Re: Disappointed Update

[Guest guest]

Hi Donna,

I am so sorry to hear about Rick's CEA going up. We faced the same

thing a couple of weeks ago. I ran the SR procedure by the Onc and

he ended up sending us to Radiology to see about a similar procedure

called IMRT. It is also done on the liver.

I am kind of brain dead this morning and can not remember if you had

already discussed this with MD .

I can really sympathize with you on Rick's being bummed out. I

think that gets to me more than anything else. I live, eat, breath

beating this disease for . When he gets down, that gets to me

worse than anything else. It just makes me more determined to find

another avenue to take.

got another PET last Thursday. The Onc did not order it, but

the Radiologist did in order to put the plan together for the IMRT.

I thought we would be starting today but now it looks like Friday or

Monday. They also are going to do a trans rectal ultra sound next

Thursday to see if they can find out what to do about the extreme

pain in the rectal area.

Hang in there Donna, it looks like things are fixing to get real

busy around here.

Narice, if you are reading this post, thanks for your support.

Best Wishes to all,

Joyce

> Well, I survived our big Celebrity Charity event ............but

I'm

> sure far behind now on all the postings. :-) , it's soooooo

> good to have you back!!!! It was nice to see that " altman " name

> listed so many times. ;-)

>

> Rick had an appointment with the Onc Monday and we finally got the

> results of his CEA yesterday. It has gone up for the second time,

so

> he has ordered another CT Scan (the last one was 3 weeks ago and

> showed mild improvement since the May scan.) Since his CEA jumped

> three weeks ago from 21.8 to 32.4, and then again this time to

> 40.7 ...........he feels like there is " something " growing

> somewhere. So, ......the hunt is on. Not sure why he didn't ask

for

> a PET, since we just did the CT and didn't see anything, but we'll

> see what he does on this one. I, of course, didn't ask for a PET,

> because I don't want them to find something outside the liver, but

I

> am curious to know what is going on. Rick had already taken his

OXA

> drip yesterday (before the CEA report) and the doc told him to go

> ahead and take this cycle of Xeloda, but that in three weeks we

would

> probably get in touch with MD or something and find out

what

> we should do next because he thinks this treatment is failing.

>

> My question is this ......... it seems that the clinical trials

tend

> to require a " failure " of the other chemos by seeing a 25% growth

in

> spite of the chemo. We have discontinued the chemo and moved on

when

> it stops shrinking, but BEFORE it starts growing to keep from

> allowing growth to take place. Won't that keep us from having

access

> now to most of these trials? I will start researching that right

> now.

>

> Needless to say, we're diappointed and Rick is totally bummed

out.

> But, we will take a deep breath and push forward in search of our

> next " drug vehicle " to a longer future for Rick. We are NOT

giving

> up .........just having to jump over another hurdle! ;-) I will

try

> to catch up on all the posts and see how all of you are doing.

It's

> nice to be back so I can keep up with my " e-friends " . ;-)

>

> Kindest Regards,

> Donna Sisco

[Guest guest]

You're right Joyce ......watching THEM hurt (mentally and physically)

is what I have the most trouble dealing with. I'm glad you've found

a procedure to try.........I'll keep my fingers crossed for you.

They didn't want to try anything like that on Rick because both lobes

are covered (60%+) and I guess that's just too many " targets " and not

enough healthy tissue would remain. But we aren't giving

up .............just trying to hold on long enough for something

better to come along. Thanks for your encouragement ......... it

always helps!! :-)

Donna S.

> > Well, I survived our big Celebrity Charity event ............but

> I'm

> > sure far behind now on all the postings. :-) , it's soooooo

> > good to have you back!!!! It was nice to see that " altman " name

> > listed so many times. ;-)

> >

> > Rick had an appointment with the Onc Monday and we finally got

the

> > results of his CEA yesterday. It has gone up for the second

time,

> so

> > he has ordered another CT Scan (the last one was 3 weeks ago and

> > showed mild improvement since the May scan.) Since his CEA

jumped

> > three weeks ago from 21.8 to 32.4, and then again this time to

> > 40.7 ...........he feels like there is " something " growing

> > somewhere. So, ......the hunt is on. Not sure why he didn't ask

> for

> > a PET, since we just did the CT and didn't see anything, but

we'll

> > see what he does on this one. I, of course, didn't ask for a

PET,

> > because I don't want them to find something outside the liver,

but

> I

> > am curious to know what is going on. Rick had already taken his

> OXA

> > drip yesterday (before the CEA report) and the doc told him to go

> > ahead and take this cycle of Xeloda, but that in three weeks we

> would

> > probably get in touch with MD or something and find out

> what

> > we should do next because he thinks this treatment is failing.

> >

> > My question is this ......... it seems that the clinical trials

> tend

> > to require a " failure " of the other chemos by seeing a 25% growth

> in

> > spite of the chemo. We have discontinued the chemo and moved on

> when

> > it stops shrinking, but BEFORE it starts growing to keep from

> > allowing growth to take place. Won't that keep us from having

> access

> > now to most of these trials? I will start researching that right

> > now.

> >

> > Needless to say, we're diappointed and Rick is totally bummed

> out.

> > But, we will take a deep breath and push forward in search of our

> > next " drug vehicle " to a longer future for Rick. We are NOT

> giving

> > up .........just having to jump over another hurdle! ;-) I will

> try

> > to catch up on all the posts and see how all of you are doing.

> It's

> > nice to be back so I can keep up with my " e-friends " . ;-)

> >

> > Kindest Regards,

> > Donna Sisco

[Guest guest]

Hi, My name is Nick,I agree with your query,why should there have to be a

failure

of the chemo before we move on. They stopped my Camptosar(CPT-11) and the

Veg F(Avastin) did not control anything,rather mets to both lobes of the

liver and larger this time. Now I statrted the OXA yesterday,will get a new

port(had 2-removed 2,1 got infected and broke through the skin) and we will go

this

route. You made us feel better. My better half is Jane. I am 72,retired and a

year ago our hmo-stopped paying for meds. We have had fair luck until this

last time. In four years I have had 14 cats,11 x-rays,and 2 pets,the two pets

this year. I had an allergic reaction first time out and they decreased dose.

Second time around side effects were bad. This time

to soon to tell since I had only the one dose and I am being extremely

careful about

following instructions. Thanks again..I hope to keep in touch throught the

message boards. Nick M

[Guest guest]

Hi, Nick again. I started in a blind study with Avastin (veg F) after siz

months I

had improved. The opened the sudy,confirmed I had it and not a placebo and I

continue for a year. I had good results while of the 5FU+LV+CPT11(CAMPTOSAR)

Then something happened and two sans and a pet later here I am again. Seems

when they stopped the chemo,in six months the cancers returned,this time on

both lobes and larger. They did not reccommend radiation. So I had my first OXA

treatment

yesterday. and go back the 23rd. Thanks for your infor Nick M

[Guest guest]

Nick:

Thanks for joining in the discussion. I am new here too - although

have posted once before and have been reading posts. My mom has just

started her battle with Stage 4 colon cancer. Your tenaciousness and

spirit come through in your posts - all the best to you and your

family. Look forward to your updates.

Laurie

[Guest guest]

Thank you. Three of the patients I see frequently have stage 4,hope,a good

onc.,

and prayer work wonders. You really have to believe. Obvoiusly you support

your mom,that 99% of the success story. Thanks for writting Nick