[tmcintyreParticipant]

Thanks Kevin

Yes, we were told it is very treatable.  Thank you very much for telling me how its been for you and its reassuring to know you are still positive. At the moment we feel like there’s no end to the treatment but I can see there will come a time when he will be in remission.

Teresa

[tmcintyreParticipant]

Hi Annlynn,

 

Thanks so much for your reply. Yes it does help to know that most people have been through it.  How do you feel about going through the treatment again? Can they predict how long your remission will be or is that a silly question, I haven’t liked to ask the consultant.

Teresa

[tmcintyreParticipant]

My husband had back pain before the treatment started, his consultant gave him liquid Morphine.  The pain has eased.  He was signed off work for the first 3 months thankfully because he does get very tired and although he is back doing two mornings a week he has a nap when he gets home. He also has hot flushes, its quite funny when we synchronise (mine are due to my age)

[tmcintyreParticipant]

My husband was constipated for 5 weeks and was the start of investigations.  It was a horrible time and was quite a relief to get a diagnosis so that treatment could start.  As you say Annmarie – we will get through this and come out stronger.

[tmcintyreParticipant]

Hi,

My husband was diagnosed in December and started VTD just after Christmas.  His paraprotein level was 11 and after 5 cycles it was down to a “trace”. Lightchains were 112 and went down to 0.2.  I don’t really know what these figures mean -everybody is different. He does have mood swings which is because of the Dexamethasone but they are generally just a flash in the pan. He started with neuropathy in his toes and slightly on the sides of his hands during cycle 4 so his consutant stopped the Thalidomide and reduced the Velcade dosage. He starts the procedure for SCT on Monday. He has put on a lot of weight – says the steroids make him hungry. He has been coughing throughout most of the treatment, some days worse than others and has just been given “puffers” to help.  He went back to work last month, just 2 mornings a week.  His mobility is quite poor but I think that is mostly due to his weight. His back pain has eased quite a bit. He has been having monthly bone strengthener and has experienced lots of creaks and crack noises which I hope is a good sign! He wasn’t sleeping well because of the neuropathy so he has been prescribed something to help and that seems to be working after just a few days.  I would urge you to tell your consultant everything that is bothering you health wise, as soon as they know they give you something to help.

He is quite stressed about the next stage of his treatment but as with the initial induction treatment, I guess we’ll get into the swing of it.

Keep in touch,

Teresa

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