Hi everyone
I've finally found out how to start a discussion! I have read this forum a lot over the last year or so and it has really helped me.
Keith, was diagnosed with MM in April 2012, and started treatment on CDT. Just after starting CDT, Keith had 3 vertebrae collapse so had to have an operation to insert rods and pins. 6 weeks later one of the screws came loose so Keith had another operation to fix this. He left hospital barely able to walk and on antibiotics. CTD was stopped after 3 cycles as deemed not working quick enough; Velcade was stopped after 2 cycles as it was not working; 3 cycles of DTPACE finally brought the PPs down to 14. By this time, my 6' and 15 and a half stone, muscular husband was less than 10 stone and eating very little. Consultant eventually decided to put a tube into his stomach through his nose so he could be fed that way.
Stem Cell harvest brought only 1.2 million cells but SCT went ahead anyway at the beginning of February this year with half dose Malphalan. Keith suffered all the usual side effects of SCT but got through these OK, then just as he was about to come home he got an infection in the Hickman Line which then went into his foot so he had to have an operation to clear the infection. Finally left hospital in March 2013 on large doses of antibiotics. However, at the 6 week check up in May, we were told PPs were down to 3 and not to go back for 3 months. Oh it felt wonderful. We had a short break in Devon first week in July but on the third day Keith started to feel sick. He could not walk far and was in a wheelchair by then, but we thought this was just the result of the operations. On 7th July, Keith was taken to hospital by ambulance as he couldn't move and I couldn't get him down the stairs. In A&E for hours but the doctor there was insistent (thankfully)that he had an MRI scan which showed a new lesion on his back. PPs up to 40! He then had 5 sessions of radiotherapy which seemed to do the trick with the pain and movement problem. He left hospital the day after his 65th birthday on CRD. Back in hospital on 23 July, again by ambulance as I could not get him downstairs. This time they found lesions in his hips and pelvis but said there were signs the treatment was working as PPs down to 18. 2 more operations to put pins into each hip to protect the bones. Then the Cyclophosphomide was stopped, Revlimid cut down to 1 dose per week. Dex given 2mg every day, whilst he recovered from the operations.
Keith was in hospital for a couple of weeks then sent for respite & physio for another couple of weeks. He had a Consultant appointment whilst in the respite hospital where we were told his PPs had gone back up to 34 so Revlimid was now to be twice per week + full dose Dex (40mg once per week) – still no Cyclophosphomide. Keith had to have a blood transfusion 2 weeks ago and we were told that the last PP reading was 46 (almost as when we started over a year ago). The nurse said that was OK because it was OK as long as it was under 50 – has anyone else been told this? Revlimid is now 3 times per week.
Keith is still hovering around 10 stone but weight is creeping up slowly. He says he is feeling a little better so we are cautiously optimistic that things are starting to improve again. We have a consultant appointment on Wednesday so will find out then.
Sue
bandityoga 11 years, 1 month ago.
