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 for a run…..havent seen him so smiley in a long time. Hang in there, it takes a while for the drugs to get out of the system and muscles to start to recover. It seems such a long time but will be worth it. The consultant said not to rush things and build up strength gradually. I hope Frank starts to feel better soon
Nicola xxx
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 this is the turning point!! I know frank has suffered terribly with the side effects the same as dad and you think things are never going to get better. Your nearly there now with the ctd so hang in there and I'm sure it will start to get better soon
Nicola xx
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 sore to touch due to the neuropathy. They are gradually improving too but only slowly.
Nicola xx
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 neuropathy and lots of his symptoms seem to come under that, who knows!! We keep saying it could be this it could be that but I think its the overall concoction of drugs going in. He completed 6 months and they wanted him to continue for another 2 as he was still responding, but his body couldnt take anymore, He had a chest infection and could hardly get out of the chair! We were a bit optomistic that as soon as the drugs stopped he could be back to normal but 3 weeks on and hes still quite weak and had various different things going on but is noticing an improvememt in his general health each day. Fingers crossed it continues.
I hope Frank feels better soon xx
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 upsetting as he couldn't wait to finish so he would feel better. Just wondered how long it took you to start feeling a bit better?
Thanks
Nicola xx
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 be worth it in the end
Nicola xx
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 neither seemed to help with the pain. He was in hospital for 2.5 weeks before being diagnosed. They started iv bisphosphonates very early on and he had a course of radiotherapy on his back before starting 6 cycles of ctd. He now only suffers from a slight ache in his back and all his blood has improved. Unfortunately hes only been off his treatment for a week and still very weak and suffering from a few withdrawal side effects. It seems impossible to see a light at the end of the tunnel and its very scary seeing someone you love in so much pain but the treatment does work and it will get easier. Ive not long found this forum and like to hear from other people and their experiences so I know what dad is going through is "normal". Everyone seems lovely on here and I wish I found it earlier.
Hope Melvin is feeling a bit better
Nicola x
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 and no wonder he feels bad. I just hope each day he starts to get a bit stronger as he's still very weak and walking with a frame. Thank you for letting md know how u felt, it's always encouraging hearing it from someone whose been through the same thing. I read all these comments to dad just to let him know he's not alone with all these awful side effects. I hope he's string enough soon to be able to join in, I think it will help him.
Hope ur feeling better soon too. Take care
Nicola xx
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 better as time goes on as its only been a week…..I'll let you know. Dad has also gone for for the full on MM experience (as Dai so nicely put it) and has had every side effect going. Hopefully things will start to improve soon!!!
I hope your husband feels better soon
Nicola xx
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 they do when your taking them!!! Dad is still so weak and tired, but I guess his body has had a lot to deal with lately. He hasn't been out for a few weeks due to his bad chest but we did manage to get him out for a few hours yesterday, just for a bit of fresh air and change of scenery as I think sitting around indoors too long can make him a bit depressed. He did enjoy it but was totally exhausted by the time we got home and had to sleep.
Thanks again Keith. I'm hoping dad will start to feel better soon and be able to join in on this forum. I think it would help him to talk to other people who know exactly how he's feeling and that he's not alone. We all sit there telling him the way he's feeling is "normal" but to hear it from other people may help. I've had a chat with the myeloma nurse on the info line who was really lovely and I've given her number to mum and dad and told them to speak to her too. I'm sure the emotional side to all this is just as powerful as the drugs and it definitely helps to talk about things.
Anyway, I hope your not feeling too bad on your next course of steroids, horrible things!!! I will read this post to dad and hope it reassures him a bit
Take care
Nicola xx
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 anyone in
So much pain, it was awful. He's since had a weeks radiotherapy on his back and competed 6 months on ctd and is no longer in pain. My dad is 73 and I can't say he found the treatment a walk in the park……steroids are the worst and made him tearful, cross, emotional and drained!!! Thalidomide made his fingers and toes really sore and the chemo didn't really affect him much. His haemoglobin was 7 when he started and now nearly 12, his light chains nearly 8000 and last reading was 52 so it does work :-). I found it helpful to know as much as possible as mm so you know what to ask when seeing the consultant. I really hope your mum is feeling a bit better, a bit of a journey ahead but it will be worth it!!!
Take care and love to you both
Nicola xx
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 into a routine.
Nicola xx
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 give him long enough to recover or change the treatment. Dad was so weak yesterday he could only just stand up, let alone walk. He's had every side effect going and has got gradually worse as the treatment has gone on. Luckily his levels have gone done quite a bit so hopefully all is well. He only stopped the drugs yesterday so we don't know how he will be once they are out of his system. Was Charlie really weak before he stopped them? I hate them too and just want my "old" dad back :-(. Nasty treatment but no other options…..stick with it as everyone says there is a light at the end of the tunnel, it just seems a long way off at the moment
Nicola xx
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 atrial fibrillation. He was given som heart pills and it seemed to slow it down. We saw the consultant yesterday and hes been taken off all chemo the allow his body to recover. I know how you feel as it seems like one thing after another. dad now has a chest infection and on strong antibiotics. we were told dad will stay on the trials all the way through as this is how they monitor the results of the drugs so I assume you will too. I hope you get sorted soon
Nicola xx
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 ctd but don't think his body will cope so he's taken him off all treatment to allow his body to recover. His light chains were down from 8000 to 52 last month, unfortunately he didn't have the results from his last blood year and urine sample. His pp are 0 but were only 0.1 when he started. He was admitted to hospital 2 weeks ago with chest pain and was diagnosed with atrial fibrillation so I guess that's his body's way of telling him that's enough. Dad is really pleased so were just hoping he will be able to get some energy back and be able to walk abit more than he can at the moment. He's not having a sct and were not sure if he's going onto maintenance, I assume we're hear from them soon. In the meantime he's having monthly appts and blood tests to monitor him. Everything crossed he will start to feel better quickly.
Thanks for asking about him. It is all a worry but good to hear from other people going through the same.
Take care
Nicola xx
