Heart condition and gleevac

[Guest guest]

Wow! What a support you all are.  I have been relaying all of this to my

parents, well my mom.  My dad is having such a hard time with the side effects

that he does not have much to say.  First thing I am working on is getting a CML

specialist as many of you have advised.  We live in middle Georgia.  So if you

have any recommendations, it would help me move faster. We are willing to travel

do get to who we need to see.

 

Also, you have put my mind at ease concerning the Gleevac and the heart..  It

definitely needs to be monitored but I am not as fearful. Now we can concentrate

on all of the side effects.  While off of the Gleevac for the last 8 weeks most

of the side effects went away. He had gone back to work after the bypass surgery

for several hours a day.  He was even walking around the neighborhood for

exercises every day.  But boy, as soon as he started back on the Gleevac all of

that has gone out the door. 

 

The nausea is very severe.  He can't sleep through it.  He has had not a

reprieve this week.  Last night he could not make himself take the Gleevac.  My

mom is a nurse so she is really working with him and he is not a difficult

patient.  He just said that he could not handle it for that night.  Blood work

that came back yesterday showed that his white cell count had gone back up from

when he came out of the hospital 8 weeks ago.  So it is very important that he

take the Gleevac.  He also has flu like symptoms as well as severe back and

chest pain.  He is taking meds for nausea and pain but they are not touching

it. 

 

Well, that is where we are.  This is all still very new for our family.  We have

lived pretty uneventful lives and daddy has been the rock of our families.  I

guess we are finding out what we are made of.  We are learning allot as we deal

with medical conditions we had never known about.  I admire all you as I read

how you are dealing with life.  Thank you for being willing to share.  Hopefully

we will be able to turn around and give the same support and comfort you have

given us. 

 

Once again, if you have doctor recommendations they would be greatly

appreciated. 

 

Thanks for the hope!!!!

 

Lori

[Guest guest]

Hi Lori,

Is your Dad taking his Gleevec with a large meal? The more food he takes, the

less nausea he should experience. I sandwich my pill about 2/3rds of the way

through the meal so that I have some food on top and underneath.

Which anti-nausea drug is he taking? There are a number of different ones out

there. Perhaps he should try another one? If one doesn't work, there's a

chance that another one might. Many people have found that Zofran helps.

I had terrible problems when Gleevec changed over from capsule to pill format

(several years ago) leading to more vomiting episodes than I would like to

remember but my body did eventually get used to it and now I'm hardly ever

nauseous and very rarely throw up.

The body aches and pains (flu like symptoms) should also go away in time. When

the leukemia is under control and his marrow is producing more healthy cells, he

should feel substantially better.

The early weeks are the roughest, tell your Dad to hang in there as it does get

better.

Tracey

dx Jan 2002

>

> Wow! What a support you all are.  I have been relaying all of this to my

parents, well my mom.  My dad is having such a hard time with the side effects

that he does not have much to say.  First thing I am working on is getting a CML

specialist as many of you have advised.  We live in middle Georgia.  So if you

have any recommendations, it would help me move faster. We are willing to travel

do get to who we need to see.

>  

> Also, you have put my mind at ease concerning the Gleevac and the heart..  It

definitely needs to be monitored but I am not as fearful. Now we can concentrate

on all of the side effects.  While off of the Gleevac for the last 8 weeks most

of the side effects went away. He had gone back to work after the bypass surgery

for several hours a day.  He was even walking around the neighborhood for

exercises every day.  But boy, as soon as he started back on the Gleevac all of

that has gone out the door. 

>  

> The nausea is very severe.  He can't sleep through it.  He has had not a

reprieve this week.  Last night he could not make himself take the Gleevac.  My

mom is a nurse so she is really working with him and he is not a difficult

patient.  He just said that he could not handle it for that night.  Blood work

that came back yesterday showed that his white cell count had gone back up from

when he came out of the hospital 8 weeks ago.  So it is very important that he

take the Gleevac.  He also has flu like symptoms as well as severe back and

chest pain.  He is taking meds for nausea and pain but they are not touching

it. 

>  

> Well, that is where we are.  This is all still very new for our family.  We

have lived pretty uneventful lives and daddy has been the rock of our families. 

I guess we are finding out what we are made of.  We are learning allot as we

deal with medical conditions we had never known about.  I admire all you as I

read how you are dealing with life.  Thank you for being willing to share. 

Hopefully we will be able to turn around and give the same support and comfort

you have given us. 

>  

> Once again, if you have doctor recommendations they would be greatly

appreciated. 

>  

> Thanks for the hope!!!!

>  

> Lori

>

>

>

>

>

[Guest guest]

Hi Lori, not familiar with Georgia. but Houston has MDACC and Michigan has

the U. of Mich with Dr. Talpaz. Portland OR has Dr. Druker at OHSU,

many places and good doctors to choose from. I'm sure someone will pop up

with someone closer, travel sure gets expensive. I have been in 6 trials

and thank goodness the Ariad trial is at Michigan, and I am in Cleveland, so

it's pretty close. Lots of luck, someone will help you out. blessings,

Bobby

On Sat, May 2, 2009 at 11:35 AM, Lori <perryandlori@...> wrote:

>

>

> Wow! What a support you all are. I have been relaying all of this to my

> parents, well my mom. My dad is having such a hard time with the side

> effects that he does not have much to say. First thing I am working on is

> getting a CML specialist as many of you have advised. We live in middle

> Georgia. So if you have any recommendations, it would help me move faster.

> We are willing to travel do get to who we need to see.

>

> Also, you have put my mind at ease concerning the Gleevac and the heart..

> It definitely needs to be monitored but I am not as fearful. Now we can

> concentrate on all of the side effects. While off of the Gleevac for the

> last 8 weeks most of the side effects went away. He had gone back to work

> after the bypass surgery for several hours a day. He was even walking

> around the neighborhood for exercises every day. But boy, as soon as he

> started back on the Gleevac all of that has gone out the door.

>

> The nausea is very severe. He can't sleep through it. He has had not a

> reprieve this week. Last night he could not make himself take the Gleevac.

> My mom is a nurse so she is really working with him and he is not a

> difficult patient. He just said that he could not handle it for that

> night. Blood work that came back yesterday showed that his white cell count

> had gone back up from when he came out of the hospital 8 weeks ago. So it

> is very important that he take the Gleevac. He also has flu like symptoms

> as well as severe back and chest pain. He is taking meds for nausea and

> pain but they are not touching it.

>

> Well, that is where we are. This is all still very new for our family. We

> have lived pretty uneventful lives and daddy has been the rock of our

> families. I guess we are finding out what we are made of. We are learning

> allot as we deal with medical conditions we had never known about. I admire

> all you as I read how you are dealing with life. Thank you for being

> willing to share. Hopefully we will be able to turn around and give the

> same support and comfort you have given us.

>

> Once again, if you have doctor recommendations they would be greatly

> appreciated.

>

> Thanks for the hope!!!!

>

> Lori

>

>