Possible drug switch

[Guest guest]

I never thought that I might be saying this. I spoke to Dr. Mauro today. We

were talking about having another PCR and the problems that I am running into

because of my new insurance. I have a high out of pocket deductible out of

state, then they MAY only pay 80% if they feel that it is a necessary visit or

test. It happens to be one of United Health's cheapest plan. This is what I

have been given from where I work, and I am in health care! I told Dr. Mauro

that I am doing well except that I am still anemic. Just trying to keep my

levels at 10.0/29.8 is good for me. I also told him that I also just had a

colonoscopy and endoscopy to make sure that I was I was not loosing blood from

some where. He then said that he might have to change me to Tsangia. Boy, was

I surprised to hear that! I have been PCRU for years on Gleevec and never

thought that I would switch to anything else. This is one of the reasons that I

still fly out to Portland to see him once a year. My oncologist here in Florida

hasn't even mentioned anything like that. He is nice and all that, and reads

everything on CML that he can, and goes to conferences on the subject, but just

isn't as knowledgable. I wanted to pay out of pocket for my testing and visit,

but my hubby doesn't want to as it is a lot of money, and I might be getting new

insurance by the end of the year. Needless to say, I was very upset with him as

this is my health we are talking about. Sorry, I guess I just had to vent.

Is there anything special that I should know about if I do make the switch?

Thanks,

[Guest guest]

Hi : I am also very anemic, and low platelets. I also have been PCRU

for quite a few years now on Gleevec. As for myself, I would hesitate to go off

the Gleevec, unless my counts were so low that they could not get them up. The

new year is not that far away if you think about it. Right now its not an

emergency to switch to Tasigna.

As for my doctor. I had the same doctor since 1998, and then he retired.

I just started with a new doctor who is following the same protocol as my old

doctor. I feel if I understand my numbers, and I know things are going in the

wrong direction then I would be off to see a specialist even if it was out of

network. Right now I just need my Oncologist so I can go for my tests when

needed and monitor how I am doing. Don't get too annoyed with your hubby on the

situation, he is just trying to do things to make it easier all around. Thats

just my opinion, and maybe it helps. We do get frustrated with things, and my

husband aggravates me sometimes when I try to discuss medical or other issues.

I know I am always looking for that quick fix. Take Care You Will Be Okay.

>

> I never thought that I might be saying this. I spoke to Dr. Mauro today. We

were talking about having another PCR and the problems that I am running into

because of my new insurance. I have a high out of pocket deductible out of

state, then they MAY only pay 80% if they feel that it is a necessary visit or

test. It happens to be one of United Health's cheapest plan. This is what I

have been given from where I work, and I am in health care! I told Dr. Mauro

that I am doing well except that I am still anemic. Just trying to keep my

levels at 10.0/29.8 is good for me. I also told him that I also just had a

colonoscopy and endoscopy to make sure that I was I was not loosing blood from

some where. He then said that he might have to change me to Tsangia. Boy, was

I surprised to hear that! I have been PCRU for years on Gleevec and never

thought that I would switch to anything else. This is one of the reasons that I

still fly out to Portland to see him once a year. My oncologist here in Florida

hasn't even mentioned anything like that. He is nice and all that, and reads

everything on CML that he can, and goes to conferences on the subject, but just

isn't as knowledgable. I wanted to pay out of pocket for my testing and visit,

but my hubby doesn't want to as it is a lot of money, and I might be getting new

insurance by the end of the year. Needless to say, I was very upset with him as

this is my health we are talking about. Sorry, I guess I just had to vent.

>

> Is there anything special that I should know about if I do make the switch?

> Thanks,

>

>

>

[Guest guest]

He then said that he might have to change me to Tsangia. Boy, was I surprised

to hear that! I have been PCRU for years on Gleevec and never thought that I

would switch to anything else. This is one of the reasons that I still fly out

to Portland to see him once a year. My oncologist here in Florida hasn't even

mentioned anything like that. He is nice and all that, and reads everything on

CML that he can, and goes to conferences on the subject, but just isn't as

knowledgable. I wanted to pay out of pocket for my testing and visit, but my

hubby doesn't want to as it is a lot of money, and I might be getting new

insurance by the end of the year. Needless to say, I was very upset with him as

this is my health we are talking about. Sorry, I guess I just had to vent.

>

> Is there anything special that I should know about if I do make the switch?

____________________________

Hi ,

Did Dr. Mauro say why he might want you to switch drugs? is it just because of

the low red count/anemia? If you are doing well on Gleevec and you find your

level of anemia manageable for you.....it does not sound like you NEED to change

drugs. I think they do feel that the 2nd generation drugs have fewer issues and

maybe less myelosuppression.

I am a OHSU/Dr. Druker patient, since 2000....I was between insurance at one

time and I just refused certain tests and had a minimal visit and that was fine

with them. I am pretty sure that I did not have a pcr at that time....we just

waited. If you get new insurance maybe you will have better coverage then and

can wait. Also for someone who is very stable like I think you have been, maybe

staying more with your local and just having Dr. Mauro for back-up is the way to

go. Many of the oldtimers have done that and are not traveling back and forth to

Portland.

I would press Dr. Mauro about why he is even thinking about switching drugs with

you.....and maybe it can wait. Sometimes you have to be right in their face

about 'this is costing you' because Drs. often to not know the finances of

treatment....that is someone else's job.

I have gone from Gleevec (5+ years, suboptimal response), Sprycel (4 years, with

pleural effusions the last year) and now I am on Tasigna for about 4 months and

this is probably the best drug for me side effect wise and also response so far.

But if Gleevec is working for you and you have decent quality of life, why

change????? And maybe right now you don't need to go out of state for treatment.

C.

[Guest guest]

,

When I spoke to Dr. Mauro, he was not I do not have to switch right away, but

maybe in the future. I am always tired with the anemia, even though I work full

time. I get exhausted. I haven't had a PCR in over a year from OHSU and the

ones that are offered in my area (as far as I know) only do 100,000 cells, not

a million or more. I only go to Portland once a year, so it is not as if I am

traveling every three months or so. I have been stable for the past 4 years or

so, but always want to be some what cautious. Since I am traveling to the

northeast to see my son and daughter-in-law, I felt that why waste the trip and

see Dr. Mauro at the same time. Still waiting to hear back form him about

finances and if the Memorial (University of Miami) does very sensitive

PCR's

Thanks for your in put.

>

>

>

> Hi ,

>

> Did Dr. Mauro say why he might want you to switch drugs? is it just because of

the low red count/anemia? If you are doing well on Gleevec and you find your

level of anemia manageable for you.....it does not sound like you NEED to change

drugs. I think they do feel that the 2nd generation drugs have fewer issues and

maybe less myelosuppression.

>

> I am a OHSU/Dr. Druker patient, since 2000....I was between insurance at one

time and I just refused certain tests and had a minimal visit and that was fine

with them. I am pretty sure that I did not have a pcr at that time....we just

waited. If you get new insurance maybe you will have better coverage then and

can wait. Also for someone who is very stable like I think you have been, maybe

staying more with your local and just having Dr. Mauro for back-up is the way to

go. Many of the oldtimers have done that and are not traveling back and forth to

Portland.

>

> I would press Dr. Mauro about why he is even thinking about switching drugs

with you.....and maybe it can wait. Sometimes you have to be right in their face

about 'this is costing you' because Drs. often to not know the finances of

treatment....that is someone else's job.

>

> I have gone from Gleevec (5+ years, suboptimal response), Sprycel (4 years,

with pleural effusions the last year) and now I am on Tasigna for about 4 months

and this is probably the best drug for me side effect wise and also response so

far. But if Gleevec is working for you and you have decent quality of life, why

change????? And maybe right now you don't need to go out of state for treatment.

>

> C.

>

>