PTLD

[summer732]

Hi all,

Has anyone been diagnosed with PTLD? About two weeks ago I started to have difficulty swallowing. I had a Barium swallow test done and they saw something on my esophagus. After that I went to a GI doctor and had an endoscopy. They found and ulcer and the pathology report showed that it was caused by PTLD associated with the EBV Virus. Has anyone experienced this? Any stories, advice, anything is helpful.

Right now we lowered my immunosuppression. I'm trying to schedule a CT Scan of my chest to make sure there is no lung or abdomen involvement. Then I have an appointment with a PTLD specialist on Thursday.

Thanks guys!

 

[summer732]

Hi all,

Has anyone been diagnosed with PTLD? About two weeks ago I started to have difficulty swallowing. I had a Barium swallow test done and they saw something on my esophagus. After that I went to a GI doctor and had an endoscopy. They found and ulcer and the pathology report showed that it was caused by PTLD associated with the EBV Virus. Has anyone experienced this? Any stories, advice, anything is helpful.

Right now we lowered my immunosuppression. I'm trying to schedule a CT Scan of my chest to make sure there is no lung or abdomen involvement. Then I have an appointment with a PTLD specialist on Thursday.

Thanks guys!

 

[summer732]

Hi all,

Has anyone been diagnosed with PTLD? About two weeks ago I started to have difficulty swallowing. I had a Barium swallow test done and they saw something on my esophagus. After that I went to a GI doctor and had an endoscopy. They found and ulcer and the pathology report showed that it was caused by PTLD associated with the EBV Virus. Has anyone experienced this? Any stories, advice, anything is helpful.

Right now we lowered my immunosuppression. I'm trying to schedule a CT Scan of my chest to make sure there is no lung or abdomen involvement. Then I have an appointment with a PTLD specialist on Thursday.

Thanks guys!

 

[summer732]

Hi all,

Has anyone been diagnosed with PTLD? About two weeks ago I started to have difficulty swallowing. I had a Barium swallow test done and they saw something on my esophagus. After that I went to a GI doctor and had an endoscopy. They found and ulcer and the pathology report showed that it was caused by PTLD associated with the EBV Virus. Has anyone experienced this? Any stories, advice, anything is helpful.

Right now we lowered my immunosuppression. I'm trying to schedule a CT Scan of my chest to make sure there is no lung or abdomen involvement. Then I have an appointment with a PTLD specialist on Thursday.

Thanks guys!

 

[summer732]

Hi all,
<br />
<br />Has anyone been diagnosed with PTLD? About two weeks ago I started to have difficulty swallowing. I had a Barium swallow test done and they saw something on my esophagus. After that I went to a GI doctor and had an endoscopy. They found and ulcer and the pathology report showed that it was caused by PTLD associated with the EBV Virus. Has anyone experienced this? Any stories, advice, anything is helpful.
<br />
<br />Right now we lowered my immunosuppression. I'm trying to schedule a CT Scan of my chest to make sure there is no lung or abdomen involvement. Then I have an appointment with a PTLD specialist on Thursday.
<br />
<br />Thanks guys!

 

[Joanne]

Margaret,

Sorry to hear that PTLD is rearing its head. I think most people get the symptoms a year after tx. Did they do a blood test? My sister had it, they lowered her immune suppression and in about a year it was gone.

Where is the PTLD specialist?

Joanne Schum

 

[Joanne]

Margaret,

Sorry to hear that PTLD is rearing its head. I think most people get the symptoms a year after tx. Did they do a blood test? My sister had it, they lowered her immune suppression and in about a year it was gone.

Where is the PTLD specialist?

Joanne Schum

 

[Joanne]

Margaret,

Sorry to hear that PTLD is rearing its head. I think most people get the symptoms a year after tx. Did they do a blood test? My sister had it, they lowered her immune suppression and in about a year it was gone.

Where is the PTLD specialist?

Joanne Schum

 

[Joanne]

Margaret,

Sorry to hear that PTLD is rearing its head. I think most people get the symptoms a year after tx. Did they do a blood test? My sister had it, they lowered her immune suppression and in about a year it was gone.

Where is the PTLD specialist?

Joanne Schum

 

[Joanne]

Margaret,
<br />
<br />Sorry to hear that PTLD is rearing its head. I think most people get the symptoms a year after tx. Did they do a blood test? My sister had it, they lowered her immune suppression and in about a year it was gone.
<br />
<br />Where is the PTLD specialist?
<br />
<br />Joanne Schum

 

[summer732]

We got a whole lab work up done yesterday, so I'm waiting for those results. But it was diagnosed through a biopsy. It's strange to me that it presented as an ulcer.

The PTLD specialist is at UPenn where my lung team is.

From what I gather, for most patients this goes away with a little tampering of the meds which I'm hoping is the case for me!

The pain from the ulcer has not been fun to deal with at all!

 

[summer732]

We got a whole lab work up done yesterday, so I'm waiting for those results. But it was diagnosed through a biopsy. It's strange to me that it presented as an ulcer.

The PTLD specialist is at UPenn where my lung team is.

From what I gather, for most patients this goes away with a little tampering of the meds which I'm hoping is the case for me!

The pain from the ulcer has not been fun to deal with at all!

 

[summer732]

We got a whole lab work up done yesterday, so I'm waiting for those results. But it was diagnosed through a biopsy. It's strange to me that it presented as an ulcer.

The PTLD specialist is at UPenn where my lung team is.

From what I gather, for most patients this goes away with a little tampering of the meds which I'm hoping is the case for me!

The pain from the ulcer has not been fun to deal with at all!

 

[summer732]

We got a whole lab work up done yesterday, so I'm waiting for those results. But it was diagnosed through a biopsy. It's strange to me that it presented as an ulcer.

The PTLD specialist is at UPenn where my lung team is.

From what I gather, for most patients this goes away with a little tampering of the meds which I'm hoping is the case for me!

The pain from the ulcer has not been fun to deal with at all!

 

[summer732]

We got a whole lab work up done yesterday, so I'm waiting for those results. But it was diagnosed through a biopsy. It's strange to me that it presented as an ulcer.
<br />
<br />The PTLD specialist is at UPenn where my lung team is.
<br />
<br />From what I gather, for most patients this goes away with a little tampering of the meds which I'm hoping is the case for me!
<br />
<br />The pain from the ulcer has not been fun to deal with at all!