Hello Ann,

Dad is on his 6th cycle of CTD and has really painful fingers and toes which I think is related to the Thalidomide. His ankles and feet were also swollen but since being given water tablets are so much better. He did have a chest xray but that was all clear but reading the side effects of the steroids I think they may play a part in…[Read more]

Hi Mavis,

I'm sure your body is still recovering from all those nasty drugs and it will take a while for you to get your muscle tone back. Dad has lost loads of muscle in his legs where he is so weak most of the time and I'm sure that will take a good few months to start building that up again. I don't think dad is having a sct but this…[Read more]

Hi Jean,

I read your post to dad yesterday and he was quite relieved that how your husband described the effects of the steroids is exactly how he feels. He said he can feel them taking over his body, he agreed with the alien lol!! He had quite a good day yesterday but is on steroids this weekend and knows what's coming this week. It has to be…[Read more]

Thanks Vicky. I wish dad could get on here and chat to people who are going through the same as he is, we all sit on the side line knowing he's feeling bad but can't do anything to help. He has quite shaky hands at the moment which is made worse by the steroids and typing wasn't really his strong point before!!! I've been reading these replies to…[Read more]

Hi jean,

We have an appt with the consultant soon to discuss his response as he's nearly at the end of his 6th cycle. Was your husband really weak and lost all his muscle tone in his legs? Dad is finding it more difficult as time goes on to get around as he's so weak and tired? He's worried that it won't improve once he's off the drugs, I'm…[Read more]

Dads pp were only 0.1 when he started his treatment and now 0 but its the light chains whichever were high, 7000 and now down to 52. He has an appointment with the haemotologist on 9th oct so will know abit more then. That all sounds good to me but apparently it's the ratios that count so I need to find out a bit more about those. Dad doesn't…[Read more]

Hi Keith,

My dad is on his 6th cycle of ctd and has struggled with dex since taking it. The last couple of months he has found unbearable and has lost all muscle tone and struggles to walk a few feet even with a frame. He only just starts to pick up a bit then has to start taking them again and it's making him so miserable. He is also having…[Read more]

I'm going to make sure I ask about the ratios at his next appointment so I can understand exactly how things are going. Thanks Peter, ive printed off the info from that website and goimg to have a good read this evening.

Nicola x

He's at Medway hospital in Kent. They are all fantastic and couldn't ask for more tbh. The trials nurse is always available to talk to us and the whole team seem to take really good care of dad. It all seems to be going well but as much as I keep googling everything, it's a really difficult disease to get your head round. Dad doesn't have high…[Read more]

Thanks Tom, i'll pass on your comments and cant wait for those words "remission" !!!! xx

Thanks Phil. I think hes been reasonably lucky with the side effects….the odd bout of tummy upsets and sore fingers and toes are the main ones but the tiredness seems to be the most debilitating. Glad your doing well and look forward to the day we can say the same about dad

Nicola

Dad has made such great progress since his diagnosis. He has lytic lesions in his spine and hip which caused him severe pain which has greatly improved after radiotherapy and the chemo treatment began and hes now receiving zometa infusions once a month to help re-build the damaged bone. We have an appointment with the haemotologist soon to discuss…[Read more]

Hi Jen,

My dad was diagnosed with mm about 4 months ago and is just about to start his 4th month of chemo. He also had light chains and lyric lesions in his spine, hips and ribs. The chemo makes him really weak and tired and he's also taking thalidomide and steroids which seem to cause symptoms worse than the chemo. He gets really depressed,…[Read more]