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" *mary* " <mmgrave-@...> wrote:

original article:tae-bo_on/?start=14912

> Well the weekly weigh in: 158.5 (1.5 pound loss) and this is in

spite if

> it being the TOM. Last month I gained like 3 pounds that weekend...so

I am

> really happy about still losing weight in spite of that! I didn't

take any

> measurments yet, mostly because usually we do that on Friday nights

and we

> had friends over and we all got drunk ( Ok I didn't I only had 3

> beers...lol)

>

>

>

WAY TO GO, MARY!!!!

Susi

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Yea, ! Congratulations!

;-)

" *mary* " <mmgrave-@...> wrote:

original article:tae-bo_on/?start=14912

> Well the weekly weigh in: 158.5 (1.5 pound loss) and this is in

spite if

> it being the TOM. Last month I gained like 3 pounds that weekend...so

I am

> really happy about still losing weight in spite of that! I didn't

take any

> measurments yet, mostly because usually we do that on Friday nights

and we

> had friends over and we all got drunk ( Ok I didn't I only had 3

> beers...lol)

>

>

>

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  • 8 years later...

Greetings to my support group,

Many thanks for all the news, encouragement, and laughs. Brightens my day and

keeps me up to date on the latest. You are all great.

In early September had the first PCR since the DX in April. Result: 3.6, which

according to my hemonc is progress, but not fast enough...so have now started

600 mg Gleevec, rather than the 400mg since early May. Just when I thought I

had the side effects licked (except the muscle pain when I am tired), now I feel

as if I am going through it all again. Muscle and joint pains are worse, my left

eye leaks tears, the GI stuff is a little worse, and I am tired. Maybe I'll even

have some more of those magnificent eye bleeds I had this summer! At least I

haven't gained much weight (any more than I can blame on chocolate alone). I

assume it will just take some time to readjust.

The 6-month BMB/BMA is scheduled for the end of next week. Based on my own small

experience (the first BMB in April), this is nothing compared to, for example, a

tooth abscess in terms of pain and bother. Didn't take long, and the worst part

was the bruised feeling afterward. I expect this one to be similar.

Now if I could just finish my dissertation....sigh. No wonder most people do

graduate school when they are young, not as a late career adventure (I'm 59).

Martha B

dx April 2008

hydroxyurea and allopurinol to good blood counts in May

Gleevec 400mg May 2008

Gleevec 600mg October 2008

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Hi Martha,

Do you know if your 3.6 PCR result is a log reduction or an actual

number or perhaps maybe a percentage? If it's a log reduction then

I'd say you've made terrific progress. Anything over 3 logs is gravy

and if it were me, I wouldn't increase my dose with results this good.

Take care,

Tracey

>

> Greetings to my support group,

>

> Many thanks for all the news, encouragement, and laughs. Brightens

my day and keeps me up to date on the latest. You are all great.

>

> In early September had the first PCR since the DX in April. Result:

3.6, which according to my hemonc is progress, but not fast

enough...so have now started 600 mg Gleevec, rather than the 400mg

since early May. Just when I thought I had the side effects licked

(except the muscle pain when I am tired), now I feel as if I am going

through it all again. Muscle and joint pains are worse, my left eye

leaks tears, the GI stuff is a little worse, and I am tired. Maybe

I'll even have some more of those magnificent eye bleeds I had this

summer! At least I haven't gained much weight (any more than I can

blame on chocolate alone). I assume it will just take some time to

readjust.

>

> The 6-month BMB/BMA is scheduled for the end of next week. Based on

my own small experience (the first BMB in April), this is nothing

compared to, for example, a tooth abscess in terms of pain and

bother. Didn't take long, and the worst part was the bruised feeling

afterward. I expect this one to be similar.

>

> Now if I could just finish my dissertation....sigh. No wonder most

people do graduate school when they are young, not as a late career

adventure (I'm 59).

>

> Martha B

> dx April 2008

> hydroxyurea and allopurinol to good blood counts in May

> Gleevec 400mg May 2008

> Gleevec 600mg October 2008

>

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Martha

I have been on 600mg since being DX and at present PCRU

Teary eyes - now have gone however had these for a year.

Had terrible bone pain this year again has gone

2008 year of the bleed-out - with a hysterectomy as the outcome.

Rashes are my bugbear - and an assortment of all different types - all non itchy

Eye Odeama - that is just normal for me now - tadpole eyes in the morning and by

the time 8.00pm in the evening eyes and face A-OK

I also still experience fatigue - by about 2.30 - 3.00 in the afternoon I stated

to wane

and skin is now becoming paler in colour and I burn more easily

I seem to bleed more when cut - faster flow lately

Took nearly a year to work out that I had become a type of lactose intolerant -

so since not having any

dairy for at least 5 hours each side of taking medication no longer vomit, feel

queesy etc.

I am on a Salt Skip Program SSP www.saltmatters.org which has made a fantastic

difference in my overall health

100mg - 2 weeks - did not have any side effects

200mg - 2 weeks - I found the worst side effects I ever felt was on 200mg (go

figure)

400mg for a month - slight side effects

600mg ever since - I have had across the range side effects but in the last

month or so have felt very well even though I am still experincing side effects.

You will be fine on the 600mg and if glivec is still being tolerated by you -

will get fantastic results I am sure

All side effects can be managed.

Off to feed the horses -

Keep in good Health Martha

Sue (Aussie)

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Tracey,

It wasn't clear what the units were of the PCR report of 3.6. However, the way

the message was delivered indicated this is not a log reduction number. I

gathered that the goal is orders of magnitude smaller than this? Exactly what

this number represents is on my list of questions for my appointment next week.

Meanwhile I am coping with the side effects.

Martha B

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