Re: Tasigna and plurel effusion Barb

[Guest guest]

Hi Barb,

I had it, I had to have a tap three times it was so bad.  The tap was not bad ,

as for how it felt you described it pretty good.  I also was short of breath

but unlike you, it showed up in xrays.  When they showed me the xray

it looked like I only had the top of the lung.  The rest was very bright

you could not see the lung at all.  I had 2x500 ml bottles removed

the first time, the second I had 3x500 ml bottles removed and

the last time was 2.5x500ml bottles.  finally they took me off the drug

which was dasatinib which is well documented for PE.. I am back

on Nilotinib (tasigna) which they just increased to 600mg , I am not

looking forward to this as I had just about every side effect that

Nilotinib has in the booklet.  BTW I still have PE but not enough

to tap, it is less than 1/4 lower part of lung. I feel not to bad right now

taking me some time to get use to switching drugs... Ahhhhh the absolute

joy of CML....on the bright side in the book on tasigna the first side

effect is sudden death,  I have not had that one yet, seems like all

the rest I have had.  This is my third time on Tasigna, hope this time

lucky, the other times it put me in the hospital (twice). another side

effect is  pancreatitis, another know side effect, that was when they

tried to get me to 800mg a day.  It is a wonderful drug, but you have

to know your body and anything odd.  Pain in the the back, I would check

with doc if I were you just to make sure its not pancreatitis, but I am not

a doctor,  In fact I probably know less than anyone about CML

although I have had it the longest in Canada USA and maybe the world

they are still checking on that one..

Be safe Barb

SkipD

dx'ex 30++++ years ago

 

 

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From: Barb Stanley <barbarastanley@...>

Subject: [ ] Tasigna and plurel effusion

Date: Monday, February 16, 2009, 7:40 PM

Hello all

It has been a while since I posted. Many things happening, some good

and some not so pleasant. Suffice it to say, life happens and we just

have learned to roll with the flow. My thoughts have been about my

kids, their needs and safety lately and not necessarily CML. Must

say, it was kind of nice not to focus on CML for a while.

I have not posted in a while - and I apologize. I read and think,

pray for some of you and think fondly of you as my friends. Lottie,

it is so good to see you back on line and running foot races around

us all. I have kept up with your posts.

I have a question. I had a check up just two weeks ago. Had the

normal 5 vials of blood drawn, the usual tests and all came back

good. I am still PCRU on 400 mg of tasigna. Side effects are there

but not as bad as gleevec. I am incredibly grateful.

I have had some back pain, not in the bone or spine but in the lower

lobe of what I would call my left lung space. It felt much like a

pulled muscle - and if I would roll on it a certain way, or bend a

certain way, the pain was excruciating. The oncologist thought

maybe plurel effusion. I thought symptoms of that would occur in the

front of my chest and not in my back. They took chest XRays and they

showed nothing - but of course, it cleared up about a week before the

X-Ray. My question to the group: has anyone had it? What did it

feel like?

Any thoughts, wisdom or advice from anyone would be appreciated.

I will try to keep in touch better.

Love

Barb

[Guest guest]

Skip and Bobbie,

Thanks for your inpuyt. It was most helpful. I think I will check

with another MD if the pain returns. For now, I seem to be okay.

Thanks again,

Barb

>

> From: Barb Stanley <barbarastanley@...>

> Subject: [ ] Tasigna and plurel effusion

>

> Date: Monday, February 16, 2009, 7:40 PM

>

>

>

>

>

>

> Hello all

> It has been a while since I posted. Many things happening, some

good

> and some not so pleasant. Suffice it to say, life happens and we

just

> have learned to roll with the flow. My thoughts have been about my

> kids, their needs and safety lately and not necessarily CML. Must

> say, it was kind of nice not to focus on CML for a while.

>

> I have not posted in a while - and I apologize. I read and think,

> pray for some of you and think fondly of you as my friends. Lottie,

> it is so good to see you back on line and running foot races around

> us all. I have kept up with your posts.

>

> I have a question. I had a check up just two weeks ago. Had the

> normal 5 vials of blood drawn, the usual tests and all came back

> good. I am still PCRU on 400 mg of tasigna. Side effects are there

> but not as bad as gleevec. I am incredibly grateful.

> I have had some back pain, not in the bone or spine but in the

lower

> lobe of what I would call my left lung space. It felt much like a

> pulled muscle - and if I would roll on it a certain way, or bend a

> certain way, the pain was excruciating. The oncologist thought

> maybe plurel effusion. I thought symptoms of that would occur in

the

> front of my chest and not in my back. They took chest XRays and

they

> showed nothing - but of course, it cleared up about a week before

the

> X-Ray. My question to the group: has anyone had it? What did it

> feel like?

> Any thoughts, wisdom or advice from anyone would be appreciated.

> I will try to keep in touch better.

> Love

> Barb

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>