CML DX

My friend was DX with CML in 2006.  He started on Gleevac in a clinical trial with a higher than normal dose.  Almost immediately he developed an overall body rash, (except on his face) with intense itching, a high eosinophil count and a small pleural effusion. No tx seemed to be affective for this rash  and the small effusion persisted for over a year.  Eventually Sprycel became FDA approved and he started on this drug. After some tweaking of the dose, things seemed to be wonderful and in fact his recent molecular break down demonstrated excellent control of the CML.  He is due for a bone marrow within the next 2 months.  Unfortunately last week he developed SOB and an xray revealed that he had a 75% effusion in the left lung and they drained off 2 liters of fluid. An xray done within 48 hours of the thoracentesis demonstrated more fluid accumulation already. My questions are:

1~ has anyone experienced this intense rash as a side effect of gleevac?

2~ if so was there any tx that worked for you

3~ Has anyone developed an effusion that was tx related?

4~ if so, how  severe and how often do you have to have them drained

5~ if you did develop a pleural effusion, did you have fluid build up around your heart!

6~ is anyone aware of any other drug out there on the horizon found to be succesful in the tx of CML? 

Thanks for your help.

On 4/10/2008 babypillar wrote:

My friend was DX with CML in 2006.  He started on Gleevac in a clinical trial with a higher than normal dose.  Almost immediately he developed an overall body rash, (except on his face) with intense itching, a high eosinophil count and a small pleural effusion. No tx seemed to be affective for this rash  and the small effusion persisted for over a year.  Eventually Sprycel became FDA approved and he started on this drug. After some tweaking of the dose, things seemed to be wonderful and in fact his recent molecular break down demonstrated excellent control of the CML.  He is due for a bone marrow within the next 2 months.  Unfortunately last week he developed SOB and an xray revealed that he had a 75% effusion in the left lung and they drained off 2 liters of fluid. An xray done within 48 hours of the thoracentesis demonstrated more fluid accumulation already. My questions are:

1~ has anyone experienced this intense rash as a side effect of gleevac?

2~ if so was there any tx that worked for you

3~ Has anyone developed an effusion that was tx related?

4~ if so, how  severe and how often do you have to have them drained

5~ if you did develop a pleural effusion, did you have fluid build up around your heart!

6~ is anyone aware of any other drug out there on the horizon found to be succesful in the tx of CML? 

Thanks for your help.

Hi:  I wish your friend well in his future bone marrow transplant.  There are so many things that could have caused his problems. You did not say how old he is, or why they started him on a higher dose.  The basic dose has been 400Mg. OD, but in cases of accelerated or blast phase a larger dose was prescribed.  I myself have been on the 400MG. dose since day one which was Oct. of 2000.  Anything strong enough to kill cancer will have some type of side effect.  My side effects have been fatigue, leg cramps, and mostly minor problems.  I do know someone who is on Sprycel, and she is doing very well.  New treatments are coming up everyday in the fight for Leukemia as well as other cancers.

Just keep the faith that all will turn out well.

                                                     God Bless You

                                                                Suzzie

Suzzie,  Thanks for the response.  My friend is in his early 60's and had already had his kidney removed for renal cancer.  (no mets from that was noted)  The clincial trial was at RPCI and they were trying to discover if the rate of cure and and length of control would be greater on 800 instead of the 400. The Sprycel actually has afforded him a greater molecular control than the 800 mg of Gleevac.  Since my last post here he has started on a diuretic...(not a great drug for someone with one kidney, but then neither is a chemo drug, is it) and switched his BID dosing to QD and his xray shows marked improvement of the effusion.  So everything is on hold and we will continue to monitor the bloods and CXR's  Thanks for the prayers and blessings.  Same to you.

On 4/24/2008 Suzzie59 wrote:

 

On 4/10/2008 babypillar wrote:

My friend was DX with CML in 2006.  He started on Gleevac in a clinical trial with a higher than normal dose.  Almost immediately he developed an overall body rash, (except on his face) with intense itching, a high eosinophil count and a small pleural effusion. No tx seemed to be affective for this rash  and the small effusion persisted for over a year.  Eventually Sprycel became FDA approved and he started on this drug. After some tweaking of the dose, things seemed to be wonderful and in fact his recent molecular break down demonstrated excellent control of the CML.  He is due for a bone marrow within the next 2 months.  Unfortunately last week he developed SOB and an xray revealed that he had a 75% effusion in the left lung and they drained off 2 liters of fluid. An xray done within 48 hours of the thoracentesis demonstrated more fluid accumulation already. My questions are:

1~ has anyone experienced this intense rash as a side effect of gleevac?

2~ if so was there any tx that worked for you

3~ Has anyone developed an effusion that was tx related?

4~ if so, how  severe and how often do you have to have them drained

5~ if you did develop a pleural effusion, did you have fluid build up around your heart!

6~ is anyone aware of any other drug out there on the horizon found to be succesful in the tx of CML? 

Thanks for your help.

Hi:  I wish your friend well in his future bone marrow transplant.  There are so many things that could have caused his problems. You did not say how old he is, or why they started him on a higher dose.  The basic dose has been 400Mg. OD, but in cases of accelerated or blast phase a larger dose was prescribed.  I myself have been on the 400MG. dose since day one which was Oct. of 2000.  Anything strong enough to kill cancer will have some type of side effect.  My side effects have been fatigue, leg cramps, and mostly minor problems.  I do know someone who is on Sprycel, and she is doing very well.  New treatments are coming up everyday in the fight for Leukemia as well as other cancers.

Just keep the faith that all will turn out well.

                                                     God Bless You

                                                                Suzzie