Looking for feedback and ideas, stage III and elderly, long…

I don't think the LND would be an easy sell.  He walks with a cane now and this would be the same arm.  It's probably what the onc will recommend, though.  I want to think of all the options I can when we confront the onc.

Thanks,

Jan

Thanks, Donna.  You're right, I rarely post with questions.  I feel I probably know the answers with this question, too, but just don't want to miss anything.

My Dad has stage IV prostate cancer with mets to the hip and femur.  PSA off the charts.  It appears to be under control at the moment.  He also had non-small cell adenocarcinoma (lung cancer).  They biopsied the lung to rule out melanoma at the time of diagnosis.  He had 4D radiation (3 high dose sessions) and all appears well with the lung.  The thyroid issue is thyroid cancer, not melanoma mets.  And melanoma.  You could add many SCC's for a total of 5 different cancers.  And all in a family with no history of cancer.  My history doesn't count – I'm actually adopted so my familial melanoma gene (CDKN2A) doesn't come from him!

Dad doesn't usually hide things – he just didn't tell us about the appointment.  Probably didn't even realize he was having a biopsy, just showed up when the reminder said he should be there.  But no one followed up and gave him the results – so I had to read through 100 pages of his medical history to get this info.  Good thing I've had practice reading path reports.   I don't think he'll do a systemic treatment however something like Temodar which has few side effects might be an option.  I don't think IPI will be the right choice for him.

Thanks for responding and for the good wishes,

Janner

Thanks, Donna.  You're right, I rarely post with questions.  I feel I probably know the answers with this question, too, but just don't want to miss anything.

My Dad has stage IV prostate cancer with mets to the hip and femur.  PSA off the charts.  It appears to be under control at the moment.  He also had non-small cell adenocarcinoma (lung cancer).  They biopsied the lung to rule out melanoma at the time of diagnosis.  He had 4D radiation (3 high dose sessions) and all appears well with the lung.  The thyroid issue is thyroid cancer, not melanoma mets.  And melanoma.  You could add many SCC's for a total of 5 different cancers.  And all in a family with no history of cancer.  My history doesn't count – I'm actually adopted so my familial melanoma gene (CDKN2A) doesn't come from him!

Dad doesn't usually hide things – he just didn't tell us about the appointment.  Probably didn't even realize he was having a biopsy, just showed up when the reminder said he should be there.  But no one followed up and gave him the results – so I had to read through 100 pages of his medical history to get this info.  Good thing I've had practice reading path reports.   I don't think he'll do a systemic treatment however something like Temodar which has few side effects might be an option.  I don't think IPI will be the right choice for him.

Thanks for responding and for the good wishes,

Janner

I don't think the LND would be an easy sell.  He walks with a cane now and this would be the same arm.  It's probably what the onc will recommend, though.  I want to think of all the options I can when we confront the onc.

Thanks,

Jan

Thanks, Jerry.  Dad is going to want quality, too, like your Dad. That's why I'm brainstorming.  What treatment can we do that is minimal that might improve or extend life.  I'm not sure Dad will want to do anything and that's ok, too.  I just don't want to miss any minimal options because the oncologist didn't think of them.  He's had good care, for the most part, at the VA.  I just want to make sure he gets what's best for him!

Thanks again,

Jan

Thanks, Jerry.  Dad is going to want quality, too, like your Dad. That's why I'm brainstorming.  What treatment can we do that is minimal that might improve or extend life.  I'm not sure Dad will want to do anything and that's ok, too.  I just don't want to miss any minimal options because the oncologist didn't think of them.  He's had good care, for the most part, at the VA.  I just want to make sure he gets what's best for him!

Thanks again,

Jan

Thanks, Linda. 

At this time, I think it's probably cherry picking or nothing.  I think the LND is going to be too much for him – just not a good choice for him.  He had high dose radiation for his lung cancer – 3 doses.  It took a lot out of him.  I could see doing radiation to the axilla, but going 5 days a week for 6 weeks won't appeal to him either.  He doesn't have a lot of stamina so probably not the best choice either.

Apparently, Dad was supposed to stop at the oncology desk after he had his scans to make an appointment.  The radiology techs had said everything was ok, so he assumed he was fine.  He said he asked if he needed to make an appointment but was told "no".  Dad is hard of hearing so who knows what really was said.  The doctor had an order in for a followup appointment, but my Dad didn't make it.  I still think the VA dropped the ball when no one called him or notified him of the results.

Thanks for your thoughts!

Janner

Thanks, Linda. 

At this time, I think it's probably cherry picking or nothing.  I think the LND is going to be too much for him – just not a good choice for him.  He had high dose radiation for his lung cancer – 3 doses.  It took a lot out of him.  I could see doing radiation to the axilla, but going 5 days a week for 6 weeks won't appeal to him either.  He doesn't have a lot of stamina so probably not the best choice either.

Apparently, Dad was supposed to stop at the oncology desk after he had his scans to make an appointment.  The radiology techs had said everything was ok, so he assumed he was fine.  He said he asked if he needed to make an appointment but was told "no".  Dad is hard of hearing so who knows what really was said.  The doctor had an order in for a followup appointment, but my Dad didn't make it.  I still think the VA dropped the ball when no one called him or notified him of the results.

Thanks for your thoughts!

Janner

Thanks for your reply.

My Dad already has chronic pain.  He had some hairline cracks in his femur after falling from a bicycle (age 84) and it has never healed.  It requires him to use a cane, now.  He's had 3 hip replacements, 2 knee replacements and 2 ankle fusions.  Both shoulders are bone-on-bone.  He's the bionic man.  Short term surgical pain doesn't worry me too much if he can do it without pain meds (usually his choice).  His last knee replacement was just over a year ago.  However, lymphedema and other complications from a LND or invasive surgery don't appeal to me (or him, I'm sure).  

In the end, I suspect he'll do nothing and just go on.  I'm fine with that.  I'm just trying to make sure I exhaust all possibilities for minimally invasive ideas that won't compromise quality but possible extend quantity.  He's pretty headstrong and, in the end, will do exactly what he wants.  I just want to make sure reasonable options are presented.

Thanks again,

Janner

Thanks for your reply.

My Dad already has chronic pain.  He had some hairline cracks in his femur after falling from a bicycle (age 84) and it has never healed.  It requires him to use a cane, now.  He's had 3 hip replacements, 2 knee replacements and 2 ankle fusions.  Both shoulders are bone-on-bone.  He's the bionic man.  Short term surgical pain doesn't worry me too much if he can do it without pain meds (usually his choice).  His last knee replacement was just over a year ago.  However, lymphedema and other complications from a LND or invasive surgery don't appeal to me (or him, I'm sure).  

In the end, I suspect he'll do nothing and just go on.  I'm fine with that.  I'm just trying to make sure I exhaust all possibilities for minimally invasive ideas that won't compromise quality but possible extend quantity.  He's pretty headstrong and, in the end, will do exactly what he wants.  I just want to make sure reasonable options are presented.

Thanks again,

Janner

Thanks for the info, Kim. 

I have not heard of Provenge.  I did a little searching.  I'm not sure he would be able to get the vaccine because he has not failed hormone therapy.  He can't tolerate the "hot flashes", etc. so he has taken himself off the hormone therapy.  The hormone therapy did reduce his PSA to almost nothing, but he won't stay on the therapy.  He asked me the other day if he should go back on the therapy and I said let's see what your most recent PSA is.  It hasn't been tested for almost 6 months.  If it has made a major jump upward again, then the prostate cancer probably needs to be addressed again.

As for IPI, I had not seen that it may also help with prostate cancer.  That is interesting.  I'm not sure he will have access to compassionate use IPI at the VA, but who knows.  He would never qualify for a clinical trial.  I worry about the possible side effects.  The gastrointesting side effects worry me as well as the possible nephritis.  He doesn't have great kidney function as it is right now.  He has had to delay some treatments for the prostate bone mets (Zometa?) because his kidney function was borderline.  However, it is certainly worth bringing up in discussion with the oncologist. 

At this time, I think we'll probably ignore the thyroid cancer.  He's had a goiter for years and this growth has been there along with the goiter for the last 5 years he's had scans.  I figure this is the least of his worries right now.

You are right about one thing, the different cancers have made him very hard to treat.  He sees someone for the lung cancer, a urologist for the prostate cancer… but where I feel the VA has let him down is there is no good coordination between all the disciplines.  The PCP just isn't equipped to coordinate all the care.  The general oncologist isn't a specialist in anything and hasn't seemed to take up the cause.  Each discipline would treat him,  but they don't seem to be able to coordinate his complex medical problems well.

Thanks again for your input!

Janner

Thanks for the info, Kim. 

I have not heard of Provenge.  I did a little searching.  I'm not sure he would be able to get the vaccine because he has not failed hormone therapy.  He can't tolerate the "hot flashes", etc. so he has taken himself off the hormone therapy.  The hormone therapy did reduce his PSA to almost nothing, but he won't stay on the therapy.  He asked me the other day if he should go back on the therapy and I said let's see what your most recent PSA is.  It hasn't been tested for almost 6 months.  If it has made a major jump upward again, then the prostate cancer probably needs to be addressed again.

As for IPI, I had not seen that it may also help with prostate cancer.  That is interesting.  I'm not sure he will have access to compassionate use IPI at the VA, but who knows.  He would never qualify for a clinical trial.  I worry about the possible side effects.  The gastrointesting side effects worry me as well as the possible nephritis.  He doesn't have great kidney function as it is right now.  He has had to delay some treatments for the prostate bone mets (Zometa?) because his kidney function was borderline.  However, it is certainly worth bringing up in discussion with the oncologist. 

At this time, I think we'll probably ignore the thyroid cancer.  He's had a goiter for years and this growth has been there along with the goiter for the last 5 years he's had scans.  I figure this is the least of his worries right now.

You are right about one thing, the different cancers have made him very hard to treat.  He sees someone for the lung cancer, a urologist for the prostate cancer… but where I feel the VA has let him down is there is no good coordination between all the disciplines.  The PCP just isn't equipped to coordinate all the care.  The general oncologist isn't a specialist in anything and hasn't seemed to take up the cause.  Each discipline would treat him,  but they don't seem to be able to coordinate his complex medical problems well.

Thanks again for your input!

Janner

Thanks, Laurie.

As for my Dad not telling us about the last tests, I think it is a combo of things.  My brother used to take him to all his appointments.  I still thought he was doing that.  But it turns out there were some issues there that I hadn't heard about – and his cancers seemed to be stable.  In general, Dad is pretty independent.  He's really not the type to keep things from us, he was just taking care of business.  But we are back to making sure at least one of us is at each appointment.

Thanks again,

Janner

Thanks, Laurie.

As for my Dad not telling us about the last tests, I think it is a combo of things.  My brother used to take him to all his appointments.  I still thought he was doing that.  But it turns out there were some issues there that I hadn't heard about – and his cancers seemed to be stable.  In general, Dad is pretty independent.  He's really not the type to keep things from us, he was just taking care of business.  But we are back to making sure at least one of us is at each appointment.

Thanks again,

Janner

Thanks, Mary.  I agree that cherry picking may be our best "low impact" strategy.  I plan to see what the onc has to offer, then add my own ideas if he doesn't address them all.  In the end, we will do whatever my Dad wants to do.  But I know he will listen to me if I suggest he do one low impact idea.  I'll only do that if I really think it's in his best interest.  I still need to hear how the onc interprets all the scan reports in case I missed something.

Thanks again for your input!

Janner

Thanks, Mary.  I agree that cherry picking may be our best "low impact" strategy.  I plan to see what the onc has to offer, then add my own ideas if he doesn't address them all.  In the end, we will do whatever my Dad wants to do.  But I know he will listen to me if I suggest he do one low impact idea.  I'll only do that if I really think it's in his best interest.  I still need to hear how the onc interprets all the scan reports in case I missed something.

Thanks again for your input!

Janner

Thanks, Jake.

In general, my Dad has always been a pretty healthy eater.  He's always been a physical fitness nut.  (This is the man who broke a leg cycling at age 84 and as recently as two months ago tried again to play some tennis).  He wore out most of his joints by overdoing any sports activity – hence all the artificial joints.  At his age, however, he has started to lose his taste for foods.  I am more concerned about keeping his strength up than anything else.  He doesn't have much stamina.  He's kept his cancers at bay for a reasonable time given his age and stage of progression.  I guess I feel that, at age 86, he deserves something sweet if he wants it.  I tend to have a bit of a differing opinion than you on which sugars might turn on tumor progression, but that also isn't something I discuss with my Dad.  When it comes to food, he will do what he wants. He will mostly be eating a fairly healthy diet, but probably not within the glycemic index guidelines.  My Mom (83) also suffers from lack of appetite/taste and has hypoglycemia.  He will often eat what appeals to my Mom just to get her to eat.  Sometimes, these situations aren't as simple as we'd like.  When it comes to treatment options, he will listen to me when I offer suggestions because he knows I have more knowledge than him about this beast.  He's a headstrong guy and I know which battles I choose to take on!  

Thanks again for your input!

Janner 

Thanks, Jake.

In general, my Dad has always been a pretty healthy eater.  He's always been a physical fitness nut.  (This is the man who broke a leg cycling at age 84 and as recently as two months ago tried again to play some tennis).  He wore out most of his joints by overdoing any sports activity – hence all the artificial joints.  At his age, however, he has started to lose his taste for foods.  I am more concerned about keeping his strength up than anything else.  He doesn't have much stamina.  He's kept his cancers at bay for a reasonable time given his age and stage of progression.  I guess I feel that, at age 86, he deserves something sweet if he wants it.  I tend to have a bit of a differing opinion than you on which sugars might turn on tumor progression, but that also isn't something I discuss with my Dad.  When it comes to food, he will do what he wants. He will mostly be eating a fairly healthy diet, but probably not within the glycemic index guidelines.  My Mom (83) also suffers from lack of appetite/taste and has hypoglycemia.  He will often eat what appeals to my Mom just to get her to eat.  Sometimes, these situations aren't as simple as we'd like.  When it comes to treatment options, he will listen to me when I offer suggestions because he knows I have more knowledge than him about this beast.  He's a headstrong guy and I know which battles I choose to take on!  

Thanks again for your input!

Janner 

Thanks, Ellen.  I am trying to keep him out of the hospital if at all possible.  If we cherry pick a lymph node, I believe he can have that done under a local.  Anything that keeps him as an inpatient won't be a good choice in his eyes.  I agree, I want him home so everything is as normal as possible!

Thanks for your good wishes and input,

Janner

Thanks, Ellen.  I am trying to keep him out of the hospital if at all possible.  If we cherry pick a lymph node, I believe he can have that done under a local.  Anything that keeps him as an inpatient won't be a good choice in his eyes.  I agree, I want him home so everything is as normal as possible!

Thanks for your good wishes and input,

Janner

Thanks, Cynthia.  Yes, just enjoy the ride.  My Dad is all about that.  He's always worked hard and played hard.  We'll discuss the latest again after we hear from the onc, but it will be whatever makes HIM happy.  At this point in time, there is no point in fighting against him and wanting him to do invasive treatments.  Heck, if there were any fantastic treatments (read CURE) for melanoma, I might have a differing opinion.  Even though there are some promising things on the horizon, they aren't ready for my Dad yet.  So minimal and simple is the ticket.

Thanks so much for your feedback, I appreciate it!

Janner

Thanks, Cynthia.  Yes, just enjoy the ride.  My Dad is all about that.  He's always worked hard and played hard.  We'll discuss the latest again after we hear from the onc, but it will be whatever makes HIM happy.  At this point in time, there is no point in fighting against him and wanting him to do invasive treatments.  Heck, if there were any fantastic treatments (read CURE) for melanoma, I might have a differing opinion.  Even though there are some promising things on the horizon, they aren't ready for my Dad yet.  So minimal and simple is the ticket.

Thanks so much for your feedback, I appreciate it!

Janner

Hi Jerry,

Thanks for the feedback.  I'm not sure that the VA will be the place to get BRAF or C-KIT testing for my 86 year old Dad.  He has no other insurance so that is his only option.  Since the oncologist is just a general oncologist he sees, it's likely the guy doesn't even have a clue about that stuff.  I plan on asking him about IPI and I will add C-Kit to the list.  But truthfully, I think that even cherry picking a node might be more than my Dad wants to do.  He might operate better in the "ignorance is bliss" mode at this time.  This latest has him more depressed than I've ever seen him.  I almost think ignoring this might make him the happiest – and THAT is quality, too.

So you have had minimal side effects from the C-KIT drug? 

Thanks again,

Janner

Hey Jerry,

I wasn't thinking straight last night.  It's pretty unlikely that Dad has the C-Kit mutation.  His melanoma was certainly not mucosal.  It was superficial spreading on his shoulder blade.  That doesn't rule out B-RAF, however.  If the VA determine that he needs a treatment outside of what they can offer, they will send him elsewhere.  He was sent to the local cancer center for 4D radiation on his lung tumor.  It was state of the art treatment.  But if the VA has treatments available, they may not refer him out.  He has no supplemental insurance or any money to pay for it on his own, so he's at the mercy of the VA.

Dad was a Marine and served toward the end of WWII in the south Pacific.  He was actually trying to be one of the first Marine pilots, but ran into red tape.  He ended up as a bombadier.  He spent most of his time on islands that had just been liberated – more cleanup than action.  Later he was in China.

Semper Fi!

Janner

Hey Jerry,

I wasn't thinking straight last night.  It's pretty unlikely that Dad has the C-Kit mutation.  His melanoma was certainly not mucosal.  It was superficial spreading on his shoulder blade.  That doesn't rule out B-RAF, however.  If the VA determine that he needs a treatment outside of what they can offer, they will send him elsewhere.  He was sent to the local cancer center for 4D radiation on his lung tumor.  It was state of the art treatment.  But if the VA has treatments available, they may not refer him out.  He has no supplemental insurance or any money to pay for it on his own, so he's at the mercy of the VA.

Dad was a Marine and served toward the end of WWII in the south Pacific.  He was actually trying to be one of the first Marine pilots, but ran into red tape.  He ended up as a bombadier.  He spent most of his time on islands that had just been liberated – more cleanup than action.  Later he was in China.

Semper Fi!

Janner

Hi Jerry,

Thanks for the feedback.  I'm not sure that the VA will be the place to get BRAF or C-KIT testing for my 86 year old Dad.  He has no other insurance so that is his only option.  Since the oncologist is just a general oncologist he sees, it's likely the guy doesn't even have a clue about that stuff.  I plan on asking him about IPI and I will add C-Kit to the list.  But truthfully, I think that even cherry picking a node might be more than my Dad wants to do.  He might operate better in the "ignorance is bliss" mode at this time.  This latest has him more depressed than I've ever seen him.  I almost think ignoring this might make him the happiest – and THAT is quality, too.

So you have had minimal side effects from the C-KIT drug? 

Thanks again,

Janner