Re: Still working.../Donna

[Guest guest]

Donna,

MDA gave you a wonderful price on the spheres! We were charged $58,000. for

one dose of the spheres. The total hospital bill, not including CTs and

testing, was $86,000. The pre-testing and CTs were $25,000 and each follow

up visit is roughly $9,000 (which by the way is monthly).

Ginny

[Guest guest]

WOW!!! $58,000??? Ouch! She made sure I understood that was just

for the spheres ..... not including all the other medical costs of

actually administering them, tests, Doctor bill, etc. What hospital

did you use anyway?

Donna S.

> Donna,

>

> MDA gave you a wonderful price on the spheres! We were charged

$58,000. for

> one dose of the spheres. The total hospital bill, not including

CTs and

> testing, was $86,000. The pre-testing and CTs were $25,000 and

each follow

> up visit is roughly $9,000 (which by the way is monthly).

>

> Ginny

>

>

>

[Guest guest]

Yeah ......... sounds like the storage business is doing quite

well!! How did do with the treatment? Any severe side effects

and did he get good results? I realize each person is

different ....just wondered how it went for him. We just like the

idea of this better than surgically implanting the HAI pump ....not

sure which is statistically more effective really.

Thanks,

Donna S.

> UPMC/Pittsburgh. The really sad thing is that Sirtex (the

manufacturer)

> sells the spheres to the hospitals for something like $16,000. I

dont have

> the exact figure in front of me but I do remember thinking that 4

people

> could get treatment for what we were being charged. I called

administration

> at the hospital about this (yes...I have a very large neon " B "

glowing on my

> forehead!), they told me that the mark-up was due to storage.

>

> I dont know if anything has changed yet but when was going

for his

> first treatment in Oct, 2002, the spheres had to be ordered from

Australia,

> which took 2 weeks for delivery. In addition, there is a short

shelf life

> for the spheres and storage (after getting to UPMC) is usually 2

days max.

> This means that they make about $21,000 per day for storage.

>

> I get angry just thinking about it!

>

>

>

>

>

[Guest guest]

Donna,

did well on the spheres. We live 1000 miles from UPMC. He recieved

the treatment on a Friday and on Saturday morning we were on our merry way

back home. Driving of course. They had given such a blast of steroids

that he didnt sleep for about 4 days and when he fell asleep, he didnt wake

up for 1 week! All in all, it took about a month for him to get his strength

back to a normal level. However, he was still able to work daily. With the

second treatment, requested less steroids. This seemed to work better

for him. He didnt have the jitters and has been more himself this time.

had some discomfort in the liver area after the treatment but never

enough to take a pain killer of any kind. Nor did he have any of the other

symptoms of chemo. He has said many times that he would never be sorry that

he went that route. The procedure is very non-invasive and he has true

quality of life.

If you have any other more specific questions, feel free to email me with

your phone number and Ill call you. and I have spoken to several that

just needed to talk before they had the treatment. Write me at

ginny0619@....

Ginny

[Guest guest]

Donna,

did have what the doctor called " remarkable " shrinkage. His CA19-9

dropped from the 500s to (if my memory serves me correctly) in the 200s. His

CEA also dropped dramatically....400s to 130(?). Anyway if was good news all

around. continued to work daily and plays in a band every weekend. He

felt so good that he was doing things around the home that I hadnt seen him

do for over a year, work on his truck, some gardening, straightening the

shed, etc.

He had his second treatment on the 25th of last April. And he still feels

pretty good. He has a small garden that he tends to and piddles around the

house (between naps). He is trying to retire now, which he has definately

earned. But he still plays in the band every weekend (thats his true love!)

I did learn last week that there is a criteria for dosage with the spheres.

It was our understanding that 2 treatments to each lobe was the regimine but

now it seems that there is a maximum dosage that is allowed and obviously our

doctor chose to split the dosage so that would get the total of 4

treatments, which he still plans to pursue.

is refracting on the spheres now and has multiple new micro-mets

through his liver and 1 lung met. I cant help but wonder if he would have

faired better having done chemo with the spheres. The docs that do the

spheres are specialists in nuclear medicine. , however, was going

through a liver specialist to get his treatment. One thing that I would

encourage is to have an oncologist that will work closely with you and

whoever you choose to do the spheres. We didnt have that liberty since the

spheres were so new and we were fired by 3 oncs who refused to work with us

if chose the spheres. They wanted to do the oxaliplatin regimine

only (which can be done with the spheres).

had chose to by-pass the oxaliplatin since he had already refracted on

the 5FU and 5FU/leukevorin/CPT-11 within a 3 month period. He felt that he

needed to go out on a limb and find something that was liver specific since

that is where his disease was out of control (1 met to 15 in 3 months). And

I suspect that the 5FU is the culprit in the spheres not working. They use a

form of 5FU and saline to push the spheres deep into the liver.

Ive been searching for trials for , hoping to find something that would

use the oxaliplatin without the 5FU (or any other feasible treatment) and

spoke with the medical center in San , Texas. I was so encouraged to

hear that they would review ' records, set up and appointment, then lay

all of ' options out for him. This may or may not include trials.

feels that it might be a worthwhile way to go since they can follow him

for awhile and he may not have to bounce around looking for treatment

options. It would be nice for once to have an open-minded oncologist to turn

to.

Let me know if you want to talk.

Ginny

[Guest guest]

Ginny ......thank you SOOOO much for the information. It's really

helpful. Man .....1,000 miles???!!! That's quite a trip to take for

those treatments. My husband was happy to hear how well it went for

your husband. Any encouragement is good! I will start again in the

morning trying to secure our appointment. I believe we will be

discussing the benefits of HAI Pump and the Spheres and trying to

decide which is best for Rick's situation (if either). As soon as we

know that, I might want to visit with you on the phone. Did your

husband get shrinkage from the treatment .......... or at least

stablization of the tumors for awhile? I'm still a little concerned

that Rick may have something going on outside the liver ........and

if that's the case, we may not get to use either of these

treatments. But for now ........ we will keep our chin up and

proceed agressively after these options. Your information and

support is greatly appreciated. :-)

Kindest Regards,

Donna S.

> Donna,

>

> did well on the spheres. We live 1000 miles from UPMC. He

recieved

> the treatment on a Friday and on Saturday morning we were on our

merry way

> back home. Driving of course. They had given such a blast

of steroids

> that he didnt sleep for about 4 days and when he fell asleep, he

didnt wake

> up for 1 week! All in all, it took about a month for him to get

his strength

> back to a normal level. However, he was still able to work daily.

With the

> second treatment, requested less steroids. This seemed to

work better

> for him. He didnt have the jitters and has been more himself this

time.

>

> had some discomfort in the liver area after the treatment but

never

> enough to take a pain killer of any kind. Nor did he have any of

the other

> symptoms of chemo. He has said many times that he would never be

sorry that

> he went that route. The procedure is very non-invasive and he has

true

> quality of life.

>

> If you have any other more specific questions, feel free to email

me with

> your phone number and Ill call you. and I have spoken to

several that

> just needed to talk before they had the treatment. Write me at

> ginny0619@a...

>

> Ginny

>

>

>