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Barry's  Story

Barry Pollock, 50 years old at start of treatment, Brisbane, Australia.

Diagnosed low grade B cell NHL in my bladder, July 2001 after my urologist removed a growth taking up approximately a third of the right side of my bladder and extending into my abdomen.  Bone marrow biopsy showed no NHL involvement but showed symptoms of Systemic Mastocytosis.

The urologist referred me to a hematologist who put me on 6 courses of CNOP protocol initially.  This dramatically reduced the lymphoma on the right side of my bladder but a lymphoma came up on the left side of my bladder and increased in size.  Bone marrow biopsy still clear of NHL and Mastocytosis was not evident after chemo. 

January 2002: He then put me on the ESAP protocol - high dose chemo with stem cell harvest and transplant.  Prior to treatment, bone marrow biopsy shows return of Mastocytosis.  Scans following this treatment showed nothing remaining. However, the urologist went in to examine the bladder and took a biopsy of an area of thickening on the left side that turned out to still show lymphoma remaining.

October 2002:  I had 4 weeks of Mabtheria antibody treatment.

December 2002:  I had 22 daily doses of radiation treatment.

April 2003:  Bone marrow biopsy shows Mastocytosis returned no sign of NHL evident.

July 2003:  Gallium scan and check by urologist still shows no signs of NHL.  Next check January 2004.  I have questioned specialist re follow up course of Mabtheria and am currently waiting for his reply.

From my research this type of lymphoma is a rare one.  One site recorded only a hand full of bladder lymphomas in the whole of North America, all stage 1 and all in complete remission after radiation treatment.  Lymphoma in the bladder represents approximately .2% of all bladder cancers.  Another site states that there are less than 100 recorded cases in English literature with women getting the condition more than men on the ratio 6:1 and mostly associated with cystitis although not in my case.

My hematologist thinks that there may be a link between the Mastocytosis and the NHL although this is doubtful seeing that I have had symptoms of the Masto for approximately the last 15 years or so and people with masto usually get NHLs in the GI tract. 

He also thinks there is a possibility of there being a HP type bacteria infection in the bladder that may have caused the problem even though I have tested negative for HP.  I have seen a specialist re this and he has found a couple of cases like mine that tested negative also but the patients were given HP antibiotics and the tumours disappeared.   This will be my next course of action if the NHL returns.

 

 
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