Hi Jean,

Dad finished his 6th cycle of CTD about 6 weeks ago now and for the first few weeks he said he felt worse than when he was on the treatment. He had expected to finish the treatment and start to feel better straight away. Its only the past week or so that hes actually started to feel better and he has even managed to take the car out…[Read more]

Hi jean,

Dads been off treatment for just over 3 weeks now and felt terrible the first few weeks but seems to have started to feel better the last couple of days. His feet and legs are nearly back to normal size and he said tonight that he def feels like his legs are a bit stronger. It's still early days but he's had 2 days now, I just hope…[Read more]

Hi jean,

I forgot to mention that the consultant did prescribe dad with some water tables when they were at their worst, maybe that will help frank? They did go down but he only had a short course. His feet also look quite dry and cracked even though we keep slapping on the cream, saying that towards the end of his treatment his toes were too…[Read more]

Hi Jean,

Dad has been off CTD 3 weeks this Tuesday and was terrible the last couple of months tbh. His feet were really swollen and he felt terrible, unable to walk as he was so weak. We put it down to the steroids but ive just registered on here for the Myeloma Matters quarterly newsletter and theres a section in there on peripheral…[Read more]

Hi Mavis,

Was just wondering if you are feeling better now? Dad finished his treatment 2 weeks ago and said exactly the same as you….he feels worse now than when he was on the treatment!!! He's on his second lot of antibiotics after having a bad chest which have now given him the dreaded tummy upset and he's lost his appetite. It's so…[Read more]

Hi Amanda,

My dad is on the X1 trial and has just completed 6 months of CTD and a course of radiotherapy and now just has 4 weekly zometa infusions. Its been a tough uphill struggle but hes just starting to feel a bit better…..it seemed impossible from where he was 7 months ago!! Its horrible seeing them go through the treatment but it will…[Read more]

Hi Kerry,

I'm so sorry to hear about Melvin, its such a shock when you initially hear those words. My dad was diagnosed earlier this year after suffering excruciating back and hip pain. he has lytic lesions in his spine which showed as quite a large "hole" on the CT scan which was quite scary to see. He was also on Oramorph and zomorph but…[Read more]

Hi Kevin,

Dad has been off it all for just over a week now and today was the first day he had a bit if sparkle back in his eyes. He's far from back to normal but looking better than he did Tuesday! His blood pressure dropped and he felt really dizzy, so horrible to see after all he's been through. I've read about the side effects of withdrawal…[Read more]

Hi Megan,

My dad was on ctd and suffered PN in both his hands and feet, painful to touch and he called them "old mans hands" as they seemed to wrinkle and go a funny colour. He stopped all his treatment last week and still has the sand symptoms and his hands were freezing yesterday, even though we were in the warm. I'm not sure if they will get…[Read more]

Hi Keith,

Thank you for your reply. I think we are all so eager to see dad looking and feeling better. His last blood results were fine, haemoglobin was 11.7, which they said was good and kidney function normal. I've been looking on the Internet about the withdrawal symptoms from the steroids and that seems to cause just as many problems as…[Read more]

Hi Emma,

I was in the same place as you earlier this year. My dad was diagnosed with mm after suffering severe back and hip pain for months. They thought he had slipped a disc but it was only after being on morphine and no improvement in the pain was he sent for an MRI scan. He had lytic lesions in his hip, rib and back and oven ever seen…[Read more]

Hi Louise,

I created a spreadsheet for mum with each drug, then morning, lunchtime and evening- and how many to take. Mum just ticks it off when she gives them to him. This has also been helpful if he had any hospital visits so they knew exactly what he had and when. Its all very confusing to start with but is actually quite easy once you get…[Read more]

Hi Mary,

The consultant said it could have been caused by the chemo as it wasn't there before but apparently it is quite common and the chances of it happening increases with age. Dad is 73 so I guess we'll never know. I think even if you are on the trials the health of the patient is always priority so if Charlie is unwell I'm sure they will…[Read more]

Hi Mary,

My dad had been on CTD for 6 months and had blood clots in both his legs quite early on which they said was caused by the Thalidomide. He now has fragmin injections in his tummy every night, then a couple of weeks ago he had chest pains too and we took him to hospital to get checked. The ECG showed an abnormally fast heart beat called…[Read more]

Hi Vicky and Colin,

Dad has a chest infection and been prescribed strong antibiotics. He's not been too well all week so I'm hoping they will kick in quickly and make him feel better. We saw the consultant today and he has been pleased with his progress but could see how much he is suffering. They wanted to give him another couple of months on…[Read more]

Hi Louise,

My dad was diagnosed with Bence Jones Myeloma earlier this year and is on his 6th month of treatment and also on the X1 trial. My dad is 73 and was also fit and healthy before this horrible illness started. Dad also had the bone disease, a reading of 7000 for light chains and 0.1 paraproteins. He was initially selected for CTD on the…[Read more]

Dad mentioned today that you have sent him an email. I'm not sure if hes managed to reply but i'll be at home the next couple of days so should be able to come back to you :-). Hes got a hospital appt tomorrow for a blood test and has had a bit of a bad day today with those damn steroids!!!

Thanks again Jean

Nicola xx

Hi Ann and Pete,

They have indicated to dad they that he may need another 2 months on CTD which hes really upset about. The steroids play havoc with him, really cross, upset, angry and depressed….he said he cant do anymore. We have an appointment with the consultant next week so we'll find out a bit more then. I think he needs to go with the…[Read more]

Im used to preducative text lol!!

Thanks for your email address, its always good to be able to talk to people in the same situation. Dads email is mbba15721@blueyonder.co.uk if you wish to ask anything about Frank too. Dad is checking his emails but wont be able to type much of a reply but his "secretary" (me) will be able to answer on his…[Read more]