Fluid effusions and enlarged heart

[Guest guest]

Hey everyone-

Need some advice from the specialists on here! Here's the lowdown:

Was dx at 33 (5 yrs ago) put on Gleevec 800mg. After being on 2 yrs and

major side effects (although responded great=PCRU) I was switched to Spyrcel

100mg. I have been PRCU for 2 1/2 years now on Spyrcel and less side

effects then Gleevec although still have muscle pain, fatigue daily.....

I have been SOB (shortness of breath), more fatigue then usual, pain in

chest area. Went to DR who did chest X-ray, which showed fluid around right

lung and slightly enlarged heart. They have set me up for a echo and a CT

of chest tomorrow. I apparently had this show up on X-ray in March as well.

My question is... Should I be concerned that this is causing damage to

lungs or heart? I do always have SOB with exertion but very much worse right

now. I am not running temp. Should I be thinking of switching to the next

choice of drug, which I believe is Tasinga? Do people have the same side

effects? My fear is that I will have the gleevec side effects again or

maybe wont respond like I did to these 2 drugs.....

I live in St. Louis and have a normal oncologist here not a CML specialist

although I do fly to Portland and see Dr, Mauro when needed. May be time

for another visit....

What your thoughts/suggestions?

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

[Guest guest]

Hi ,

Of course you should be concerned.

I would call or write Dr. Mauro and ask him. Is it possible that you are on

too high a dose of the medication. He should be able to answer that by doing

a serum level test.

Dr. Mauro maurom@... 503-494-0376

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...> zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: [mailto: ] On Behalf Of

vegasrnjen@...

Sent: September-30-10 8:30 PM

Subject: [ ] Fluid effusions and enlarged heart

Hey everyone-

Need some advice from the specialists on here! Here's the lowdown:

Was dx at 33 (5 yrs ago) put on Gleevec 800mg. After being on 2 yrs and

major side effects (although responded great=PCRU) I was switched to Spyrcel

100mg. I have been PRCU for 2 1/2 years now on Spyrcel and less side

effects then Gleevec although still have muscle pain, fatigue daily.....

I have been SOB (shortness of breath), more fatigue then usual, pain in

chest area. Went to DR who did chest X-ray, which showed fluid around right

lung and slightly enlarged heart. They have set me up for a echo and a CT

of chest tomorrow. I apparently had this show up on X-ray in March as well.

My question is... Should I be concerned that this is causing damage to

lungs or heart? I do always have SOB with exertion but very much worse right

now. I am not running temp. Should I be thinking of switching to the next

choice of drug, which I believe is Tasinga? Do people have the same side

effects? My fear is that I will have the gleevec side effects again or

maybe wont respond like I did to these 2 drugs.....

I live in St. Louis and have a normal oncologist here not a CML specialist

although I do fly to Portland and see Dr, Mauro when needed. May be time

for another visit....

What your thoughts/suggestions?

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

[Guest guest]

> I have been SOB (shortness of breath), more fatigue then usual, pain in

> chest area. Went to DR who did chest X-ray, which showed fluid around right

> lung and slightly enlarged heart. They have set me up for a echo and a CT

> of chest tomorrow. I apparently had this show up on X-ray in March as well.

_____________________________

Hi ,

A known side effect with Sprycel in about 35% of people is pleural effusion,

which is sounds like you have. The usual treatment (I see Dr. Druker and had

several episodes of this) is to stop the drug and the effusion for me was less

in about 36 hours....stay off the drug until the effusion is minimal, and then

resume, and possibly at a lower dose (like from 100mg, to 80mg). I don't think

your local onc should have just ignored this in March. If you have chronic and

constant PE (pleural effusion) then it can be harder to get rid of.

My guess if that you don't really have an enlarged heart (just a guess) but that

you also have swelling around the heart (pericardial effusion).....this also

occurs with this drug.

Usually when this becomes a constant problem with Sprycel, then you go off that

drug onto another one. I switched to Tasigna about 7 months ago. But your doctor

never really tried to treat the effusion....which would be to stop the drug,

maybe use a diuretic and you most likely can be on a lower dose because of your

good response.

Because Dr. Mauro knows you, I would e-mail him, including the results of the

tests you are taking, and ask his opinion. There may be reasons he would like to

see you stay on Sprycel if possible? And your local onc needs to have some

guidelines for treating the effusion.

As soon as I noticed increased SOB, I would have an x-ray and it would confirm

PE.....I would go off drug usually for 2 weeks, have another chest x-ray to

verify the clearing and then resume the drug. I was in a Sprycel trial, but this

is the standard protocol for this problem.

Let us know how you do.

C.

[Guest guest]

Hi

 

 

I have high blood pressure.  I found out 2 years ago - I have a slightly

enlarged heart as well.   I now take Benicar with a diuretic.   I am 52 but

no SOB  (unless you ask for my wife's opinion - lol).  I am able to play

basketball 2 mornings a week.  

 

The Hear Dr still thinks the heart should return to normal with BP management

and exercise.  Still - it has not done so yet.  I will be interested to hear

what you learn from Dr Mauro.

 

I have been on 400Mg of Gleevec for 7 years.

 

Good Luck!

From: Zavie <zmiller@...>

Subject: RE: [ ] Fluid effusions and enlarged heart

, vegasrnjen@...

Date: Thursday, September 30, 2010, 9:14 PM

 

Hi ,

Of course you should be concerned.

I would call or write Dr. Mauro and ask him. Is it possible that you are on

too high a dose of the medication. He should be able to answer that by doing

a serum level test.

Dr. Mauro maurom@... 503-494-0376

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...> zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: [mailto: ] On Behalf Of

vegasrnjen@...

Sent: September-30-10 8:30 PM

Subject: [ ] Fluid effusions and enlarged heart

Hey everyone-

Need some advice from the specialists on here! Here's the lowdown:

Was dx at 33 (5 yrs ago) put on Gleevec 800mg. After being on 2 yrs and

major side effects (although responded great=PCRU) I was switched to Spyrcel

100mg. I have been PRCU for 2 1/2 years now on Spyrcel and less side

effects then Gleevec although still have muscle pain, fatigue daily.....

I have been SOB (shortness of breath), more fatigue then usual, pain in

chest area. Went to DR who did chest X-ray, which showed fluid around right

lung and slightly enlarged heart. They have set me up for a echo and a CT

of chest tomorrow. I apparently had this show up on X-ray in March as well.

My question is... Should I be concerned that this is causing damage to

lungs or heart? I do always have SOB with exertion but very much worse right

now. I am not running temp. Should I be thinking of switching to the next

choice of drug, which I believe is Tasinga? Do people have the same side

effects? My fear is that I will have the gleevec side effects again or

maybe wont respond like I did to these 2 drugs.....

I live in St. Louis and have a normal oncologist here not a CML specialist

although I do fly to Portland and see Dr, Mauro when needed. May be time

for another visit....

What your thoughts/suggestions?

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

[Guest guest]

Last year I had PL around the right lung, they removed it.  It took about 4

months and I had 8.5 500ML bottles removed.

over this time, and it was caused by the drug.  I did not feel it when they did

the procedure, after each time it felt

sooooo good to get a good breath.  I no longer have it nor am I am the drug.

SkipD dx'ed 33 years ago

________________________________

From: hey00nanc <ncogan@...>

Sent: Fri, October 1, 2010 1:25:35 AM

Subject: [ ] Re: Fluid effusions and enlarged heart

 

> I have been SOB (shortness of breath), more fatigue then usual, pain in

> chest area. Went to DR who did chest X-ray, which showed fluid around right

> lung and slightly enlarged heart. They have set me up for a echo and a CT

> of chest tomorrow. I apparently had this show up on X-ray in March as well.

_____________________________

Hi ,

A known side effect with Sprycel in about 35% of people is pleural effusion,

which is sounds like you have. The usual treatment (I see Dr. Druker and had

several episodes of this) is to stop the drug and the effusion for me was less

in about 36 hours....stay off the drug until the effusion is minimal, and then

resume, and possibly at a lower dose (like from 100mg, to 80mg). I don't think

your local onc should have just ignored this in March. If you have chronic and

constant PE (pleural effusion) then it can be harder to get rid of.

My guess if that you don't really have an enlarged heart (just a guess) but that

you also have swelling around the heart (pericardial effusion).....this also

occurs with this drug.

Usually when this becomes a constant problem with Sprycel, then you go off that

drug onto another one. I switched to Tasigna about 7 months ago. But your doctor

never really tried to treat the effusion....which would be to stop the drug,

maybe use a diuretic and you most likely can be on a lower dose because of your

good response.

Because Dr. Mauro knows you, I would e-mail him, including the results of the

tests you are taking, and ask his opinion. There may be reasons he would like to

see you stay on Sprycel if possible? And your local onc needs to have some

guidelines for treating the effusion.

As soon as I noticed increased SOB, I would have an x-ray and it would confirm

PE.....I would go off drug usually for 2 weeks, have another chest x-ray to

verify the clearing and then resume the drug. I was in a Sprycel trial, but this

is the standard protocol for this problem.

Let us know how you do.

C.

[Guest guest]

>

> Last year I had PL around the right lung, they removed it.  It took about 4

> months and I had 8.5 500ML bottles removed.

> over this time, and it was caused by the drug.  I did not feel it when they

did

> the procedure, after each time it felt

> sooooo good to get a good breath.  I no longer have it nor am I am the drug.

>

> SkipD dx'ed 33 years ago

_______________________________

Hi ,

Just to add.....I have never had to have the fluid withdrawn from the lung

sac.....it resolved when I was taken off drug.

OHSU's position, per Carolyn, is that if the SOB is bad enough and you cannot

function, then have that done....but it is usually not necessary.

C.