Re: My Brother--Need help!

[Guest guest]

Brother dx 10/01; resection. 5FU/Lev- 6 months; 10/03 one recurrent met 3.5

cm to peri-aerota. 1/04 began Radiation and chemo (4,000 mg Xeloda five days

and oxaliplatin once a weekm plus radiation for 28 days with 5-7 treatments

to go.

About 2 weeks ago, he had extreme stomach pain for about 48 hours and I asked

the board about the symptoms of possible food poisoning vs symptoms of chemo

and several wrote back. I really appreciated the responses and now have to

come back and tell you that my brother is failing very fast with diaherra that

cannot be stopped (once an hour is the norm for the past 1 1/2 weeks; he is

so weak -- has been going daily to hospital for IV's for fluid. They cannot

admit him, because they have no beds available.

Last Fall when he had his recurrent met, he went to Markey Cancer Center in

Lexington, KY. Had consultation with a " team " of doctors and got the above

protocol--supposedly a clinical trial from Germany (I could never find it on the

internet). Since he lives in a small town they can coordinate treatment with

the local hospital, which they did for the chemo (he was going daily for the

radiation to Markey).

Anyway, a Dr. Desimone heads the team. He has tried to see him several times

and can't get an " appointment " for a couple of weeks. In the meantime, he

continues to decline. And here I set--600 miles away, unable to do anything. I

have been his Research Assistant. This board is my learning place and I have

been stumped to try to figure out how to help him.

Does anyone have any suggestions?

Betty (Gurlstar)

[Guest guest]

Betty, my husband had such bad diarrhea that no oral meds would

help. It came down to given him three shots daily in his abdomen and

for the life of me, I cannot remember what it was that I injected.

That kicked in about 4 days after we started it. He was going an

average of 15 to 20 times a day....just on 5fu/leuc.

I cannot believe that your brother can't get in to see a doctor to

help control his diarrhea. What about his regular doctor, at the

very least, or why aren't they doing anything for him at the hospital

where they hydrate him. This can be a very serious condition and to

not attempt to stop the diarrhea seems outrageous to me. Isn't there

someone close to your brother who can advocate for him...like get on

the phone and make some not to pleasant phone calls? Perhaps you can

do that from where you are at. It took me bitching and bitching

before Bert finally got the shots to put the diarrhea under

control....up until then, it was try not to eat foods that are high

in fiber and increase the oral meds, " as needed. "

I hope he feels better soon and please help him stay on top of this.

More people than less have ended up in the hospital with severe

complications from diarrhea, including major colon infections, of

which my husband was one of them.

I'll be thinking of you and hoping that things turn around real soon.

Hugs,

Monika

,

> Brother dx 10/01; resection. 5FU/Lev- 6 months; 10/03 one recurrent

met 3.5

> cm to peri-aerota. 1/04 began Radiation and chemo (4,000 mg Xeloda

five days

> and oxaliplatin once a weekm plus radiation for 28 days with 5-7

treatments

> to go.

> About 2 weeks ago, he had extreme stomach pain for about 48 hours

and I asked

> the board about the symptoms of possible food poisoning vs symptoms

of chemo

> and several wrote back. I really appreciated the responses and

now have to

> come back and tell you that my brother is failing very fast with

diaherra that

> cannot be stopped (once an hour is the norm for the past 1 1/2

weeks; he is

> so weak -- has been going daily to hospital for IV's for fluid.

They cannot

> admit him, because they have no beds available.

>

> Last Fall when he had his recurrent met, he went to Markey Cancer

Center in

> Lexington, KY. Had consultation with a " team " of doctors and got

the above

> protocol--supposedly a clinical trial from Germany (I could never

find it on the

> internet). Since he lives in a small town they can coordinate

treatment with

> the local hospital, which they did for the chemo (he was going

daily for the

> radiation to Markey).

> Anyway, a Dr. Desimone heads the team. He has tried to see him

several times

> and can't get an " appointment " for a couple of weeks. In the

meantime, he

> continues to decline. And here I set--600 miles away, unable to do

anything. I

> have been his Research Assistant. This board is my learning place

and I have

> been stumped to try to figure out how to help him.

> Does anyone have any suggestions?

> Betty (Gurlstar)

>

>

>

>

>

>

>

>

[Guest guest]

Thanks, Monika. That's what I'm thinking that he has--some sort of major

colon infection. He has been getting 2 or 3 IV's per day at the local hospital

since last Thursday, but all it has done is keep him somewhat hydrated. They

have a terrible time finding a vein because he is so dry and of course, by the

time he gets home he's exausted--doesn't sleep because of diarrhea. I'm just

afraid that he's gone so long they won't be able to stop the infection....

Pray for him!

Betty

[Guest guest]

Wow, ....I love your positive attitude! My brother supposedly has a 3.5

mm met to peri-aeorta and no other evidence of disease anywhere! So with the

" aggressive " treatment, his hope was to get out from under this disease for

good. Was that wisful thinking, or should he have had it excised? One should

never look back, but I wonder.....'Thanks for the response.

betty

[Guest guest]

Betty,

I hope that your brother can get relief soon,what ever the cause may

be.And the request to 'pray for him',I have included him this morning

and I will continue to do so,and also for you to have strength and

rest.

Hugs & Prayers,

> Thanks, Monika. That's what I'm thinking that he has--some sort of

major

> colon infection. He has been getting 2 or 3 IV's per day at the

local hospital

> since last Thursday, but all it has done is keep him somewhat

hydrated. They

> have a terrible time finding a vein because he is so dry and of

course, by the

> time he gets home he's exausted--doesn't sleep because of

diarrhea. I'm just

> afraid that he's gone so long they won't be able to stop the

infection....

> Pray for him!

> Betty

>

>

>