66 year old man in the UK, diagnosed with SMZL about 5 years ago, been going to hospital reguarly at 6-monthly intervals, next outpatient appointment March 2019. Just developed a short episode of what seems like costochondritis, mostly resolved, but at the time as is known did mimic heart attack (myocardial infarction). Since the costochondritis, now have developed breathlessness, what I would call catchy breathe, difficulty in breathing for most activities, the catchy breathe is mostly from lower in the abdomen if that makes sense, not so much in the chest, although still difficult in chest. GP has done bloods and suspects anaemia (anemia) so I wonder if this is going to need a transfusion of some kind, GP said it may need that so hoping the Hb levels are not very low. I wish there were immunology trials for SMZL involving stem cells?
Seems ridiculous almost that one should have to watch and wait in the 21st Century. Doctor's keep looking for swollen lymph nodes to appear, but don't they know SMZL is rarely associated with lymph nodes, well that is what I learnt as one Aussie Cancer Website, I don't really want to be waiting for lymph nodes to enlarge/swell before I start treatment makes no sense whatsover. Any advice from any one in similar situation, please?
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raythepaint
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Hello raythepaint, I’m sorry you’re struggling with SMZL. I was diagnosed with it in 2014 and was started on IV treatment with Rituxan right away. My spleen was the size of a football, I was anemic and had enlarged lymph nodes throughout the chest and abdomen. Diagnosis was made through blood work, CT scans and bone marrow biopsy. I had four rounds of Rituxan, one a week for four weeks. Following that I had maintenance treatment with Rituxan every two months for a year, then every three months for another year. I am in remission and have had good blood work ever since. I still see my oncologist every six months for a check up and blood work.
I’m not sure about the breathing issues you’re having, but certainly ask your doctor. Do you have to wait until March to see him? An enlarged spleen can make one very uncomfortable, perhaps that is happening to you.
Hi , I suggest that you consult another doctor. I was diagnosed with IV stage MALT in 2011 (December) . I got Ritoxan and Bendamustine for six months ,(once a month ). I was in remission for 5 years . And in 2016 it started all over again. Because my remission was quite long ,my doctor at this time decided that he will give me the same “ cocktail” again . This time it didn’t work . I was fine for 5 months and then my lymphoma came back with vengeance.After failed immunotherapy , I began Ibrutinib regimen a little bit over 2 months ago. So far so good . All the values in blood are going up and are now close to minimum normal. Marginal Zone Lymphoma is rare and unfortunately there is no specific treatment for it . Ibrutinib seems to work well on MZ especially for a treatment naive patient like yourself.If I were you I would ask for a second opinion. I have learned from my mistakes and always consult with another oncologist .
Hi, I have been diagnosed as Sll and/or enmzl or smzl lymphoma after 2 CLL specialists and pathology opinions. Started with spleen 23 cm and recently exploding numerous large nodes and nodules in lungs and other sites. There were no palpable nodes other than spleen and I felt fine. Have you had scans to check for internal nodes? To date 6 treatments of obinutuzumab and significant reduction. Two more treatments to go. However, lung nodules now at 2 cm so may need another treatment after. Treatment cleared out pelvis, parotid glands, one thyroid, spleen down to 12 cm and lung nodes and nodules went from 3 cm to 2 cm. Based on what I have read, obinutuzumab is a better drug than rituxan. Have had no side effects to date. Would love to join with other marginal zone patients for support, knowledge, more treatment and trial options. Good luck.
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