RE: BMT and other Questions

[Guest guest]

Hi Neil,

I have doctors at Cedars too. Dr. Lim is mine. I am actually in almost

the same position. My PCR went up and on the 17th I have to re-take to

see if the chemo stopped. I know Dr. Lim is very good with me. Please

keep me updated on your progress as I may be going down the same

road...

Chemo-Sabi

Romero

28 year old male in Santa , California

DX-10.22.09

Hydroxeuya-10.22.09-10.29.09

Gleevec 400MG-10.29.09-11.06.09

Gleevec Reduction 200MG-11.06.09-01.04.10

Gleevec increase 300MG-01.05.10-01.13.10

BCR-ABL-126% or 0.2637

0.6 Log Reduction 02.05.10

Gleevec increase 400MG 01.14.10-Present

1.8 Log Reduction 06.12.10

From: [mailto: ] On Behalf Of

Neal

Sent: Thursday, September 02, 2010 9:43 AM

Subject: [ ] BMT and other Questions

Hi,

It's been a while since I've posted.

Yesterday was full of surprises. A baby girl was born to some good

friends

of ours. We found out my wife is pregnant with our third. My oncologist

gave

us the news that my PCR went up and a mutation was detected.

Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist.

They

are thinking that I may be a candidate for a BMT. Does anyone here have

any

advice for me? Is it as bad as it sounds?

Also, does anyone have any experience dealing with SSI? We blew through

our

savings when I was on State Disability Insurance last year, and I don't

think we can make it through another 6 months out of work without a

little

help from the Feds.

-Neal

[Guest guest]

Neal, what drug are you on, and have you exhausted all of them?  Gleevec?

Sprycel?  Tasigna? The phase 2 of Ariad trial is coming up in Oct. I think, is

your dr. familiar with Ariad?  bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Romero, <ryan.romero@...>

Subject: RE: [ ] BMT and other Questions

Cc: " Carlyle, Jenifer " <jenifer.carlyle@...>

Date: Wednesday, September 1, 2010, 12:51 PM

 

Hi Neil,

I have doctors at Cedars too. Dr. Lim is mine. I am actually in almost

the same position. My PCR went up and on the 17th I have to re-take to

see if the chemo stopped. I know Dr. Lim is very good with me. Please

keep me updated on your progress as I may be going down the same

road...

Chemo-Sabi

Romero

28 year old male in Santa , California

DX-10.22.09

Hydroxeuya-10.22.09-10.29.09

Gleevec 400MG-10.29.09-11.06.09

Gleevec Reduction 200MG-11.06.09-01.04.10

Gleevec increase 300MG-01.05.10-01.13.10

BCR-ABL-126% or 0.2637

0.6 Log Reduction 02.05.10

Gleevec increase 400MG 01.14.10-Present

1.8 Log Reduction 06.12.10

From: [mailto: ] On Behalf Of

Neal

Sent: Thursday, September 02, 2010 9:43 AM

Subject: [ ] BMT and other Questions

Hi,

It's been a while since I've posted.

Yesterday was full of surprises. A baby girl was born to some good

friends

of ours. We found out my wife is pregnant with our third. My oncologist

gave

us the news that my PCR went up and a mutation was detected.

Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist.

They

are thinking that I may be a candidate for a BMT. Does anyone here have

any

advice for me? Is it as bad as it sounds?

Also, does anyone have any experience dealing with SSI? We blew through

our

savings when I was on State Disability Insurance last year, and I don't

think we can make it through another 6 months out of work without a

little

help from the Feds.

-Neal

[Guest guest]

Hi Neal: First let me say that that is great news about your new addition that

will join your family. As for a BMT, talk to your Oncologist about trying some

other form of treatment first. I would exhaust all alternatives first before

considering a BMT. I was very blessed to be able to wait for Gleevec to go into

clinical trial when they were looking for a match for me for a BMT back in 1999.

I have done well on Gleevec since 2000. I see a lot of people doing very good

on the ARIAD Trial.

You should have no problem getting SSI,because of your status right now. You

are in the middle of trying to find a new form of treatment. I would apply for

it, and even if you get denied you have to appeal. Sometimes they will deny

twice before you can get it.

You have to let them know you cannot function on a job, and let them know you

are looking into a BMT. I would also recommend using a lawyer that works with

SSI patients. They do get a percentage, bu in the long run you get your

benefits. Hope this helps a little bit.

>

> Hi,

>

> It's been a while since I've posted.

>

> Yesterday was full of surprises. A baby girl was born to some good friends

> of ours. We found out my wife is pregnant with our third. My oncologist gave

> us the news that my PCR went up and a mutation was detected.

>

> Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist. They

> are thinking that I may be a candidate for a BMT. Does anyone here have any

> advice for me? Is it as bad as it sounds?

>

> Also, does anyone have any experience dealing with SSI? We blew through our

> savings when I was on State Disability Insurance last year, and I don't

> think we can make it through another 6 months out of work without a little

> help from the Feds.

>

> -Neal

>

[Guest guest]

Neal,

I am and my 20 yo daughter had a BMT August 10th last month for

CML. Her CML was showing signs of no longer being responsive to gleevic or the

other meds, but mostly gleevic. She has come through it magnificantly so far.

I don't know if going into it if I had ever had such a high level of anxiety in

my life, but fortunately so far our worst fears have not been realized. The

doctors planned to release her to the Mc house yesterday, but at

the last minute her left eye got swollen and puffy until it was closed. The

docs are keeping her for at least another week. They are not sure why this

happened. By last night it started going down and when I talked to she

thinks she might have given herself a black eye by rubbing it because it itched.

It all happened in a short period of time. She took a morning nap and when she

woke up an hour later is when it happened. When she was on the chemo she was

miserable and mostly slept. The have various medications that combat most all

of the unpleasant side effects and when she was asleep she was at least at rest.

She is bald now, but I am so proud of her because she lifts the spirits of those

around her. With the eye thing yesterday I said she must look like a pirate and

she said it was more like Quasi Moto. I wanted to sign her head like a cast,

but she wont let me, I just don't understand. The restrictions she will be on

after she gets to leave the hospital are pretty extensive, no public indoor

places, no shopping, no milk, wear the mask near construction sites, etc etc.

The restrictions are in place for about a year. The doctors are extremely happy

with her progress and said it may be some sort of record her recovery, but they

indicate that her recovery may be from havine a very close sibling match. There

are also some potential long term consequences of the high doses of the chemo,

but with the reading I have done on BMT, but most people that have a BMT say

their quality of life improved afterwards. I know this is pretty long winded,

which is unusual for me, but I have been witnessing a BMT process over the past

30 days. Something else is when the bone marrow was going in it is done through

an IV into her hickman and they monitored her blood pressure very close because

adding all that bone marrow into the blood stream increases the volume of fluid

in the blood stream. If you go through with the process when they hook up all

the lines for the fluids/medications that will be going into your body you will

look like one of those over loaded outlets with all the Christmas wires plugged

into it that you hear about. Also when she was feeling the most miserable and

not eating they give her TPN. Total parental nutrients through the IV so you

will still be gettng essential vitamins.

I wish you great luck with your decision and prognosis.

>

> Hi,

>

> It's been a while since I've posted.

>

> Yesterday was full of surprises. A baby girl was born to some good friends

> of ours. We found out my wife is pregnant with our third. My oncologist gave

> us the news that my PCR went up and a mutation was detected.

>

> Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist. They

> are thinking that I may be a candidate for a BMT. Does anyone here have any

> advice for me? Is it as bad as it sounds?

>

> Also, does anyone have any experience dealing with SSI? We blew through our

> savings when I was on State Disability Insurance last year, and I don't

> think we can make it through another 6 months out of work without a little

> help from the Feds.

>

> -Neal

>

[Guest guest]

Small world. I'll be seeing Dr Lim as well.

I'll keep you up to date.

[ ] BMT and other Questions

Hi,

It's been a while since I've posted.

Yesterday was full of surprises. A baby girl was born to some good

friends

of ours. We found out my wife is pregnant with our third. My oncologist

gave

us the news that my PCR went up and a mutation was detected.

Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist.

They

are thinking that I may be a candidate for a BMT. Does anyone here have

any

advice for me? Is it as bad as it sounds?

Also, does anyone have any experience dealing with SSI? We blew through

our

savings when I was on State Disability Insurance last year, and I don't

think we can make it through another 6 months out of work without a

little

help from the Feds.

-Neal

[Guest guest]

I am on Sprycel. Gleevec was too harsh on the side effects.

I'm not sure what this doctor is familiar with. I've only seen him once,

when I was switched to Sprycel.

[ ] BMT and other Questions

Hi,

It's been a while since I've posted.

Yesterday was full of surprises. A baby girl was born to some good

friends

of ours. We found out my wife is pregnant with our third. My oncologist

gave

us the news that my PCR went up and a mutation was detected.

Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist.

They

are thinking that I may be a candidate for a BMT. Does anyone here have

any

advice for me? Is it as bad as it sounds?

Also, does anyone have any experience dealing with SSI? We blew through

our

savings when I was on State Disability Insurance last year, and I don't

think we can make it through another 6 months out of work without a

little

help from the Feds.

-Neal