Re: Avastin questions.... pet vs cat scans

[Guest guest]

Tracey,

Stay strong. I'll provide a couple of thoughts, some of which I

suspect that you already know. Hopefully they are not too long.

1. I suspect that your husband does not complain and perhaps does

not bring things up because, ignoring the cancer for a second, he is

a 33 year old guy with pride. I suspect that his first priority

continues to be (or he wishes it to be) to look after his family and

in that role, he will try to insulate you just as I do with my

family (I'm a 40 yr old stg IV). Yes, my wife calls behind my back

and yes, I get a little upset when she does it, but only for 5

minutes or so. In fact, sometimes I'll ask her what the doc told

her because she calls and asks questions that sometimes I do not ask.

2. PET Scans are done for restaging or evaluation of metastatic

disease. Most doctors do not use them for routine screening - if

you know where a tumor is, the CT Scan provides an adequate

mechanism, usually, by which to evaluate progression. At some point

in time, detection of further metastatic disease is relatively

inconsequential - one is going to get the same systemic treatment no

matter what. Further examination may actually do more harm than

good in terms of stress. Bones are an exception - I think docs want

to know when the disease gets into the bones, because it can be

painful and unlike many other spots, radiation can help. At the

same time though, I think that bone scans are equally appropriate,

if not more appropriate, for detection of disease in the bones.

3. I do know for a fact that PET Scans are covered under medicare.

I think if you feel strongly about it, and insist, you should be

able to get one done. If you look around the web enough, you can

even find the medicare billing code.

4. I don't think that being on medicare reduces coverage that much

or puts you in a separate class of treatment. The fact that any

insurance is anteing up the money for Avastin, which is very

expensive, is indicative that you're still getting aggressive

treatment. I am an active duty type, and my coverage is nothing

more than a medicare equivalent. Although my doctor/facility

choices are limited, I think that within that domain I do pretty

well and have everything available. Welfare = Medicaid (not

medicare) or no capability to pay at all. These are state

programs. It is in these cases where people have to be admitted to

ERs or wards in teaching hospitals to get treated, not medicare. Do

you have to pay copays up front or entire bills? Copays are

understandable. If it is otherwise, Perhaps a good discussion with

the billing department can clear things up - if that doesn't work,

maybe dropping a line to your local congressman will help. I don't

think it should be that way.

5. As you know, cancer drugs are pretty strong stuff. Considering

the potential consequences of not taking them, the side effects or

risk has to be pretty elevated in order to justify witholding them

for fear of damage, unless the patient specifically requests such.

I think the same thing is true for Avastin. The two major side

effects are hypertension and retardation or reversal of wound

healing (for < 30 days after surgery). One would want to avoid it

for wound healing, as the infection from a separated colon can kill

you way before the cancer could. Hypertension, although it can lead

to stroke or heart failure, can usually be controlled. Bottom line -

if you are concerned about the risk of heart attack and think it is

more serious than the risk of the cancer, pin down your doc and make

him justify to you that he can keep the risk under control.

Hope this helps. All the best.

Joe

http://www.cancerdaytoday.blogspot.com

>

> I have some questions about my husbands treatment. He is stage IV

> colon cancer. He has fought this for four years now. He is only

33.

> He has been on the normal regiments until he went through an

> olyiplatin trial. now he is on avastin. He complains about a lot

of

> shoulder pain. He won't clarify if its the muscle or bone. he does

> not want me to know. He has complained about hip and knee pain in

the

> past. He tells his Dr minimum details of what is wrong and gets

mad

> when I call up there. I think he is afraid to know. About two

months

> ago he had what sounded like a heart-attack. I called the Dr and

they

> sent him for testing. The results were " prolonged use of highly

> dangerous chemicals " . they put him right back on the same

regiment.

> Could this not be a sign that he will have a life threatening

heart-

> attack if he keeps using the same meds? He had cat scans two weeks

> ago. they showed no new growth or new points of concern. He has

spots

> on the pancreas and inflamed lypmh nodes in his stomach. We were

> pleased that the results showed not changed. My problem is up

until a

> year and three months ago, he was getting pet scans. I know they

show

> much more clearly about what is going on. My husband went from

good

> insurance to none for three months , now he is on medicare. Now

the

> Dr makes us pay up front for each treatment. I am afraid they have

> lowered his level of care so that they don't have to be out more

> money on treating him. I feel like they treat him like a welfare

> patient, and only do what they have to do. I am afraid it is in

the

> bone. I don't know that muscle pain or arthritis might be a

coexsting

> symptom with the meds he takes. I know that before a test he gets

> very nervous but gets better when we get the results. this time he

> has not calmed back down as quickly. I think he knows more than

hes

> telling. What do I do??? Are they just giving up on him???

[Guest guest]

I don't think they are giving up on him and I think you need to make sure

they know his symptoms and definitely tell his Dr. about your concerns.

Narice

" As long as I know the WHO

I can bear any HOW

even though I don't know WHY "

(Commentary on Job from Dialogue in Despair)

[Guest guest]

Thnks for your input. It does clarify a few things. I have two

questions. First about the scans and bones. If he is getting cat

scans, can they tell if cancer has spread to the bones? I didn't

think so butI wasn't sure. and lastly Is forgetfulness a result of

chemo. I am not talking about forgetting where he left his keys. But

he will start a fight with me about something silly and then hours

later forget he said anything?? He has always had a mind like a

trap. He could remember tiny details from years ago, but now he

can't remember conversations five minutes. not always but he does it

often enough that I catch it but other people don't.

Tracey

---

In colon_cancer_support , " Joe " <jsulli8@n...> wrote:

>

> Tracey,

> Stay strong. I'll provide a couple of thoughts, some of which

I

> suspect that you already know. Hopefully they are not too long.

>

> 1. I suspect that your husband does not complain and perhaps does

> not bring things up because, ignoring the cancer for a second, he

is

> a 33 year old guy with pride. I suspect that his first priority

> continues to be (or he wishes it to be) to look after his family

and

> in that role, he will try to insulate you just as I do with my

> family (I'm a 40 yr old stg IV). Yes, my wife calls behind my

back

> and yes, I get a little upset when she does it, but only for 5

> minutes or so. In fact, sometimes I'll ask her what the doc told

> her because she calls and asks questions that sometimes I do not

ask.

>

> 2. PET Scans are done for restaging or evaluation of metastatic

> disease. Most doctors do not use them for routine screening - if

> you know where a tumor is, the CT Scan provides an adequate

> mechanism, usually, by which to evaluate progression. At some

point

> in time, detection of further metastatic disease is relatively

> inconsequential - one is going to get the same systemic treatment

no

> matter what. Further examination may actually do more harm than

> good in terms of stress. Bones are an exception - I think docs

want

> to know when the disease gets into the bones, because it can be

> painful and unlike many other spots, radiation can help. At the

> same time though, I think that bone scans are equally appropriate,

> if not more appropriate, for detection of disease in the bones.

>

> 3. I do know for a fact that PET Scans are covered under

medicare.

> I think if you feel strongly about it, and insist, you should be

> able to get one done. If you look around the web enough, you can

> even find the medicare billing code.

>

> 4. I don't think that being on medicare reduces coverage that

much

> or puts you in a separate class of treatment. The fact that any

> insurance is anteing up the money for Avastin, which is very

> expensive, is indicative that you're still getting aggressive

> treatment. I am an active duty type, and my coverage is nothing

> more than a medicare equivalent. Although my doctor/facility

> choices are limited, I think that within that domain I do pretty

> well and have everything available. Welfare = Medicaid (not

> medicare) or no capability to pay at all. These are state

> programs. It is in these cases where people have to be admitted

to

> ERs or wards in teaching hospitals to get treated, not medicare.

Do

> you have to pay copays up front or entire bills? Copays are

> understandable. If it is otherwise, Perhaps a good discussion

with

> the billing department can clear things up - if that doesn't work,

> maybe dropping a line to your local congressman will help. I

don't

> think it should be that way.

>

> 5. As you know, cancer drugs are pretty strong stuff.

Considering

> the potential consequences of not taking them, the side effects or

> risk has to be pretty elevated in order to justify witholding them

> for fear of damage, unless the patient specifically requests

such.

> I think the same thing is true for Avastin. The two major side

> effects are hypertension and retardation or reversal of wound

> healing (for < 30 days after surgery). One would want to avoid it

> for wound healing, as the infection from a separated colon can

kill

> you way before the cancer could. Hypertension, although it can

lead

> to stroke or heart failure, can usually be controlled. Bottom

line -

> if you are concerned about the risk of heart attack and think it

is

> more serious than the risk of the cancer, pin down your doc and

make

> him justify to you that he can keep the risk under control.

>

> Hope this helps. All the best.

>

> Joe

>

> http://www.cancerdaytoday.blogspot.com

>

> >

> > I have some questions about my husbands treatment. He is stage

IV

> > colon cancer. He has fought this for four years now. He is only

> 33.

> > He has been on the normal regiments until he went through an

> > olyiplatin trial. now he is on avastin. He complains about a lot

> of

> > shoulder pain. He won't clarify if its the muscle or bone. he

does

> > not want me to know. He has complained about hip and knee pain

in

> the

> > past. He tells his Dr minimum details of what is wrong and gets

> mad

> > when I call up there. I think he is afraid to know. About two

> months

> > ago he had what sounded like a heart-attack. I called the Dr and

> they

> > sent him for testing. The results were " prolonged use of highly

> > dangerous chemicals " . they put him right back on the same

> regiment.

> > Could this not be a sign that he will have a life threatening

> heart-

> > attack if he keeps using the same meds? He had cat scans two

weeks

> > ago. they showed no new growth or new points of concern. He has

> spots

> > on the pancreas and inflamed lypmh nodes in his stomach. We were

> > pleased that the results showed not changed. My problem is up

> until a

> > year and three months ago, he was getting pet scans. I know they

> show

> > much more clearly about what is going on. My husband went from

> good

> > insurance to none for three months , now he is on medicare. Now

> the

> > Dr makes us pay up front for each treatment. I am afraid they

have

> > lowered his level of care so that they don't have to be out more

> > money on treating him. I feel like they treat him like a welfare

> > patient, and only do what they have to do. I am afraid it is in

> the

> > bone. I don't know that muscle pain or arthritis might be a

> coexsting

> > symptom with the meds he takes. I know that before a test he

gets

> > very nervous but gets better when we get the results. this time

he

> > has not calmed back down as quickly. I think he knows more than

> hes

> > telling. What do I do??? Are they just giving up on him???

[Guest guest]

See below. Best - Joe

> > >

> > > I have some questions about my husbands treatment. He is stage

> IV

> > > colon cancer. He has fought this for four years now. He is

only

> > 33.

> > > He has been on the normal regiments until he went through an

> > > olyiplatin trial. now he is on avastin. He complains about a

lot

> > of

> > > shoulder pain. He won't clarify if its the muscle or bone. he

> does

> > > not want me to know. He has complained about hip and knee pain

> in

> > the

> > > past. He tells his Dr minimum details of what is wrong and

gets

> > mad

> > > when I call up there. I think he is afraid to know. About two

> > months

> > > ago he had what sounded like a heart-attack. I called the Dr

and

> > they

> > > sent him for testing. The results were " prolonged use of

highly

> > > dangerous chemicals " . they put him right back on the same

> > regiment.

> > > Could this not be a sign that he will have a life threatening

> > heart-

> > > attack if he keeps using the same meds? He had cat scans two

> weeks

> > > ago. they showed no new growth or new points of concern. He

has

> > spots

> > > on the pancreas and inflamed lypmh nodes in his stomach. We

were

> > > pleased that the results showed not changed. My problem is up

> > until a

> > > year and three months ago, he was getting pet scans. I know

they

> > show

> > > much more clearly about what is going on. My husband went from

> > good

> > > insurance to none for three months , now he is on medicare.

Now

> > the

> > > Dr makes us pay up front for each treatment. I am afraid they

> have

> > > lowered his level of care so that they don't have to be out

more

> > > money on treating him. I feel like they treat him like a

welfare

> > > patient, and only do what they have to do. I am afraid it is

in

> > the

> > > bone. I don't know that muscle pain or arthritis might be a

> > coexsting

> > > symptom with the meds he takes. I know that before a test he

> gets

> > > very nervous but gets better when we get the results. this

time

> he

> > > has not calmed back down as quickly. I think he knows more

than

> > hes

> > > telling. What do I do??? Are they just giving up on him???