Re: Visit with OHSU regarding Ariad trial

[Guest guest]

Hi Hans,

Welcome to the Ariad Team! :-) We had a nickname over the summer, but I can't

remember what it was. I specifically came to check my e-mail to see if you had

either posted or sent me an e-mail. I've been thinking about you! So glad to

hear that this option is open to you! I think you will find you are able to

spend more time at home than you think that first month and the time will fly

by. Good luck!

I had my monthly appt. today. Labs are normal, heart is beating, etc. so Life Is

Good. I did meet with the transplant coordinator at UCSF " just in case " I need

it down the road, but I remain very optimistic I won't need it. Again, it is

just my swinging on the 'ole trapeze of life with a safety net.

Take care my CML friend! :-)

Beth

[ ] Visit with OHSU regarding Ariad trial

 

Hi all,

First of all I'd like to thank everyone that gave me some great feedback and

food for thought.

I visited with Dr. Deininger yesterday, and brought along my good friend Tyler

who had a BMT back in January. Tyler and I have actually known each other for

almost 10 years, so it's a mixed blessing having such a close friend who has

gone through it, although I wish he never would have had to go through the

procedure.

The net of it, is that I appear to be a good candidate for the study. He

discussed the risks associated with it, and we went over in detail my options

and what each drug may potentially hold for me. For example, upping my dosage on

Sprycel may just push my numbers too low with limited results.

So, given that I'm only 10 months since Diagnosis, Ariad may be a good fit. What

is unknown, that since I haven't had any mutations show up on my report, we

don't know what to expect. He didn't know of any specific patient that fit my

profile exactly, that had a benefit, but I am willing to take this chance

anyway.

My CBC's are rock steady (a little low if anything) and I am feeling great, so I

want to at least give this study a 3 month trial to see if we can get some

cytogentic response. Since I would be entering the trial 'later' in the game, I

would most likely start on 60 mg. They are currently evaluating going to 75 mg I

believe for those in the first wave.

So I would be a Portland resident for a month, but luckily the hospital is only

193 miles from our house, so I would be able to run up on day's off to see the

family. The hardest is going to be away from my wife, and 2 little boys (3 year

old and 7 month old).

A special thanks to Beth, who posted her results and made me even aware that

there was another option out there on the table. Without here I'd be knee deep

in transplant discussions right now.

And Bobby, I shared your results with him, and his eyes lit up when he heard

your good results. You could tell he was happy for you and very encouraged with

the drug results.

We are going to continue lining up a donor, just in case. We are going down the

route of getting my sisters tested, and if they are not a match, we hope that

out of the 115 that are 6/6 match on the bone marrow registry, there will an

even better match among them.

Thanks again for all the insight, I look forward to continue to both learn from

everyone, and share my experience to hopefully benefit others who are in a

similar situation.

Regards,

Hans

12/2008 Diagnosed - Put on 400 mg Gleevec (20/20, 198/200, 15 pcr)

06/2009 6 Month BMA - (20/20, 150/200, 7 pcr) - Put on 100 mg Sprycel, no

mtuations

09/2009 3 month BMA on Sprycel - (19/20, same fish/PCR)

[Guest guest]

Hi Hans,

You will do great on Ariad. It's a good drug with no side effects, except low

blood counts. And as Beth said, transplant is the Ace.  You are young and have a

lot of life ahead of you with those beautiful children. How fun!!

God Bless,

Jackie S.

Ariad (6/13/09 ( I think)

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

Subject: Re: [ ] Visit with OHSU regarding Ariad trial

Date: Wednesday, October 7, 2009, 6:31 PM

 

Hi Hans,

Welcome to the Ariad Team! :-) We had a nickname over the summer, but I can't

remember what it was. I specifically came to check my e-mail to see if you had

either posted or sent me an e-mail. I've been thinking about you! So glad to

hear that this option is open to you! I think you will find you are able to

spend more time at home than you think that first month and the time will fly

by. Good luck!

I had my monthly appt. today. Labs are normal, heart is beating, etc. so Life Is

Good. I did meet with the transplant coordinator at UCSF " just in case " I need

it down the road, but I remain very optimistic I won't need it. Again, it is

just my swinging on the 'ole trapeze of life with a safety net.

Take care my CML friend! :-)

Beth

[ ] Visit with OHSU regarding Ariad trial

 

Hi all,

First of all I'd like to thank everyone that gave me some great feedback and

food for thought.

I visited with Dr. Deininger yesterday, and brought along my good friend Tyler

who had a BMT back in January. Tyler and I have actually known each other for

almost 10 years, so it's a mixed blessing having such a close friend who has

gone through it, although I wish he never would have had to go through the

procedure.

The net of it, is that I appear to be a good candidate for the study. He

discussed the risks associated with it, and we went over in detail my options

and what each drug may potentially hold for me. For example, upping my dosage on

Sprycel may just push my numbers too low with limited results.

So, given that I'm only 10 months since Diagnosis, Ariad may be a good fit. What

is unknown, that since I haven't had any mutations show up on my report, we

don't know what to expect. He didn't know of any specific patient that fit my

profile exactly, that had a benefit, but I am willing to take this chance

anyway.

My CBC's are rock steady (a little low if anything) and I am feeling great, so I

want to at least give this study a 3 month trial to see if we can get some

cytogentic response. Since I would be entering the trial 'later' in the game, I

would most likely start on 60 mg. They are currently evaluating going to 75 mg I

believe for those in the first wave.

So I would be a Portland resident for a month, but luckily the hospital is only

193 miles from our house, so I would be able to run up on day's off to see the

family. The hardest is going to be away from my wife, and 2 little boys (3 year

old and 7 month old).

A special thanks to Beth, who posted her results and made me even aware that

there was another option out there on the table. Without here I'd be knee deep

in transplant discussions right now.

And Bobby, I shared your results with him, and his eyes lit up when he heard

your good results. You could tell he was happy for you and very encouraged with

the drug results.

We are going to continue lining up a donor, just in case. We are going down the

route of getting my sisters tested, and if they are not a match, we hope that

out of the 115 that are 6/6 match on the bone marrow registry, there will an

even better match among them.

Thanks again for all the insight, I look forward to continue to both learn from

everyone, and share my experience to hopefully benefit others who are in a

similar situation.

Regards,

Hans

12/2008 Diagnosed - Put on 400 mg Gleevec (20/20, 198/200, 15 pcr)

06/2009 6 Month BMA - (20/20, 150/200, 7 pcr) - Put on 100 mg Sprycel, no

mtuations

09/2009 3 month BMA on Sprycel - (19/20, same fish/PCR)