Re: Off trial 106

[Guest guest]

Just perusing the lists and I am sorry to see there is still some hurt

feelings amongst members. Hope the issues, whatever they are, get resolved

quickly and the list can move on again.

Anyway, just wanted to check in and let everyone know what is going on in my

world. I went into hospital yesterday and was told that now the 106 trial is

ending, I will be shoved off. It seems that even though there is an extension

of the trial ( I was not given this information from them, I found it out

from the group) it appears that I am the only CML patient on Trial 106 left at

UMass in Worcester, so they said due to the enormous amount of paperwork,

follow up, and their lack of staff, etc. it is not practical to keep me on any

longer. Now it is up to me to get my HMO to approve Gleevec and pay for it. It

is FDA approved so I don't think I'll have a hassle but one never knows with

these shaky HMO's.

So, after hearing that I was going off trial I was a bit upset, although I

knew one day this would happen. I just thought they'd keep me on the extension.

They tried to make it seem as though I should be happy for the freedom, but

I'm really not liking feeling that I'm in limbo.

That also comes from being told that once again, the oncologist I have been

seeing is leaving the hospital. This is Onc. #3 in one year's time! I get one

I like and he leaves, etc., etc. And, the doctor that I've been promised

from Hammersmith, the CML expert, is apparently not coming now. So I don't know

who my doctor is going to be, don't know where I'll be treated (don't know if

off-trial I'll be able to stay at this facility) and don't know if I'll get

the HMO to pay for Gleevec.

My counts were ok, a little concerned that they were on the high side (white

count was 8,400 from 5,500 last time) but I have been feeling a bit off

kilter for a while now so perhaps I'm fighting some flu or bug. I have been

having terrible bouts of nausea/vomiting every morning and have to live on

compazine practically all the time now. I do not know if it is a long lasting

stomach flu or something else, but it is getting to be of concern. The Gleevec

is

really doing a job on me this way for some reason. For the past 5 years the

only thing I've had to deal with is the bone pain and edema. Now this! It

started a few months ago, actually, and my doctor suggest that I now break up

the

dosing to 200 mgs. in a.m. and 200mgs. p.m.

OK, just wanted to check in and if there are any others (Giora?) on 106

could you let me know what's happening on your end? Thanks, Lynne A.

[Guest guest]

dear lynn

sorry to hear about your problems. please take it as easy as posible. you are

doing health wise fine so dont worry.

regarding 106 trial which you know i am on too. we had our israeli cml patients

meeting last week and our guest was prof row from haifa hospital. he is on the

directing board of the 106 trial and told us that novartis has decided for their

reasons to keep the follow up on the patients in the trial. they need this

info!!!1

he even said that novartis is flying patients or coming to their homes to do the

tests and follow up.

i suggest that you contact novartis usa, try to get to the person in charge of

clinical trieals their, and if not to barbara (i dont remember her last name)

who is a top public relation at novartis, and demend that they will keep

tracking you on the trial even if your centre does not want to do it.

i hope you will get what you deserve.

love

giora

Re: [ ] Off trial 106

Just perusing the lists and I am sorry to see there is still some hurt

feelings amongst members. Hope the issues, whatever they are, get resolved

quickly and the list can move on again.

Anyway, just wanted to check in and let everyone know what is going on in my

world. I went into hospital yesterday and was told that now the 106 trial is

ending, I will be shoved off. It seems that even though there is an extension

of the trial ( I was not given this information from them, I found it out

from the group) it appears that I am the only CML patient on Trial 106 left

at

UMass in Worcester, so they said due to the enormous amount of paperwork,

follow up, and their lack of staff, etc. it is not practical to keep me on

any

longer. Now it is up to me to get my HMO to approve Gleevec and pay for it.

It

is FDA approved so I don't think I'll have a hassle but one never knows with

these shaky HMO's.

So, after hearing that I was going off trial I was a bit upset, although I

knew one day this would happen. I just thought they'd keep me on the

extension.

They tried to make it seem as though I should be happy for the freedom, but

I'm really not liking feeling that I'm in limbo.

That also comes from being told that once again, the oncologist I have been

seeing is leaving the hospital. This is Onc. #3 in one year's time! I get one

I like and he leaves, etc., etc. And, the doctor that I've been promised

from Hammersmith, the CML expert, is apparently not coming now. So I don't

know

who my doctor is going to be, don't know where I'll be treated (don't know if

off-trial I'll be able to stay at this facility) and don't know if I'll get

the HMO to pay for Gleevec.

My counts were ok, a little concerned that they were on the high side (white

count was 8,400 from 5,500 last time) but I have been feeling a bit off

kilter for a while now so perhaps I'm fighting some flu or bug. I have been

having terrible bouts of nausea/vomiting every morning and have to live on

compazine practically all the time now. I do not know if it is a long lasting

stomach flu or something else, but it is getting to be of concern. The

Gleevec is

really doing a job on me this way for some reason. For the past 5 years the

only thing I've had to deal with is the bone pain and edema. Now this! It

started a few months ago, actually, and my doctor suggest that I now break up

the

dosing to 200 mgs. in a.m. and 200mgs. p.m.

OK, just wanted to check in and if there are any others (Giora?) on 106

could you let me know what's happening on your end? Thanks, Lynne A.