Re: Roll call & Update from Joe -- decision time

J et al:

Thought I'd jump in the roll call with a separate entry because of
some changes in my status. I've been 3 months off chemo and to say the
least, have enjoyed the return of my strength and the goodbye to
nausea and diahrea. But the latest CT scan showed that my tumors also
enjoyed the break. This was not unexpected. The largest tumor, on my
liver, has enlarged significantly, the other smaller ones in my lungs
have grown, and there is a colllection of new smaller ones in the
lungs.

My onc asked me what I wanted to do. I have several options:
1. Go back on the regimen I last had - it apparently did slow tumor
growth some.
2. Go back on the regimen I last had and add some more stuff - he
called it "throwing the whole sink at it"
3. Go on a new regimen - a new drug (I forget the name) similar to
erbitux but just recently approved.
4. Go into a clinical trial
5. Do nothing

I asked and he told me that #1 and #2 might add at most a couple of
months to my lifespan. I hated the side effects I already
experienced.
The drug in #3 would likely produce similar side effects as erbitux.

Re #5, if I do nothing - and I asked him point blank - my life
expectancy could be anywhere from 6 months to 3 years. That last
figure is admittedly a long shot but he said he has seen it happen
especially with slow-growing tumors like I have. But he also said
that even slow-gowing tumors can suddenly become aggressive, but mine
are small enough so that a minimum of 6 months would be very likely.
Future CTscan will enable him to be more precise.

I've thought this over and I am inclined to go with #5 and just enjoy
quality of life rather than quantity.

But #4 intrigues me. I really have nothing to lose. If the side
effects become similar to those I disliked in the past, I could opt
out. And I might be making a contribution to cancer research, thus
giving the remainder of my life added meaning.

Well, there it is. It's kinda like the old saying "You pays yer monery
and ya takes yer pick." I told him I would have an answer at my next
appointment in 5 weeks, but perhaps earlier. I've consulted with my
family and they don't want to see me in the condition I was while on
chemo.

I asked him what he thought I would die from. Probably, he said, liver
failure. The patient just loses appetite and sleeps a lot until the
end comes. That sounds better than my lungs going out, gasping for
every single breath.

If anyone has any wisdom to share, I do listen. Thanks.

--

BetsyB

"46erjoe" <somebody@spamless.net> wrote in message
news:udp6n2p6dnca17vc28vg5fmdkk8traedid@4ax.com...
>J et al:
>
> Thought I'd jump in the roll call with a separate entry because of
> some changes in my status. I've been 3 months off chemo and to say the
> least, have enjoyed the return of my strength and the goodbye to
> nausea and diahrea. But the latest CT scan showed that my tumors also
> enjoyed the break. This was not unexpected. The largest tumor, on my
> liver, has enlarged significantly, the other smaller ones in my lungs
> have grown, and there is a colllection of new smaller ones in the
> lungs.
>
> My onc asked me what I wanted to do. I have several options:
> 1. Go back on the regimen I last had - it apparently did slow tumor
> growth some.
> 2. Go back on the regimen I last had and add some more stuff - he
> called it "throwing the whole sink at it"
> 3. Go on a new regimen - a new drug (I forget the name) similar to
> erbitux but just recently approved.
> 4. Go into a clinical trial
> 5. Do nothing
>
> I asked and he told me that #1 and #2 might add at most a couple of
> months to my lifespan. I hated the side effects I already
> experienced.
> The drug in #3 would likely produce similar side effects as erbitux.
>
> Re #5, if I do nothing - and I asked him point blank - my life
> expectancy could be anywhere from 6 months to 3 years. That last
> figure is admittedly a long shot but he said he has seen it happen
> especially with slow-growing tumors like I have. But he also said
> that even slow-gowing tumors can suddenly become aggressive, but mine
> are small enough so that a minimum of 6 months would be very likely.
> Future CTscan will enable him to be more precise.
>
> I've thought this over and I am inclined to go with #5 and just enjoy
> quality of life rather than quantity.
>
> But #4 intrigues me. I really have nothing to lose. If the side
> effects become similar to those I disliked in the past, I could opt
> out. And I might be making a contribution to cancer research, thus
> giving the remainder of my life added meaning.
>
> Well, there it is. It's kinda like the old saying "You pays yer monery
> and ya takes yer pick." I told him I would have an answer at my next
> appointment in 5 weeks, but perhaps earlier. I've consulted with my
> family and they don't want to see me in the condition I was while on
> chemo.
>
> I asked him what he thought I would die from. Probably, he said, liver
> failure. The patient just loses appetite and sleeps a lot until the
> end comes. That sounds better than my lungs going out, gasping for
> every single breath.
>
> If anyone has any wisdom to share, I do listen. Thanks.

Joe, I have no wisdom. I do have opinions on what I'd choose. Go with the
Liver choice. I agree, I sure don't want to have my husband and kids see me
gasping for breath that does not come. JMHO but the choice is not mine. I
would support what ever you chose and cheer you to the end. Take care my
friend.

Betsy

Joe:

Do they hold out any hope for a major remission from a clinical trial.

That sounds like the way to go.

Mel
"46erjoe" <somebody@spamless.net> wrote in message
news:udp6n2p6dnca17vc28vg5fmdkk8traedid@4ax.com...
>J et al:
>
> Thought I'd jump in the roll call with a separate entry because of
> some changes in my status. I've been 3 months off chemo and to say the
> least, have enjoyed the return of my strength and the goodbye to
> nausea and diahrea. But the latest CT scan showed that my tumors also
> enjoyed the break. This was not unexpected. The largest tumor, on my
> liver, has enlarged significantly, the other smaller ones in my lungs
> have grown, and there is a colllection of new smaller ones in the
> lungs.
>
> My onc asked me what I wanted to do. I have several options:
> 1. Go back on the regimen I last had - it apparently did slow tumor
> growth some.
> 2. Go back on the regimen I last had and add some more stuff - he
> called it "throwing the whole sink at it"
> 3. Go on a new regimen - a new drug (I forget the name) similar to
> erbitux but just recently approved.
> 4. Go into a clinical trial
> 5. Do nothing
>
> I asked and he told me that #1 and #2 might add at most a couple of
> months to my lifespan. I hated the side effects I already
> experienced.
> The drug in #3 would likely produce similar side effects as erbitux.
>
> Re #5, if I do nothing - and I asked him point blank - my life
> expectancy could be anywhere from 6 months to 3 years. That last
> figure is admittedly a long shot but he said he has seen it happen
> especially with slow-growing tumors like I have. But he also said
> that even slow-gowing tumors can suddenly become aggressive, but mine
> are small enough so that a minimum of 6 months would be very likely.
> Future CTscan will enable him to be more precise.
>
> I've thought this over and I am inclined to go with #5 and just enjoy
> quality of life rather than quantity.
>
> But #4 intrigues me. I really have nothing to lose. If the side
> effects become similar to those I disliked in the past, I could opt
> out. And I might be making a contribution to cancer research, thus
> giving the remainder of my life added meaning.
>
> Well, there it is. It's kinda like the old saying "You pays yer monery
> and ya takes yer pick." I told him I would have an answer at my next
> appointment in 5 weeks, but perhaps earlier. I've consulted with my
> family and they don't want to see me in the condition I was while on
> chemo.
>
> I asked him what he thought I would die from. Probably, he said, liver
> failure. The patient just loses appetite and sleeps a lot until the
> end comes. That sounds better than my lungs going out, gasping for
> every single breath.
>
> If anyone has any wisdom to share, I do listen. Thanks.
>

Joe~ i have no words of wisdom to offer but i have to say, that in your
shoes, i would also be inclined to pick either your numbers 4 or 5. I
am now watching my Mother who is in Hospice care and she did #4....and
then moved on to #5. The clinical trial seemed to slow down her tumor
growth for a time (she was in clinical trials here in Nashville at the
Sara Cannon Center) but when the trial ended, it was shown that she had
other tumors in other locations. (she had unknown primary to start
with....) In all, i would estimate that the trials bought us time with
her that we may not have had otherwise......and that was very important
to her and to us.

I do have to say that i like how straight forward and honest your
doctor seems to be with you. We had a bit of a language barriar with
my Mother (she's Spanish) and i don't think that until Hospice did she
truly realize or acknowledged what was going to happen. Of course, we
made sure that she told us that she understood, but while she may have
understood, i wonder if she was listening? I also admire your writing
skills on your post....it clearly lets us see your thought process in
deciding. My mother isn't much of a talker, and i often wonder if she
did your kind of reasoning. She never included my sister and i in her
decisions, choosing to just include my dad. While i understand now why
she did that....i would have loved to be able to have had the chance to
talk to her about what she picked to do.

Know my thoughts and prayers are with you and your family.....and
please post how you are doing.

isabel







46erjoe wrote:
> J et al:
>
> Thought I'd jump in the roll call with a separate entry because of
> some changes in my status. I've been 3 months off chemo and to say the
> least, have enjoyed the return of my strength and the goodbye to
> nausea and diahrea. But the latest CT scan showed that my tumors also
> enjoyed the break. This was not unexpected. The largest tumor, on my
> liver, has enlarged significantly, the other smaller ones in my lungs
> have grown, and there is a colllection of new smaller ones in the
> lungs.
>
> My onc asked me what I wanted to do. I have several options:
> 1. Go back on the regimen I last had - it apparently did slow tumor
> growth some.
> 2. Go back on the regimen I last had and add some more stuff - he
> called it "throwing the whole sink at it"
> 3. Go on a new regimen - a new drug (I forget the name) similar to
> erbitux but just recently approved.
> 4. Go into a clinical trial
> 5. Do nothing
>
> I asked and he told me that #1 and #2 might add at most a couple of
> months to my lifespan. I hated the side effects I already
> experienced.
> The drug in #3 would likely produce similar side effects as erbitux.
>
> Re #5, if I do nothing - and I asked him point blank - my life
> expectancy could be anywhere from 6 months to 3 years. That last
> figure is admittedly a long shot but he said he has seen it happen
> especially with slow-growing tumors like I have. But he also said
> that even slow-gowing tumors can suddenly become aggressive, but mine
> are small enough so that a minimum of 6 months would be very likely.
> Future CTscan will enable him to be more precise.
>
> I've thought this over and I am inclined to go with #5 and just enjoy
> quality of life rather than quantity.
>
> But #4 intrigues me. I really have nothing to lose. If the side
> effects become similar to those I disliked in the past, I could opt
> out. And I might be making a contribution to cancer research, thus
> giving the remainder of my life added meaning.
>
> Well, there it is. It's kinda like the old saying "You pays yer monery
> and ya takes yer pick." I told him I would have an answer at my next
> appointment in 5 weeks, but perhaps earlier. I've consulted with my
> family and they don't want to see me in the condition I was while on
> chemo.
>
> I asked him what he thought I would die from. Probably, he said, liver
> failure. The patient just loses appetite and sleeps a lot until the
> end comes. That sounds better than my lungs going out, gasping for
> every single breath.
>
> If anyone has any wisdom to share, I do listen. Thanks.

On Sun, 3 Dec 2006 19:57:36 -0500, "MZB" <moo@noway.prudigy.net>
wrotF:

>Joe:
>
>Do they hold out any hope for a major remission from a clinical trial.
>
>That sounds like the way to go.
>

My onc has never mentioned the word "remission." I told him at the
first visit that I knew the outcome of stage IV CRC and he never
argued the point, just said that he would do everything possible to
slow the process down. And it has been remarkably slow. I am blessed
beyond measure; first because although I don't have much in the way of
material goods, I have a big family that is unbelievably caring (I'm
the oldest of 10 kids); second because me and my wife have had a
marriage that most people can only dream about; thirdly because I have
felt God's good grace on my life for the past 35 years and I know He's
not going to stop now; and fourthly because I have outlived most with
my kind of cancer. It's been 3 years and 2 months since my first
diagnosis. Average life expectancy is 2 years 6 months. 5-year life
expectancy is around 6% - I may even make that at this pace!

My onc stated that there were several different clinical trials I
would be eligible for. I think I'll phone him and ask what they are
and if there is info on the web describing them.

Thanks for your input.

--Joe



>Mel
>"46erjoe" <somebody@spamless.net> wrote in message
>news:udp6n2p6dnca17vc28vg5fmdkk8traedid@4ax.com.. .
>>J et al:
>>
>> Thought I'd jump in the roll call with a separate entry because of
>> some changes in my status. I've been 3 months off chemo and to say the
>> least, have enjoyed the return of my strength and the goodbye to
>> nausea and diahrea. But the latest CT scan showed that my tumors also
>> enjoyed the break. This was not unexpected. The largest tumor, on my
>> liver, has enlarged significantly, the other smaller ones in my lungs
>> have grown, and there is a colllection of new smaller ones in the
>> lungs.
>>
>> My onc asked me what I wanted to do. I have several options:
>> 1. Go back on the regimen I last had - it apparently did slow tumor
>> growth some.
>> 2. Go back on the regimen I last had and add some more stuff - he
>> called it "throwing the whole sink at it"
>> 3. Go on a new regimen - a new drug (I forget the name) similar to
>> erbitux but just recently approved.
>> 4. Go into a clinical trial
>> 5. Do nothing
>>
>> I asked and he told me that #1 and #2 might add at most a couple of
>> months to my lifespan. I hated the side effects I already
>> experienced.
>> The drug in #3 would likely produce similar side effects as erbitux.
>>
>> Re #5, if I do nothing - and I asked him point blank - my life
>> expectancy could be anywhere from 6 months to 3 years. That last
>> figure is admittedly a long shot but he said he has seen it happen
>> especially with slow-growing tumors like I have. But he also said
>> that even slow-gowing tumors can suddenly become aggressive, but mine
>> are small enough so that a minimum of 6 months would be very likely.
>> Future CTscan will enable him to be more precise.
>>
>> I've thought this over and I am inclined to go with #5 and just enjoy
>> quality of life rather than quantity.
>>
>> But #4 intrigues me. I really have nothing to lose. If the side
>> effects become similar to those I disliked in the past, I could opt
>> out. And I might be making a contribution to cancer research, thus
>> giving the remainder of my life added meaning.
>>
>> Well, there it is. It's kinda like the old saying "You pays yer monery
>> and ya takes yer pick." I told him I would have an answer at my next
>> appointment in 5 weeks, but perhaps earlier. I've consulted with my
>> family and they don't want to see me in the condition I was while on
>> chemo.
>>
>> I asked him what he thought I would die from. Probably, he said, liver
>> failure. The patient just loses appetite and sleeps a lot until the
>> end comes. That sounds better than my lungs going out, gasping for
>> every single breath.
>>
>> If anyone has any wisdom to share, I do listen. Thanks.
>>
>

<isabelaorosz@hotmail.com> wrote in message
news:1165194720.870567.154660@80g2000cwy.googlegro ups.com...
> Joe~ i have no words of wisdom to offer but i have to say, that in your
> shoes, i would also be inclined to pick either your numbers 4 or 5. I
> am now watching my Mother who is in Hospice care and she did #4....and
> then moved on to #5. The clinical trial seemed to slow down her tumor
> growth for a time (she was in clinical trials here in Nashville at the
> Sara Cannon Center) but when the trial ended, it was shown that she had
> other tumors in other locations. (she had unknown primary to start
> with....) In all, i would estimate that the trials bought us time with
> her that we may not have had otherwise......and that was very important
> to her and to us.
>
> I do have to say that i like how straight forward and honest your
> doctor seems to be with you. We had a bit of a language barriar with
> my Mother (she's Spanish) and i don't think that until Hospice did she
> truly realize or acknowledged what was going to happen. Of course, we
> made sure that she told us that she understood, but while she may have
> understood, i wonder if she was listening? I also admire your writing
> skills on your post....it clearly lets us see your thought process in
> deciding. My mother isn't much of a talker, and i often wonder if she
> did your kind of reasoning. She never included my sister and i in her
> decisions, choosing to just include my dad. While i understand now why
> she did that....i would have loved to be able to have had the chance to
> talk to her about what she picked to do.
>
> Know my thoughts and prayers are with you and your family.....and
> please post how you are doing.
>
> isabel
>
>
>
>
>
>
>
> 46erjoe wrote:
>> J et al:
>>
>> Thought I'd jump in the roll call with a separate entry because of
>> some changes in my status. I've been 3 months off chemo and to say the
>> least, have enjoyed the return of my strength and the goodbye to
>> nausea and diahrea. But the latest CT scan showed that my tumors also
>> enjoyed the break. This was not unexpected. The largest tumor, on my
>> liver, has enlarged significantly, the other smaller ones in my lungs
>> have grown, and there is a colllection of new smaller ones in the
>> lungs.
>>
>> My onc asked me what I wanted to do. I have several options:
>> 1. Go back on the regimen I last had - it apparently did slow tumor
>> growth some.
>> 2. Go back on the regimen I last had and add some more stuff - he
>> called it "throwing the whole sink at it"
>> 3. Go on a new regimen - a new drug (I forget the name) similar to
>> erbitux but just recently approved.
>> 4. Go into a clinical trial
>> 5. Do nothing
>>
>> I asked and he told me that #1 and #2 might add at most a couple of
>> months to my lifespan. I hated the side effects I already
>> experienced.
>> The drug in #3 would likely produce similar side effects as erbitux.
>>
>> Re #5, if I do nothing - and I asked him point blank - my life
>> expectancy could be anywhere from 6 months to 3 years. That last
>> figure is admittedly a long shot but he said he has seen it happen
>> especially with slow-growing tumors like I have. But he also said
>> that even slow-gowing tumors can suddenly become aggressive, but mine
>> are small enough so that a minimum of 6 months would be very likely.
>> Future CTscan will enable him to be more precise.
>>
>> I've thought this over and I am inclined to go with #5 and just enjoy
>> quality of life rather than quantity.
>>
>> But #4 intrigues me. I really have nothing to lose. If the side
>> effects become similar to those I disliked in the past, I could opt
>> out. And I might be making a contribution to cancer research, thus
>> giving the remainder of my life added meaning.
>>
>> Well, there it is. It's kinda like the old saying "You pays yer monery
>> and ya takes yer pick." I told him I would have an answer at my next
>> appointment in 5 weeks, but perhaps earlier. I've consulted with my
>> family and they don't want to see me in the condition I was while on
>> chemo.
>>
>> I asked him what he thought I would die from. Probably, he said, liver
>> failure. The patient just loses appetite and sleeps a lot until the
>> end comes. That sounds better than my lungs going out, gasping for
>> every single breath.
>>
>> If anyone has any wisdom to share, I do listen. Thanks.

Joe,


My mom is in a similar situation with Spindle cell sarcoma/lieomyosarcoma.
She has taken your option #4 and is being screened this week to see if she
fits the eligibility standards for testing a new drug. If she isn't
accepted, she's strongly considering option #5.

My friend's Mom (in her early '70's) experienced a return of her breast
cancer, after 10 years. She was recommended for a drug trial (testing how
this med works for elderly patients), and it has shrunken all the tumors
significantly. Most are now undetectable. Just a few remain and stay small.
They weren't talking cure. Most of the others in the study have died. But
she is having unusual and fantastic results from this drug. So who knows? If
you think you could put up with the side affects, or at least seeing what
the side affects are, option #4 might be worth it. And your analysis of
option #4 sounds positive, like it feels good to you.

When my dad passed from multiple myeloma, he also did the sleeping a lot
until the end (kidney failure from toxins from the dying cancer cells. The
chemo was working but the dead cancer cells were killing him too.). Courtesy
of a dialysis treatment which gave us all time to fly into town, he had some
time to talk and laugh with each of us, telling us what he expected from us,
pray with the cantor or Rabbi who visited daily, etc. It was a 'good death'
as those things go. But he was truly ready. He had fought the cancer for 7
years or so, had tried all the treatments appropriate (protocols excluded
him from marrow transplant; forget why.) and he was ready to stop fighting,
even though dialysis (3Xweek) could have kept him alive through and past the
chemo. He was done. The cancer had undermined several bones and he was
bedridden; not something he wanted anymore. He was ready.

So - for what are you ready?

Adelle

Adelle wrote:

> > 46erjoe wrote:
>
> >> My onc asked me what I wanted to do. I have several options:
> >> 1. Go back on the regimen I last had - it apparently did slow tumor
> >> growth some.
> >> 2. Go back on the regimen I last had and add some more stuff - he
> >> called it "throwing the whole sink at it"
> >> 3. Go on a new regimen - a new drug (I forget the name) similar to
> >> erbitux but just recently approved.
> >> 4. Go into a clinical trial
> >> 5. Do nothing
> >> I've thought this over and I am inclined to go with #5 and just enjoy
> >> quality of life rather than quantity.
> >>
> >> But #4 intrigues me. I really have nothing to lose. If the side
> >> effects become similar to those I disliked in the past, I could opt
> >> out. And I might be making a contribution to cancer research, thus
> >> giving the remainder of my life added meaning.>>
> <snip>
> >> If anyone has any wisdom to share, I do listen. Thanks.
>
> Joe,
>
> My mom is in a similar situation with Spindle cell sarcoma/lieomyosarcoma.
> She has taken your option #4 and is being screened this week to see if she
> fits the eligibility standards for testing a new drug. If she isn't
> accepted, she's strongly considering option #5.
>
> My friend's Mom (in her early '70's) experienced a return of her breast
> cancer, after 10 years. She was recommended for a drug trial (testing how
> this med works for elderly patients), and it has shrunken all the tumors
> significantly. Most are now undetectable. Just a few remain and stay small.
> They weren't talking cure. Most of the others in the study have died. But
> she is having unusual and fantastic results from this drug. So who knows? If
> you think you could put up with the side affects, or at least seeing what
> the side affects are, option #4 might be worth it. And your analysis of
> option #4 sounds positive, like it feels good to you.
>
> When my dad passed from multiple myeloma, he also did the sleeping a lot
> until the end (kidney failure from toxins from the dying cancer cells. The
> chemo was working but the dead cancer cells were killing him too.). Courtesy
> of a dialysis treatment which gave us all time to fly into town, he had some
> time to talk and laugh with each of us, telling us what he expected from us,
> pray with the cantor or Rabbi who visited daily, etc. It was a 'good death'
> as those things go. But he was truly ready. He had fought the cancer for 7
> years or so, had tried all the treatments appropriate (protocols excluded
> him from marrow transplant; forget why.) and he was ready to stop fighting,
> even though dialysis (3Xweek) could have kept him alive through and past the
> chemo. He was done. The cancer had undermined several bones and he was
> bedridden; not something he wanted anymore. He was ready.
>
> So - for what are you ready?

Thanks for your input and update, Adelle.
J

46erjoe wrote:

> J et al:
>
> Thought I'd jump in the roll call with a separate entry because of
> some changes in my status. I've been 3 months off chemo and to say the
> least, have enjoyed the return of my strength and the goodbye to
> nausea and diahrea. But the latest CT scan showed that my tumors also
> enjoyed the break. This was not unexpected. The largest tumor, on my
> liver, has enlarged significantly, the other smaller ones in my lungs
> have grown, and there is a colllection of new smaller ones in the
> lungs.
>
> My onc asked me what I wanted to do. I have several options:
> 1. Go back on the regimen I last had - it apparently did slow tumor
> growth some.
> 2. Go back on the regimen I last had and add some more stuff - he
> called it "throwing the whole sink at it"
> 3. Go on a new regimen - a new drug (I forget the name) similar to
> erbitux but just recently approved.
> 4. Go into a clinical trial
> 5. Do nothing
>
> I asked and he told me that #1 and #2 might add at most a couple of
> months to my lifespan. I hated the side effects I already
> experienced.
> The drug in #3 would likely produce similar side effects as erbitux.
>
> Re #5, if I do nothing - and I asked him point blank - my life
> expectancy could be anywhere from 6 months to 3 years. That last
> figure is admittedly a long shot but he said he has seen it happen
> especially with slow-growing tumors like I have. But he also said
> that even slow-gowing tumors can suddenly become aggressive, but mine
> are small enough so that a minimum of 6 months would be very likely.
> Future CTscan will enable him to be more precise.
>
> I've thought this over and I am inclined to go with #5 and just enjoy
> quality of life rather than quantity.
>
> But #4 intrigues me. I really have nothing to lose. If the side
> effects become similar to those I disliked in the past, I could opt
> out. And I might be making a contribution to cancer research, thus
> giving the remainder of my life added meaning.
>
> Well, there it is. It's kinda like the old saying "You pays yer monery
> and ya takes yer pick." I told him I would have an answer at my next
> appointment in 5 weeks, but perhaps earlier. I've consulted with my
> family and they don't want to see me in the condition I was while on
> chemo.
>
> I asked him what he thought I would die from. Probably, he said, liver
> failure. The patient just loses appetite and sleeps a lot until the
> end comes. That sounds better than my lungs going out, gasping for
> every single breath.
>
> If anyone has any wisdom to share, I do listen. Thanks.
>

My personal choice would be to opt for the quality of my remaining
life, not the quantity. Especially if it meant living longer just to
suffer more and to have my loved ones suffer along with me by watching
my agony.

Whatever you choose, Joe, my wish for you is that things are as easy on
you and your loved ones as they can be. You are in my thoughts and prayers.

Janet

--
Janet Wilder
Bad spelling. Bad punctuation
Good Friends. Good Life

One of the clinical trials I'm looking at is a Phase II Trial of
Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
even macro eye degeneration.

You can read about it here:
http://www.regeneron.com/company/pre...asp?v_c_id=177

Which is dated 2003 and continues to hold promise

46erjoe wrote:

> One of the clinical trials I'm looking at is a Phase II Trial of
> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
> even macro eye degeneration.
>
> You can read about it here:
> http://www.regeneron.com/company/pre...asp?v_c_id=177
>
> Which is dated 2003 and continues to hold promise

oh. [J writes after pondering 2 Phase 1 trials and seeing that you wrote
Phase II]

I found two Phase I, no Phase II
http://clinicaltrials.gov/ct/show/NCT00082823?order=4
http://clinicaltrials.gov/ct/show/NCT00083213?order=5

One mentions hypertension and cardiovascular and hypersensitivity, and the
other doesn't for some reason.
They're both dose escalation, if I recall correctly.
They probably now know the hypersensitivity reaction to look out for or
plan for with pretreatment, I would think, but I'm no expert on that
either.

So I assume they've determined safe dose levels for Phase II but I didn't
find the trials..
Maybe it's the way I put the search criteria or they're not listed there
yet.
Good luck with your decision, Joe.
J

On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:

>46erjoe wrote:
>
>> One of the clinical trials I'm looking at is a Phase II Trial of
>> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
>> even macro eye degeneration.
>>
>> You can read about it here:
>> http://www.regeneron.com/company/pre...asp?v_c_id=177
>>
>> Which is dated 2003 and continues to hold promise
>
>oh. [J writes after pondering 2 Phase 1 trials and seeing that you wrote
>Phase II]
>
>I found two Phase I, no Phase II
>http://clinicaltrials.gov/ct/show/NCT00082823?order=4
>http://clinicaltrials.gov/ct/show/NCT00083213?order=5
>
>One mentions hypertension and cardiovascular and hypersensitivity, and the
>other doesn't for some reason.
>They're both dose escalation, if I recall correctly.
>They probably now know the hypersensitivity reaction to look out for or
>plan for with pretreatment, I would think, but I'm no expert on that
>either.
>
>So I assume they've determined safe dose levels for Phase II but I didn't
>find the trials..
>Maybe it's the way I put the search criteria or they're not listed there
>yet.
>Good luck with your decision, Joe.
>J

Here's the description:
Title: PHL-050: Phase II Trial of VEGF Trap in Patients with
Previously Treated Metastatic Colorectal Cancer
Clinical Trial Number: PMC004 /06-033
Principal Investigator: STEVEN COHEN, M.D.

at my hospital - Fox Chase, located here:
https://www.protonet.fccc.edu/cgi-bi...strointestinal

Hypertension is a side effect in some other anti-VEGF treatments like
Avastin, which I was treated with. But my BP never went above 114/70
and occasionally was as low as 97/60. I've always had good BP which I
attribute to my lengthy long-distance running career. I recall once
during a regular check up, my heart rate was 34 bpm - which paniced
the doc. He was ready to send me to the ER, then on a lark he asked me
"Are you a runner by any chance?" An affirmative answer calmed him
down. Now, having been away from running for several years, my heart
rate is in the 55-60 range. I wish the rest of me was as healthy as my
heart ;-)

46erjoe wrote:
> On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:
>
> >46erjoe wrote:
> >
> >> One of the clinical trials I'm looking at is a Phase II Trial of
> >> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
> >> even macro eye degeneration.
r anti-VEGF treatments like > Avastin,

You are correct, I had an injection in my right eye for Macular
Degernation and it seems to have halted the progression in its track.
Did not affect BP. (But then, only the one injuection.) My Franzi had
chemo that was FOLFOX7 and Avastin. Unfortunately he was one of the
few that had the serious side effect of preforation of the colon. (He
had colorectal cancer and his colon was probably weakened by blockage
and radiation, even though he had a colostomy.) But all this occurred
late in his journey. As I stated earlier, the only side effect from
Xeloda for him was the metallic taste which sort of puts one off food!
You have our prayers and blessings whateer route you choose.

turtletrot1@gmail.com wrote:

> 46erjoe wrote:
> > On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:
> >
> > >46erjoe wrote:
> > >
> > >> One of the clinical trials I'm looking at is a Phase II Trial of
> > >> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
> > >> even macro eye degeneration.
> r anti-VEGF treatments like > Avastin,
>
> You are correct, I had an injection in my right eye for Macular
> Degernation and it seems to have halted the progression in its track.
> Did not affect BP. (But then, only the one injuection.) My Franzi had
> chemo that was FOLFOX7 and Avastin. Unfortunately he was one of the
> few that had the serious side effect of preforation of the colon. (He
> had colorectal cancer and his colon was probably weakened by blockage
> and radiation, even though he had a colostomy.) But all this occurred
> late in his journey. As I stated earlier, the only side effect from
> Xeloda for him was the metallic taste which sort of puts one off food!

Xeloda's basically an oral form of 5FU, which Joe has had (I think) several
times (during several lines of treatment), so may be resistant to it now.
J

46erjoe wrote:

> On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:
>
> >46erjoe wrote:
> >
> >> One of the clinical trials I'm looking at is a Phase II Trial of
> >> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
> >> even macro eye degeneration.
> >>
> >> You can read about it here:
> >> http://www.regeneron.com/company/pre...asp?v_c_id=177
> >>
> >> Which is dated 2003 and continues to hold promise
> >
> >I found two Phase I, no Phase II
>
> Here's the description:
> Title: PHL-050: Phase II Trial of VEGF Trap in Patients with
> Previously Treated Metastatic Colorectal Cancer
> Clinical Trial Number: PMC004 /06-033
> Principal Investigator: STEVEN COHEN, M.D.
>
> at my hospital - Fox Chase, located here:
> https://www.protonet.fccc.edu/cgi-bi...strointestinal
>
> Hypertension is a side effect in some other anti-VEGF treatments like
> Avastin, which I was treated with. But my BP never went above 114/70
> and occasionally was as low as 97/60. I've always had good BP which I
> attribute to my lengthy long-distance running career. I recall once
> during a regular check up, my heart rate was 34 bpm - which paniced
> the doc. He was ready to send me to the ER, then on a lark he asked me
> "Are you a runner by any chance?" An affirmative answer calmed him
> down. Now, having been away from running for several years, my heart
> rate is in the 55-60 range. I wish the rest of me was as healthy as my
> heart ;-)

Thanks Joe,
Sounds like your onc is picking the right one for you.
J

On Wed, 06 Dec 2006 18:31:33 -0500, J <ercent@anon.inv> wrotF:

>46erjoe wrote:
>
>> On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:
>>
>> >46erjoe wrote:
>> >
>> >> One of the clinical trials I'm looking at is a Phase II Trial of
>> >> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
>> >> even macro eye degeneration.
>> >>
>> >> You can read about it here:
>> >> http://www.regeneron.com/company/pre...asp?v_c_id=177
>> >>
>> >> Which is dated 2003 and continues to hold promise
>> >
>> >I found two Phase I, no Phase II
>>
>> Here's the description:
>> Title: PHL-050: Phase II Trial of VEGF Trap in Patients with
>> Previously Treated Metastatic Colorectal Cancer
>> Clinical Trial Number: PMC004 /06-033
>> Principal Investigator: STEVEN COHEN, M.D.
>>
>> at my hospital - Fox Chase, located here:
>> https://www.protonet.fccc.edu/cgi-bi...strointestinal
>>
>> Hypertension is a side effect in some other anti-VEGF treatments like
>> Avastin, which I was treated with. But my BP never went above 114/70
>> and occasionally was as low as 97/60. I've always had good BP which I
>> attribute to my lengthy long-distance running career. I recall once
>> during a regular check up, my heart rate was 34 bpm - which paniced
>> the doc. He was ready to send me to the ER, then on a lark he asked me
>> "Are you a runner by any chance?" An affirmative answer calmed him
>> down. Now, having been away from running for several years, my heart
>> rate is in the 55-60 range. I wish the rest of me was as healthy as my
>> heart ;-)
>
>Thanks Joe,
>Sounds like your onc is picking the right one for you.
>J

UPDATE:

Crap! Got a phonecall from Fox Chase. THey said that I am ineligible
for the clinical trial because ... get this ... almost 3 years ago I
was in another clinical trial for PZ something or other. I was in the
test for only a month before the whole shmere was canceled. The
testers want only those who have had no other clinical trials. I would
think that by now, whatever stuff I had put in me back then would have
been eliminated from my body.

Back to square one : - (

> Crap! Got a phonecall from Fox Chase. THey said that I am ineligible
> for the clinical trial because ... get this ... almost 3 years ago I
> was in another clinical trial for PZ something or other. I was in the
> test for only a month before the whole shmere was canceled. The
> testers want only those who have had no other clinical trials. I would
> think that by now, whatever stuff I had put in me back then would have
> been eliminated from my body.
>
> Back to square one : - (

That really stinks. Did you explain to them the whole situation?
Alex
>
>

--

BetsyB

"46erjoe" <somebody@spamless.net> wrote in message
news:em6jn2ha77370hf88jfufblkuna8nn7j0l@4ax.com...
> On Wed, 06 Dec 2006 18:31:33 -0500, J <ercent@anon.inv> wrotF:
>
>>46erjoe wrote:
>>
>>> On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:
>>>
>>> >46erjoe wrote:
>>> >
>>> >> One of the clinical trials I'm looking at is a Phase II Trial of
>>> >> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
>>> >> even macro eye degeneration.
>>> >>
>>> >> You can read about it here:
>>> >> http://www.regeneron.com/company/pre...asp?v_c_id=177
>>> >>
>>> >> Which is dated 2003 and continues to hold promise
>>> >
>>> >I found two Phase I, no Phase II
>>>
>>> Here's the description:
>>> Title: PHL-050: Phase II Trial of VEGF Trap in Patients with
>>> Previously Treated Metastatic Colorectal Cancer
>>> Clinical Trial Number: PMC004 /06-033
>>> Principal Investigator: STEVEN COHEN, M.D.
>>>
>>> at my hospital - Fox Chase, located here:
>>> https://www.protonet.fccc.edu/cgi-bi...strointestinal
>>>
>>> Hypertension is a side effect in some other anti-VEGF treatments like
>>> Avastin, which I was treated with. But my BP never went above 114/70
>>> and occasionally was as low as 97/60. I've always had good BP which I
>>> attribute to my lengthy long-distance running career. I recall once
>>> during a regular check up, my heart rate was 34 bpm - which paniced
>>> the doc. He was ready to send me to the ER, then on a lark he asked me
>>> "Are you a runner by any chance?" An affirmative answer calmed him
>>> down. Now, having been away from running for several years, my heart
>>> rate is in the 55-60 range. I wish the rest of me was as healthy as my
>>> heart ;-)
>>
>>Thanks Joe,
>>Sounds like your onc is picking the right one for you.
>>J
>
> UPDATE:
>
> Crap! Got a phonecall from Fox Chase. THey said that I am ineligible
> for the clinical trial because ... get this ... almost 3 years ago I
> was in another clinical trial for PZ something or other. I was in the
> test for only a month before the whole shmere was canceled. The
> testers want only those who have had no other clinical trials. I would
> think that by now, whatever stuff I had put in me back then would have
> been eliminated from my body.
>
> Back to square one : - (
>
>
That seems logical to me too but I have to wait 5 years from my last chemo
to donate blood. Thay must know stuff us average Joe's don't?

46erjoe said...
> UPDATE:
>
> Crap! Got a phonecall from Fox Chase. THey said that I am ineligible
> for the clinical trial because ... get this ... almost 3 years ago I
> was in another clinical trial for PZ something or other. I was in the
> test for only a month before the whole shmere was canceled. The
> testers want only those who have had no other clinical trials. I would
> think that by now, whatever stuff I had put in me back then would have
> been eliminated from my body.
>
> Back to square one : - (
>
Well not really back to square one, Joe - you were undecided about which
course of action (or inaction) to take... Seems to me your choices have
just been reduced by one. Maybe someone's trying to tell you
something...?

--
Em

"46erjoe" <somebody@spamless.net> wrote in message
news:em6jn2ha77370hf88jfufblkuna8nn7j0l@4ax.com...
> On Wed, 06 Dec 2006 18:31:33 -0500, J <ercent@anon.inv> wrotF:
>
>>46erjoe wrote:
>>
>>> On Tue, 05 Dec 2006 12:56:27 -0500, J <ercent@anon.inv> wrotF:
>>>
>>> >46erjoe wrote:
>>> >
>>> >> One of the clinical trials I'm looking at is a Phase II Trial of
>>> >> Regeneron's VEGF Trap. It has shown promise in many kinds of cancer,
>>> >> even macro eye degeneration.
>>> >>
>>> >> You can read about it here:
>>> >> http://www.regeneron.com/company/pre...asp?v_c_id=177
>>> >>
>>> >> Which is dated 2003 and continues to hold promise
>>> >
>>> >I found two Phase I, no Phase II
>>>
>>> Here's the description:
>>> Title: PHL-050: Phase II Trial of VEGF Trap in Patients with
>>> Previously Treated Metastatic Colorectal Cancer
>>> Clinical Trial Number: PMC004 /06-033
>>> Principal Investigator: STEVEN COHEN, M.D.
>>>
>>> at my hospital - Fox Chase, located here:
>>> https://www.protonet.fccc.edu/cgi-bi...strointestinal
>>>
>>> Hypertension is a side effect in some other anti-VEGF treatments like
>>> Avastin, which I was treated with. But my BP never went above 114/70
>>> and occasionally was as low as 97/60. I've always had good BP which I
>>> attribute to my lengthy long-distance running career. I recall once
>>> during a regular check up, my heart rate was 34 bpm - which paniced
>>> the doc. He was ready to send me to the ER, then on a lark he asked me
>>> "Are you a runner by any chance?" An affirmative answer calmed him
>>> down. Now, having been away from running for several years, my heart
>>> rate is in the 55-60 range. I wish the rest of me was as healthy as my
>>> heart ;-)
>>
>>Thanks Joe,
>>Sounds like your onc is picking the right one for you.
>>J
>
> UPDATE:
>
> Crap! Got a phonecall from Fox Chase. THey said that I am ineligible
> for the clinical trial because ... get this ... almost 3 years ago I
> was in another clinical trial for PZ something or other. I was in the
> test for only a month before the whole shmere was canceled. The
> testers want only those who have had no other clinical trials. I would
> think that by now, whatever stuff I had put in me back then would have
> been eliminated from my body.
>
> Back to square one : - (
>
>
Am very sorry to hear this, Joe. Maybe the stuff they used before has a very
long half life. Any way to open some discussion on it with the people doing
the test?

My mom was accepted into the test. Doesn't seem to be a double blind study.
They are doing a huge battery of tests on her liver, kidneys, bone scan, and
more I forget before she starts the medication.

Wishing you good things and better luck!

Adelle