Re: bone pain - food for thought

[Guest guest]

yes, to your questions. The bone pain was the worst at diagnosis and became much

less as the wbc got to normal---for me anyway.

Malseed <rodorbal@...> wrote:

G'day everyone,

I had an interesting conversation with a friend yesterday who is the unit

manager of a cardiac/oncology ward. We were discussing bone pain as my

brother in law has just been dx with multiple myeloma. She was saying that

there is a theory (but not proven), that the bone pain that occurs in the

leukaemias etc is due to the chemo working and as a result, the bone marrow

" expands " so to speak, once it has room when the bad cells are removed and

that is why the devastating bone pain occurs.

As my CML was dx very early, I haven't experienced this pain, but for others

who were quite advanced, I wonder if this may be the cause?

Some questions to ask:

If you did experience severe bone pain following treatment, where you dx

with major symptoms ie spleen and liver or other symptoms which lead to the

dx?

Has the bone pain decreased in time?

Regards,

from Downunder

[Guest guest]

Bone Pain

Prior to being diagnosed - I had bone pain in my left shin.

When first on gleevic - I had spasmodic bone pain - not in all the

bones in particular section of bone -

Example: Collar bone - I could actually feel the section where pain

was. Hip bone, arm bone and bones on top of feet etc. The pain was

not there all the time but came and went.

The worst was when I was on 200mg for 2 weeks - all sorts of bone

pain.

I was told - that this is a health reaction - gleevic killing off

cells, and more blood pouring into bone. Could be a story - and no

scientic research but it gave me a positive that the pain was a good

thing and after awhile did not worry me.

I am on 600mg per day - and have no bone pain at all.

Gleevec (Glivec in Australia)

Only have been ever on Glivec from being diagnosed

100mg for 2 weeks

200mg for 2 weeks

400mg for 4 weeks

600mg onward ...... (currently)

Sue

>

>

>

> G'day everyone,

>

>

>

> I had an interesting conversation with a friend yesterday who is

the unit

> manager of a cardiac/oncology ward. We were discussing bone pain as

my

> brother in law has just been dx with multiple myeloma. She was

saying that

> there is a theory (but not proven), that the bone pain that occurs

in the

> leukaemias etc is due to the chemo working and as a result, the

bone marrow

> " expands " so to speak, once it has room when the bad cells are

removed and

> that is why the devastating bone pain occurs.

>

>

>

> As my CML was dx very early, I haven't experienced this pain, but

for others

> who were quite advanced, I wonder if this may be the cause?

>

>

>

> Some questions to ask:

>

>

>

> If you did experience severe bone pain following treatment, where

you dx

> with major symptoms ie spleen and liver or other symptoms which

lead to the

> dx?

>

>

>

> Has the bone pain decreased in time?

>

>

>

> Regards,

>

>

>

> from Downunder

>

>

>

>

>

>

>

>

[Guest guest]

I think most of us experienced some joint/bone pain in the 1st month

of gleevec. It's in general hard to know if it's bone or joint pain as

it tends to be diffuse and sometime a nerve is getting irritated not a

the spot you feel the pain. A good example is shoulder pain due to

spleen enlargement. Most people have elevated to very high WBC at dx,

with a very high cell turnover, which means a lot of garbage from dead

cells (LDH in the blood tests). And when gleevec starts, even more

cells are dying, so more garbage. LDH is acid so the blood ph goes

downs what is pretty bad for joints (precipitates calcium). Plus

gleevec tends to play hell with electrolytes which doesn't help. It is

also pretty bad for the kidneys which is why we got to have some

allopurinol for a few weeks after dx. The main remedy to avoid getting

lasting problems in the joints or bones is to drink a lot of water in

the months after dx, until getting into a good remission. Some

exercise is also pretty good. Walking helped me with the hip pain in

the month after dx. I do have some short time pain in the chins once

in a while, I would tend to think it's some cml cell than the drug,

but I have no hard data on this.

Marcos.

On Sat, Mar 22, 2008 at 7:43 PM, suehurt28 <hollie@...> wrote:

>

>

>

>

>

>

> Bone Pain

>

> Prior to being diagnosed - I had bone pain in my left shin.

>

> When first on gleevic - I had spasmodic bone pain - not in all the

> bones in particular section of bone -

>

> Example: Collar bone - I could actually feel the section where pain

> was. Hip bone, arm bone and bones on top of feet etc. The pain was

> not there all the time but came and went.

>

> The worst was when I was on 200mg for 2 weeks - all sorts of bone

> pain.

>

> I was told - that this is a health reaction - gleevic killing off

> cells, and more blood pouring into bone. Could be a story - and no

> scientic research but it gave me a positive that the pain was a good

> thing and after awhile did not worry me.

>

> I am on 600mg per day - and have no bone pain at all.

>

> Gleevec (Glivec in Australia)

>

> Only have been ever on Glivec from being diagnosed

>

> 100mg for 2 weeks

> 200mg for 2 weeks

> 400mg for 4 weeks

> 600mg onward ...... (currently)

>

> Sue

>

>

>

> >

> >

> >

> > G'day everyone,

> >

> >

> >

> > I had an interesting conversation with a friend yesterday who is

> the unit

> > manager of a cardiac/oncology ward. We were discussing bone pain as

> my

> > brother in law has just been dx with multiple myeloma. She was

> saying that

> > there is a theory (but not proven), that the bone pain that occurs

> in the

> > leukaemias etc is due to the chemo working and as a result, the

> bone marrow

> > " expands " so to speak, once it has room when the bad cells are

> removed and

> > that is why the devastating bone pain occurs.

> >

> >

> >

> > As my CML was dx very early, I haven't experienced this pain, but

> for others

> > who were quite advanced, I wonder if this may be the cause?

> >

> >

> >

> > Some questions to ask:

> >

> >

> >

> > If you did experience severe bone pain following treatment, where

> you dx

> > with major symptoms ie spleen and liver or other symptoms which

> lead to the

> > dx?

> >

> >

> >

> > Has the bone pain decreased in time?

> >

> >

> >

> > Regards,

> >

> >

> >

> > from Downunder

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

--Hi everyone when i was dx. my bone pain was severe so was my fatigue

my blood counts at that time were 18,000 .{got dx. very early}

although i feel like I've been complaining about it for at least 2

years. My dr. kept telling me it was from my fibromyalgia. After

three months to 4 months on Gleevec my bone pain stopped and i feel

pretty good now. So now i even wonder if i even have fibromyalgia.

Love to all

Esther

dx.oct. 06

Zavie #1092

- In , Margaret Peake <mpraymond@...>

wrote:

>

> yes, to your questions. The bone pain was the worst at diagnosis

and became much less as the wbc got to normal---for me anyway.

>

> Malseed <rodorbal@...> wrote:

>

> G'day everyone,

>

> I had an interesting conversation with a friend yesterday who is

the unit

> manager of a cardiac/oncology ward. We were discussing bone pain as

my

> brother in law has just been dx with multiple myeloma. She was

saying that

> there is a theory (but not proven), that the bone pain that occurs

in the

> leukaemias etc is due to the chemo working and as a result, the

bone marrow

> " expands " so to speak, once it has room when the bad cells are

removed and

> that is why the devastating bone pain occurs.

>

> As my CML was dx very early, I haven't experienced this pain, but

for others

> who were quite advanced, I wonder if this may be the cause?

>

> Some questions to ask:

>

> If you did experience severe bone pain following treatment, where

you dx

> with major symptoms ie spleen and liver or other symptoms which

lead to the

> dx?

>

> Has the bone pain decreased in time?

>

> Regards,

>

> from Downunder

>

>

[Guest guest]

Gleevec is said to reverse bone marrow fibrosis. Several articles

mention this. But I guess it varies depending on people. I was dx with

a lot more WBC (252) but had no bone pain that I remember prior to

gleevec. The pain I had was coming from the spleen (side and left

shoulder). I am a diver, and was diving really deep just 3 weeks

before dx, I would have noticed bone pain as it's a strong sign of

decompression sickness. And now that I am PCRU I sometime feel a

little ping in a chin. Go figure.

Marcos.

On Sun, Mar 23, 2008 at 9:40 AM, snipandtip <no_reply > wrote:

>

>

>

>

> --Hi everyone when i was dx. my bone pain was severe so was my fatigue

> my blood counts at that time were 18,000 .{got dx. very early}

> although i feel like I've been complaining about it for at least 2

> years. My dr. kept telling me it was from my fibromyalgia. After

> three months to 4 months on Gleevec my bone pain stopped and i feel

> pretty good now. So now i even wonder if i even have fibromyalgia.

>

> Love to all

> Esther

> dx.oct. 06

> Zavie #1092

>

> - In , Margaret Peake <mpraymond@...>

> wrote:

>

> >

> > yes, to your questions. The bone pain was the worst at diagnosis

> and became much less as the wbc got to normal---for me anyway.

> >

>

> > Malseed <rodorbal@...> wrote:

> >

> > G'day everyone,

> >

> > I had an interesting conversation with a friend yesterday who is

> the unit

> > manager of a cardiac/oncology ward. We were discussing bone pain as

> my

> > brother in law has just been dx with multiple myeloma. She was

> saying that

> > there is a theory (but not proven), that the bone pain that occurs

> in the

> > leukaemias etc is due to the chemo working and as a result, the

> bone marrow

> > " expands " so to speak, once it has room when the bad cells are

> removed and

> > that is why the devastating bone pain occurs.

> >

> > As my CML was dx very early, I haven't experienced this pain, but

> for others

> > who were quite advanced, I wonder if this may be the cause?

> >

> > Some questions to ask:

> >

> > If you did experience severe bone pain following treatment, where

> you dx

> > with major symptoms ie spleen and liver or other symptoms which

> lead to the

> > dx?

> >

> > Has the bone pain decreased in time?

> >

> > Regards,

> >

> > from Downunder

> >

> >

[Guest guest]

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[Guest guest]

,

I have had bone pain since my dx in 04. It went away for a week then came

back and has never went awayy. But I control it with medication and it is a

small price to pay for staying in remission;)

Terry

On Fri, Mar 21, 2008 at 6:59 PM, Malseed <rodorbal@...>

wrote:

>

>

> G'day everyone,

>

> I had an interesting conversation with a friend yesterday who is the unit

> manager of a cardiac/oncology ward. We were discussing bone pain as my

> brother in law has just been dx with multiple myeloma. She was saying that

> there is a theory (but not proven), that the bone pain that occurs in the

> leukaemias etc is due to the chemo working and as a result, the bone

> marrow

> " expands " so to speak, once it has room when the bad cells are removed and

> that is why the devastating bone pain occurs.

>

> As my CML was dx very early, I haven't experienced this pain, but for

> others

> who were quite advanced, I wonder if this may be the cause?

>

> Some questions to ask:

>

> If you did experience severe bone pain following treatment, where you dx

> with major symptoms ie spleen and liver or other symptoms which lead to

> the

> dx?

>

> Has the bone pain decreased in time?

>

> Regards,

>

> from Downunder

>

>