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

Sofie's Story

I  have had a type non-Hodgkins lymphoma called Small Lymphocytic Leukemia (NHL/SLL) since 4/97.  My only symptom was enlarged spleen  In 2/03, I was also diagnosed with MALT/Parotid (another type of NHL). 

My only treatments have been with Rituxan, alone. First four regular doses in Nov. '98 (lots of reactions) and one dose in Jan. '01, which resulted in severe hives/hospitalization for four days. I have had many mini-doses of Rituxan since 10/02 - see signature below.

I have had a very large spleen (20 - 24 cm) all this time. It would fluctuate with treatments but always enlarge again. I asked my onc if it was possible for the spleen to be H-P positive even though blood was negative. Of course, he said no. But, something kept nagging at me about the spleen and the MALT being connected, and I thought MALT had a high percentage of H-P positive. 

In 4/04, I saw a surgical oncologist. in reference to my spleen and he said it was so dangerously enlarged (for my size) that it should come out immediately. So, in 5/04 I had my spleen removed. Within weeks of the surgery, the MALT/Parotid had  disappeared. It is now not palpable at all - like it was never there - and it had been quite large and swollen. Not only that, the nodes inside my cheek have become much smaller and a swollen spot in a vein on my neck has gone back to normal. None of these areas had this response to my treatments before spleen removal and I haven't had any treatment since the removal. But, I can't understand how removing the spleen would have had such drastic results on the MALT lumps unless everything had a common thread. My question: Is it possible for H-P to be negative in blood but be present in an organ? 

I also wonder if spleen removal (if enlarged) shouldn't be a first treatment option in some of these NHL types. 

Note the allergic reactions I had to rituxan in my signature below. I think is important for people who have had problems with allergic reactions. It proves that it is still possible to have successful treatment with Rituxan but that the premeds and delivery are "everything."

My best to all of you,


dx 4/97 SLL, Ritx-4 11/98, 
1/01 Ritx-1 (hosp. 4 days w/hives)
10/02 Ritx test dose (50 mg/4 hrs) - reactions included vomiting, high fever/blisters all over mouth.
10/02 Ritx test dose #2 (50mg/4hrs) - no reactions of any kind
11/05/02 Ritx #3 - supposed to be 375mg - didn't happen - more reactions this time
11/9/02 Ritx 50mg w/Demerol 3 hours
11/11/02 Ritx 100mg w/Demerol 3 hours - no reactions
11/12/02 Ritx #4 - actually got 3/5 of a dose - took 9 hours - had to stop twice 
11/13/02 Ritx 200mg - 6 hours -- only rec'd 175mg because of major reaction
11/22/02 Ritx #5 - 200mg, 7+ hours
1/20&23/03 Ritx 100mg/rate of 18 - no reactions except flu-like aches at home
2/5/03 Ritx 200mg - no reactions
2/7/03 Ritx 200mg scheduled - only 175 given because of reactions
2/14/03 FNA Parotid lump - appears to be MALT
3/18/03 Rituxan 200mg w/40mg Decadron - no problems
3/21/03 Rituxan 200 mg - only got 175. No Decadron beforehand - reactions 
3/25/03 Rituxan 200mg w/40mg Decadron - no problems
4-8-03 Still doing the same treatment as above, 200mg twice/wk. but the tiniest glitch in the administration of the meds throws me into a rash
5-13-03 Rituxan, second round of four, completed. Infusions went well, no 
major reactions because of our new plan giving second set premeds @ 2.5 hours 
7-10&11-03 Rituxan 250mg in four hours both days - no problems. Still use 20mg Decadron the night before each treatment.
8-04-03 - Rituxan 250mg - no problems
8-14-03 - Rituxan 250mg - infusion went into arm instead of vein - what a disaster to happen the day before our trip to Salt Lake. VERY painful and swollen. Then the bruise from elbow to finger tips.
9-4-03 & 9-11 Rituxan 300mg in five hours - no problems (20mg Decadron night before)
9-16, 9-18,10-23,10-30-03 same treatment as above
11-7-03 300mg; 11-14-03 350mg @ 125 rate. almost got it all before rash began
11-19-03 to 4-30-04 300mg
5-24-04 Splenectomy - Parotid MALT disappeared after surgery 

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