Re: [Spam?] Re: [cml 2]Coralee

[Guest guest]

In a message dated 2/11/2007 8:57:16 A.M. Eastern Standard Time,

skipd_2002@... writes:

husbands. He too had to go off Gleevec and is being

> pushed for BMT.

> We are very interested in AMN as well. If you don't

> mind my asking,

> what are the reasons they want you to go off

> Gleevec and get a BMT?

>

> Take care,

Dear Coralee,

I have been on Interferon and ARA-C, and Gleevec, during my

CML journey. Both drug treatments were different, the first caused all sorts

of problems for me (and a lot of others) but we opted for it because none of

us wanted to go to BMT at the beginning of our diagnosis.

Gleevec came on the market the spring after I was dxd, so I latched on to

that

in hopes it would kill off my CML with miminal side effects. (Interferon had

not even

touched my CML...I was still 95% positive after four months of treatment.)

Anyway, I was very slow to attain remission with Gleevec. The first year

I bounced from 200mgs. to 300mgs. to 400mgs. all without incident, meaning,

relatively no side effects at all, but no remission either.

The next spring, I was found to have developed a mutation, called Trisomy 8,

and indicator that ALL may be just around the corner.

So, I consulted with the list, and went out to OHSU to see Dr. Mauro.

I concluded it best to be raised to 600mgs of Gleevec, so I upped the dose

and within

3 months reached ZERO!

However, within the three month period, I started to develop side effects,

severe bone pain,

weight gain, edema, nausea, fatigue, etc. The bone pain was so bad I

finally got

medicated for it after 5 months of hell.

I refused, all this time, to have a BMT. The docs pushed and pushed, saying

the side effects

from Gleevec were way too much for me to handle.

I went back down to 400mgs. and was ok for a while. Now, my CML is active,

so they

are pushing for BMT or, take my pick of either upping the dose back to

600mgs. or

trying another drug.

That is why I was so keen on hearing Skip's story of AMN. AMN is my drug of

choice,

providing I find out all I can on the side effects, etc. prior to pushing

for the drug.

So, I peruse the list in hopes of finding more info on the newer drugs, like

AMN 107, SKI 606, etc.

I hope this answers your question? It is, basically, due to the side

effects I am having and

the slipping of my remission that they want me to BMT. Let me know if I can

help you in

any way further, take care, Lynne A.

[Guest guest]

At 01:35 PM 2/11/07 -0500, you wrote:

>. AMN is my drug of

>choice,

>providing I find out all I can on the side effects, etc. prior to pushing

>for the drug.

>So, I peruse the list in hopes of finding more info on the newer drugs, like

>AMN 107, SKI 606, etc.

Hi Lynne,

There were AMN trials done at Dana Farber, so you should have tons of info

from those docs right in Boston area. Jerry's list has an AMN board....it

is not real active but you might get some info there.

www.newcmldrug.com

click on AMN Talk

I think maybe you are saying No to Sprycel because of the pleural

effusion....which only happens in something like 15 - 30% of patients. You

could still try this drug, which is available now, and then discontinue it

if it caused you problems.

I have known you for years and it seems like you have always had a doc

pushing you for a BMT. I think that is a bad idea (and a last resort for

you) because you are so drug sensitive.....what do you think a BMT

involves, months and years of necessary drugs!!! I would love to see you

find a doc (within your health care system) that has more experience

dealing with the cml drugs.........but maybe you are one of those who just

doesn't do well with this medication. Anyway, best of luck to you.

Maui Nanc

PS I am going to be in Florida in March and we see and meet Dawn and Capt.

Bob and Norma Bidleman for the first time!!