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Patients Against Lymphoma

 

Support > Patient-to-Patient > Patient Experiences & Guidance

Bendamustine overcomes Refractory NHL

I have not posted for a long time, but wanted to share my story.  I am a 43 year old female diagnosed with follicular lymphoma (Grade 1, stage 4, over 50% bone marrow involvement) in September 2002.  After many months of agonizing over whether to do the NCI vaccine trial (PACE + vaccine) or the Genitope vaccine trial (CVP + vaccine), I went with the Genitope trial. 

I had CVP from April 2003 -August 2003.  Much to my dismay, I progressed through the CVP.  I then decided to enroll in the Genitope rollover trial in February 2004 (rituxan + vaccine -- you definitely receive the vaccine because there is no placebo).  I progressed through rituxan as well and, therefore, I once again did not receive the vaccine.  At this point, I decided to opt for a very aggressive chemo called ICE.  My hope was to get into remission from the ICE and then receive the vaccine under a "compassionate use" theory since Genitope still had my unused vaccine. 

After my second cycle of ICE (June 2004), I ended up in the ICU with a severe neutropenic infection.  I remained in the hospital for over a month, and at one point had zero neutrophils (for close to two weeks) and was told the neutrophils may never come back.  I somehow pulled myself together, recovered and left the hospital in time to celebrate my 13 year old daughter's bat mitzvah (I also have ten- year old twin daughters) which was a truly wonderful occasion. 

I did not achieve even a partial remission with ICE, although there was some shrinkage of my lymph nodes.  My bone marrow involvement was now over 80% and I needed to find another treatment.  Shortly thereafter, I entered a phase II clinical trial for a promising chemotherapy drug called Bendamustine.  After finishing six cycles, I achieved a complete remission! 

After completing the Bendamustine treatment in late April 2005, I went on to receive the vaccine in June 2005 through enrolling in a new arm of the Genitope trial created for roll-over failures.  My vaccine had at that point been frozen for about 1 1/2 years!  I received the vaccine right after the Bendamustine and received a total of 8 vaccinations (one vaccine every two weeks).

It has been over two months since I completed the vaccine and I continue to be in remission as of my CAT scan yesterday.  I wanted to share my wonderful news and hope that by sharing my story it will give hope to others.  I am hopeful that Bendamustine will be approved in the near future by the FDA. 

~ CH

 

 
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