and admirable. Elderly parents become the children we once were...they hide information, they promise to do things they have no intention of doing and they put up unified walls to oppose outside opinions until they are able to discuss/process same amongst themselves in a private setting. Even then, their proudness prohibits them from acknowledging they actually altered their decision-making based on information that you or others provided. It’s a generational thing and you shouldn’t expect expressive thanks from your parents. Be a good listener....the clues will be there.
A few questions for you.
1) When your father goes to visit his doctors, who goes with him? Just your mother?
2) Would your parents be receptive to having you tag along to Dr’s visits, if logistically possible?
3) If so, do you feel you have the patience to “bite your tongue” during the appointments, be a good listener and save your questions and knowledge until end of the appointment?
Keep up the great work. You might not realize it, but your parents (especially your father) appear to be listening to you but in a manner that is “indirect”. It’s their preferred manner of dealing with this. Don’t take it personally.
As our parents get older two things happen..they get harder-headed and they (your Mom & Dad) become more unified, which is understandable and admirable. Elderly parents become the children we once were...they hide information, they promise to do things they have no intention of doing and they put up unified walls to oppose outside opinions until they are able to discuss/process same amongst themselves in a private setting. Even then, their proudness prohibits them from acknowledging they actually altered their decision-making based on information that you or others provided. It’s a generational thing and you shouldn’t expect expressive thanks from your parents. Be a good listener....the clues will be there.
A few questions for you.
1) When your father goes to visit his doctors, who goes with him? Just your mother?
2) Would your parents be receptive to having you tag along to Dr’s visits, if logistically possible?
3) If so, do you feel you have the patience to “bite your tongue” during the appointments, be a good listener and save your questions and knowledge until end of the appointment?
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My prayers are with you and your Dad. Good luck and God Bless.
Your father is very lucky to have such a devoted industrious son. Since your pushing him to have the chemo seems to work with him grudgingly taking those steps, I think (for whatever it is worth) you need to keep having a thick skin and respectfully push for the additional chemo but not super hard.
With respect to him needing to trust his doctors, that is a near universal trait/response. Exactly, what all of my workers' comp clients did, sometimes in circumstances where it was not deserved. Instead of directly disagreeing with your father on this point, I would try to come up with some clever side stepping of the issue -- exactly what I don't know as I am writing this.
Finally, much bigger picture, I will mention something roughly analogous involving me and my father. My father didn't like to think about death and was resistant to writing a will. I never challenged him once or said anything even though I knew it was very stupid. My view was that if my father was happy, I was more than fine with losing some money. (Ultimately, my mother got him to do it) You of course, are concerned with something much more important -- lengthening your father's life. However, at some point, you have to be ready to accede to your father's wishes, even if they are greatly ill-advised.
Very best of wishes to your father and you.
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Keep your head up. He’s going through a lot, much of which he won’t tell you. I know it’s frustrating but his being combative is more anger with the situation, not you. At the end of the day he appears to be taking much of your advice. Consider it as a victory and take the flack. Right now you’re just the person in the firing line. He’ll apologize for it later as he clearly knows you’re there to help.
Good luck with the Whipple. Where is he having it done? Prepare for a long day and bring things (phone, books) to distract you during the long wait. You’ll likely be in there at 5-6 am. Prayers for your dad and family.
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Depending on where you live, go to a Medical Center like Hershey/UPMC/Geisinger and get a second opinion.
I think I can speak for the entire board when I say "We are all in your corner & wish him, you, and your family nothing but the best results possible sir!"
I appreciate your sharing this difficult family journey with the board. It causes me to reflect on what I might do if a family member, or close friend, faced a similar situation. There are lessons in this for us all. My thoughts and prayers are with you today.
So my father went ahead and had another round chemo on New Years Eve at my urging, insisting this was the final attempt (as though compromising with me). Unfortunately, his CA19-9 went from dropping in half every treatment, to only dropping from 144 to 138. So at this point, my role had to change. He was adamant this was it, he wasn't willing to do more. So it's no longer beneficial for me to push him to do more or tell him that his decision is harmful to his prognosis. Thus, I expressed only the positive, which isn't necessarily untrue: better that it only drop 6 points than that it drop to 80. If it had dropped to 80, it would mean we're still making great progress, we can't stop now. But by only dropping 6 points, it indicates that any remaining elevation is solely due to pancreatitis and bile duct obstruction. Is that definitive? No. But it's possible, so I'll tell him it's good.
He had the Whipple procedure performed this past Thursday. Only 20% of pancreatic cancer patients are even eligible for this potential cure, and among those, 20% are closed back up before the surgery begins because evidence of spread is discovered once they're opened up. My father was fortunate enough to be in the 20% that are eligible, and not among the 20% that are ineligible upon opening. The surgery took about 7.5 hours and went well. The Whipple looks a little something like this:
We are still waiting pathology, likely to come Monday or Tuesday, which will be huge. If his resection margins are positive, the surgery was likely meaningless, and he has about a year to live. We are hoping for (1) negative margins, and (2) lack of spread to lymphnodes, of which ~20 should have been taken.
Right now, I spent the weekend visiting with my dad and pressing him to use the breathing apparatus and get up and walk around. Those are the things he needs to avoid pneumonia or blood clots. He's doing well, but has now gone 4 days without a sip of water or bite to eat. That's an extreme challenge for anyone, but he is strong. I remain very nervous for the pathology results, and we remain on edge until then.
He had the Whipple procedure performed this past Thursday. Only 20% of pancreatic cancer patients are even eligible for this potential cure, and among those, 20% are closed back up before the surgery begins because evidence of spread is discovered once they're opened up. My father was fortunate enough to be in the 20% that are eligible, and not among the 20% that are ineligible upon opening. The surgery took about 7.5 hours and went well. The Whipple looks a little something like this:
We are still waiting pathology, likely to come Monday or Tuesday, which will be huge. If his resection margins are positive, the surgery was likely meaningless, and he has about a year to live. We are hoping for (1) negative margins, and (2) lack of spread to lymphnodes, of which ~20 should have been taken.
Right now, I spent the weekend visiting with my dad and pressing him to use the breathing apparatus and get up and walk around. Those are the things he needs to avoid pneumonia or blood clots. He's doing well, but has now gone 4 days without a sip of water or bite to eat. That's an extreme challenge for anyone, but he is strong. I remain very nervous for the pathology results, and we remain on edge until then.
Still here with you, cincy. Hoping for the best out of his tests.
There is little I can say except that your Dad, and you and your family, remain in my thoughts and prayers.
So my father went ahead and had another round chemo on New Years Eve at my urging, insisting this was the final attempt (as though compromising with me). Unfortunately, his CA19-9 went from dropping in half every treatment, to only dropping from 144 to 138. So at this point, my role had to change. He was adamant this was it, he wasn't willing to do more. So it's no longer beneficial for me to push him to do more or tell him that his decision is harmful to his prognosis. Thus, I expressed only the positive, which isn't necessarily untrue: better that it only drop 6 points than that it drop to 80. If it had dropped to 80, it would mean we're still making great progress, we can't stop now. But by only dropping 6 points, it indicates that any remaining elevation is solely due to pancreatitis and bile duct obstruction. Is that definitive? No. But it's possible, so I'll tell him it's good.
He had the Whipple procedure performed this past Thursday. Only 20% of pancreatic cancer patients are even eligible for this potential cure, and among those, 20% are closed back up before the surgery begins because evidence of spread is discovered once they're opened up. My father was fortunate enough to be in the 20% that are eligible, and not among the 20% that are ineligible upon opening. The surgery took about 7.5 hours and went well. The Whipple looks a little something like this:
We are still waiting pathology, likely to come Monday or Tuesday, which will be huge. If his resection margins are positive, the surgery was likely meaningless, and he has about a year to live. We are hoping for (1) negative margins, and (2) lack of spread to lymphnodes, of which ~20 should have been taken.
Right now, I spent the weekend visiting with my dad and pressing him to use the breathing apparatus and get up and walk around. Those are the things he needs to avoid pneumonia or blood clots. He's doing well, but has now gone 4 days without a sip of water or bite to eat. That's an extreme challenge for anyone, but he is strong. I remain very nervous for the pathology results, and we remain on edge until then.
We all are praying for the very best of news wb!!
Prayers!!!!
Your Dad is a fighter and you are a good son. It’s important to remain positive.So my father went ahead and had another round chemo on New Years Eve at my urging, insisting this was the final attempt (as though compromising with me). Unfortunately, his CA19-9 went from dropping in half every treatment, to only dropping from 144 to 138. So at this point, my role had to change. He was adamant this was it, he wasn't willing to do more. So it's no longer beneficial for me to push him to do more or tell him that his decision is harmful to his prognosis. Thus, I expressed only the positive, which isn't necessarily untrue: better that it only drop 6 points than that it drop to 80. If it had dropped to 80, it would mean we're still making great progress, we can't stop now. But by only dropping 6 points, it indicates that any remaining elevation is solely due to pancreatitis and bile duct obstruction. Is that definitive? No. But it's possible, so I'll tell him it's good.
He had the Whipple procedure performed this past Thursday. Only 20% of pancreatic cancer patients are even eligible for this potential cure, and among those, 20% are closed back up before the surgery begins because evidence of spread is discovered once they're opened up. My father was fortunate enough to be in the 20% that are eligible, and not among the 20% that are ineligible upon opening. The surgery took about 7.5 hours and went well. The Whipple looks a little something like this:
We are still waiting pathology, likely to come Monday or Tuesday, which will be huge. If his resection margins are positive, the surgery was likely meaningless, and he has about a year to live. We are hoping for (1) negative margins, and (2) lack of spread to lymphnodes, of which ~20 should have been taken.
Right now, I spent the weekend visiting with my dad and pressing him to use the breathing apparatus and get up and walk around. Those are the things he needs to avoid pneumonia or blood clots. He's doing well, but has now gone 4 days without a sip of water or bite to eat. That's an extreme challenge for anyone, but he is strong. I remain very nervous for the pathology results, and we remain on edge until then.
I think of you often. Your father and family are lucky to have you as an advocate. You should be proud of all you’ve done even in the face of such an uphill battle.
So my father went ahead and had another round chemo on New Years Eve at my urging, insisting this was the final attempt (as though compromising with me). Unfortunately, his CA19-9 went from dropping in half every treatment, to only dropping from 144 to 138. So at this point, my role had to change. He was adamant this was it, he wasn't willing to do more. So it's no longer beneficial for me to push him to do more or tell him that his decision is harmful to his prognosis. Thus, I expressed only the positive, which isn't necessarily untrue: better that it only drop 6 points than that it drop to 80. If it had dropped to 80, it would mean we're still making great progress, we can't stop now. But by only dropping 6 points, it indicates that any remaining elevation is solely due to pancreatitis and bile duct obstruction. Is that definitive? No. But it's possible, so I'll tell him it's good.
He had the Whipple procedure performed this past Thursday. Only 20% of pancreatic cancer patients are even eligible for this potential cure, and among those, 20% are closed back up before the surgery begins because evidence of spread is discovered once they're opened up. My father was fortunate enough to be in the 20% that are eligible, and not among the 20% that are ineligible upon opening. The surgery took about 7.5 hours and went well. The Whipple looks a little something like this:
We are still waiting pathology, likely to come Monday or Tuesday, which will be huge. If his resection margins are positive, the surgery was likely meaningless, and he has about a year to live. We are hoping for (1) negative margins, and (2) lack of spread to lymphnodes, of which ~20 should have been taken.
Right now, I spent the weekend visiting with my dad and pressing him to use the breathing apparatus and get up and walk around. Those are the things he needs to avoid pneumonia or blood clots. He's doing well, but has now gone 4 days without a sip of water or bite to eat. That's an extreme challenge for anyone, but he is strong. I remain very nervous for the pathology results, and we remain on edge until then.
What a pressure-packed time for you and your dad. I am sure the wait is horrible. Really pulling for good results for your dad.
Good luck buddy. Speaking from personal experience, the breathing apparatus is annoying but a really, really big deal. Keep pushing him to use it!
Yeah, that breathing thingy looks simple, silly and useless...but it makes a huge difference. And getting up and walking as much as possible is critical to getting out of the hospital ASAP. I would also suggest when in bed, move the arms and legs around, exercise while lying in bed. The more you move around, the more it will stimulate the metabolism which stimulates the healing process.
wbcincy, thanks for the update, for educating all of us, and for the brotherhood of your life issues. Wishing you, your father, and family well. However this goes, be comforted by knowing you have done yeoman's work for the best possible outcome.
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Cincy, was just thinking about you this morning. Hang in there as best you can. Can't imagine anyone having a better advocate than your dad does.
If I may, I suggest that your dad seek an evaluation at Sloan-Kettering or Cancer Memorial in Texas. They are on the cutting edge pertaining to current treatments. Often it takes time for treatment discoveries to filter down to local hospitals.
Thank you, I wish he would have been willing to do what you suggest, but I couldn't even get him to come up the James in Columbus for an evaluation. They found a surgeon and oncologist they liked and who were able to begin treatment immediately, and there was no convincing them to listen to others afterwards. It's been a part of the frustration of all this, given that I was personally consulting with the head of pancreatic surgery at the Mayo Clinic, but my parents didn't want to hear it. He would argue that the journals and information are available to anyone, so he's sure his doctors are aware of their research. I would rebut that there's a reason some hospitals are rated higher than others, and it's because they're doing the things today that will be standard in 5 years elsewhere...and on and on it went.
I gave him all the information I could, he's made his decisions (and there's no going back now), so all I can do now is support him, comfort him as needed, and be positive.
So my father went ahead and had another round chemo on New Years Eve at my urging, insisting this was the final attempt (as though compromising with me). Unfortunately, his CA19-9 went from dropping in half every treatment, to only dropping from 144 to 138. So at this point, my role had to change. He was adamant this was it, he wasn't willing to do more. So it's no longer beneficial for me to push him to do more or tell him that his decision is harmful to his prognosis. Thus, I expressed only the positive, which isn't necessarily untrue: better that it only drop 6 points than that it drop to 80. If it had dropped to 80, it would mean we're still making great progress, we can't stop now. But by only dropping 6 points, it indicates that any remaining elevation is solely due to pancreatitis and bile duct obstruction. Is that definitive? No. But it's possible, so I'll tell him it's good.
He had the Whipple procedure performed this past Thursday. Only 20% of pancreatic cancer patients are even eligible for this potential cure, and among those, 20% are closed back up before the surgery begins because evidence of spread is discovered once they're opened up. My father was fortunate enough to be in the 20% that are eligible, and not among the 20% that are ineligible upon opening. The surgery took about 7.5 hours and went well. The Whipple looks a little something like this:
We are still waiting pathology, likely to come Monday or Tuesday, which will be huge. If his resection margins are positive, the surgery was likely meaningless, and he has about a year to live. We are hoping for (1) negative margins, and (2) lack of spread to lymphnodes, of which ~20 should have been taken.
Right now, I spent the weekend visiting with my dad and pressing him to use the breathing apparatus and get up and walk around. Those are the things he needs to avoid pneumonia or blood clots. He's doing well, but has now gone 4 days without a sip of water or bite to eat. That's an extreme challenge for anyone, but he is strong. I remain very nervous for the pathology results, and we remain on edge until then.
I have a friend who had the Whipple surgery in February, 2015 and I just talked to him today. When he had completed his surgery, a friend of his from North Carolina encouraged him by telling him of two friends who were both 5 plus years out from the surgery and playing golf and that helped him..
He told me, as I'm sure your doctor told your dad and family, that recovery takes from 6-12 months, and in his case is was in fact a year until he started feeling well again.
So encourage your dad that good things can happen, and I hope these 3 examples I gave you will help him.
Pathology came back this morning. All margins were negative and only a few cancer cells showed up in 1 of the 20 lymph nodes that were taken. Studies show that spread to less than 3 lymph nodes has the same prognosis as none at all. He will need some additional adjuvant chemo to try to make sure they’ve cleared any remaining cells though.
It’s still a long road, and recurrence is common and life expectancy overall is still devastatingly short. However, this was the best possible news, and gives real hope that he will be cured, so a different type of tears were shed this morning than those we’ve experienced through most of this.
It’s still a long road, and recurrence is common and life expectancy overall is still devastatingly short. However, this was the best possible news, and gives real hope that he will be cured, so a different type of tears were shed this morning than those we’ve experienced through most of this.
Yes! Yes!
Great news and forward as prescribed we go wb.
Prayers are still coming your way sir.
I’m so happy for you and your family! Keep fighting....
Thought you might like to see this sir.
https://pittsburgh.cbslocal.com/202...o_YGde1W3glBpp4C1SZuLG2ou0uRpK-a4C6WtcYZtjwu4
Thanks Glov. Her initial treatment also speaks to how much things have changed in a short time. She was diagnosed on a Friday and in surgery Monday. You can’t help but wonder whether she would’ve been fully cured if she had undergone a few months of neoadjuvant chemo before surgery, as is now becoming (or has become) the standard practice.
I am somewhat fortunate that my work has allowed me to speak with some people in significant medical positions about my father, including recently a man who is the former chief of surgery at a hospital and head professor of surgery at a major university. We discussed my father at great length this past week, and he did provide me with an interesting alternative perspective on my quest for normalized CA19-9 and continued chemo. He mentioned that it is a difficult balance between trying to normalize the CA19-9/deaden the tumor through additional chemo/radiation and risking a bile duct leak or (insert term I didn't understand) whereby the body is unable to heal and recover from the Whipple surgery.
My father was a bit upset to learn 2 weeks ago what his next course of action will be. Because the resection margin at one spot was so thin, and because of the few cancer cells in one of the lymph nodes, he will now undergo chemo for a couple more months, followed by a break and then daily radiation for another month and a half. Even then, the oncologist told them his odds of survival are a coin flip.
My mother called me thinking I would be very upset to hear it was merely a coin flip. Of course, I already knew this...I had been trying for months to explain that if they didn't do more pre-surgery, this is what they'd be left with. My mother said, "I thought you told me that if these results came back right, pancreatic cancer is not what he would die from." I said yes...but that was if he achieved the things I said he must prior to surgery. She said "you mean normalize CA19-9, etc." I said yes. Then I told her that given he did not do that, negative resection margins and cancer cells in only 1 of 20 lymph nodes was the best case scenario, so of course I would be positive about that. But being positive in this situation means being happy and excited about the prospect of a coin flip rather than 1 in 100. I never did this, but it was so hard not to say "my God, I can't believe you now want to hear I have to say about what it would take to cure him when you treated me like the enemy prior to surgery, it's too late now." There's no point in making anyone feel worse now. He still has so much better of a chance than most of the people diagnosed with this disease, 85% of whom have no chance of cure. Those 85% would give anything for this coin flip. Regardless, another frustrating moment where the oncologist finally gives them some reality, but after it's too late to do what I suggested.
My father is now just over 3 weeks from having his gallbladder, duodenum, and part of his pancreas, stomach, and small intestine removed, with his bile duct rererouted, a 12 hour surgery in all. He's lost 30 pounds since this began (and at 6'0", 180 lbs of fitness at the start, didn't have it to lose) We walked at a brisk pace together for 2 miles today, and he's disappointed with how weak he is. He stopped taking pain medication from the surgery within 10 days because he didn't want to risk becoming addicted.
He told me last night as we were taking the dogs out at the end of the night after finishing the Washington series on History Channel that he was really glad my wife, son and I came to visit this weekend. That he needed this reminder of why his is about to go through what he is about to for the next few months, because he wants to spend more time with us.
He remains, and always will be the man I wish I could be, no matter how far short I always come.
My father was a bit upset to learn 2 weeks ago what his next course of action will be. Because the resection margin at one spot was so thin, and because of the few cancer cells in one of the lymph nodes, he will now undergo chemo for a couple more months, followed by a break and then daily radiation for another month and a half. Even then, the oncologist told them his odds of survival are a coin flip.
My mother called me thinking I would be very upset to hear it was merely a coin flip. Of course, I already knew this...I had been trying for months to explain that if they didn't do more pre-surgery, this is what they'd be left with. My mother said, "I thought you told me that if these results came back right, pancreatic cancer is not what he would die from." I said yes...but that was if he achieved the things I said he must prior to surgery. She said "you mean normalize CA19-9, etc." I said yes. Then I told her that given he did not do that, negative resection margins and cancer cells in only 1 of 20 lymph nodes was the best case scenario, so of course I would be positive about that. But being positive in this situation means being happy and excited about the prospect of a coin flip rather than 1 in 100. I never did this, but it was so hard not to say "my God, I can't believe you now want to hear I have to say about what it would take to cure him when you treated me like the enemy prior to surgery, it's too late now." There's no point in making anyone feel worse now. He still has so much better of a chance than most of the people diagnosed with this disease, 85% of whom have no chance of cure. Those 85% would give anything for this coin flip. Regardless, another frustrating moment where the oncologist finally gives them some reality, but after it's too late to do what I suggested.
My father is now just over 3 weeks from having his gallbladder, duodenum, and part of his pancreas, stomach, and small intestine removed, with his bile duct rererouted, a 12 hour surgery in all. He's lost 30 pounds since this began (and at 6'0", 180 lbs of fitness at the start, didn't have it to lose) We walked at a brisk pace together for 2 miles today, and he's disappointed with how weak he is. He stopped taking pain medication from the surgery within 10 days because he didn't want to risk becoming addicted.
He told me last night as we were taking the dogs out at the end of the night after finishing the Washington series on History Channel that he was really glad my wife, son and I came to visit this weekend. That he needed this reminder of why his is about to go through what he is about to for the next few months, because he wants to spend more time with us.
He remains, and always will be the man I wish I could be, no matter how far short I always come.
