Terry - Xeloda/Oxaliplatin/Avastin

[Guest guest]

(This is in reply to message #8539)

Terry wrote:

<<Yes, I am thinking of using the Oxaliplatin in conjunction with

the Xeloda...am even thinking now that if I wait a bit, maybe I

could use it in conjunction with Xeloda and Avastin when it becomes

available if I can find a way to pay for it all>>

Terry, I think that makes a lot of sense. But don't wait TOO long

for the Avastin to come out! We really don't know just WHEN that

will happen...plus, you can always add in the Avastin later, after

the Oxaliplatin starts working...

Best,

[Guest guest]

Dear Terry:

I hope my last response to you " get yourself to a new doctor and on

the oxali, etc. " didn't seem flip or insensitive. I'm just kind of

direct.

That being said, I didn't realize that you had some underlying fears

about the oxali. But really, that shouldn't be too much of a concern.

It's not too bad at all. In fact, I thought that the side effects from

the 5fu (which made my stomach terribly acidic and hence caused

vomitting) were much worse than those from the oxali. So, if your

hesitation to go forward is because you are scared to take the oxali,

let me try to reassure you that that shouldn't be a huge worry for

you. I didn't lose my hair, didn't feel all that horrible and nothing

incredibly weird happened...and this was the same experience that most

all of my oncs' other patients had.

Good luck in your decision.

Best regards,

Jodi

> In a message dated 1/4/2004 2:28:52 PM Eastern Standard Time,

> altman23@y... writes:

> Terry, I think that makes a lot of sense. But don't wait TOO long

for the

> Avastin to come out! We really don't know just WHEN that will

happen...plus,

> you can always add in the Avastin later, after the Oxaliplatin

starts working...

>

> Best,

>

>

> Yes, that's a good thought, ...I am just so tired of thinking

what to

> do. But I HAVE to be the one to think what to do, IYKWIM. And for

some reason,

> it just doesn't FEEL right to me to do the Oxali right now.

>

> Now...the big question of the hour is: does it not feel right

because it's

> NOT the right decision for me at this time or does it not feel right

because I'm

> scared to do it? That's pretty much what I've been struggling with.

And the

> fact that I don't really have a huge amount of faith in my onc.

doesn't help.

>

>

> Thank you for your thoughts on this...as well as everyone else who has

> responded to me or just read through my latest drivel, I do

appreciate it...

>

> Terry in ga

>

>

>

[Guest guest]

In a message dated 1/4/04 5:24:50 PM Eastern Standard Time,

flipper759@... writes:

> I have a meeting tonight but if possible I'll try looking around the net

> and

> see what I can find

> out. Even those of us with good insurance plans could use this information.

> When I find out I'll post it under a new thread.

>

>

> Hang in there Terry!

> God Bless

> Narice

>

Thanks, Narice...again, I appreciate it so much....

Terrry in GA

[Guest guest]

In a message dated 1/4/04 6:46:25 PM Eastern Standard Time,

erica259@... writes:

> Think of it this way.. worse case senario.. let's say the side effects for

> you are just horrible and not able to be managed.. you can stop treatment..

> and they will fade.

> Best case.. it works wonders for you and you manage the side effects with

> ease....

> a

>

True...I am keeping that option in the back of my mind...

Terry in GA

[Guest guest]

Hi Nick And Jane:

I don't know who BCBS is, but I am thrilled for you!!!

The kindness, compassion and common sense of some very good people

(Wise Men?) combined with your tenacity (didn't I say I'd see your

pictures beside that tenacious word in the dictionary - or was it

some synonym?) has obviously worked out to be a very excellent

combination indeed.

If there was a story printed in the Miami Herald, I would love to

read it.

I know that others will gain some strength from your story and some

courage to come forward and seek assistance themselves.

Very proud of you,

Laurie

> A second to your don't hesitate to take Oxy or Electostatin(Same)

fewer side

> effects,no hair loss,Nick has had some serious nausea but it lasted

less time

> this go round. Longer infusion period,slower volume,same doseage.

He gets it

> with 5FU/LV/+Avastin. Mixed effects but were still on same protocol.

> Need to say a word here,just before Thanksgiving we had received a

letter

> telling

> us about more fees and co-pays. It was scary because a 20% co-pay

on chemo

> meant we might have had to look elsewhere. We contacted lots of

others,got on

> the phoe banks,sent out volume e-mails and decided,to enjoy the

holiday,while

> we could,and prayed for a miracle. TODAY WE GOT OUR MIRACLE<OUR

MAGIC MOMENT<

> MITZVAH<GIFT<CALL IT WHAT YOU MAY. A reporter from the Miami

> Herald had called,left me a message and I returned the call. He

told me he

> had contacted BCBS and that they told him they were going to recind

that

> charge.It was

> about 7:10 P.M. I called customer service,spoke to a delightful

youn woman

> named

> and she confirmed that as of Friday 01/02/04 that particular

charge was

> indeed

> retracted. I cried,I was happy,ecstatic,relieved,unbelieving. We

had been

> looking at

> 14 x $1,600 for chemo payments. We checked out seling the house and

renting

> an

> apartment,after paying of mortgage we would have had about

$100.000.00 and we

> have

> three years to declare it so it would have bout about 7 years of

therapy

> providing they

> paid for scans,etc. You have no idea how many other cancer patients

may feel

> like

> we do. I'm still numb. Last year we had to pay for all his

prescription

> meds(normal)

> and that was close to $5.700.00 dollars. This year they will pay

about

> $300.00 per

> quarter which is a big help. So you see,the Epiphany which is

celebrated

> Jan.6th came early for us(the first Christmas when the Wise Men

gave the Baby

> Christchild

> gifts. We get or life back,and I don't really know who/whom to

thank. Just

> had to

> shout it out. Thanks for listening. Nick & Jane

>

>

>