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 haematologist 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 [aka Rituxan] 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 haematologist 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.
Good question - He hit my NHL heavy because he was aiming for a cure - whether he has been successful or not I won't know for 10 years or so.
As described, he started with the modified CHOP (CNOP _ the 'N' drug whatever it is being kinder on the heart not that I had any heart problems) because that was the standard practice 2 years ago. The NHL I had was fairly bulky for where it was. I had 6 courses 3 weeks apart - nowadays I would be most likely looking at 2 week intervals with Mabtheria added for good measure. I had scans at 4th chemo and the NHL on my right side had greatly reduced but not disappeared. I had two more chemo and a scan showed a new NHL appearing on the left side (confirmed by cytoscopy biopsy). This indicated that the NHL had mutated to a somewhat more aggressive type that was no longer sensitive to CNOP drugs. Handled the CNOP drugs fairly well although alergic reaction occurred on first chemo due to my Masto problem.
Specialist suggested ESAP protocol taking into account my age (only 51 at the time compared to avg 60+ for NHL patients), my general good health and the chance of there being a cure (>50%). I did a lot of research at the time and this seemed a fair approach. ESAP was rough going - especially the last high dose job and stem cell transplant - I didn't eat a thing for 3 weeks and it took me around 8 weeks before I had a sick free day. The only side effects now is some numbness under my toes. Knowing what I know now I would still go through it all again if I had to. I still have around 5 million of my stem cells on ice.
It didn't work - that is when we started to look at other options. By the way, one option was to remove the bladder altogether (last resort stuff). The H Pylori debate was just starting to kick of at the time and there was a suggestion that the NHL could have been caused by a H Pylori type bacteria that had not been discovered yet. Now days they seem to give HP antibotics for all types of NHL not just gastric - the other day I read about someone with breast MALT trying it. If I knew 15 months ago I may have given it a go before ESAP. I saw an infectious diseases specialist to discuss the HP option - he is the one that ordered the tests and they came back HP negative. He did some research and said he found a couple of cases the same as mine where the patients where HP negative and they gave the antibotics anyway and the tumors in the bladder disappeared. I don't know where he found them but so far I have not been so lucky.
At that time we discussed radiation treatment. My haematologist was concerned that such treatment could do more harm than good. He referred me to a radiation oncologst that considered that it would be worth a go and that the level of radiation used was fairly low and would not likely cause major damage to other organs. I gave it a go and it was quite easy to take - very little discomfort whatsoever. Just before the radiation treatment I was given a 4 week course of Mabtheria. No tests were done between the two to determine its effectiveness. At the moment I am discussing whether it would be appropriate to have a top up course of Mabtheria for good measure.
7 months on and test etc show that I am now in complete remission - I hope I stay that way - feeling confident.
I know I have burnt a lot of bridges but considered that the greater than 50% chance of being cured was worth it. With the advances in treatment these days, if things come back or show up elsewhere, I'm confident that there will be something else to try.
For more info on Masto I suggest you see the following site:
Systemic Mastocytosis is in the same hen's teeth category as my NHL. It definitely is a cause of NHL although I doubt it is in my case - still arguing with my haematologist on this one. Some of the symptoms of the condition I have had for 15+ years - I doubt that my NHL has been around for that long. The Masto NHL's are more in the Gastro Intestinal tract lymph nodes and the liver and spleen. Currently I have no GI problems - only the elevated liver enzymes.
I have tried to find out as much info on my conditions from day one as I can (in fact I got onto a computer at the hospital the night I was told by my urologist) - I have found out that specialists don't know everyting and most don't have the time to do the research, hence I do it for them. Another thing I found out is the lack of communication between specialists can be quite frustrating at times, even though in some cases they work together. It pays to have a bit of knowledge because you definitely get a bit more respect.
Written by Barry Pollock © 2003
Updated 7-30-2003
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