How much would we spend extra on ourselves?

tanstaafl

"... Spending dollars on supplements and seminars may just not be possible, without some extremely good numbers on a success rate." - LoveKitties. Not to hijack Pete's thread, I have a question. I've seen total chemo cost rates from 50K - 500K+ per year posted, with various annual out of pocket caps. Total costs for some have gone over $1 million in a year, but...

What would you (to any and all here) spend out of pocket, actual personal payments, on a non re-imbursable basis (beyond any insurance, waiver or grants), to add 1 good year of life, with little or no side effects. Or to shift a 5 yr survival prognosis, say from 20% to 30%, or 70% to 80%? Although this type of calculus might apply most to (self) experimental and alternative medicine, it certainly is a factor with many treatment decisions.

Lovekitties

In reply
Just to clarify...when I talked about the financial issue, I was not indicating that folks "wouldn't" spend the money, but was rather infering that they "couldn't". There is a big difference.

How one spends their disposable income depends on their life circumstances and what their beliefs are regarding the vairous options available.

Would I spend everything I have to have to get better odds on living 5 more years? The answer is no. But then I am a senior citizen. I would have little or no ability to replace that money so would have none to live on those 5 years. Living on a fixed income, I don't have the option to add non-covered treatments.

Unfortunately, finances do have an impact on most folks as to what options are realistically available to them.

If I won the lottery though I am not sure my choice would be any different regarding treatment.

I don't put down anyones choices in this fight. We each have to do what we feel is our best choice given the cards we are dealt.

Marie who loves kitties

PhillieG

The Sky's the Limit!
A few years back (4?) I did a fairly good guesstimate on what's been spent for my care.
Somehow I didn't feel like a million bucks but that's what it was...

Interesting and good question. Unfortunately I don't have an either good or interesting answer.
I have very limited resources so I am constrained by those factors.
My choices are:
1- deal with insurance and go that route and hope for the best.
2- abandon that route and spend the monies on a healthier organic diet and hope for the best.
-phil

tanstaafl

Lovekitties said:

In reply
Just to clarify...when I talked about the financial issue, I was not indicating that folks "wouldn't" spend the money, but was rather infering that they "couldn't". There is a big difference.

How one spends their disposable income depends on their life circumstances and what their beliefs are regarding the vairous options available.

Would I spend everything I have to have to get better odds on living 5 more years? The answer is no. But then I am a senior citizen. I would have little or no ability to replace that money so would have none to live on those 5 years. Living on a fixed income, I don't have the option to add non-covered treatments.

Unfortunately, finances do have an impact on most folks as to what options are realistically available to them.

If I won the lottery though I am not sure my choice would be any different regarding treatment.

I don't put down anyones choices in this fight. We each have to do what we feel is our best choice given the cards we are dealt.

Marie who loves kitties

all decision factors, hard dollars
Thanks, Marie. The general question weighs on my mind automatically because of circumstances. The question frequently reflects new, uninsured treatments. Either off label usage or a new treatment first licensed outside the US, as well as experimental and alternative medicine. Perhaps Canadians who come to the US outside of the provincial plans. Only a few have discussed this.

tanstaafl

PhillieG said:

The Sky's the Limit!
A few years back (4?) I did a fairly good guesstimate on what's been spent for my care.
Somehow I didn't feel like a million bucks but that's what it was...

Interesting and good question. Unfortunately I don't have an either good or interesting answer.
I have very limited resources so I am constrained by those factors.
My choices are:
1- deal with insurance and go that route and hope for the best.
2- abandon that route and spend the monies on a healthier organic diet and hope for the best.
-phil

let's count pills, powders, injectables, prof providers, exotics
Our experience has been that basic healthy eating at home is cheaper, avoiding undue premiums for any "organic" that is over priced, and not being too fussy.

PhillieG

Lovekitties said:

In reply
Just to clarify...when I talked about the financial issue, I was not indicating that folks "wouldn't" spend the money, but was rather infering that they "couldn't". There is a big difference.

How one spends their disposable income depends on their life circumstances and what their beliefs are regarding the vairous options available.

Would I spend everything I have to have to get better odds on living 5 more years? The answer is no. But then I am a senior citizen. I would have little or no ability to replace that money so would have none to live on those 5 years. Living on a fixed income, I don't have the option to add non-covered treatments.

Unfortunately, finances do have an impact on most folks as to what options are realistically available to them.

If I won the lottery though I am not sure my choice would be any different regarding treatment.

I don't put down anyones choices in this fight. We each have to do what we feel is our best choice given the cards we are dealt.

Marie who loves kitties

Choice
You're so right Marie, that's the bottom line for us all.
I find it to be an interesting question but it deals with so many variables like if spending the money guarantees success...
I do know I wouldn't sell everything for a chance at more years. I have a wife and kids. Now, take my wife...please! I still have young kids to think about.

I've followed Pete's journey and he is fortunate to have many resources to draw from so it's enabled him to try things others couldn't. I'm quite sure that Pete is very aware of this and is thankful for all of that. To compare what different members do as far as treatment goes is like trying to compare an apple with a tumor to an orange with a tumor. They both have tumors, that's all. Not to keep mentioning Pete (but the post is an offshoot of his about himself) but Pete doesn't have to do what he does, he just chooses to do so.

phil
who has two cats that used to be kittens!
:-)

PhillieG

tanstaafl said:

let's count pills, powders, injectables, prof providers, exotics
Our experience has been that basic healthy eating at home is cheaper, avoiding undue premiums for any "organic" that is over priced, and not being too fussy.

Organic
I belong to my local CSA so organics are not too pricy. I don't quite understand the subject of your reply.
I think we'd all spend what we can spend but it didn't seem like you originally asked if we would spend what our out of pocket costs were on other methods...
Did I read that wrong?
What would you (to any and all here) spend out of pocket, actual personal payments, on a non re-imbursable basis (beyond any insurance, waiver or grants), to add 1 good year of life, with little or no side effects. Or to shift a 5 yr survival prognosis, say from 20% to 30%, or 70% to 80%? Although this type of calculus might apply most to (self) experimental and alternative medicine, it certainly is a factor with many treatment decisions.
No, don't think so...

tanstaafl

PhillieG said:

Organic
I belong to my local CSA so organics are not too pricy. I don't quite understand the subject of your reply.
I think we'd all spend what we can spend but it didn't seem like you originally asked if we would spend what our out of pocket costs were on other methods...
Did I read that wrong?
What would you (to any and all here) spend out of pocket, actual personal payments, on a non re-imbursable basis (beyond any insurance, waiver or grants), to add 1 good year of life, with little or no side effects. Or to shift a 5 yr survival prognosis, say from 20% to 30%, or 70% to 80%? Although this type of calculus might apply most to (self) experimental and alternative medicine, it certainly is a factor with many treatment decisions.
No, don't think so...

Thanks, "spend extra". I
Thanks, "spend extra". I treat rational food changes mostly as a replacement, not "an extra".

At least, new members are confronted with unknown, expanding choices with increasing lock in. On the day of dx, one is locked in on savings and health insurance. One of the considerations is that the current US situation typically forces a rapid spend down with inflated prices. Then double lockin, without savings, and so on.

With new treatments or combinations, conventional, experimental and alternative, insurance payments aren't available. So how to skin the cat? It starts with a budget.

PhillieG

tanstaafl said:

Thanks, "spend extra". I
Thanks, "spend extra". I treat rational food changes mostly as a replacement, not "an extra".

At least, new members are confronted with unknown, expanding choices with increasing lock in. On the day of dx, one is locked in on savings and health insurance. One of the considerations is that the current US situation typically forces a rapid spend down with inflated prices. Then double lockin, without savings, and so on.

With new treatments or combinations, conventional, experimental and alternative, insurance payments aren't available. So how to skin the cat? It starts with a budget.

Whoa...
Leave the cats out of it please...
I agree that we need a better system in place with regard to more choices in health care (that are covered just like the mainstream ones are).
We need a food industry that cares about health and a healthcare system that cares about food.
Battling and beating cancer most likely requires help from ALL fronts...
-phil
if there's more than one way to skin a cat, just what is the one way we're all supposed to know?
Please don't answer that...

danker

tanstaafl said:

Thanks, "spend extra". I
Thanks, "spend extra". I treat rational food changes mostly as a replacement, not "an extra".

At least, new members are confronted with unknown, expanding choices with increasing lock in. On the day of dx, one is locked in on savings and health insurance. One of the considerations is that the current US situation typically forces a rapid spend down with inflated prices. Then double lockin, without savings, and so on.

With new treatments or combinations, conventional, experimental and alternative, insurance payments aren't available. So how to skin the cat? It starts with a budget.

tanstaafi
I'M almost 3 years out from mt dx and currently NED. I am also the care giver to my wife of 55 years who has alzheimers. I need to stay
alive to care for my wife, But I also need to conserve my wealth for when my wife requires care that I cannot give. Her Care could easily run $5000 per month. What do you suggest I do? Doeas anybody have a good answer?

Lovekitties

tanstaafl said:

Thanks, "spend extra". I
Thanks, "spend extra". I treat rational food changes mostly as a replacement, not "an extra".

At least, new members are confronted with unknown, expanding choices with increasing lock in. On the day of dx, one is locked in on savings and health insurance. One of the considerations is that the current US situation typically forces a rapid spend down with inflated prices. Then double lockin, without savings, and so on.

With new treatments or combinations, conventional, experimental and alternative, insurance payments aren't available. So how to skin the cat? It starts with a budget.

Please, no skinning of cats! lol
A budget is all well and good, but finances remain (and always will) a prominent player in our fight.

The downturn of the economy in the USA, and the world, have put a serious dent in finances for many...costs of even the basic living expenses have risen greatly while for most the inflow of cash has either remained stagnant or declined.

My own situation is that in the last 12 months my basic expenses have risen over 20%...and beleive me when I say basic...that is what it means...and I don't live in a major city.

Having a budget does not insure that there is anything left to "spend extra".

I have gotten a little lost on the initial point of your question, tanstaafl. Could you offer more clarification? Are you asking what price we would each put on a chance at a longer life, or are you asking if we would put all we have into additions/alternatives (either with or without traditional treatments)hoping that it would give us that longer life?

Kathryn_in_MN

Would or Could?
Unfortunately often the answer is how much can/could you spend, rather than how much do/would you spend. I am all for complimentary therapies and trying less toxic approaches. But reality is we are basically medically bankrupt after surgery, scans, and treatments in 4 calendar years in a row, on top of some big medical costs for my husband as well, with 3 colonoscopies (5 polyps removed and biopsied) and two upper GI's (Barrett's biopsies and stretching a stricture) one year. Add to that my son's sports injuries, strep and more... And we don't even pay the medical for my oldest two anymore (we carry the insurance, but they pay all out of pocket costs).

I would absolutely love to try acupuncture. I would like to try some compounds that are not as toxic as most chemo during the times I need to be on chemo. But the reality is I can run up a tab and be on a payment plan with the hospital or the oncologist. I don't have that luxury with a naturapath, acupuncturist, or provider of compounds I may want to try. So I push for what is least toxic to my body that I can still afford, that has a good chance of keeping my cancer under control. So far by changing up my treatment plan from what was originally intended, I'm doing pretty well!

tanstaafl

Lovekitties said:

Please, no skinning of cats! lol
A budget is all well and good, but finances remain (and always will) a prominent player in our fight.

The downturn of the economy in the USA, and the world, have put a serious dent in finances for many...costs of even the basic living expenses have risen greatly while for most the inflow of cash has either remained stagnant or declined.

My own situation is that in the last 12 months my basic expenses have risen over 20%...and beleive me when I say basic...that is what it means...and I don't live in a major city.

Having a budget does not insure that there is anything left to "spend extra".

I have gotten a little lost on the initial point of your question, tanstaafl. Could you offer more clarification? Are you asking what price we would each put on a chance at a longer life, or are you asking if we would put all we have into additions/alternatives (either with or without traditional treatments)hoping that it would give us that longer life?

some clarification
I am more treating the survival stats going forward, "time remaining" as if certainties from most current tables, as if we could glue an improvement in for a price, to try to avoid the speculative "what works" discussions.

How might real people allocate their limited budget to "extra treatment" vs other needs, desires, QoL, estate, uncertainties. When we get strapped for cash, as is common in the US price-performance structure of treatment, the amount available for "extra" becomes low or zero, even if it is "everything". Early, especially cost effective improvements would save these resources for later use, as well as add the time or improved statistic.

tanstaafl

Kathryn_in_MN said:

Would or Could?
Unfortunately often the answer is how much can/could you spend, rather than how much do/would you spend. I am all for complimentary therapies and trying less toxic approaches. But reality is we are basically medically bankrupt after surgery, scans, and treatments in 4 calendar years in a row, on top of some big medical costs for my husband as well, with 3 colonoscopies (5 polyps removed and biopsied) and two upper GI's (Barrett's biopsies and stretching a stricture) one year. Add to that my son's sports injuries, strep and more... And we don't even pay the medical for my oldest two anymore (we carry the insurance, but they pay all out of pocket costs).

I would absolutely love to try acupuncture. I would like to try some compounds that are not as toxic as most chemo during the times I need to be on chemo. But the reality is I can run up a tab and be on a payment plan with the hospital or the oncologist. I don't have that luxury with a naturapath, acupuncturist, or provider of compounds I may want to try. So I push for what is least toxic to my body that I can still afford, that has a good chance of keeping my cancer under control. So far by changing up my treatment plan from what was originally intended, I'm doing pretty well!

analysis
Limited by could, either today, or perhaps at an earlier point in diagnosis from real budgets with competing demands. Bankruptcy doesn't necessarily eliminate all outside "extra" but it suggests very real limits to supply, like current earnings/expenses tradeoffs and family.

This is open ended because we are in different situations, from insurance and nationality, to time in costly treatment and savings already spent. But we will have to deal with technical opportunities, probably more insurance restrictions on treatments outside "approved" regimens. The question is, after the conventional treatments and insurance trap, what can people typically do, based on financial realities? Again, after several years of heavy expenses, the answer is little or nothing "outside of the channelized system" for most families.

steved

tanstaafl said:

analysis
Limited by could, either today, or perhaps at an earlier point in diagnosis from real budgets with competing demands. Bankruptcy doesn't necessarily eliminate all outside "extra" but it suggests very real limits to supply, like current earnings/expenses tradeoffs and family.

This is open ended because we are in different situations, from insurance and nationality, to time in costly treatment and savings already spent. But we will have to deal with technical opportunities, probably more insurance restrictions on treatments outside "approved" regimens. The question is, after the conventional treatments and insurance trap, what can people typically do, based on financial realities? Again, after several years of heavy expenses, the answer is little or nothing "outside of the channelized system" for most families.

A price on life?
It is an interesting general concept of how much a year of quality life is worth. Here in the UK the health system is almost entirely public- funded through taxes and free to all at the point of use. However, it is extremely expensive to the state so there is a body called NICE that regulates the availability of treatments. They work out what treatments are 'cost effective' and one of the tools they use is a QALY (quality adjusted life year) and suggest a treatment is cost effective if it provides on average a year of quality life for less thant £80,000. It is a cold hearted calculation but one that rings true in this discussion.

Would I spend that to have another year? HArd to answer when it is yourself.

Steve

tanstaafl

steved said:

A price on life?
It is an interesting general concept of how much a year of quality life is worth. Here in the UK the health system is almost entirely public- funded through taxes and free to all at the point of use. However, it is extremely expensive to the state so there is a body called NICE that regulates the availability of treatments. They work out what treatments are 'cost effective' and one of the tools they use is a QALY (quality adjusted life year) and suggest a treatment is cost effective if it provides on average a year of quality life for less thant £80,000. It is a cold hearted calculation but one that rings true in this discussion.

Would I spend that to have another year? HArd to answer when it is yourself.

Steve

getting to treatment above and beyond the minimum...
Perhaps it's hard to address an ultimate, highest outlay figure. Identifying something doable is a start.

This question was meant to possibly enable more choices beyond the cold hand of third party payers, such as US insurance and perhaps national governments. More than once I've seen people on the boards brought up short financially by their insurer, private or national, after interminable delays and crass bureaucracy when time was of the essence, for overpriced, underperforming products. The idea is to eliminate delay and get better choices.

PhillieG

tanstaafl said:

some clarification
I am more treating the survival stats going forward, "time remaining" as if certainties from most current tables, as if we could glue an improvement in for a price, to try to avoid the speculative "what works" discussions.

How might real people allocate their limited budget to "extra treatment" vs other needs, desires, QoL, estate, uncertainties. When we get strapped for cash, as is common in the US price-performance structure of treatment, the amount available for "extra" becomes low or zero, even if it is "everything". Early, especially cost effective improvements would save these resources for later use, as well as add the time or improved statistic.

Clear as Starbucks Coffee :-)
"I am more treating the survival stats going forward, "time remaining" as if certainties from most current tables, as if we could glue an improvement in for a price, to try to avoid the speculative "what works" discussions."

I don't believe in stats other than I am 100% certain that I will die one day. It's part of the life cycle.
If I had say... $1000 extra to spend I might buy a nice guitar instead of going to a health clinic for a detox.
I don't have $1000 so it's speculative. If I DID have it, I might do the detox. It's hard to answer the question given there are so many "what ifs" involved...

I still like the question though...
I've been very busy lately so I'm a bit fried in the brain cell dept. Not from chemo, just from too much coding, so it's likely just me.
-p

Annabelle41415

steved said:

A price on life?
It is an interesting general concept of how much a year of quality life is worth. Here in the UK the health system is almost entirely public- funded through taxes and free to all at the point of use. However, it is extremely expensive to the state so there is a body called NICE that regulates the availability of treatments. They work out what treatments are 'cost effective' and one of the tools they use is a QALY (quality adjusted life year) and suggest a treatment is cost effective if it provides on average a year of quality life for less thant £80,000. It is a cold hearted calculation but one that rings true in this discussion.

Would I spend that to have another year? HArd to answer when it is yourself.

Steve

That is cold hard reality when they put a price tag on one's life attached to a dollar amount. Afraid that is where we are heading too.

Kim

son of hal

This is an interesting topic
This is an interesting topic if not a bit confusing. I'm only 48 but I think I agree with Marie. I make other food choices and use some supplements but they are replacements not extras. I have a wife and kids and I can't see selling off everything & probably leaving even more debt to get (maybe)a few extra years of a cancer filled life. (I personally don't have much to begin with) Right now I am fortunate to be NED from stage II rectal. But, seeing how I've already had one recurrence and rectal has a bad track record of that I'm happy for what I have now. When I was diagnosed I was one year in a new home, had money in the bank, a great credit rating and tolerable credit debt. Now, 2 1/2 years later, between surgeries, time off work, treatments and monitoring (scans), my credit rating is shot, my credit cards are maxed out, I've got $0.00 in savings, I owe every hospital in the area and collections calling daily for about $18,000 in medical debt. So like others, the opition is not there for other treatments. I think if there is some knowledge to be gained from this topic for newbies it would be, explore your treatment options early on. I believe we all wait too long before really researching other options which, both financially and physically, may be more productive and beneficial if started as soon as possible from diagnosis. We know from witnessing it here the longer you are in this the weaker you become both financially and physically. Cancer takes it's toll over the long haul and some people just can't weather the storm. I guess not everyone goes broke but it takes a chunk out regardless.
Take care,

Lovekitties

son of hal said:

This is an interesting topic
This is an interesting topic if not a bit confusing. I'm only 48 but I think I agree with Marie. I make other food choices and use some supplements but they are replacements not extras. I have a wife and kids and I can't see selling off everything & probably leaving even more debt to get (maybe)a few extra years of a cancer filled life. (I personally don't have much to begin with) Right now I am fortunate to be NED from stage II rectal. But, seeing how I've already had one recurrence and rectal has a bad track record of that I'm happy for what I have now. When I was diagnosed I was one year in a new home, had money in the bank, a great credit rating and tolerable credit debt. Now, 2 1/2 years later, between surgeries, time off work, treatments and monitoring (scans), my credit rating is shot, my credit cards are maxed out, I've got $0.00 in savings, I owe every hospital in the area and collections calling daily for about $18,000 in medical debt. So like others, the opition is not there for other treatments. I think if there is some knowledge to be gained from this topic for newbies it would be, explore your treatment options early on. I believe we all wait too long before really researching other options which, both financially and physically, may be more productive and beneficial if started as soon as possible from diagnosis. We know from witnessing it here the longer you are in this the weaker you become both financially and physically. Cancer takes it's toll over the long haul and some people just can't weather the storm. I guess not everyone goes broke but it takes a chunk out regardless.
Take care,

A caveat
I think it is important to remove surgery from the mix of treatments which may be considered optional.

Whether it is colon or rectal cancer, a tumor blocking outflow can cause surgery to be an absolute must. As a personal opinion, I also feel that surgical removal of the primary source of the cancer is the best bet.

We can always make an informed choice about chemo and radiation.

tanstaafl

Lovekitties said:

A caveat
I think it is important to remove surgery from the mix of treatments which may be considered optional.

Whether it is colon or rectal cancer, a tumor blocking outflow can cause surgery to be an absolute must. As a personal opinion, I also feel that surgical removal of the primary source of the cancer is the best bet.

We can always make an informed choice about chemo and radiation.

extra surgery
Usually a surgery performed is standard of care, and if 2-3 doctors say "no" or "chemo", I suspect most people let it go at that. Sometimes surgery is a very personal "extra" option. We had to look high and low to find a surgeon willing and able for my wife the second time. And then the surgeon agreed only after we had interviewed his hospital's medical and radio oncologists about radiation and their chemo prospects. (Not a chance, we had already been through at least 6 rad oncs and several med oncs)

In our case, radiation was not a good option, and chemo had little to no upside potential like the surgery, no matter how infrequently demanded. We paid about 70% of the whole bill (after limited insurance paid the rest) for an excellent result.