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?
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.
Please keep me posted.
Best,
Andi