Re chat last night

[Guest guest]

Just wanted to say how much I enjoyed the chat last night. We

really had some good question and awnsers going on. The only thing

I wish we could change is the way we sign on. It took us a little

time to figure out who each person was. Is there a way that we can

sign on with our names that we us on our messages here?

Another question is, can we go to chat at anytime we want? I think

this would prove helpful for some good one on one questions that you

may need a quick awnser to.

Terry and I stayed on pretty late and I bet she is getting in some

good ZZZZZZs this morning. I am a night owl, so it was great for me.

Best Wishes,

Joyce

[Guest guest]

Hi erica: We missed this one because we had two visits and a 51/2 hour chemo

session. For now they didn't see many changes. Only low rbc which is normal.

Nick did lose about 30 pounds since Thanksgiving. He has had a C.A.T and a

P.E.T.

and there were mixed opinions. The new rules for insurance won't cover all

the

treatments in a Dr.s office or facility for chemo. he is still on the

pump.Still taking

OXI.+5FU+LV+Avastin on an every three wekks schedule. Vomitting worst side

plus a back pain. He gets tired easily but since he will be 73 on St.

s Day,

thats not a big suprise. We changed insurance from BlueCrossBlue Shield to

AvMed

Premier Plus because some Dr.s dropped BC?BS since they lowered payments.

This last session we haven't been billed yet. The prescription coverage is

minimal but

since we had none last year anything helps. The co-pays rose to double. But

that

has happened to many others. The injectables fee is outrageous and we are

joining

a group who is seeking time before Congress. One sessions at 20% is close to

$956.00,it's keeping him alive but added to PCP,Onc.,Eye Dr.,and

Dermatologist

so far this month alone is$ 1210.00 and we are only on the 21st. We are

hoping that

the other HMO's ollow suit and pay for cancer care. This year there is

a$175.00 daily

fee for first 5 days of hospitalization ad co-pays on lab and tests. We need

a miracle

and may eventually sell the house and set up a medical trust. It scares

us,but we

are just going on a daily basis,one step at a time,the kids have helped out

but they

too,have mortagages and ar payments and tuition and ins., for themselves. I

really

think that if we live long enough we might have a Universal Health Care Plan

and

prescriptions might be at a reasonable cost. We have one miracle,he is still

alive,his quality of life is quite good,he has not had radiation because the

tumors are not

where they can be reached. We researched about 13 of the procedures we found

on the board. We asked about other meds.,the possibility of using the punp

over a longer

period of time since that helped considerably,but since we are still in the

Avastin trial

they say thats not part of the protocol. We had better success with the CPT11

which

is Camptosar(or Irrinataken) and the 5FU/LV Initially the tumors shrank,they

they

came back,lager both times. Every time we see,hear or read about new

procedures we check it out,we have a file like 3 feet high full of information

from

newspapers,

magazines,the net,things people sent us,and correspondence from

Austrailia,UK,France,Mexico,Canada,and some of central and South America.

ometimes it overwhelms us. You have been dealing with so much we admire and

respect your care,your knowledge and your attitude. Thanks for allowing us to

vent. We hope you mom's problem ets solved and that it is only Acid Reflux from

a med.

reaction. As of yet Nick has no tubes,few moth sores(cleared)and vey little

tingling in hands and feet. He has a rash and blisters,his hair went snow white

and after coming

back has begun to thin out(oxi reaction) He tales tohose premeds for nausea

and vomitt and against loose stools. But he upchucked all nightusually by day 6

he's ok

and the hot/cold bit tapers off. He gets this really red reaction(cfacial)

after the AVastin

that lats or 24/28 hours. His pressure goes up then drops. So after hearing

everyone elses compaints we feel pretty good. The prayers and the responses

have really helped. We thanks all of you very Much Nick and Jane

[Guest guest]

I agree. If we set up a certain time every week or two then we would

be able to know and plan ahead for it. Monday & Thursday through the

week are good nights for me or on the weekend. Anytime after 8 pm

cst would be fine also. I really enjoyed chat the other night and

hope we can get it worked out for once a week.

Becky Beach

caregiver to Jeff, diag 8/01 recurred 5/03 with liver and abd mets

> I think the weekly chat is a great idea. Its will give us a chance

to regroup more regularly and plan ahead so if we want to be involved

we can be sure to be.

> What is a good time for everyone? I know its tough because we are

all scattered around the country and the world for that matter.

> a