Re: Longing4sunNsand-Robin

[Guest guest]

Hi Robin,

In " the old days " myelofibrosis was almost an inevitable part of CML

progression as Interferon didn't help much to prevent it but today we

have Gleevec which has been shown not only to prevent myelofibrosis

but also reverse it.

http://www3.interscience.wiley.com/journal/108567990/abstract

Tracey

>

>

> Hi to all,

> My name is Robin, I'm a 51 yr. old female from Indiana. I was

> diagnosed 2/12/09.

> Debbie, I'm sorry to hear about all the pain issues that you

> have. I only have pain in a few places so I can't image what it's

like

> for you. My first symptoms were pain in my legs & tailbone. I went

for

> an MRI, they found abnormal marrow then I was sent to an Onc. He did

> blood tests (white counts 141,000), tried a BMB but it was a dry

tap.

> He did get plenty of bone though, still sore... I do work but I cut

> down to part-time a few mths. ago. I have pain issues but I seem to

> manage fine with just Advil. I asked my Onc if CML causes bone pain

> and he said it can. He said the marrow is so over-crowded it can

cause

> pressure on the bone. (This is my laymans interpretation of his

> explanation). He said that hopefully..., when blood counts get

evened

> out, the pain will get better. I don't know if that is his speech he

> gives to all his new patients or not. Maybe some of the other CML

> posters can give us an opinion to that.

> I have another question for the posters. I have scar tissue in

the

> marrow, does that mean I have Myelofibrosis?

>

[Guest guest]

Hi Robin,

I had also very strong joint/bone pain at the beginning but it went

completely away after 2/3 weeks. I am nearing my 4th anniversary and

doing pretty good on all counts. Hang in there, things will get a lot

better.

Marcos.

On Thu, Feb 26, 2009 at 12:35 PM, longing4sunnsand <rjkjak76@...> wrote:

>

> Hi to all,

> My name is Robin, I'm a 51 yr. old female from Indiana. I was

> diagnosed 2/12/09.

> Debbie, I'm sorry to hear about all the pain issues that you

> have. I only have pain in a few places so I can't image what it's like

> for you. My first symptoms were pain in my legs & tailbone. I went for

> an MRI, they found abnormal marrow then I was sent to an Onc. He did

> blood tests (white counts 141,000), tried a BMB but it was a dry tap.

> He did get plenty of bone though, still sore... I do work but I cut

> down to part-time a few mths. ago. I have pain issues but I seem to

> manage fine with just Advil. I asked my Onc if CML causes bone pain

> and he said it can. He said the marrow is so over-crowded it can cause

> pressure on the bone. (This is my laymans interpretation of his

> explanation). He said that hopefully..., when blood counts get evened

> out, the pain will get better. I don't know if that is his speech he

> gives to all his new patients or not. Maybe some of the other CML

> posters can give us an opinion to that.

> I have another question for the posters. I have scar tissue in the

> marrow, does that mean I have Myelofibrosis?

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

Thanks for the ray of hope!

> >

> > Hi to all,

> > My name is Robin, I'm a 51 yr. old female from Indiana. I was

> > diagnosed 2/12/09.

> > Debbie, I'm sorry to hear about all the pain issues that you

> > have. I only have pain in a few places so I can't image what it's like

> > for you. My first symptoms were pain in my legs & tailbone. I went for

> > an MRI, they found abnormal marrow then I was sent to an Onc. He did

> > blood tests (white counts 141,000), tried a BMB but it was a dry tap.

> > He did get plenty of bone though, still sore... I do work but I cut

> > down to part-time a few mths. ago. I have pain issues but I seem to

> > manage fine with just Advil. I asked my Onc if CML causes bone pain

> > and he said it can. He said the marrow is so over-crowded it can cause

> > pressure on the bone. (This is my laymans interpretation of his

> > explanation). He said that hopefully..., when blood counts get evened

> > out, the pain will get better. I don't know if that is his speech he

> > gives to all his new patients or not. Maybe some of the other CML

> > posters can give us an opinion to that.

> > I have another question for the posters. I have scar tissue in the

> > marrow, does that mean I have Myelofibrosis?

> >

> >

>

>

>

> --

> Marcos Perreau Guimaraes

> Suppes Brain Lab

> Ventura Hall - CSLI

> Stanford University

> 220 Panama street

> Stanford CA 94305-4101

> 650 614 2305

> 650 468 9926 (cell)

> marcospg@...

> montereyunderwater@...

> www.stanford.edu/~marcospg/

>

[Guest guest]

Thanks Tracey, that sounds promising!

> >

> >

> > Hi to all,

> > My name is Robin, I'm a 51 yr. old female from Indiana. I was

> > diagnosed 2/12/09.

> > Debbie, I'm sorry to hear about all the pain issues that you

> > have. I only have pain in a few places so I can't image what it's

> like

> > for you. My first symptoms were pain in my legs & tailbone. I went

> for

> > an MRI, they found abnormal marrow then I was sent to an Onc. He did

> > blood tests (white counts 141,000), tried a BMB but it was a dry

> tap.

> > He did get plenty of bone though, still sore... I do work but I cut

> > down to part-time a few mths. ago. I have pain issues but I seem to

> > manage fine with just Advil. I asked my Onc if CML causes bone pain

> > and he said it can. He said the marrow is so over-crowded it can

> cause

> > pressure on the bone. (This is my laymans interpretation of his

> > explanation). He said that hopefully..., when blood counts get

> evened

> > out, the pain will get better. I don't know if that is his speech he

> > gives to all his new patients or not. Maybe some of the other CML

> > posters can give us an opinion to that.

> > I have another question for the posters. I have scar tissue in

> the

> > marrow, does that mean I have Myelofibrosis?

> >

>