Re: [CMLHope] Bosulif and high blood pressure

['Susan Zimmerman' via CMLHope]

Hi Ann,
I have slightly elevated blood pressure and am on bosulif (very low 
dose...100mg every other day). Also take lisinopril 20 mg every day. It keeps 
me normalized. Just fyi. I sincerely hope your mom can find the right dosages.  
Prayer applied, too!

18's,

Susan F. Zimmerman


On Friday, July 27, 2018 'Jeanie' via CMLHope  wrote:

Hi Ann

I have high blood pressure. 
I’ve been in tki for years. I have tried all the blood pressure pills with no 
luck. They all make my heart hurt.  He is probably under a lot of stress. Try 
yoga and other calming exercises.  

They help some. 

My Motto:

Faith and Pills

With Love

Jeanie

🐠free

18’s to Marty

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/ 2015 15 mg

New Doctor--Dr Martine Extermann

Moffitt Cancer  center sept 2017

Dr Balducci retired 

Dr Gedia PCD

0 CBL. ABL

Taking 0.05mg 50 mcg levothyroxine

July 2018 dx with thyroid disease tsh 13

T4-normal t3-normal


On Jul 26, 2018, at 12:47 PM, Ana Burgos  wrote:

Anyone on Bosulif is getting high blood pressure? 
Since my mum started Bosulif she has gone to emergency 3 times with very high 
pressure! 

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[CMLHope] Breathing Difficulties [Dasatinib]

[Gopalsamy Ragavan]

I was taking 50mg Dasatinib per day. An year back it was increased to 75mg.
For the last few months breathing difficulty is keep increasing. I am not
able to take full breath. It is always half breath. I will discuss with my
doctor in the coming visit.

Did anybody else face the same problem? How did you handle? Please help.

thanks,
Ragavan

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Re: [CMLHope] Breathing Difficulties [Dasatinib]

[Marty Gartenberg]

Hi Ragavan, I see that your probably new here because I have not seen your
name before. Please correct me if I am mistaken.

First my name is Marty and I would like to take this opportunity to welcome
you here with us. You will find that we are usually an ordinary bunch of
caring and helpful people that like to learn from each other. What I call
this "club" is the club that no one wants to join or be a member of. And so
be this. However, since everyone here is an equal member and partner
then,,, Well we are stuck with each other. And believe it or not this is
really a good club to learn as well as teach yourself and at the same time
to teach others as well. We are unique group of people because we all share
something with one and other, and that is CML.

So what can I say about us and you as well? We all share the goal of
working together and keep on living and enjoying life. And now you know
that because of so many advancements in how we are treated as well as in
the future, then things will get better and better.

I had CML CML well over thirty years ago and let me tell you that I really
suffered not knowing if I would die or would live on for a very short
period of time. Now it is 2018 soon to be, within five months 2019. And in
spite of everything that we are still living subjects of GOD.

Thirty years ago I had no other choice but you do now. I'm sure that you
have heard, take it one day at a time. Truer words have never been spoken.

Now if you don't know anything or everything about CML then please read
what I am sending you. All that you have to do is sit down and read it. You
will see about some of the side effects concerning Sprycel one which will
be about your lungs, and it will say this is a "normal" thing that happens
to a lot of people. Now how does anyone try to explain what "normal" means?
I don't know but considering that we are all different from each other so
maybe normal has different meanings for different people.

IMPORTANT FACTS ABOUT SPRYCEL Most common side effects Side effects of
SPRYCEL that are considered common in adults.

Be sure to read all about this and as I previously stated... Take one day
at a time.

I will leave you with something that my father once taught me a very long
time ago, and  a symbol of life... He said to me that if you take the time
to learn something new every day then you will become smarter, but if you
do not want or refuse to learn something new every day then you will revert
to going back to yesterday.

18's. = life

Marty

On Sat, Jul 28, 2018 at 9:26 AM, Gopalsamy Ragavan 
wrote:

> I was taking 50mg Dasatinib per day. An year back it was increased to
> 75mg. For the last few months breathing difficulty is keep increasing. I am
> not able to take full breath. It is always half breath. I will discuss with
> my doctor in the coming visit.
>
> Did anybody else face the same problem? How did you handle? Please help.
>
> thanks,
> Ragavan
>
>
> --
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[CMLHope] Siggy

['Jeanie' via CMLHope]

My granddaughter is an artist. This is her rendition of Siggy as we call him.  
Have a great Evening everyone.  




My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s to Marty
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
Taking 0.05mg 50 mcg levothyroxine
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

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Re: [CMLHope] Breathing Difficulties [Dasatinib]

['Jeanie' via CMLHope]

Hi there
You may need oxygen. They gave my husband the choice of oxygen or not since he 
was borderline.  I wish we had opted for but we didn’t.  I don’t think I would 
wait for drs visit. Get it checked now. 
Just my opinion. 
Love you so very much 



My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s to Marty
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
Taking 0.05mg 50 mcg levothyroxine
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

> On Jul 28, 2018, at 9:26 AM, Gopalsamy Ragavan  wrote:
> 
> I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. 
> For the last few months breathing difficulty is keep increasing. I am not 
> able to take full breath. It is always half breath. I will discuss with my 
> doctor in the coming visit.
> 
> Did anybody else face the same problem? How did you handle? Please help.
> 
> thanks,
> Ragavan
> 
> 
> -- 
> -- 
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Re: [CMLHope] Breathing Difficulties [Dasatinib]

['Jeanie' via CMLHope]

I need to clarify my post. My hubby had heart disease and I am the one with the 
cml. 
I never had the breathing problems with Dasatinib but it is a side effect and 
could be a lung problem.  
That is why I said don’t wait to get advice on what to do. 
It quit working for me after 4 years and I was put on Ponatinib.   
Read your leaflet that came with your meds very carefully.  Make sure you 
aren’t taking a medicine that might interfere with dasatinib but report this to 
your onc right away. 
Good luck. 


My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s to Marty
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
Taking 0.05mg 50 mcg levothyroxine
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

> On Jul 28, 2018, at 1:32 PM, 'Jeanie' via CMLHope  
> wrote:
> 
> Hi there
> You may need oxygen. They gave my husband the choice of oxygen or not since 
> he was borderline.  I wish we had opted for but we didn’t.  I don’t think I 
> would wait for drs visit. Get it checked now. 
> Just my opinion. 
> Love you so very much 
> 
> 
> 
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> 🐠free
> 18’s to Marty
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired 
> Dr Gedia PCD
> 0 CBL. ABL
> Taking 0.05mg 50 mcg levothyroxine
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
> 
>> On Jul 28, 2018, at 9:26 AM, Gopalsamy Ragavan  wrote:
>> 
>> I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. 
>> For the last few months breathing difficulty is keep increasing. I am not 
>> able to take full breath. It is always half breath. I will discuss with my 
>> doctor in the coming visit.
>> 
>> Did anybody else face the same problem? How did you handle? Please help.
>> 
>> thanks,
>> Ragavan
>> 
>> 
>> -- 
>> -- 
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> 
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Re: [CMLHope] Siggy

[Marty Gartenberg]

Hey, go get him Siggy Just look at that face with the pink washcloth
sticking out of his mouth

18's,

Marty

On Sat, Jul 28, 2018 at 1:24 PM, 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

> My granddaughter is an artist. This is her rendition of Siggy as we call
> him.
> Have a great Evening everyone.
>
>
>
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> 🐠free
> 18’s to Marty
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired
> Dr Gedia PCD
> 0 CBL. ABL
> Taking 0.05mg 50 mcg levothyroxine
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
>
> --
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Re: [CMLHope] Siggy

[Joyce Mesnarich]

Your daughter is a very gifted artist.  Great job.  Thanks for sharing.
 Joyce in Southern Illinois


> On Jul 28, 2018, at 12:24 PM, 'Jeanie' via CMLHope  
> wrote:
> 
> My granddaughter is an artist. This is her rendition of Siggy as we call him. 
>  
> Have a great Evening everyone.  
> 
> 
> 
> 
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> 🐠free
> 18’s to Marty
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired 
> Dr Gedia PCD
> 0 CBL. ABL
> Taking 0.05mg 50 mcg levothyroxine
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
> 
> -- 
> -- 
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Re: [CMLHope] Breathing Difficulties [Dasatinib]

[Joyce Mesnarich]

Gopalsamy,
I suggest you make an appointment with your CML specialist right now.  My 
husband had the same experience with Dasatinib.  Turned out it had caused fluid 
around his heart.  Please get this checked out immediately.

 Joyce in Southern Illinois (USA)


> On Jul 28, 2018, at 8:26 AM, Gopalsamy Ragavan  wrote:
> 
> I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. 
> For the last few months breathing difficulty is keep increasing. I am not 
> able to take full breath. It is always half breath. I will discuss with my 
> doctor in the coming visit.
> 
> Did anybody else face the same problem? How did you handle? Please help.
> 
> thanks,
> Ragavan
> 
> 
> 
> -- 
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Re: [CMLHope] Breathing Difficulties [Dasatinib]

[bkbarney via CMLHope]

Yes Ragavan, I too had the same problem. I can only take a small dose of 
Dasatanib because I get the plural effusions and swelling around the heart from 
the medication. It is a known side effect that can creep up any time. Many 
patients  do just fine on a very specific dose, if they raise it, it can cause 
this problem you are describing. These TKi's can also impact the heart in other 
ways, but  I strongly suggest that you see your doc and ask for a 
cardio-oncologist to help you. Those are cardiologists that specialize in how 
these cancer drugs impact the heart. The standard for sprycel patients, is that 
we  do an echo cardiogram at least twice a year to make sure the heart is 
pumping well and there is no sign of PE etc.


I do not know when you next appointment is scheduled, but I would not wait to 
long to get in to see your doc. It could be from the medication increase, it 
could be something else, but knowing is important, because swift action is 
needed so you do not under attend  a potential big problem. If you cannot take 
a deep breath, and this is NOT your baseline, then that's a big problem. 


Sometimes we must push our doctors and fight to advocate for ourselves, to get 
the right testing, etc...


If your doctor chose to push up your dose based upon your BCR-ABl testing, then 
talk with them. There are several TKI's out there and two in trials...


Sending you strength, and peacego see your doc!!!

Worried about you in Chicago..


Love to all, 


18's Beth.

-Original Message-
From: Joyce Mesnarich 
To: cmlhope 
Sent: Sat, Jul 28, 2018 3:22 pm
Subject: Re: [CMLHope] Breathing Difficulties [Dasatinib]


Gopalsamy,
I suggest you make an appointment with your CML specialist right now.  My 
husband had the same experience with Dasatinib.  Turned out it had caused fluid 
around his heart.  Please get this checked out immediately.


 Joyce in Southern Illinois (USA)





On Jul 28, 2018, at 8:26 AM, Gopalsamy Ragavan  wrote:



I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. For 
the last few months breathing difficulty is keep increasing. I am not able to 
take full breath. It is always half breath. I will discuss with my doctor in 
the coming visit.


Did anybody else face the same problem? How did you handle? Please help.


thanks,
Ragavan







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Re: [CMLHope] Breathing Difficulties [Dasatinib]

[bkbarney via CMLHope]

Also, I agree with Jeanie, check out any supplements or other medications you 
are taking. Tumeric, is known to increase the effectiveness and also the side 
effects of the sprycel. I tried to take it with the sprycel and got horribly 
sick... so another thing to consider...


!8
s Beth



-Original Message-
From: 'Jeanie' via CMLHope 
To: cmlhope 
Sent: Sat, Jul 28, 2018 12:44 pm
Subject: Re: [CMLHope] Breathing Difficulties [Dasatinib]


I need to clarify my post. My hubby had heart disease and I am the one with the 
cml. 
I never had the breathing problems with Dasatinib but it is a side effect and 
could be a lung problem.  
That is why I said don’t wait to get advice on what to do. 
It quit working for me after 4 years and I was put on Ponatinib.   
Read your leaflet that came with your meds very carefully.  Make sure you 
aren’t taking a medicine that might interfere with dasatinib but report this to 
your onc right away. 
Good luck. 



My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s to Marty
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
Taking 0.05mg 50 mcg levothyroxine
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal


On Jul 28, 2018, at 1:32 PM, 'Jeanie' via CMLHope  
wrote:



Hi there
You may need oxygen. They gave my husband the choice of oxygen or not since he 
was borderline.  I wish we had opted for but we didn’t.  I don’t think I would 
wait for drs visit. Get it checked now. 
Just my opinion. 
Love you so very much 





My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s to Marty
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
Taking 0.05mg 50 mcg levothyroxine
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal


On Jul 28, 2018, at 9:26 AM, Gopalsamy Ragavan  wrote:




I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. For 
the last few months breathing difficulty is keep increasing. I am not able to 
take full breath. It is always half breath. I will discuss with my doctor in 
the coming visit.


Did anybody else face the same problem? How did you handle? Please help.


thanks,
Ragavan





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