Ariad Trial

[Guest guest]

Dear (Linscott),

Maybe everyone in the Ariad trial could post and identify themselves and we

could compare our notes. As far as I know I am doing well. As I said earlier,

my difficulties

are due to acute renal failure and all the drugs I am taking for that one

specific thing and only one for CML. Seems like it would be the other way

around. My next BMB is scheduled for February, I think. They have never said

anything about a FISH. The only one I had that I am aware of was the last time

I was in the local hospital. They said they wanted a FISH test since they took

me off the SKI drug. I never did get the results of it.

I never asked for it because I no longer go to that office and have no desire to

walk through those doors and ask for anything. Too much bad blood has passed

between us. When you lie, you have to tell another lie to cover that one up.

My mother used to say that people who lied were like cats who always buried

their litter. LOL

I went to MDADD in early November, but I didn't get my first pill until the

following week. When I was in the BMS trial, everyone was in the office to

watch me take my first pill.

This time, I was the only person there once I picked them up, so the little

ritual ended there when I took it with a bottle of water in the lobby. I could

have been drinking gin and no one would nave taken note. LOL.

In the beginning I had all sorts of things " growing " on me, so they sent me to a

doctor in infectious diseases. I did have several wing worms on my thighs.

Never had that in my life, but it is a fungus. They gave me a script for jock

itch. I checked it out to be sure and I have no " jock " . LOL They all seem to

be peeling and drying up. My alligator hyde looks like it wants to shed, so

maybe I will look more human than a reptile. LOL

I am now wearing a patch to try to stem the tide of ever increasing B/P and it

is quite often over 200, which can be worrisome. I have loads of meds to take

for it, but it only lowers it for a short while and becomes elevated again. As

I said before, I do not believe that Ariad caused any of this, because the first

week, I had none of those things.

I am on a higher does than Bobby. She is on 15 I believe and I am on 45 mg. If

I am wrong, she can set the record straight. Still she attained PCRU for the

first time in her

life after a very brief time. I think the oncologists are pretty excited about

it. I think this phase was reserved for people like me who didn't respond and

failed the other trials.

Who knows, I may be in Bobby's class soon. I think Beth had done well with

Ariad, too.

Beth, would you mind joining in here and telling us a little bit of how you came

to be in the trial and how long it took you to get to PCRU, your dosage and did

you have any side effects? I have a short memory (lol) and we have some

newcomers who might want to follow up on this amazing drug. It's a TKI, but has

a much different formula than the others. Wow, after this, Ariad will be up

there on the charts and a new leader for CML drugs. This is a very small

company compared to Bristol Myers Squibb and giant Novartis. Because of its

efficacy, I wonder what their price tag will be??????????

So here we are standing at the cusp of a new Araid club and open for anyone who

is in the trial. LOL

Carpe Diem,

Lottie Duthu

[Guest guest]

Hi Lottie,

Our timeline is very similar.  I started Ariad the end of November. I, too,

took

my medicine in the lobby with the drinking fountain.  Very different than my

experience on Deciphera.  I had been in the Deciphera Phase 1 trial since

February.  It kept my blood stable but never got my PCR counts down...so Dr.

Talpaz switched me to Phase 2 Ariad. I also am on 45 mg.   I do have the

T315i

mutation, so he is hopeful this is the drug for those of us with this

mutation. 

Last week they did a PCR and FISH test, so am waiting results of those tests

now.  I don't think these tests were in the trial protocal, but Dr. Talpaz

ordered them anyway- I think he is as curious as me to see how quickly I respond

to this drug.  My only side effect so far is rash (that has cleared) and now

very dry skin!  Really dry...so I keep experimenting with different creams-

Eucerin, oils, etc.  If anyone has any ideas I'd love to hear them. I continue

to travel to MI each month and looking forward to zero- hopefully! 

In Hope,

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Tue, January 4, 2011 12:05:45 AM

Subject: [ ] Ariad Trial

 

Dear (Linscott),

Maybe everyone in the Ariad trial could post and identify themselves and we

could compare our notes. As far as I know I am doing well. As I said earlier, my

difficulties

are due to acute renal failure and all the drugs I am taking for that one

specific thing and only one for CML. Seems like it would be the other way

around. My next BMB is scheduled for February, I think. They have never said

anything about a FISH. The only one I had that I am aware of was the last time I

was in the local hospital. They said they wanted a FISH test since they took me

off the SKI drug. I never did get the results of it.

I never asked for it because I no longer go to that office and have no desire to

walk through those doors and ask for anything. Too much bad blood has passed

between us. When you lie, you have to tell another lie to cover that one up. My

mother used to say that people who lied were like cats who always buried their

litter. LOL

I went to MDADD in early November, but I didn't get my first pill until the

following week. When I was in the BMS trial, everyone was in the office to watch

me take my first pill.

This time, I was the only person there once I picked them up, so the little

ritual ended there when I took it with a bottle of water in the lobby. I could

have been drinking gin and no one would nave taken note. LOL.

In the beginning I had all sorts of things " growing " on me, so they sent me to a

doctor in infectious diseases. I did have several wing worms on my thighs. Never

had that in my life, but it is a fungus. They gave me a script for jock itch. I

checked it out to be sure and I have no " jock " . LOL They all seem to be peeling

and drying up. My alligator hyde looks like it wants to shed, so maybe I will

look more human than a reptile. LOL

I am now wearing a patch to try to stem the tide of ever increasing B/P and it

is quite often over 200, which can be worrisome. I have loads of meds to take

for it, but it only lowers it for a short while and becomes elevated again. As I

said before, I do not believe that Ariad caused any of this, because the first

week, I had none of those things.

I am on a higher does than Bobby. She is on 15 I believe and I am on 45 mg. If I

am wrong, she can set the record straight. Still she attained PCRU for the first

time in her

life after a very brief time. I think the oncologists are pretty excited about

it. I think this phase was reserved for people like me who didn't respond and

failed the other trials.

Who knows, I may be in Bobby's class soon. I think Beth had done well with

Ariad, too.

Beth, would you mind joining in here and telling us a little bit of how you came

to be in the trial and how long it took you to get to PCRU, your dosage and did

you have any side effects? I have a short memory (lol) and we have some

newcomers who might want to follow up on this amazing drug. It's a TKI, but has

a much different formula than the others. Wow, after this, Ariad will be up

there on the charts and a new leader for CML drugs. This is a very small company

compared to Bristol Myers Squibb and giant Novartis. Because of its efficacy, I

wonder what their price tag will be??????????

So here we are standing at the cusp of a new Araid club and open for anyone who

is in the trial. LOL

Carpe Diem,

Lottie Duthu

[Guest guest]

Hi Lottie,

Thank you for remembering me! :-)

I was diagnosed with CML in June 2008; " failed " Gleevec in Feb. 2009. Found to

have the T315i mutation in March 2009. My original docs wanted me to go to

transplant..even told me there were no trials available! Ended up at UCSF with

Dr. Shah and started the Ariad trial at 30mg in June 2009.

At my first BMB (3 months in) I was undetectable by FISH and metaphase analysis

(I think that is the correct term.) PCR was very low. My six month PCR showed

" faintly positive. " Unfortunately, my 9 and 12 month PCR's showed a bit of a

jump, so we increased my dosage to 45mg. Also unfortunately, within a few weeks

I ended up with a burning rash over half my body--quite unpleasant!! I took a

two week holiday and started back again at 30mg. My last BMB/PCR in October

showed essentially nothing (PCR was weakly positive--meaning we know you have

CML, we saw something, but cannot quantify it, so we'll just say something is

there).

Overall, I'm doing great! For the first time since diagnosis, since October I've

actually mostly felt completely normal...great energy levels almost all the

time, etc. My biggest side effect is incredibly dry skin and some tingling on

the back of my upper arms. I use Neutragena Body Oil in the shower every day and

that keeps it manageable. I also get tiny eye bleeds in my right eye about every

few weeks or so, nothing dramatic, but definitely there once in awhile. And, of

course, fatigue every once in awhile.

I've really learned to live with my new normal and slow down and sleep when I

need to. One big thing that I have come to grips with is truly understanding and

accepting that there is no promise of tomorrow so I must choose to live today.

Somehow I've managed to get myself to a place where I no longer panic about what

the future will bring. I'm in a good place today and I want to enjoy the

present. I'll deal with tomorrow when it comes. If things fall apart for me, I

don't want to look back on this golden time remembering that I was worried and

unhappy. I want to look back and remember this as a happy time.

A big thank you to everyone before me who had the courage to be in drug trials

and to share your story with all of us. Your inspiration gave me the courage to

try AP24535 and gave me the chance at life.

Happy New Year!

Beth

[ ] Ariad Trial

 

Dear (Linscott),

Maybe everyone in the Ariad trial could post and identify themselves and we

could compare our notes. As far as I know I am doing well. As I said earlier, my

difficulties

are due to acute renal failure and all the drugs I am taking for that one

specific thing and only one for CML. Seems like it would be the other way

around. My next BMB is scheduled for February, I think. They have never said

anything about a FISH. The only one I had that I am aware of was the last time I

was in the local hospital. They said they wanted a FISH test since they took me

off the SKI drug. I never did get the results of it.

I never asked for it because I no longer go to that office and have no desire to

walk through those doors and ask for anything. Too much bad blood has passed

between us. When you lie, you have to tell another lie to cover that one up. My

mother used to say that people who lied were like cats who always buried their

litter. LOL

I went to MDADD in early November, but I didn't get my first pill until the

following week. When I was in the BMS trial, everyone was in the office to watch

me take my first pill.

This time, I was the only person there once I picked them up, so the little

ritual ended there when I took it with a bottle of water in the lobby. I could

have been drinking gin and no one would nave taken note. LOL.

In the beginning I had all sorts of things " growing " on me, so they sent me to a

doctor in infectious diseases. I did have several wing worms on my thighs. Never

had that in my life, but it is a fungus. They gave me a script for jock itch. I

checked it out to be sure and I have no " jock " . LOL They all seem to be peeling

and drying up. My alligator hyde looks like it wants to shed, so maybe I will

look more human than a reptile. LOL

I am now wearing a patch to try to stem the tide of ever increasing B/P and it

is quite often over 200, which can be worrisome. I have loads of meds to take

for it, but it only lowers it for a short while and becomes elevated again. As I

said before, I do not believe that Ariad caused any of this, because the first

week, I had none of those things.

I am on a higher does than Bobby. She is on 15 I believe and I am on 45 mg. If I

am wrong, she can set the record straight. Still she attained PCRU for the first

time in her

life after a very brief time. I think the oncologists are pretty excited about

it. I think this phase was reserved for people like me who didn't respond and

failed the other trials.

Who knows, I may be in Bobby's class soon. I think Beth had done well with

Ariad, too.

Beth, would you mind joining in here and telling us a little bit of how you came

to be in the trial and how long it took you to get to PCRU, your dosage and did

you have any side effects? I have a short memory (lol) and we have some

newcomers who might want to follow up on this amazing drug. It's a TKI, but has

a much different formula than the others. Wow, after this, Ariad will be up

there on the charts and a new leader for CML drugs. This is a very small company

compared to Bristol Myers Squibb and giant Novartis. Because of its efficacy, I

wonder what their price tag will be??????????

So here we are standing at the cusp of a new Araid club and open for anyone who

is in the trial. LOL

Carpe Diem,

Lottie Duthu

[Guest guest]

Your doing awesome Beth! I think about you all the time and it's good to read

how well you are doing. Keep on keepin on!

 

God Bless,

Jackie S.

From: bethgalliart@... <bethgalliart@...>

Subject: Re: [ ] Ariad Trial

Date: Wednesday, January 5, 2011, 11:48 AM

 

Hi Lottie,

Thank you for remembering me! :-)

I was diagnosed with CML in June 2008; " failed " Gleevec in Feb. 2009. Found to

have the T315i mutation in March 2009. My original docs wanted me to go to

transplant..even told me there were no trials available! Ended up at UCSF with

Dr. Shah and started the Ariad trial at 30mg in June 2009.

At my first BMB (3 months in) I was undetectable by FISH and metaphase analysis

(I think that is the correct term.) PCR was very low. My six month PCR showed

" faintly positive. " Unfortunately, my 9 and 12 month PCR's showed a bit of a

jump, so we increased my dosage to 45mg. Also unfortunately, within a few weeks

I ended up with a burning rash over half my body--quite unpleasant!! I took a

two week holiday and started back again at 30mg. My last BMB/PCR in October

showed essentially nothing (PCR was weakly positive--meaning we know you have

CML, we saw something, but cannot quantify it, so we'll just say something is

there).

Overall, I'm doing great! For the first time since diagnosis, since October I've

actually mostly felt completely normal...great energy levels almost all the

time, etc. My biggest side effect is incredibly dry skin and some tingling on

the back of my upper arms. I use Neutragena Body Oil in the shower every day and

that keeps it manageable. I also get tiny eye bleeds in my right eye about every

few weeks or so, nothing dramatic, but definitely there once in awhile. And, of

course, fatigue every once in awhile.

I've really learned to live with my new normal and slow down and sleep when I

need to. One big thing that I have come to grips with is truly understanding and

accepting that there is no promise of tomorrow so I must choose to live today.

Somehow I've managed to get myself to a place where I no longer panic about what

the future will bring. I'm in a good place today and I want to enjoy the

present. I'll deal with tomorrow when it comes. If things fall apart for me, I

don't want to look back on this golden time remembering that I was worried and

unhappy. I want to look back and remember this as a happy time.

A big thank you to everyone before me who had the courage to be in drug trials

and to share your story with all of us. Your inspiration gave me the courage to

try AP24535 and gave me the chance at life.

Happy New Year!

Beth

[ ] Ariad Trial

 

Dear (Linscott),

Maybe everyone in the Ariad trial could post and identify themselves and we

could compare our notes. As far as I know I am doing well. As I said earlier, my

difficulties

are due to acute renal failure and all the drugs I am taking for that one

specific thing and only one for CML. Seems like it would be the other way

around. My next BMB is scheduled for February, I think. They have never said

anything about a FISH. The only one I had that I am aware of was the last time I

was in the local hospital. They said they wanted a FISH test since they took me

off the SKI drug. I never did get the results of it.

I never asked for it because I no longer go to that office and have no desire to

walk through those doors and ask for anything. Too much bad blood has passed

between us. When you lie, you have to tell another lie to cover that one up. My

mother used to say that people who lied were like cats who always buried their

litter. LOL

I went to MDADD in early November, but I didn't get my first pill until the

following week. When I was in the BMS trial, everyone was in the office to watch

me take my first pill.

This time, I was the only person there once I picked them up, so the little

ritual ended there when I took it with a bottle of water in the lobby. I could

have been drinking gin and no one would nave taken note. LOL.

In the beginning I had all sorts of things " growing " on me, so they sent me to a

doctor in infectious diseases. I did have several wing worms on my thighs. Never

had that in my life, but it is a fungus. They gave me a script for jock itch. I

checked it out to be sure and I have no " jock " . LOL They all seem to be peeling

and drying up. My alligator hyde looks like it wants to shed, so maybe I will

look more human than a reptile. LOL

I am now wearing a patch to try to stem the tide of ever increasing B/P and it

is quite often over 200, which can be worrisome. I have loads of meds to take

for it, but it only lowers it for a short while and becomes elevated again. As I

said before, I do not believe that Ariad caused any of this, because the first

week, I had none of those things.

I am on a higher does than Bobby. She is on 15 I believe and I am on 45 mg. If I

am wrong, she can set the record straight. Still she attained PCRU for the first

time in her

life after a very brief time. I think the oncologists are pretty excited about

it. I think this phase was reserved for people like me who didn't respond and

failed the other trials.

Who knows, I may be in Bobby's class soon. I think Beth had done well with

Ariad, too.

Beth, would you mind joining in here and telling us a little bit of how you came

to be in the trial and how long it took you to get to PCRU, your dosage and did

you have any side effects? I have a short memory (lol) and we have some

newcomers who might want to follow up on this amazing drug. It's a TKI, but has

a much different formula than the others. Wow, after this, Ariad will be up

there on the charts and a new leader for CML drugs. This is a very small company

compared to Bristol Myers Squibb and giant Novartis. Because of its efficacy, I

wonder what their price tag will be??????????

So here we are standing at the cusp of a new Araid club and open for anyone who

is in the trial. LOL

Carpe Diem,

Lottie Duthu

[Guest guest]

Jackie,

And so are you! I am so awed and amazed by your strength and courage and by how

well you are doing! Amazing.

You are in my thoughts daily as well....

Hugs,

Beth

Re: [ ] Ariad Trial

 

Your doing awesome Beth! I think about you all the time and it's good to read

how well you are doing. Keep on keepin on!

 

God Bless,

Jackie S.

[Guest guest]

Hi Beth.

I am so happy to hear how well you are doing on Ariad. I think that it is

wonderful that the drug is working for you. It certainly helped you avoid a

BMT.

Hi Lottie - I am glad to hear that you have positive things to say about Ariad.

I think that you might be right - Ariad might be the pill of the future for CML.

It certainly sounds like a drug that someone like Robyn (who is in Zavies 0

Club) would prefer to take instead of Gleevec. So, we will keep watching the

progress made with Ariad.

I hope that both of you continue to have positive progress with Ariad.

Sandi

>

>

>

> Hi Lottie,

>

>

>

> Thank you for remembering me! :-)

>

>

>

> I was diagnosed with CML in June 2008; " failed " Gleevec in Feb. 2009. Found to

have the T315i mutation in March 2009. My original docs wanted me to go to

transplant..even told me there were no trials available! Ended up at UCSF with

Dr. Shah and started the Ariad trial at 30mg in June 2009.

>

>

>

> At my first BMB (3 months in) I was undetectable by FISH and metaphase

analysis (I think that is the correct term.) PCR was very low. My six month PCR

showed " faintly positive. " Unfortunately, my 9 and 12 month PCR's showed a bit

of a jump, so we increased my dosage to 45mg. Also unfortunately, within a few

weeks I ended up with a burning rash over half my body--quite unpleasant!! I

took a two week holiday and started back again at 30mg. My last BMB/PCR in

October showed essentially nothing (PCR was weakly positive--meaning we know you

have CML, we saw something, but cannot quantify it, so we'll just say something

is there).

>

>

>

> Overall, I'm doing great! For the first time since diagnosis, since October

I've actually mostly felt completely normal...great energy levels almost all the

time, etc. My biggest side effect is incredibly dry skin and some tingling on

the back of my upper arms. I use Neutragena Body Oil in the shower every day and

that keeps it manageable. I also get tiny eye bleeds in my right eye about every

few weeks or so, nothing dramatic, but definitely there once in awhile. And, of

course, fatigue every once in awhile.

>

>

>

> I've really learned to live with my new normal and slow down and sleep when I

need to. One big thing that I have come to grips with is truly understanding and

accepting that there is no promise of tomorrow so I must choose to live today.

Somehow I've managed to get myself to a place where I no longer panic about what

the future will bring. I'm in a good place today and I want to enjoy the

present. I'll deal with tomorrow when it comes. If things fall apart for me, I

don't want to look back on this golden time remembering that I was worried and

unhappy. I want to look back and remember this as a happy time.

>

>

>

> A big thank you to everyone before me who had the courage to be in drug trials

and to share your story with all of us. Your inspiration gave me the courage to

try AP24535 and gave me the chance at life.

>

>

>

> Happy New Year!

>

>

>

> Beth

> [ ] Ariad Trial

>

>  

>

>

>

>

> Dear (Linscott),

>

> Maybe everyone in the Ariad trial could post and identify themselves and we

could compare our notes. As far as I know I am doing well. As I said earlier, my

difficulties

> are due to acute renal failure and all the drugs I am taking for that one

specific thing and only one for CML. Seems like it would be the other way

around. My next BMB is scheduled for February, I think. They have never said

anything about a FISH. The only one I had that I am aware of was the last time I

was in the local hospital. They said they wanted a FISH test since they took me

off the SKI drug. I never did get the results of it.

> I never asked for it because I no longer go to that office and have no desire

to walk through those doors and ask for anything. Too much bad blood has passed

between us. When you lie, you have to tell another lie to cover that one up. My

mother used to say that people who lied were like cats who always buried their

litter. LOL

>

> I went to MDADD in early November, but I didn't get my first pill until the

following week. When I was in the BMS trial, everyone was in the office to watch

me take my first pill.

> This time, I was the only person there once I picked them up, so the little

ritual ended there when I took it with a bottle of water in the lobby. I could

have been drinking gin and no one would nave taken note. LOL.

>

> In the beginning I had all sorts of things " growing " on me, so they sent me to

a doctor in infectious diseases. I did have several wing worms on my thighs.

Never had that in my life, but it is a fungus. They gave me a script for jock

itch. I checked it out to be sure and I have no " jock " . LOL They all seem to be

peeling and drying up. My alligator hyde looks like it wants to shed, so maybe I

will look more human than a reptile. LOL

>

> I am now wearing a patch to try to stem the tide of ever increasing B/P and it

is quite often over 200, which can be worrisome. I have loads of meds to take

for it, but it only lowers it for a short while and becomes elevated again. As I

said before, I do not believe that Ariad caused any of this, because the first

week, I had none of those things.

> I am on a higher does than Bobby. She is on 15 I believe and I am on 45 mg. If

I am wrong, she can set the record straight. Still she attained PCRU for the

first time in her

> life after a very brief time. I think the oncologists are pretty excited about

it. I think this phase was reserved for people like me who didn't respond and

failed the other trials.

> Who knows, I may be in Bobby's class soon. I think Beth had done well with

Ariad, too.

>

> Beth, would you mind joining in here and telling us a little bit of how you

came to be in the trial and how long it took you to get to PCRU, your dosage and

did you have any side effects? I have a short memory (lol) and we have some

newcomers who might want to follow up on this amazing drug. It's a TKI, but has

a much different formula than the others. Wow, after this, Ariad will be up

there on the charts and a new leader for CML drugs. This is a very small company

compared to Bristol Myers Squibb and giant Novartis. Because of its efficacy, I

wonder what their price tag will be??????????

> So here we are standing at the cusp of a new Araid club and open for anyone

who is in the trial. LOL

>

> Carpe Diem,

> Lottie Duthu

>

>