Hello all. I’m reaching out again to see if anyone is willing to share their experience of Elranatamab. My husband started Elra on 9 December as his 4th line of treatment. His PP were on the rise and, whilst on holiday overseas he had an uncontrollable nosebleed as a result of extremely low platelets (just 17). It wasn’t an easy start with the Elra and over the last 11 weeks, a great deal of the time as an inpatient. He’s had a couple of unidentifiable infections, needing IV antibiotics. Until the last 3 weeks, he has needed platelet and blood transfusions. We were told after cycle 1 that as there had been no response, in fact the PP had risen to 71, that the treatment would be stopped. However, our consultant then said that the data had shown that some patients do not respond until cycle 2 or beyond and so the treatment has continued. Amazingly the PP dropped to 16 and as of last week are now down to 8. This all looks wonderful from a stats point of view BUT unfortunately my husband continues to be unwell. He’s lost a great deal of weight, he is breathless, extremely fatigued (needing a couple of 2 hour plus naps every day), is now suffering with tingling legs and feet and has absolutely no desire to eat. He says that if he forces himself to eat, he then feels sick. So currently he has completed 8 of the 24 weekly treatments. We are aware that after week 24 the treatment will switch to every other week. We appreciate that this is a new treatment and that every Myeloma patient is different, but I wondered if there’s anyone out there who perhaps did struggle in a similar way at the beginning but has got beyond that and is feeling well. Thank you.
