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?