[Pickle2024Participant]

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 trial, which is chemo, steroids and thalidomide. He doesnt have many problems with the chemo, the thalidomide has made his fingers and toes painful but its the steroids that cause most of the problems. They make him very tearful and weak and says that he has no control over his body. He finds it really difficult to walk and getting out of a chair is an effort. He also has to have an infusion of zometa once a month which gave him flu like symptoms and pain in his bones. Apparently, this should get easier the more he has. After saying all that, dad is no longer in pain with his back, his paraprotein levels are now 0 and his light chain levels are 52. The treatment is hard but works so stick with it. If you need to ask anything else, please do so as I know how you are all feeling right now. I wanted to know everything and spent hours on the internet, where as dad didnt really want to know. I think knowing about Myeloma makes you feel more confident about the results of the treatment.

Take Care

Nicola xx

[Pickle2024Participant]

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

[Pickle2024Participant]

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 professionals advice, they know what they are doing. As much as we hate seeing him go through all this, we also want him better and for as long as possible! Dad isnt having SCT so we have to make sure his levela are as low as possible. It does help hearing that other people are experiencing the same symptoms, makes it a bit more "normal" I guess. Hope all goes well for you both, not long to go now

Nicola xx

[Pickle2024Participant]

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 behalf lol! He gets great comfort from hearing what other people are going through and it is all "normal".

His main question is "when and if he will be able to drive" once his treatment has finished. I'm not sure how long it takes for the drugs to get out of the system and muscle tone to build up again. Dads not having a sct as far as we know so as long as his blood results are all ok he will find out if he is to go on maintenance.

Love to you both

Nicola x

[Pickle2024Participant]

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 that too. Dad was told to report all side effects so its always worth checking with the consultant. Hope ur feeling better soon x

[Pickle2024Participant]

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 treatment is getting his light chain levels down. Did they take you off the treatment gradually and over how long? I've read that you need to come off the steroids slowly or you can get side effects from that too? I hope you manage to get to the bottom of your tiredness, it must be so upsetting after waiting all that time. Take care

Nicola xx

[Pickle2024Participant]

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 done and hopefully were nearly at the end, so were keep peddling!!! Thanks again

Nicola xx

[Pickle2024Participant]

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 him which has made him feel a lot better knowing it's not just him. It's an uphill struggle but he's a strong person and we will get him through this. Thanks for taking the trouble to reply, it really helps.

Nicola xx

[Pickle2024Participant]

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 sure it will but take some time. I just keep thinking we must be nearly there now!!

Nicola x

[Pickle2024Participant]

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 really understand all the medical terms as he's so busy trying to cope with the treatment and getting better so I try and study up on everything so I have some understanding of what's going on. I think if he can cope with the next couple of months to get the best results that will be good but he's feeling so terrible he doesn't know if he can. It's easy for us all to say "it's only 8 weeks" when he's so weak and low but we want the best for him. Maybe they will look at the dose next time, fingers crossed x

[Pickle2024Participant]

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 problems with high blood sugar levels which is being controlled with metformin. The hospital have now mentioned they would like him to have another 2 months worth of treatment which he is dead against, as u can understand. It's terrible watching him suffer and can't wait for it to all finish and for him to get a bit more energy. I hope your feeling a bit better now too

Nicola xx

[Pickle2024Participant]

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

[Pickle2024Participant]

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 para proteins but had high light chains but they said its the ratios that count…..mmmmm confusing. I like to know everything about everything, knowledge is power and all that!! Xx

[Pickle2024Participant]

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

[Pickle2024Participant]

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

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