Hallo all, Well Andy and Dorothy, saw a really pleasant consultant, a Mr.Gabbar, at the Leics Royal yesterday ( after the usual 30 minutes plus to get into the car park – are all hospital car parks like this ? ) He gave me a good interrogation as to how I was feeling and coping, followed by an physical inspection, and pronounced that I was…[Read more]

Great news Stanley, long may it last Congrats, Jeff

Hallo Susie, I hope things are going well, and the side effects are easing up, they must be very draining and ” downing ” As I’ve mentioned before, mine have been very light sofar, and reading of the struggles of others makes me really appreciate this. How you cope with it all on your own I don’t know. I have my three daughters all living nearby (…[Read more]

Hi, Dorothy, How are you following the back op. now? I hope things have settled down a bit and you are more comfortable. I find it very difficult to rest and take things easy, I like to be up and doing. However, looking at the results from the dreaded M.R.I. scan, I think I might have to. The list in the copy of the doctor’s letter was scary,…[Read more]

Hi, interesting that you are getting short of breath, I was playing with my old car at the weekend and noticed that I was getting very puffed if I bent down. Are you on Dex ? This causes a very definite cycle with a couple of very down days every week, once I worked out what was causing it I found I could deal with it. Unfortunately I can’t walk…[Read more]

Tom, I’m on my 10th cycle of Revlimid and Dex, which is working well – that’s a dangerous thing to say with Myeloma – and have had very little problems. Mainly tiredness and an unpleasant sweating in the morning which takes me until about 11.30 to 12.00 to recover from, this was very bad initially. So hopefully you will settle down after a short…[Read more]

Hi, Dorothy, left it a bit before bothering you, how was it? Hope it wasn’t too traumatic. I did remember, and thought positive thoughts for4 you. Jeff

Hi, Dorothy, having recently had a vertobroplasty op, which due to the professionalism and reassuring relaxing manner of the team was much easier to endure than I was expecting, I would say try not to worry too much, easier said than done I know. I am expecting further surgery to deal with spinal cord compression which it seems I am suffering…[Read more]

Hi, Maureen, glad your husband is managing ok, it’s good to hear. I don’t know exactly what’s going on with my spine. as far as I know I haven’t got a tumour, it sounds as though it’s more collapsing vertebra causing the problems. I shall find out more when I meet the spinal team, but your husband’s history is reassuring, although I’m sure it…[Read more]

Hi, Tom, thanks for the feedback, one thing less to worry over !! Jeff

Dorothy, you post is one of the little things that lift one up, thank you for the support and words of wisdom. There has been and are so many bad health things going on in my family that taking each day as it comes along has long been my mantra. Thanks again for the kind thoughts, they help.
Best wishes to all, Jeff

Hi Susie, I’m on Zometa monthly with no side effects that I know of. I read up on this drug on the internet, the only serious side effect is the ostiochronosis ( ? ) of the jaw, and this is so unlikely in % terms that I decided to go for it, benefits outweighing the risks. Make sure your teeth are in good condition and any work needed is carried…[Read more]

Really good news Andy, so pleased for you, fingers crossed things keep going, and thanks for all the upbeat and helpful forum posts, all the best for the SCT etc. :Jeff

Susie, Regarding research about SCT, it was partly on here, talking to the consultants – I see anyone of five at the clinics, some are more helpful and easy to talk to than others – talking to the Myeloma specialist nurse, and one or two fellow Myeloma patients that have had SCTs. The overall impression I formed was that it was a bit too arduous…[Read more]

Hi, Susie, really good news, so pleased for you. I’m in my 3rd lot of chemo sessions, now on Revlimid and Dex, which seem to be doing the job, p/ps hovering around 4.5 to 7, despite several health upsets. I’m hoping for a further drop now other health problems seem to be settling down. I’m 76, was diagnosed way back in 2009, smouldered for some 3…[Read more]

Hi Tom, I’ve been on your new regime of Dex on Monday morning, Revlimid each evening for some time. I’ve had side effects from the Dex, feel great Mon and Tuesday, usually overdo things and am not quite so good Wednesday, pretty down and tired Thursday, could hang myself Friday, and slowly pick up over the weekend ready to start again ! Once I…[Read more]

I have quite a loud whistle/ rustling sound more pronounced in left than right ear. It is, I believe a possible side affect of Velcade which I was on for a while. I previously had a slight noise, but then I worked in a canning factory for nearly 30 years. Can be quite annoying at times.
Best Wishes to all, Jeff

Hi, susie, Some time ago I started a thread on lack of information being given by consultants. It became obvious from the lengthy correspondence on the subject that this was very variable across the country, with some hospitals being worse than others. At Leics. you seemed to have to drag information out of some of the consultants, almost as if…[Read more]

Susie, yes that’s correct, no mention of dental care etc. at all. Susie sorry if you have mentioned it already, which hospital do you attend? I go to the Leicester Royal, where I experienced a similar lack of information after an emergency operation resulting in a ileostomy pouch. I woke up with it and was more or less left to adjust to it, and…[Read more]