Clinical trial drug opinions?

As you know I'm having to try and sift through 100s of clincal trials on
my own because my oncologists are too busy to bother with trials (their
words, not mine) Most I've called won't talk to me because I'm not a
doctor, the ones that will say that a CEA of 235 that is doubling every
2-3 weeks and retroperitoneal lymph nodes that light up like an xmas
tree on a PET scan yet appear normal size on a CT scan so far is not
enough to qualify. I need a solid measurable tumor which I pray that I
never will have again. Howver one they say I may be able to get into is
with a drug called sorafenib or bay 43-9006 given along with erbitux.
it's a phase two trial.

Do any of you know anything about this drug sorafenib? If so do you
think I'd fare any better with this than on the standard protocal of
CPT-11 and erbitux that my onc wants me on? I need to make a decision
quickly. I've been told from day one that any standard line chemo is
purely palliative and none would be curative so I know up front the best
case scenario with standard care is perhaps adding a few months. I was
hoping to get in a gene therapy or vacine trial but seems I can't
qualify for the ones I've seen so far.

I honestly don't know what to think anymore. These Oncs have been saying
since day one (13 months) that because my colon cancer tumor had signet
ring cell in it which had spread to peritoneum that they were absolutely
positive without a doubt that the steadily rising CEA and apparent
progression while on 1st line chemo was due to seeding in my peritoneal
cavity. they said there was no doubt that if they opened me up they
would find my belly full of them yet they were not big enough to show on
scans.

Well last month I went to Baltimore for cytoreducive surgery and heated
iterperitoneal chemo (HIPEC) based on their diagnosis. When the doc went
in to look around he found nothing but 8-10 tiny nodules that tested
negative for caner, so the procedure was called off.

Regards,
Jonboy

Have you tried calling or using...
a.. The National Cancer Institute's database (PDQ®) of cancer clinical
trials
a.. go to the basic search form
b.. go to the advanced search form
c.. call 1-800-4-CANCER (1-800-422-6237)
d.. go to LiveHelp
e.. learn more about the PDQ database
b.. Cancer clinical trials being conducted at the National Institute of
Health's Clinical Center in Bethesda, Maryland
a.. see a list
b.. call 1-888-624-1937
Did Baltimore give you any tips?

Best of luck, Alex

Yes Alex,
I've gone to NCI, emerging med and all the ones you mentioned. They will
send you tons of clinical trials but they offer no assistance in
deciphering them to figure out what the heck they are or if they may or
may not benefit you.

When you call or email the contact folks listed on the clinical trials
you get one of 5 responses. they either will
1. refuse to talk to you or talk to you like you are a child and tell
you to get your doctor to call them.
2. blow you off completely and tell you they have nothing for you
without even asking details of your cancer.
3. ask you to fax them everything you have which amounts to about 30
sheets and mail them discs from your latest scans, then you never hear
from them and they don't return the discs even when you provide prepaid
return envelopes.
4. or they will send you consent forms to sign you up for the trial
without explaining what the stuff is or whether or not it will do any
good for you.
5. they will tell you to come back when you have a measurable tumor.
Without a professional to assist in weeding through the mess it is
pretty useless for a patient to attempt clinical trials on their own.
The trial folks think you are a kook or a hypocondriac or something and
usually don't take you seriously. The chemo I'm asking about is one of
them that they already fed exd me the consent forms day after I spoke to
them. My onc is pressing me to get back on chemo asap at the same time.
He refuses to stock the chemo cause he says it's too expensive. he
writes the prescription and I have to go get it and bring it to him. My
co pay on this one (CTP-11) is $1,200.00 every 3 weeks. lord knows what
it will be when he adds the erbitux and xeloda.


Re: Clinical trial drug opinions?

Group: alt.support.cancer Date: Sat, Feb 10, 2007, 11:55am From:
alex@noemail.com (alex)
Have you tried calling or using...
****a.. The National Cancer Institute's database (PDQ®) of
cancer clinical trials
********a.. go to the basic search form
****b.. go to the advanced search form
********c.. call 1-800-4-CANCER (1-800-422-6237) * d..
go to LiveHelp
********e.. learn more about the PDQ database
****b.. Cancer clinical trials being conducted at the National
Institute of Health's Clinical Center in Bethesda, Maryland
********a.. see a list
****b.. call 1-888-624-1937
Did Baltimore give you any tips?
Best of luck, Alex

J W wrote:

> As you know I'm having to try and sift through 100s of clincal trials on
> my own because my oncologists are too busy to bother with trials (their
> words, not mine) Most I've called won't talk to me because I'm not a
> doctor, the ones that will say that a CEA of 235 that is doubling every
> 2-3 weeks and retroperitoneal lymph nodes that light up like an xmas
> tree on a PET scan yet appear normal size on a CT scan so far is not
> enough to qualify. I need a solid measurable tumor which I pray that I
> never will have again. Howver one they say I may be able to get into is
> with a drug called sorafenib or bay 43-9006 given along with erbitux.
> it's a phase two trial.
>
> Do any of you know anything about this drug sorafenib? If so do you
> think I'd fare any better with this than on the standard protocal of
> CPT-11 and erbitux

CPT11 is An anticancer drug that belongs to a family of drugs called
topoisomerase inhibitors. It is a camptothecin analogue. Camptosar is the
trade name for CPT-11.. CPT-11 and Camptothecin-11 are other names for
Irinotecan Irinotecan (Campto®) is a chemotherapy drug that is given as a
treatment for some types of cancer. It is most commonly used to treat bowel
cancer

sorafenib or bay 43-9006 A drug that is used to treat advanced kidney
cancer and is being studied in the treatment of other types of cancer. It
belongs to the families of drugs called Raf kinase inhibitors, VEGF receptor
kinase inhibitors, and angiogenesis inhibitors. Also called BAY 43-9006,
sorafenib tosylate, and Nexavar.

Xeloda (zeh-LOH-duh)
A drug used to treat stage III colon cancer in patients who had surgery to
remove the cancer. It is also being studied in the treatment of other types
of cancer. Xeloda belongs to the family of drugs called antimetabolites.
Also called capecitabine.

Erbitux (cetuximab)
http://clinicaltrials.gov/ct/show/NCT00336856 ?
Irinotecan and Cetuximab for Colorectal Cancer as Second Line Therapy
Primary Outcomes: To assess the response rate of patients with previously
treated CRC
Secondary Outcomes: To measure time to progression; To measure the duration
of response for responding patients.; To characterize the quantitative and
qualitative toxicities in this patient population.; To study the effect of
cetuximab on serial serum EGF levels, over expression of EGFR pathways and
downstream markers on tumor tissue (STAT, mutant EGFR and MAPK); To
characterize the pharmacokinetics of cetuximab given on a every 2 week
schedule
Expected Total Enrollment: 31


http://clinicaltrials.gov/ct/show/NCT00134069 ?
Sorafenib, Cetuximab, and Irinotecan in Treating Patients With Advanced or
Metastatic Colorectal Cancer
Would those be them?

I don't know where you live (so check them) and I don't know why you mention
Xeloda and why you have to co-pay. I thought drugs were free in clinical
trials, but I could be wrong.
J

The drugs in clinical trials are usually free. the CPT-11 with erbitux
and xeloda I mentioned in my post are the standard care 2nd line chemo
my oncologist is pressuring me to take, they are not a clinical trial.
He wants me to start out on CPT-11 and add xeloda and or erbitux later
as needed when I progress.

My nsurance only pays 80% of the cost of the drugs which in the case of
CTP-11 comes to nearly $1,200.00 administered every 3 weeks. I don't
know what the xeloda will be if it is added later. I know that erbitux
is very expensive and is not shown to add much survival time considering
the awful rash it produces. I'm sure the copay for that will be
considerably more than the CPT-11 and it will be given every week.
the sorafenib or bay 43-9006 is the clinical trial drug that I'm asking
if anyone knows anything about. I'm not sure if I'd fare any better on
it than I would on the stadard 2nd line chemo mentioned above The trial
I found just gives erbitux with it. I'll have to look at the one you
found.



Group: alt.support.cancer Date: Sat, Feb 10, 2007, 2:34pm From:
nexsw@nvalid (J)


I don't know where you live (so check them) and I don't know why you
mention Xeloda and why you have to co-pay. I thought drugs were free in
clinical trials, but I could be wrong.
J

J <nexsw@nvalid,anon> wrote in news:45CE1E50.530EA9D2@execulink.com:

>
> I don't know where you live (so check them) and I don't know why you
> mention Xeloda and why you have to co-pay. I thought drugs were free
> in clinical trials, but I could be wrong.
> J
>
He's not IN a clinical trial; he's trying to find an appropriate one. This
is for chemo outside of trial, if I'm reading correctly. He needs to see
if there's a clinical trial before beginning the chemo.

Fig

J W wrote:
> As you know I'm having to try and sift through 100s of clincal trials on
> my own because my oncologists are too busy to bother with trials (their
> words, not mine)

You must really like them (or at least respect their abilities) to stay
with them under that condition.

--
"Nowadays, security guys break the Mac every single day. Every single day,
they come out with a total exploit, your machine can be taken over totally.
I dare anybody to do that once a month on the Windows machine."
-- Bill Gates, in an interview with Newsweek's Steven Levy

jonboy42@webtv.net (J W) wrote in news:21962-45CE3890-662@storefull-
3255.bay.webtv.net:

> The drugs in clinical trials are usually free. the CPT-11 with erbitux
> and xeloda I mentioned in my post are the standard care 2nd line chemo
> my oncologist is pressuring me to take, they are not a clinical trial.
> He wants me to start out on CPT-11 and add xeloda and or erbitux later
> as needed when I progress.
>
> My nsurance only pays 80% of the cost of the drugs which in the case of
> CTP-11 comes to nearly $1,200.00 administered every 3 weeks. I don't
> know what the xeloda will be if it is added later. I know that erbitux
> is very expensive and is not shown to add much survival time
considering
> the awful rash it produces. I'm sure the copay for that will be
> considerably more than the CPT-11 and it will be given every week.
> the sorafenib or bay 43-9006 is the clinical trial drug that I'm asking
> if anyone knows anything about. I'm not sure if I'd fare any better on
> it than I would on the stadard 2nd line chemo mentioned above The trial
> I found just gives erbitux with it. I'll have to look at the one you
> found.
>
>
>
> Group: alt.support.cancer Date: Sat, Feb 10, 2007, 2:34pm From:
> nexsw@nvalid (J)
>
>
> I don't know where you live (so check them) and I don't know why you
> mention Xeloda and why you have to co-pay. I thought drugs were free in
> clinical trials, but I could be wrong.
> J
>
If you haven't already, you might check to see if you have a max out of
pocket on that insurance.

You might also file for SS disability if you haven't already & if unable
to work. Sometimes they can backdate to beginning of disability. 5
month waiting period from date of disability.

http://www.ssa.gov/pubs/10029.html

Fig

The trial you posted is very interesting in that it has both the
erbitux and the CPT-11 that I would be taking here in FL. from my onc,
so I'd be getting what they want to give me here plus the addition of
the sofranib.
Unfortunately it looks like they want mesurable tumor that can be
biopsied which I don't think I have. I'll have to call them and see if
hey will accept me. I have 235 CEA that is doubling every 2-3 weeks and
retroperitonial lymph nodes that light up clearly in PET scan but thus
far appear normal size in CT scans. My onc says he believes that's where
the cancer is. NCI says lymph nodes could light up from anything such as
infection or inflamation so They can't be used unless they show up
abnormal on CT scans. They say only tumors that show CT or MRI scan are
acceptable.

I have one lymph node in the retrocrural area of my lung that does and
always has shown on CT scans. One doc says it's in the lung, the other
doc says it's outside the lung in the diaphram area. It has been slowly
but steadily growing over past 6 months from 1.06cm. To 1.26cm when last
checked in Dec. of 06. It did not light up in 1st PET scan done in
spring of 06 but did light up in PET scan done 12/06. Ithink this
qualifies as a measurable tumor but I don't think it's in an area that
could easily be biopsied though I'm not sure. Both my oncs here say it's
nothing

The trial you found is in Baltimore which would be much better for me as
there is a hope house within blocks of johns hopkins. I will call them
monday, thank you for locating that one and bringing it to my attention.
The one I had found was in DC and was only sofranib and erbitux.


Group: alt.support.cancer Date: Sat, Feb 10, 2007, 2:34pm From:
nexsw@nvalid (J)

http://clinicaltrials.gov/ct/show/NCT00134069 ? Sorafenib, Cetuximab,
and Irinotecan in Treating Patients With Advanced or Metastatic
Colorectal Cancer Would those be them?

Correct, I'm trying to find an appropriate clinical trial before
starting 2nd line chemo as each chemo you take can knock you out of
certain trials. I'm also working against a rapidly rising CEA.


Group: alt.support.cancer Date: Sat, Feb 10, 2007, 9:32pm (EST+5) From:
me@privacy.net (Figgertoes)
J <nexsw@nvalid,anon> wrote

He's not IN a clinical trial; he's trying to find an appropriate one.
This is for chemo outside of trial, if I'm reading correctly. He needs
to see if there's a clinical trial before beginning the chemo.
Fig

Actually I don't like either of them but I am on a medicare HMO which is
limited coverage of 2 countys and they have very few oncs that are
taking new patients, most are filled to capacity. Lots of cancer in FL.
The cancer centers here in our area advertise on billboards and buses,
it's big business. They are all too busy to bother with anything that
doesn't produce income and they will fire you for any reason. I had one
fire me for asking too many questions. I was shocked that I was able to
get my HMO to pay for me to go to Baltimore for the cytoreductive
surgery with HIPEC. They are pretty cooperative on most things they just
don't have enough doctors and the ones they have are very busy. They
have a huge turnover in doctors I assume because they require them to
see so many patients per day and pay them poorly compared to what they
can earnin private sector or wth cancer centers. My HMO requires docs to
see at least 30 patients per day. that is ludicrus, it's no wonder so
many mistakes are made and malpractice ins. is so high.

Group: alt.support.cancer Date: Sat, Feb 10, 2007, 3:31pm (EST-1) From:
clifto@gmail.com (clifto)
J W wrote:
As you know I'm having to try and sift through 100s of clincal trials on
my own because my oncologists are too busy to bother with trials (their
words, not mine)

You must really like them (or at least respect their abilities) to stay
with them under that condition.

Yes I have a max out of pocket but it is a ways off for me in the new
calendar year. I am on disability. I already was on it before cancer due
to being legally blind.
The problem I'm running into with places like MD anderson, cancer
centers of america, etc. Is they won't accept medicare HMOs. they will
accept medicare alone but I'd have to cancel my HMO and go on stand
alone medicare which has a 20% chemo copay with no max out of pocket
limit. I could maybe get a medicare suppliment policy to pick up the 20%
but they are several hundred dollars a month and very few would accept
me de to pre existiing conditions. plus I'd also have to buy a
prescriptio drug plan as well.



Group: alt.support.cancer Date: Sat, Feb 10, 2007, 9:50pm (EST+5) From:
me@privacy.net (Figgertoes)

If you haven't already, you might check to see if you have a max out of
pocket on that insurance.
You might also file for SS disability if you haven't already & if unable
to work. Sometimes they can backdate to beginning of disability. 5 month
waiting period from date of disability.
http://www.ssa.gov/pubs/10029.html
Fig

jonboy42@webtv.net (J W) wrote in news:21962-45CE4371-673@storefull-
3255.bay.webtv.net:

> Yes I have a max out of pocket but it is a ways off for me in the new
> calendar year. I am on disability. I already was on it before cancer
due
> to being legally blind.
> The problem I'm running into with places like MD anderson, cancer
> centers of america, etc. Is they won't accept medicare HMOs. they will
> accept medicare alone but I'd have to cancel my HMO and go on stand
> alone medicare which has a 20% chemo copay with no max out of pocket
> limit. I could maybe get a medicare suppliment policy to pick up the
20%
> but they are several hundred dollars a month and very few would accept
> me de to pre existiing conditions. plus I'd also have to buy a
> prescriptio drug plan as well.
>
>
>
> Group: alt.support.cancer Date: Sat, Feb 10, 2007, 9:50pm (EST+5) From:
> me@privacy.net (Figgertoes)
>
> If you haven't already, you might check to see if you have a max out of
> pocket on that insurance.
> You might also file for SS disability if you haven't already & if
unable
> to work. Sometimes they can backdate to beginning of disability. 5
month
> waiting period from date of disability.
> http://www.ssa.gov/pubs/10029.html
> Fig

I know availability varies with where you live, but we had Kaiser both
before & after Socks went on Medicare. We chose their 'Silver' or mid-
level supplement after some careful evaluation. The premium was way
under $100/mo (plus what medicare withheld) & his chemo was a simple
specialist copay of $25-30 which included all services he received that
day. Drug plan was part & as long as we stuck to generic, unlimited &
very inexpensive. I know you can't change coverage on the fly, but yours
seems far more expensive than ours.

And I understand the limitations of chosing an HMO like Kaiser to
administer all services. We were lucky there & very satisfied that Socks
was well cared for by competent docs using state of the art technology.

There is a 'craps shoot' factor in all these decisions.

Best,
Fig

J <nexsw@nvalid,anon> wrote in news:45CE1E50.530EA9D2@execulink.com:

> J W wrote:
>
>> As you know I'm having to try and sift through 100s of clincal trials
>> on my own because my oncologists are too busy to bother with trials
>> (their words, not mine) Most I've called won't talk to me because I'm
>> not a doctor, the ones that will say that a CEA of 235 that is
>> doubling every 2-3 weeks and retroperitoneal lymph nodes that light
>> up like an xmas tree on a PET scan yet appear normal size on a CT
>> scan so far is not enough to qualify. I need a solid measurable tumor
>> which I pray that I never will have again. Howver one they say I may
>> be able to get into is with a drug called sorafenib or bay 43-9006
>> given along with erbitux. it's a phase two trial.
>>
>> Do any of you know anything about this drug sorafenib? If so do you
>> think I'd fare any better with this than on the standard protocal of
>> CPT-11 and erbitux
>
> CPT11 is An anticancer drug that belongs to a family of drugs called
> topoisomerase inhibitors. It is a camptothecin analogue. Camptosar is
> the trade name for CPT-11.. CPT-11 and Camptothecin-11 are other names
> for Irinotecan Irinotecan (Campto®) is a chemotherapy drug that is
> given as a treatment for some types of cancer. It is most commonly
> used to treat bowel cancer
>
> sorafenib or bay 43-9006 A drug that is used to treat advanced kidney
> cancer and is being studied in the treatment of other types of cancer.
> It belongs to the families of drugs called Raf kinase inhibitors, VEGF
> receptor kinase inhibitors, and angiogenesis inhibitors. Also called
> BAY 43-9006, sorafenib tosylate, and Nexavar.
>
> Xeloda (zeh-LOH-duh)
> A drug used to treat stage III colon cancer in patients who had
> surgery to remove the cancer. It is also being studied in the
> treatment of other types of cancer. Xeloda belongs to the family of
> drugs called antimetabolites. Also called capecitabine.
>
> Erbitux (cetuximab)
> http://clinicaltrials.gov/ct/show/NCT00336856 ?
> Irinotecan and Cetuximab for Colorectal Cancer as Second Line Therapy
> Primary Outcomes: To assess the response rate of patients with
> previously treated CRC
> Secondary Outcomes: To measure time to progression; To measure the
> duration of response for responding patients.; To characterize the
> quantitative and qualitative toxicities in this patient population.;
> To study the effect of cetuximab on serial serum EGF levels, over
> expression of EGFR pathways and downstream markers on tumor tissue
> (STAT, mutant EGFR and MAPK); To characterize the pharmacokinetics of
> cetuximab given on a every 2 week schedule
> Expected Total Enrollment: 31
>
>
> http://clinicaltrials.gov/ct/show/NCT00134069 ?
> Sorafenib, Cetuximab, and Irinotecan in Treating Patients With
> Advanced or Metastatic Colorectal Cancer
> Would those be them?
>
> I don't know where you live (so check them) and I don't know why you
> mention Xeloda and why you have to co-pay. I thought drugs were free
> in clinical trials, but I could be wrong.
> J
>
J,

Wow! That's amazing. Just in case you missed it, JW lives in FL but
travel to Baltimore is simpatico.
Fig

J W wrote:

> The trial you posted is very interesting in that it has both the
> erbitux and the CPT-11 that I would be taking here in FL. from my onc,
> so I'd be getting what they want to give me here plus the addition of
> the sofranib.
> Unfortunately it looks like they want mesurable tumor that can be
> biopsied which I don't think I have. I'll have to call them and see if
> hey will accept me. I have 235 CEA that is doubling every 2-3 weeks and
> retroperitonial lymph nodes that light up clearly in PET scan but thus
> far appear normal size in CT scans. My onc says he believes that's where
> the cancer is. NCI says lymph nodes could light up from anything such as
> infection or inflamation so They can't be used unless they show up
> abnormal on CT scans. They say only tumors that show CT or MRI scan are
> acceptable.
>
> I have one lymph node in the retrocrural area of my lung that does and
> always has shown on CT scans. One doc says it's in the lung, the other
> doc says it's outside the lung in the diaphram area. It has been slowly
> but steadily growing over past 6 months from 1.06cm. To 1.26cm when last
> checked in Dec. of 06. It did not light up in 1st PET scan done in
> spring of 06 but did light up in PET scan done 12/06. Ithink this
> qualifies as a measurable tumor but I don't think it's in an area that
> could easily be biopsied though I'm not sure. Both my oncs here say it's
> nothing
>
> The trial you found is in Baltimore which would be much better for me as
> there is a hope house within blocks of johns hopkins. I will call them
> monday, thank you for locating that one and bringing it to my attention.

Well, good luck Jon.
I thought both were in Maryland, but I was wrong.
And if they accept lymph nodes as measurable maybe there is a clinical trial
in Florida, but I'm not searching all 500+ unless I know for sure. So let us
know, please.
J

The similar one I found was in washington DC which is not far from
Baltimore but they do not have a hope house there. Hope house provides
free living quarters for cancer patients and caregivers while on
treatment. They are a Godsend and johns hopkins is practicaly walking
distance. In DC I'd be in a hotel and have to fly back and forth or stay
in baltimore at hope house and commute. To be the second highest cancer
state in the country florida is pretty backwards in treatments and there
are very few clinical trials. The state is heavily populated with
retirees making it a mecca for doctors and quacks alike. The good ones
are overworked and spread thin with too many patients.. There are tons
of medicare HMO companis here and most people use them because of cost..
In my county there are only two. The other one isn't as good. I've been
thinking of going on medicare alone and buying a medicare supliment
policy but I'm not sure if I could get one now since getting cancer. If
they work the way I think they do a medicare supliment would allow me
to go anywhere and still be covered whereas my HMO is only good in 2
counties unless I get preaproval for one time treatment elsewhere. I
have to look into it because I really would like to spend my endtime (as
long as I'm in good enough shape) traveling and exploring this country.
Problem is I can't see well enough to drive and my wife is in too bad
health to drive so I'd have to use greyhound or find a traveling
partner.

Group: alt.support.cancer Date: Sun, Feb 11, 2007, 4:23am From:
nexsw@nvalid (J)

Well, good luck Jon.
I thought both were in Maryland, but I was wrong. And if they accept
lymph nodes as measurable maybe there is a clinical trial in Florida,
but I'm not searching all 500+ unless I know for sure. So let us know,
please.
J

"J W" <jonboy42@webtv.net> wrote in message
news:16405-45CF2AB6-697@storefull-3257.bay.webtv.net...
> The similar one I found was in washington DC which is not far from
> Baltimore
>
> Group: alt.support.cancer Date: Sun, Feb 11, 2007, 4:23am From:
> nexsw@nvalid (J)
>
> I thought both were in Maryland, but I was wrong.
>

If he was talking about NIH, it is actually in MD -- just outside DC by a
couple of miles.

I don't know about hope house, but there may be other housing available for
cancer patients.
bj

--
Save the earth. It's the only planet with chocolate and Starbucks!!
BetsyB

"bj" <bjones44@bellatlantic.net> wrote in message
news:hTGzh.391$yg7.94@trnddc08...
> "J W" <jonboy42@webtv.net> wrote in message
> news:16405-45CF2AB6-697@storefull-3257.bay.webtv.net...
>> The similar one I found was in washington DC which is not far from
>> Baltimore
>>
>> Group: alt.support.cancer Date: Sun, Feb 11, 2007, 4:23am From:
>> nexsw@nvalid (J)
>>
>> I thought both were in Maryland, but I was wrong.
>>
>
> If he was talking about NIH, it is actually in MD -- just outside DC by a
> couple of miles.
>
> I don't know about hope house, but there may be other housing available
> for cancer patients.
> bj
>
>


http://www.rmhc.greaterdc.org/

Ronald McDonald Houses in Greater DC area?

I am sorry.... I guess you have to be your own advocate. If you could
afford it I would go to regular Medicare and pick up a Medigap plan.
If you don't have the funds apply for Medicaid. Tough situation and I
don't know what to say.

Alex

PS When I was going through active and expensive treatment, I had two
insurances, an HMO and United Health, is took years and hours of time to
straighten out all my bills. In theory the HMO should have covered
100%....but with the second insurance it was very confusing for the billers.
My point when you are sick it isn't easy.

"betsyb" <betsy958@TRASHoptonline.net> wrote in news:eqndtk02to1
@news4.newsguy.com:

>
>
I believe Ronald McDonald only takes faimilies where there's a sick child,
but I'm a firm believer in using one as a resource for finding others as
the staff usually knows what else is around.

Fig

--
Save the earth. It's the only planet with chocolate and Starbucks!!
BetsyB

"Figgertoes" <me@privacy.net> wrote in message
news:Xns98D47250C70D0figgertoes@216.168.3.44...
> "betsyb" <betsy958@TRASHoptonline.net> wrote in news:eqndtk02to1
> @news4.newsguy.com:
>
>>
>>
> I believe Ronald McDonald only takes faimilies where there's a sick child,
> but I'm a firm believer in using one as a resource for finding others as
> the staff usually knows what else is around.
>
> Fig

In New Brunswick,NJ friends stayed there while the sister had a stomach
reduction? There were complications. No children.

On Feb 10, 4:53 pm, jonbo...@webtv.net (J W) wrote:
> The trial you posted is very interesting in that it has both the
> erbitux and the CPT-11 that I would be taking here in FL. from my onc,
> so I'd be getting what they want to give me here plus the addition of
> the sofranib.
> Unfortunately it looks like they want mesurable tumor that can be
> biopsied which I don't think I have. I'll have to call them and see if
> hey will accept me. I have 235 CEA that is doubling every 2-3 weeks and
> retroperitonial lymph nodes that light up clearly in PET scan but thus
> far appear normal size in CT scans. My onc says he believes that's where
> the cancer is. NCI says lymph nodes could light up from anything such as
> infection or inflamation so They can't be used unless they show up
> abnormal on CT scans. They say only tumors that show CT or MRI scan are
> acceptable.
>
> I have one lymph node in the retrocrural area of my lung that does and
> always has shown on CT scans. One doc says it's in the lung, the other
> doc says it's outside the lung in the diaphram area. It has been slowly
> but steadily growing over past 6 months from 1.06cm. To 1.26cm when last
> checked in Dec. of 06. It did not light up in 1st PET scan done in
> spring of 06 but did light up in PET scan done 12/06. Ithink this
> qualifies as a measurable tumor but I don't think it's in an area that
> could easily be biopsied though I'm not sure. Both my oncs here say it's
> nothing
>
> The trial you found is in Baltimore which would be much better for me as
> there is a hope house within blocks of johns hopkins. I will call them
> monday, thank you for locating that one and bringing it to my attention.
> The one I had found was in DC and was only sofranib and erbitux.
>
> Group: alt.support.cancer Date: Sat, Feb 10, 2007, 2:34pm From:
> nexsw@nvalid (J)
>
> http://clinicaltrials.gov/ct/show/NCT00134069? Sorafenib, Cetuximab,
> and Irinotecan in Treating Patients With Advanced or Metastatic
> Colorectal Cancer Would those be them?

Just read todays Jacksonville paper. Item about Mayo Clinic (St
Lukes) they have an extensive cancer center. Also says there are
over 200 clinical trials. Hope this info helps. Blessings.

Mayo doesn't accept medicare or medicare HMOs.

Group: alt.support.cancer Date: Sun, Feb 11, 2007, 2:28pm (EST-3) From:
turtletrot1@bellsouth.net (turtletrot1)


Just read todays Jacksonville paper. Item about Mayo Clinic (St Lukes)
they have an extensive cancer center. Also says there are over 200
clinical trials. Hope this info helps. * Blessings.

On Feb 11, 6:19 pm, jonbo...@webtv.net (J W) wrote:
> Mayo doesn't accept medicare or medicare HMOs.
>
> Group: alt.support.cancer Date: Sun, Feb 11, 2007, 2:28pm (EST-3) From:
> turtletr...@bellsouth.net (turtletrot1)
>
> Just read todays Jacksonville paper. Item about Mayo Clinic (St Lukes)
> they have an extensive cancer center. Also says there are over 200
> clinical trials. Hope this info helps. Blessings.

But this might not preclude you from finding out obout the trials.
Trials do not need you to pay for them! Worth a few pushy calls!

Thank you, I went to Mayo website and they only have a handful of trials
for colon cancer. Most of which are with oxiliplatin which 've had and
failed but I will call them to see if there is anthing else not on the
website. Jacksonvile is only about an hour from me.

Regards,
Jonboy


Re: Clinical trial drug opinions?

Group: alt.support.cancer Date: Mon, Feb 12, 2007, 6:30am (EST-3) From:
turtletrot1@bellsouth.net (turtletrot1)
On Feb 11, 6:19 pm, jonbo...@webtv.net (J W) wrote:
Mayo doesn't accept medicare or medicare HMOs.
****Group: alt.support.cancer Date: Sun, Feb 11, 2007, 2:28pm
(EST-3) From:
turtletr...@bellsouth.net (turtletrot1)
Just read todays Jacksonville paper. Item about Mayo Clinic (St Lukes)
they have an extensive cancer center. Also says there are over 200
clinical trials. Hope this info helps. * Blessings.
But this might not preclude you from finding out obout the trials.
Trials do not need you to pay for them! Worth a few pushy calls!

J wrote:

> J W wrote:
>
> > Thank you, I went to Mayo website and they only have a handful of trials
> > for colon cancer. Most of which are with oxiliplatin which 've had and
> > failed but I will call them to see if there is anthing else not on the
> > website. Jacksonvile is only about an hour from me.
>
> Here's 5 Jacksonville (recruiting) clinical trials.
> http://clinicaltrials.gov/ct/show/NCT00079274
> http://clinicaltrials.gov/ct/show/NCT00252564
> http://clinicaltrials.gov/ct/show/NCT00118755
> http://clinicaltrials.gov/ct/show/NCT00083720
> There's lots of problems fitting you into a clinical trial.
> No measurable tumor, yet your CEA's rising.
> Some of them have oxiplatin combined.
> One removed the oxiplatin so read them carefully
>
> I forget your pre-existing conditions.
> I don't think they're Mayo but as someone else said, seems to me it's
> cheaper to pay for lower-cost accommodation nearby then pay the co-pay for
> the chemos?

I forgot this one
http://clinicaltrials.gov/ct/show/NCT00098787

J W wrote:

> was shocked that I was able toget my HMO to pay for me to go to Baltimore
> for the cytoreductive
> surgery with HIPEC.

Under a :"second opinion clause" ?
J

J W wrote:

> Thank you, I went to Mayo website and they only have a handful of trials
> for colon cancer. Most of which are with oxiliplatin which 've had and
> failed but I will call them to see if there is anthing else not on the
> website. Jacksonvile is only about an hour from me.

Here's 5 Jacksonville (recruiting) clinical trials.
http://clinicaltrials.gov/ct/show/NCT00079274
http://clinicaltrials.gov/ct/show/NCT00252564
http://clinicaltrials.gov/ct/show/NCT00118755
http://clinicaltrials.gov/ct/show/NCT00083720
There's lots of problems fitting you into a clinical trial.
No measurable tumor, yet your CEA's rising.
Some of them have oxiplatin combined.
One removed the oxiplatin so read them carefully

I forget your pre-existing conditions.
I don't think they're Mayo but as someone else said, seems to me it's
cheaper to pay for lower-cost accommodation nearby then pay the co-pay for
the chemos?
J

Checked out maybe going with a medicare suppliment or medigap insurance
plan instead of my HMO and it's not possible so I'm stuck with either
HMO or straight medicare. I could not afford straight nedicare as there
is no ot of pocket copayment ceiling or max so I'd be paying 20% of the
chemo cost as long as I was on it.

Seems that being on medicare means nothing if you are disabled and under
65 no medicare suppliment insurance will take you, only mediicare HMOs
will and with them you are limited to whatever area they cover usually
1-3 counties, if you go outside that for anything except emergency care
or some preapproved, prearranged treatment you won't be covered. If I
want to travel I'll have to restrict it to short trips when I'm not on
chemo cause I have to flush this port every 4-5 weeks. There goes my
hope of traveling the country during my last days.

Medigap or medicare suppliment insurance is only available as far as I
can find to those on medicare that are over 65. Since that's 15 years
away for me it's not an option. That stinks cause I really don't like
HMOs. PPOs are available through the HMO plans but again most of them
that I've found have no out of pocket copay max. Our mdical system is
really complicated and not very fair for young disabled but I suppose it
surely beats having no coverage. What these chemo drugs cost I would
have been penniless within a few months of treatment and no better off
cause it did not work.

On Feb 12, 5:57 pm, jonbo...@webtv.net (J W) wrote:
> Checked out maybe going with a medicare suppliment or medigap insurance
> plan instead of my HMO and it's not possible so I'm stuck with either
> HMO or straight medicare. I could not afford straight nedicare as there
> is no ot of pocket copayment ceiling or max so I'd be paying 20% of the
> chemo cost as long as I was on it.
>
> Seems that being on medicare means nothing if you are disabled and under
> 65 no medicare suppliment insurance will take you, only mediicare HMOs
> will and with them you are limited to whatever area they cover usually
> 1-3 counties, if you go outside that for anything except emergency care
> or some preapproved, prearranged treatment you won't be covered. If I
> want to travel I'll have to restrict it to short trips when I'm not on
> chemo cause I have to flush this port every 4-5 weeks. There goes my
> hope of traveling the country during my last days.
>
> Medigap or medicare suppliment insurance is only available as far as I
> can find to those on medicare that are over 65. Since that's 15 years
> away for me it's not an option. That stinks cause I really don't like
> HMOs. PPOs are available through the HMO plans but again most of them
> that I've found have no out of pocket copay max. Our mdical system is
> really complicated and not very fair for young disabled but I suppose it
> surely beats having no coverage. What these chemo drugs cost I would
> have been penniless within a few months of treatment and no better off
> cause it did not work.

Kaiser covered Socks 100% when traveling, anywhere in the world, any
medical facility for an emergency, but only Kaiser facilities for
routine. For some reason, they covered his routine bloodwork. HMO
medicare plan.

There are some HMOs with spotty coverage in various parts of USA.

But you're right - it's WAY too complicated a puzzle that no one
should have to figure out, especially an ill person.

There are cruise ships elderly or some ill people can stay on for a
very long time as a sort of alternative to nursing homes. Can be no
more expensive, depending on many factors.

Fig

J W wrote:

> Seems that being on medicare means nothing if you are disabled and under
> 65 no medicare suppliment insurance will take you, only mediicare HMOs
> will and with them you are limited to whatever area they cover usually
> 1-3 counties, if you go outside that for anything except emergency care
> or some preapproved, prearranged treatment you won't be covered. If I
> want to travel I'll have to restrict it to short trips when I'm not on
> chemo cause I have to flush this port every 4-5 weeks. There goes my
> hope of traveling the country during my last days.

Now's the time to travel, if you feel well.
J

> Medigap or medicare suppliment insurance is only available as far as I
> can find to those on medicare that are over 65. Since that's 15 years
> away for me it's not an option. That stinks cause I really don't like
> HMOs. PPOs are available through the HMO plans but again most of them
> that I've found have no out of pocket copay max. Our mdical system is
> really complicated and not very fair for young disabled but I suppose it
> surely beats having no coverage. What these chemo drugs cost I would
> have been penniless within a few months of treatment and no better off
> cause it did not work.
>

Medigap is covered by all Medicare eligible persons. As far as traveling,
the flushing the port shouldn't limit you. Your HMO won't cover a scheduled
flush unless you elect Hospice. I would offer to pay a VNA out of pocket
where ever you travel, they probably wouldn't bill you for one visit.

If you are feeling well this is the time to travel.

Alex

I spoke to an ins. agent who represents many different agencies and he
told me I can't get a medicare suppliment policy or medigap, I'm not
sure if they are the same thing or not. He told me that onlly folks over
65 on medicare could get them. He said disabled on medicare and under 65
could only get HMO coverage. Was I told wrong?? What is a VNA??



Group: alt.support.cancer Date: Tue, Feb 13, 2007, 7:31pm From:
alex@noemail.com (alex)

Medigap is covered by all Medicare eligible persons. As far as
traveling, the flushing the port shouldn't limit you. Your HMO won't
cover a scheduled flush unless you elect Hospice. I would offer to pay a
VNA out of pocket where ever you travel, they probably wouldn't bill you
for one visit.
If you are feeling well this is the time to travel.
Alex

"J W" <jonboy42@webtv.net> wrote in message
news:18902-45D27542-203@storefull-3256.bay.webtv.net...
>I spoke to an ins. agent who represents many different agencies and he