Re: BMT/ Me2

[Guest guest]

Marcos-

Thanks.I will try to make an order form. So you guys

can order- Me2 tees . The Warrior shirts are free for

my cml family but if you want to either donate a shirt

for a child in hospital or get one for a friend/family

that would be tooo cool.

Chi

--- Marcos Perreau Guimaraes

<montereyunderwater@...> wrote:

> Hi China,

> I have also some left side/shoulder pain once in a

> while this last 3

> years, even now I am PCRU. I mentioned it to the dr

> a few times and he

> wasn't too concerned, although he did check it up.

> Pretty much

> everything from toes to head on my left side got

> broken or cut at one

> point or another, and my left shoulder is not so

> good, what probably

> doesn't help.

> You certainly should tell it to your dr, but no

> reason to panic. Could

> be a lot of things, like gas (mild aerophagia), gall

> bladder duct

> getting irritated by the gleevec, etc. Good post by

> the way, and yes I

> want a t-shirt although I can contribute

> something, it doesn't have

> to be free. Size large for me. Thanks a lot,

> Take care,

> Marcos.

>

>

> On Mon, Mar 24, 2008 at 7:30 PM, china neal

> <chimera46@...> wrote:

> >

> >

> >

> >

> > Fellow Warriors-

> >

> > Thank goodness we are all so passionate about our

> > friend,our disease. It is complacency that would

> kill

> > us. The journey is a private one when it comes

> down to

> > it- we each make our own decision- what is right

> for

> > one may not be right for another. But life

> decisions

> > should be made with as much information as

> possible.

> > I love my Hem/Onc but I know he is learning with

> me.

> > He is not afraid to consult or do research. He was

> > not offended when I told him I asked Dr. Druker a

> > question. The advice on the posts is priceless

> from

> > those who have survived and are doing more than

> > surviving many are even thriving.The technology of

> CML

> > meds is evolving daily. I love that we can be so

> real

> > with each other with all of are various pains cml

> > quirks.

> >

> > We are family- we may not always agree brothers

> and

> > sisters but we are bound by our blood . By the way

> if

> > I may complain. I feel like crap. Pain in my left

> > side and right shoulder- different from the

> usually

> > cramps and bone pain.Night sweats again. I'm

> supposed

> > to be in remission but this doesn't feel good. I

> > switched from four 100 mg to one 400mg gleevec

> because

> > I heard it was easier on the stomach. Now I'm

> > wondering if I made a mistake. I'm feeling sort of

> > paranoid- noticed a dark spot on my tongue today.

> I

> > don't want to see cancer hiding in every nook and

> > cranny of my body but... I know we are susceptible

> to

> > secondary cancers and I have an almost 14 year old

> to

> > raise.

> >

> > On a more positive note- I am having T- shirts

> printed

> > as a fundraiser first for LLS and then for other

> > cancer research with the logo- ME 2. It answers

> the

> > question- Has Cancer impacted your life? well- Me

> too.

> > I figure I should be able to sell a shirt to

> everyone

> > in the world. The first shipment say- Warrior or

> > Family or Friend. I'm donating Warrior shirts to

> > children's hospitals- my goal is that every child

> > diagnosed with cancer will leave the hospital with

> a

> > warrior shirt. I will send a FREE Warrior shirt to

> > anyone on this post if you send me your T shirt

> size

> > and where tos end it.Eventually - I will make

> > shirts/hats/sweatshirts that say- Cure, Survivor,

> > Thriving- well you get the picture. 100% of the

> > profits will go to Cancer Foundations.

> >

> > Love to you all. We are all on the same side- we

> are

> > family.

> >

> > --- Marcos Perreau Guimaraes

> >

> >

> > <montereyunderwater@...> wrote:

> >

> > > Hi Therese,

> > > I wasn't thinking you chose a BMT without

> reasons,

> > > you mentioned

> > > gleevec stopped working and I can understand you

> had

> > > some tough

> > > decisions to make, and BMT was certainly a

> sensible

> > > option at that

> > > point, I am sincerely glad you did well with it

> and

> > > I can only imagine

> > > you had some really rough time and lot of

> courage to

> > > pull through. I

> > > never suggested you take it as a game, sorry if

> it

> > > sounded that way,

> > > it was just about taking sides, and we sometime

> tend

> > > to take sides

> > > even when it is not a game. Well, before being a

> cml

> > > warrior, I have

> > > been a soldier, I guess I did that too . My

> point

> > > was that the ones

> > > who talked about other options weren't just

> trying

> > > to scare marry just

> > > because we don't like BMT, I got HLA tested with

> my

> > > brother in case

> > > of. But just after dx it is not so easy to stay

> calm

> > > and read about

> > > cml, it was a scary time for all of us, and we

> > > wanted marry to take

> > > more time to think about options and not to rush

> > > into following the

> > > first advice from the first oncologist she saw.

> As I

> > > mentioned on

> > > another post, cml is a rare condition and most

> > > oncologists have little

> > > experience with cml patients. I hope I clarified

> my

> > > previous post and

> > > I apologize if you felt offended, and wish

> sincerely

> > > you are not

> > > pissed at me anymore

> > > Cheers,

> > > Marcos.

> > >

> > > On Mon, Mar 24, 2008 at 6:30 AM, Therese Stone

> > > <kidme2003@...> wrote:

> > > >

> > > >

> > > >

> > > >

> > > > Hey Marcos:

> > > >

> > > > It takes a tremendous amount of planning and

> dx to

> > > make any decision

> > > > regarding your medical care. I do not consider

> > > what any one of us are going

> > > > through " a game " . I am giving my opinion on my

> > > experiences with my treatment

> > > > of CML.

> > > >

> > > > I payed my dues to all of this and have

> experience

> > > to share with those that

> > > > might be backed into the corner I was in. As

> far

> > > as treatment for the CML my

> > > > options were getting very limited. I decided

> not

> > > to wait to blast crisis

> > > > before the latest and greatest trial came

> along. I

> > > needed to take action. My

> > > > CML was past wait and see stage.

> > > >

> > > > The doctors I see all agreed it was time to

> > > consider a transplant. After 14

>

=== message truncated ===

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[Guest guest]

Chi, I'm looking forward to this. Please add a spot on the form with

price to donate. This is wonderful!

Take care,

Zazzy

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Hey Marcos:

> > > > >

> > > > > It takes a tremendous amount of planning and

> > dx to

> > > > make any decision

> > > > > regarding your medical care. I do not consider

> > > > what any one of us are going

> > > > > through " a game " . I am giving my opinion on my

> > > > experiences with my treatment

> > > > > of CML.

> > > > >

> > > > > I payed my dues to all of this and have

> > experience

> > > > to share with those that

> > > > > might be backed into the corner I was in. As

> > far

> > > > as treatment for the CML my

> > > > > options were getting very limited. I decided

> > not

> > > > to wait to blast crisis

> > > > > before the latest and greatest trial came

> > along. I

> > > > needed to take action. My

> > > > > CML was past wait and see stage.

> > > > >

> > > > > The doctors I see all agreed it was time to

> > > > consider a transplant. After 14

> >

> === message truncated ===

>

>

>

>

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> know-it-all with Mobile. Try it now.

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>