A Rick Update :o)

October 8, 2004

Sorry I've been missing so long ......... as you know, I've been

caring for Rick and working from home on the Celebrity Charity event

I coordinate each year. The event went fine (and THANK GOD IT'S

OVER!!) and we raised over $185,000 .......... $48,500 of which

went to our local Cancer Support House. )

Now to the report on Rick. I'm happy to report he is fairly

stable. Now, he isn't doing as well as my last report ..... but he

is leveled off and stable. I really don't remember when I posted

last, but I believe I had just had a brain scan run on him and found

that he has leukoencephalopathy (an agressive virus in the brain) in

addition to his brain tumor. (A result of the whole brain

radiation, so much chemo, and a lowered immune system). About two

and a half or three weeks ago, Rick began to have trouble getting up

out of his recliner and off of the commode. Eventually, he could

not get up and ended up crawling from the commode back to his

recliner ......... one of the hardest things to watch, I assure

you. Especially for my big, proud, strong husband of 14 years.

Anyway, the muscles in his legs just keep gettin smaller and they

just can't lift 265 pounds well. So, we now have a lift chair and I

have placed a bedside commode (extended into the highest position)

over our home commode. Now he can get up and down ....... but only

from these two locations and from our bed. He just doesn't sit

anywhere else. As you can imagine, I am no help in assisting him in

getting up ....... as I weigh only 145 lbs ......... so this was our

best choice. )

Our Oncologist told me that Rick just couldn't hold on much

longer ........ but I believe Rick disagrees with him. ;-) Of

course, I didn't tell Rick, because he has requested to not hear

that " negative stuff " . Seems to have worked for him ....... as we

are now in our 25th month of this disease. He is now on Avastin,

because of the lesser side effects ..... and has had no big problem

from it. Is it working? We don't know yet ..... he's only had

three treatments and will have the fourth one next week. His last

CEA had gone up from 58 to 462 ... but that was pre-avastin and

after three weeks of no Erbitux/CPT-11. That treatment was working,

but he just couldn't handle the way it made him feel (probably the

CPT-11, due to the fact his body is so exhausted from the constant

bombardment).

I was able to convince his Endocronologist to let him try an insulin

pill and get off the injections ...... and that has worked even

better than the shots. Of course, Rick is really not eating much

now ...... hasn't been for about 6 weeks. So I'm sure it's easier

to keep the sugar levels in check. But, it's still nice to have him

not have to deal with being stuck 3 times a day. ) You learn to

appreciate the little victories with this stuff! ;-)

Rick has NO cancer pain, and still has NEVER thrown up or had

diarrhea!!!! Now, THAT is a miracle ....... wouldn't you say????

He does have lower back pain, from being so sedentary and from his

weight (mostly in his stomach). He still just " feels really bad "

and is unbelievably exhausted ......... but all things considered,

we really have no room to complain given his physical disease

status. For those that aren't familiar with Rick (one of the

strongest men I've ever seen!!!) he was diagnosed Stage IV in Sept

of '02 ...... had large tumor removed from colon, over 60% of his

liver was (and is)burdened with tumors, and 6 of 6 lymph nodes were

positive. He was diagnosed with a 4cm brain met in March of '04,

had Whole Brain Radiation treatments, and due to the side effects of

the steroids he takes for brain swelling, he developed steroid-

induced diabetes .... complete with insulin injections every day.

He suffered a Grand Mal seizure three weeks after the brain tumor

diagnosis, and has now developed the brain virus I described above

as a result of all the treatments. BUT ........... he has NEVER

given up the fight and has been on some form of chemo since October

of '02. Unfortunately, the very things that got him this far are

now as devastating to his body as the cancer. So ..... we do our

best with what we have and we try to make the most of each day.

I have finally figured out how to explain to people what Rick and I

go through each day .......... have you ever seen the movie " Ground

Hog Day " ? Well, that is what it's like here at the Sisco house! ;-

) We get up each day, hoping that something will be different, but

our routine is almost identical to the day before. ) Just seems

we are stuck in this " limbo " and can't get off of high center to

move in either direction. I keep a good supply of hydrocodone and

xanax for Rick (and me .... Xanax is my friend!!) ...... in an

effort to keep him relaxed and restful. Otherwise, he just watches

the minutes tick off the clock each day and spends it frustrated by

what he sees as his " prison " .

Well, that's about it for now. I thank you all for your support

over the last two years ........ and can promise you we would not

have made it this far without the love and knowledge gained from

this group. It has had such a big impact on the treatments we've

chosen and on our attitude!

Love & Good Wishes to you all!!!

Donna Sisco

S/O Rick, 50, Arkansas

09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and

60%+ Tumor Burden in Liver

09/24/02 - 10cm Tumor removed from Colon

10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7

months

06/11/03 - Appt at MD - Suggested changing chemo – failing

current treatment

07/25/03 - Began Oxaliplatin/Xeloda Chemo

10/20/03 - Increased Xeloda – Still failing treatment

11/12/03 - Added Celebrex - continued failure

01/15/04 - Switched to FOLFOX4 chemo

02/23/04 - CEA drops 80 points

02/25/04 - First Symptoms of Brain Problem

03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Junction of Left

Frontal and Parietal Lobe

03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron

03/15/04 - Last WBR Treatment

03/18/04 – Took last Decadron - extremely fast weaning process

03/22/04 - First Grand Mal Seizure (5 day hospital stay)

03/22/04 - Back on Decadron, added Dilantin & Insulin Shots (due to

steroid-induced diabetes)

04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux

04/13/04 – Not metabolizing Dilantin – adding Keppra

04/20/04 - Switched to CPT-11 with Erbitux

05/04/04 – Weaning from Dilantin, staying on Keppra

05/13/04 – CT Scans showed minimal shrinkage in brain tumor & liver

tumors, CEA dropped from 360 to 61, also some reduction of swelling

around BT

05/17/04 – Reduced Decadron to 2mgs/day

06/14/04 – CEA increases from 61 to 72.9

06/25/04 - Ultrasound of abdomen - no ascites

07/07/04 - CT of abdomen - Some focal intrahepatic ductal dilation

07/13/04 – Placed on Lasix for severe lower leg swelling and

breathing difficulties

07/26/04 – CEA dropped to 58

07/30/04 - Lasix increased to 120 mgs because swelling and breathing

difficulties returned ... also taking three week break from chemo

because of feeling so bad and extremely fatigued.

08/12/04 – CEA up to 147

08/23/04 – Brain MRI reveals stable tumor/edema, but now has

leukoencephalopathy

08/30/04 – Switching to Avastin only – eliminating chemo and Erbitux

(This is only because Rick does not wish to stop fighting, and this

drug seems to have less side effects)

October 8, 2004

>

> Sorry I've been missing so long ......... as you know, I've been

> caring for Rick and working from home on the Celebrity Charity

event

> I coordinate each year. The event went fine (and THANK GOD IT'S

> OVER!!) and we raised over $185,000 .......... $48,500 of which

> went to our local Cancer Support House. )

>

> Now to the report on Rick. I'm happy to report he is fairly

> stable. Now, he isn't doing as well as my last report ..... but he

> is leveled off and stable. I really don't remember when I posted

> last, but I believe I had just had a brain scan run on him and

found

> that he has leukoencephalopathy (an agressive virus in the brain)

in

> addition to his brain tumor. (A result of the whole brain

> radiation, so much chemo, and a lowered immune system). About two

> and a half or three weeks ago, Rick began to have trouble getting

up

> out of his recliner and off of the commode. Eventually, he could

> not get up and ended up crawling from the commode back to his

> recliner ......... one of the hardest things to watch, I assure

> you. Especially for my big, proud, strong husband of 14 years.

> Anyway, the muscles in his legs just keep gettin smaller and they

> just can't lift 265 pounds well. So, we now have a lift chair and

I

> have placed a bedside commode (extended into the highest position)

> over our home commode. Now he can get up and down ....... but only

> from these two locations and from our bed. He just doesn't sit

> anywhere else. As you can imagine, I am no help in assisting him

in

> getting up ....... as I weigh only 145 lbs ......... so this was

our

> best choice. )

>

> Our Oncologist told me that Rick just couldn't hold on much

> longer ........ but I believe Rick disagrees with him. ;-) Of

> course, I didn't tell Rick, because he has requested to not hear

> that " negative stuff " . Seems to have worked for him ....... as we

> are now in our 25th month of this disease. He is now on Avastin,

> because of the lesser side effects ..... and has had no big problem

> from it. Is it working? We don't know yet ..... he's only had

> three treatments and will have the fourth one next week. His last

> CEA had gone up from 58 to 462 ... but that was pre-avastin and

> after three weeks of no Erbitux/CPT-11. That treatment was

working,

> but he just couldn't handle the way it made him feel (probably the

> CPT-11, due to the fact his body is so exhausted from the constant

> bombardment).

>

> I was able to convince his Endocronologist to let him try an

insulin

> pill and get off the injections ...... and that has worked even

> better than the shots. Of course, Rick is really not eating much

> now ...... hasn't been for about 6 weeks. So I'm sure it's easier

> to keep the sugar levels in check. But, it's still nice to have

him

> not have to deal with being stuck 3 times a day. ) You learn to

> appreciate the little victories with this stuff! ;-)

>

> Rick has NO cancer pain, and still has NEVER thrown up or had

> diarrhea!!!! Now, THAT is a miracle ....... wouldn't you say????

> He does have lower back pain, from being so sedentary and from his

> weight (mostly in his stomach). He still just " feels really bad "

> and is unbelievably exhausted ......... but all things considered,

> we really have no room to complain given his physical disease

> status. For those that aren't familiar with Rick (one of the

> strongest men I've ever seen!!!) he was diagnosed Stage IV in Sept

> of '02 ...... had large tumor removed from colon, over 60% of his

> liver was (and is)burdened with tumors, and 6 of 6 lymph nodes were

> positive. He was diagnosed with a 4cm brain met in March of '04,

> had Whole Brain Radiation treatments, and due to the side effects

of

> the steroids he takes for brain swelling, he developed steroid-

> induced diabetes .... complete with insulin injections every day.

> He suffered a Grand Mal seizure three weeks after the brain tumor

> diagnosis, and has now developed the brain virus I described above

> as a result of all the treatments. BUT ........... he has NEVER

> given up the fight and has been on some form of chemo since October

> of '02. Unfortunately, the very things that got him this far are

> now as devastating to his body as the cancer. So ..... we do our

> best with what we have and we try to make the most of each day.

>

> I have finally figured out how to explain to people what Rick and I

> go through each day .......... have you ever seen the movie " Ground

> Hog Day " ? Well, that is what it's like here at the Sisco house! ;-

> ) We get up each day, hoping that something will be different, but

> our routine is almost identical to the day before. ) Just seems

> we are stuck in this " limbo " and can't get off of high center to

> move in either direction. I keep a good supply of hydrocodone and

> xanax for Rick (and me .... Xanax is my friend!!) ...... in an

> effort to keep him relaxed and restful. Otherwise, he just watches

> the minutes tick off the clock each day and spends it frustrated by

> what he sees as his " prison " .

>

> Well, that's about it for now. I thank you all for your support

> over the last two years ........ and can promise you we would not

> have made it this far without the love and knowledge gained from

> this group. It has had such a big impact on the treatments we've

> chosen and on our attitude!

>

> Love & Good Wishes to you all!!!

> Donna Sisco

> S/O Rick, 50, Arkansas

> 09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and

> 60%+ Tumor Burden in Liver

> 09/24/02 - 10cm Tumor removed from Colon

> 10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7

> months

> 06/11/03 - Appt at MD - Suggested changing chemo –

failing

> current treatment

> 07/25/03 - Began Oxaliplatin/Xeloda Chemo

> 10/20/03 - Increased Xeloda – Still failing treatment

> 11/12/03 - Added Celebrex - continued failure

> 01/15/04 - Switched to FOLFOX4 chemo

> 02/23/04 - CEA drops 80 points

> 02/25/04 - First Symptoms of Brain Problem

> 03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Junction of Left

> Frontal and Parietal Lobe

> 03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron

> 03/15/04 - Last WBR Treatment

> 03/18/04 – Took last Decadron - extremely fast weaning process

> 03/22/04 - First Grand Mal Seizure (5 day hospital stay)

> 03/22/04 - Back on Decadron, added Dilantin & Insulin Shots (due to

> steroid-induced diabetes)

> 04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux

> 04/13/04 – Not metabolizing Dilantin – adding Keppra

> 04/20/04 - Switched to CPT-11 with Erbitux

> 05/04/04 – Weaning from Dilantin, staying on Keppra

> 05/13/04 – CT Scans showed minimal shrinkage in brain tumor & liver

> tumors, CEA dropped from 360 to 61, also some reduction of swelling

> around BT

> 05/17/04 – Reduced Decadron to 2mgs/day

> 06/14/04 – CEA increases from 61 to 72.9

> 06/25/04 - Ultrasound of abdomen - no ascites

> 07/07/04 - CT of abdomen - Some focal intrahepatic ductal dilation

> 07/13/04 – Placed on Lasix for severe lower leg swelling and

> breathing difficulties

> 07/26/04 – CEA dropped to 58

> 07/30/04 - Lasix increased to 120 mgs because swelling and

breathing

> difficulties returned ... also taking three week break from chemo

> because of feeling so bad and extremely fatigued.

> 08/12/04 – CEA up to 147

> 08/23/04 – Brain MRI reveals stable tumor/edema, but now has

> leukoencephalopathy

> 08/30/04 – Switching to Avastin only – eliminating chemo and

Erbitux

> (This is only because Rick does not wish to stop fighting, and this

Donna,

Just wanted to say I admire both of you...Rick must be a very strong

willed man to have made it this far....I remember the day's when you

would post a couple of time's a week........You probably are really

busy now....I sure do understand that...I mostly lurk here now my mom

finished her chemo July the 3rd and since she is o.k. for now I just

can't read sleep and eat cancer 24/7.........Just too

upsetting......I wish you both the best and will be praying for

you....Remember take one day at a time((((((hugs to you both))))))

Jana

> drug seems to have less side effects)

October 8, 2004

Thanks for that update Donna. I was wondering how Rick was doing.

>