[tmcintyreParticipant]

Hi Louis, we know C7 quite well.   Dave has spent the last few days in Acute Oncology since I phoned the emergency number on Saturday night. Lovely staff in there too.  We finally think that they have discovered why he’s been coughing for the last few months – an upper respiratory infection.  He’s been on high dose antibiotics since Saturday night and is coming home later today with more tablets.

He hasn’t had much energy during the last couple of months but I think we may have turned a corner.  Dave has always been an  “I’ll do it tomorrow” person and I have spent the last 30 years trying to change that. I think he is finally beginning to realise that we have to make the most of each day.

[tmcintyreParticipant]

Annlynn, thanks for getting back to me, its a great help to learn how others cope with it.

Tony, good to hear from you.  Our consultant was interested to know that Dave’s brother also had Myeloma although he initially said it didn’t run in families. The literature from Myeloma UK indicates that it might. One of our specialist nurses has just come from the research side and her ears pricked up when she heard. Perhaps the hospital will investigate that further down the line.

I agree, we think our GP was very alert especially as the lab reported that Dave’s protein levels were high but just within the normal range. She must have noticed an increase between blood tests.  Considering she had never met Dave before I am very grateful to her.

Dave’s temperature has gone down but his bloods are still showing an infection so they are keeping him in hospital.  He couldn’t start his SCT priming today sadly.

Thanks for thinking of me. At least with Dave being cared for in hospital I am managing to get a few good nights sleep!

 

[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

[Author]

Posts