Re: Dec16th, OHSU Visit

[Guest guest]

I went to see Dr. Mauro for diagnosis, and it is in fact (MDS) CMML. He said I

will have to start a series of IV drugs and chemo, some of these to attempt to

target specific cells. He said it will get worse before better, 7 days in a row

of these treatments and three weeks off, then repeat 3-4 months depending on

progress and tolerance, large spleen and low HGB , may not respond as well.

Blood transfusions are needed weekly, he said we must try and stop this with

good reaction and eventual ability to produce my own. He strongly suggests

marrow transplant in 4 months,30% survival rate, but he said lots of ifs in

terms of my progress and if the VA will cover it, OMAP will not. I have VA appt.

Jan 11th in Eugene. we are trying to use Newport (17 miles from me) outpatient

treatment center and my Dr., under Dr Mauro's leadership to try and defeat this.

As he will also see me for visits in Portland (OHSU), I am fortunate to have him

to direct this drama, It

may be sad, or it may turn out to be a good story, one thing for sure is I am

ready to fight now(diagnosis) that opponent has shown himself, CMML will find

that out that I'm tougher than a two dollar steak, Happy Hollidays to all,

Oregon

________________________________

From: hey00nanc <ncogan@...>

Sent: Sun, December 6, 2009 11:11:22 AM

Subject: [ ] Re: Oregon

 

>

> Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very

hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily

and the high Wbc count is coming down slowly, but can't get it under 23,000,

unfortunatly my need for two units of O NEG has moved up to once a week in the

mean time, but the 16th gives a beacon of hope for my having a real chance to

battle back and, just see if I can't hold out long enough to see another CIVIL

WAR game like Thurs, night. Hope all is well, , in Waldport OR

> ( could you here the noise in Eugene?)

____________ _________ _

Hi Walport ,

You will really like and be impressed by Dr. Mauro. He joined Dr. Druker in the

early Gleevec days....and nice thing for you is that he is in the clinic more

days and more available, and he is in charge of some trials. All those docs

there will bang their heads together to figure out what your best plan of attack

is.

You do not have to be concerned about your white count of 23,000, that is not

much. White count is hard to control with hydrox. and it bounces up and

down.......but it sounds like the drug is also suppressing your other blood

cells, so the need for the transfusions.

Remember about looking into free and discounted rooms if you need to stay over

in Portland...in my early trial, I was put up in some pretty fancy digs (Benson

Hotel, etc). Also, the need for all this medical care right now should get you

onto SS Disability much sooner.

Now, about the Ducks! slow start, shot themselves in the foot a couple times

with the interception and the personal foul penalty....but they know how to come

back and fight and how to finish. You can be a Duck too .....this is a

battle you can do, you can use all your life experience to your advantage.

I watched at some friends house, and it is just down the road from Autzen

stadium. Yes, you can hear the roar (118 decibles in the student section). The

game against Ohio State (1-1-10) should be a good one....so that is the next one

you can cheer on. The Ducks have another weapon now with LeGarrett's big body

back in the mix.

, I will be thinking of you on Dec. 16th....and sending you my healing

wishes.

C.

[Guest guest]

You are in my prayers keep up the good fight.

Anita

________________________________

From: john laghlin <johnnyelaughlin@...>

Sent: Sun, December 20, 2009 12:04:08 AM

Subject: Re: [ ] Re: Dec16th, OHSU Visit

I went to see Dr. Mauro for diagnosis, and it is in fact (MDS) CMML. He said I

will have to start a series of IV drugs and chemo, some of these to attempt to

target specific cells. He said it will get worse before better, 7 days in a row

of these treatments and three weeks off, then repeat 3-4 months depending on

progress and tolerance, large spleen and low HGB , may not respond as well.

Blood transfusions are needed weekly, he said we must try and stop this with

good reaction and eventual ability to produce my own. He strongly suggests

marrow transplant in 4 months,30% survival rate, but he said lots of ifs in

terms of my progress and if the VA will cover it, OMAP will not. I have VA appt.

Jan 11th in Eugene. we are trying to use Newport (17 miles from me) outpatient

treatment center and my Dr., under Dr Mauro's leadership to try and defeat this.

As he will also see me for visits in Portland (OHSU), I am fortunate to have him

to direct this drama, It

may be sad, or it may turn out to be a good story, one thing for sure is I am

ready to fight now(diagnosis) that opponent has shown himself, CMML will find

that out that I'm tougher than a two dollar steak, Happy Hollidays to all,

Oregon

____________ _________ _________ __

From: hey00nanc <ncoganuoregon (DOT) edu>

groups (DOT) com

Sent: Sun, December 6, 2009 11:11:22 AM

Subject: [ ] Re: Oregon

>

> Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very

hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily

and the high Wbc count is coming down slowly, but can't get it under 23,000,

unfortunatly my need for two units of O NEG has moved up to once a week in the

mean time, but the 16th gives a beacon of hope for my having a real chance to

battle back and, just see if I can't hold out long enough to see another CIVIL

WAR game like Thurs, night. Hope all is well, , in Waldport OR

> ( could you here the noise in Eugene?)

____________ _________ _

Hi Walport ,

You will really like and be impressed by Dr. Mauro. He joined Dr. Druker in the

early Gleevec days....and nice thing for you is that he is in the clinic more

days and more available, and he is in charge of some trials. All those docs

there will bang their heads together to figure out what your best plan of attack

is.

You do not have to be concerned about your white count of 23,000, that is not

much. White count is hard to control with hydrox. and it bounces up and

down.......but it sounds like the drug is also suppressing your other blood

cells, so the need for the transfusions.

Remember about looking into free and discounted rooms if you need to stay over

in Portland...in my early trial, I was put up in some pretty fancy digs (Benson

Hotel, etc). Also, the need for all this medical care right now should get you

onto SS Disability much sooner.

Now, about the Ducks! slow start, shot themselves in the foot a couple times

with the interception and the personal foul penalty....but they know how to come

back and fight and how to finish. You can be a Duck too .....this is a

battle you can do, you can use all your life experience to your advantage.

I watched at some friends house, and it is just down the road from Autzen

stadium. Yes, you can hear the roar (118 decibles in the student section). The

game against Ohio State (1-1-10) should be a good one....so that is the next one

you can cheer on. The Ducks have another weapon now with LeGarrett's big body

back in the mix.

, I will be thinking of you on Dec. 16th....and sending you my healing

wishes.

C.

[Guest guest]

>

> I went to see Dr. Mauro for diagnosis, and it is in fact (MDS) CMML. He said I

will have to start a series of IV drugs and chemo, some of these to attempt to

target specific cells. He said it will get worse before better, 7 days in a row

of these treatments and three weeks off, then repeat 3-4 months depending on

progress and tolerance, large spleen and low HGB , may not respond as well.

Blood transfusions are needed weekly, he said we must try and stop this with

good reaction and eventual ability to produce my own. He strongly suggests

marrow transplant in 4 months,30% survival rate, but he said lots of ifs in

terms of my progress and if the VA will cover it, OMAP will not. I have VA appt.

Jan 11th in Eugene. we are trying to use Newport (17 miles from me) outpatient

treatment center and my Dr., under Dr Mauro's leadership to try and defeat this.

As he will also see me for visits in Portland (OHSU), I am fortunate to have him

to direct this drama, It

> may be sad, or it may turn out to be a good story, one thing for sure is I am

ready to fight now(diagnosis) that opponent has shown himself, CMML will find

that out that I'm tougher than a two dollar steak, Happy Hollidays to all,

Oregon

-----------------------------

Hi ,

I was thinking of you mid-week.

The first step is to know who the opponent is.....and now that has been defined

for you. The next step is to have a treatment plan and someone skilled to direct

it....and you have that. And for you, the next step is 'to believe that it can

happen'. If 30% can survive a transplant, why not you!! Someone has to be in

that 30%. Jeannie s, from Medford, was in cml blast crisis when she had

her transplant and her odds were about as low....and she is now a 7 year

survivor of her transplant. I can tell by your letter that you are a tough guy,

that you know how to fight for what you want.....we are all behind you .

And about the 2 Oregon schools bowl games....OSU is on Tues and they have a good

fight ahead........then the DUCKS, I am betting that they will make us proud on

New Year's Day. Use all the positive energy around you and in your life to slay

this dragon.

My healing wishes and prayers,

C.

[Guest guest]

Dear C., Thankyou so much for all the information and kind words and

support you have given me and others. You are dead on about the drug company

policies. You always are so informative and sincere and have guided me while I

had little clear vision or much hope at times. Right from the begining you

welcomed me without any pre judgements, when I knew something was really wrong

and filed disability as a back up you didn't tell me I can't even consider it

for a year and go into a story of how you sucked it up and that i should be more

positive. I was in tune with my always reliable and healthy body, I knew

something was very wrong and you sugested I file, and i did. I should get

approved very soon, with my diagnosis it may be a very long road back. But

thanks to not underestimating others intelligence, and realizing circumstances

are different for each and every one of us, I commend you on having supported me

unconditionally right from the begining.

You have helped me by just flat out caring with no preconceived notions on how

I should feel about taking or needing help. I am a proud person and not working

has been very hard on me. Thankyou for all of your guidance, it has been very

accurate and nicely said, a lot of the things you have been thru have molded you

into who you are, and  that person (you) has given hope , to someone that

didn't have a whole lot at times. Thanks for your guidance and true compassion,

I given the oppertunity, will do the same, thankyou. Poors beavs, Go Ducks!

 

________________________________

From: hey00nanc <ncogan@...>

Sent: Sun, December 20, 2009 10:36:30 AM

Subject: [ ] Re: Dec16th, OHSU Visit

 

>

> I went to see Dr. Mauro for diagnosis, and it is in fact (MDS) CMML. He said I

will have to start a series of IV drugs and chemo, some of these to attempt to

target specific cells. He said it will get worse before better, 7 days in a row

of these treatments and three weeks off, then repeat 3-4 months depending on

progress and tolerance, large spleen and low HGB , may not respond as well.

Blood transfusions are needed weekly, he said we must try and stop this with

good reaction and eventual ability to produce my own. He strongly suggests

marrow transplant in 4 months,30% survival rate, but he said lots of ifs

in terms of my progress and if the VA will cover it, OMAP will not. I have VA

appt. Jan 11th in Eugene. we are trying to use Newport (17 miles from me)

outpatient treatment center and my Dr., under Dr Mauro's leadership to try and

defeat this. As he will also see me for visits in Portland (OHSU), I am

fortunate to have him to direct this

drama, It

> may be sad, or it may turn out to be a good story, one thing for sure is I am

ready to fight now(diagnosis) that opponent has shown himself, CMML will find

that out that I'm tougher than a two dollar steak, Happy Hollidays to all,

Oregon

------------ --------- --------

Hi ,

I was thinking of you mid-week.

The first step is to know who the opponent is.....and now that has been defined

for you. The next step is to have a treatment plan and someone skilled to direct

it....and you have that. And for you, the next step is 'to believe that it can

happen'. If 30% can survive a transplant, why not you!! Someone has to be in

that 30%. Jeannie s, from Medford, was in cml blast crisis when she had

her transplant and her odds were about as low....and she is now a 7 year

survivor of her transplant. I can tell by your letter that you are a tough guy,

that you know how to fight for what you want.....we are all behind you .

And about the 2 Oregon schools bowl games....OSU is on Tues and they have a good

fight ahead....... .then the DUCKS, I am betting that they will make us proud on

New Year's Day. Use all the positive energy around you and in your life to slay

this dragon.

My healing wishes and prayers,

C.