Re: My recent appt at MDACC

[Guest guest]

Jackie,

Wow..What an ordeal..I sure hope you are feeling better now and on the mend

from all that..Take care of yourself..

SharonS

In , jackie schneider <jschneider008@...> wrote:

>

> Dear Group,

>  

> Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

> After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

> pain in my left leg which was very uncomfortable but after some fluids

through IV it faded away.

> Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

> They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

> Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

> I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

>  

> Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

>  

> God Bless you all,

> Jackie S.

>  

> P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug.

She was around 70 yrs old and has been in alot of bone pain since April. She was

on Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.

>

>

>

>

>

[Guest guest]

Wow Jackie, sorry to hear you had to experience all that. I'm glad you are

better now and hope all goes well with you from here on out. I still don't know

a lot about CML and all the terminology for it so I don't know what you are

talking about on some of it but I will figure it all out in time to come. Just

get better and we will all be happy.

Praying for you,

From: jackie schneider <jschneider008@...>

Subject: [ ] My recent appt at MDACC

Date: Wednesday, July 29, 2009, 3:29 AM

 

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me..

[Guest guest]

Hi Jackie,

Wow, what an ordeal! The only time I've ever had a reaction similar to the one

you describe was when I was in labour. I was shaking on the table so much, I

worried that I was going to fall off of it. No one seemed concerned though and

the only thing they did for me was put a heated blanket on me.

I never got an answer as to what caused the violent shivering but someone

suggested years later that it may have been a reaction to one of the pain

medications they gave me.

In any case, I'm glad you're feeling better now.

Tracey

[Guest guest]

Yikes Jackie! That does not sound like fun! I'm worried about you and hope

things stabilize....

Beth

[ ] My recent appt at MDACC

 

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I

did.  I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.

[Guest guest]

Hi Jackie, I never had a platelet transfusion, so cannot relate, but it sounds

like something no one wants to go through.  How were the rest of your counts? 

Len's platelets drop a lot also on this drug, to what, I dont recall, but will

ask Ernie , and also see if she had  problems with platelet transfusions. I am

going to forward your email to Len and Ernie, because of her problems with

platelets too, maybe they can compare notes with your experience..  I don't get

another bma until the end of Aug., will let you all know how it goes, not the

procedure, I mean the results!  Good luck Jackie, and feel better.  blessings,

bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: jackie schneider <jschneider008@...>

Subject: [ ] My recent appt at MDACC

Date: Tuesday, July 28, 2009, 11:29 PM

 

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.

[Guest guest]

Jackie,

I'm so sorry to hear about your ordeal.  I remember having bad shakes when I was

first admitted to the hospital a year ago, but I had a fever, and I'm sure my

nerves got the best of me too. 

I hope you're able to rest and feel better today.  Will they be giving you

anything for anemia?

God Bless,

________________________________

From: jackie schneider <jschneider008@...>

Sent: Tuesday, July 28, 2009 8:29:39 PM

Subject: [ ] My recent appt at MDACC

 

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.

[Guest guest]

What a scary ordeal. This is one of those times when I wish we could all be

there in person for one of our own!

From: bethgalliart@...

Date: Wed, 29 Jul 2009 15:18:28 +0000

Subject: Re: [ ] My recent appt at MDACC

Yikes Jackie! That does not sound like fun! I'm worried about you and hope

things stabilize....

Beth

[ ] My recent appt at MDACC

Dear Group,

Well the last couple days have been kinda a blur. I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon. That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness. I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14). They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons. I was

feeling much better but they still wanted me to stay for observation. So I did.

I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets. (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different. However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode. No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again.

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

God Bless you all,

Jackie S.

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.

[Guest guest]

Yes. Although I do have Rhonda here and she called me to gettogether, but after

spending the night in the hospital I was very tired. She is a good friend. It's

comforting knowing that she is not far away when I'm there alone. I enjoy her

company and her expertese in restaurants. Very, very good healthy food choices.

God Bless,

Jackie S.

From: Rosen Lum <rrosenlum@...>

Subject: RE: [ ] My recent appt at MDACC

Date: Wednesday, July 29, 2009, 2:56 PM

What a scary ordeal. This is one of those times when I wish we could all be

there in person for one of our own!

From: bethgalliart@...

Date: Wed, 29 Jul 2009 15:18:28 +0000

Subject: Re: [ ] My recent appt at MDACC

   

                 

Yikes Jackie! That does not sound like fun! I'm worried about you and hope

things stabilize....

Beth

[ ] My recent appt at MDACC

 

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I

did.  I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.

[Guest guest]

I worry more about you. Have you seen a new dr yet? I have been following your

posts. You have been given some good advice on what to do. That is what is so

great about this group. So much experience and knowledge.

Keep a positive mind and you will be okay.

God Bless,

Jackie S.

From: jackie schneider <jschneider008>

Subject: [ ] My recent appt at MDACC

groups (DOT) com

Date: Wednesday, July 29, 2009, 3:29 AM

 

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me..

[Guest guest]

Jackie,

I agree this is such a great group. I've been learning just by reading the

post. I have a lot to learn, but I'm sure I will get there.

Tonya H

>

> From: jackie schneider <jschneider008>

> Subject: [ ] My recent appt at MDACC

> groups (DOT) com

> Date: Wednesday, July 29, 2009, 3:29 AM

>

>  

>

> Dear Group,

>  

> Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

> After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

> pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

> Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

> They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

> Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

> I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

>  

> Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

>  

> God Bless you all,

> Jackie S.

>  

> P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug.

She was around 70 yrs old and has been in alot of bone pain since April. She was

on Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me..

>

>