Hi, Dick and Tony, I’m 75, and retired early many years ago. Most of my workmates with Myeloma would be between 65ish and 70ish or thereabouts.So although not a young group, we are comtemparies in processes and substances exposed too. Jeff

Hallo, All.
I’m slowly getting my head round what the readings/ figures mean that I receive after each clinic visit in the copy of the G.P.s letter from the consultant. Although interesting, I don’t quite know what steps I need to look at taking to improve any of these, apart from following the advice and taking medication as provided. I see – and…[Read more]

I discovered that once I realised what was causing my deep depression on the second day off steroids (after about four cycles of Dex I was shouting at the cat who wanted feeding and thought ” this isn’t right” and started trying to find out why) I found it much easier to deal with,( i.e.stop indoors and don’t speak to anyone !!!) . I am not…[Read more]

Just reread my post after your comments, I’ve not started taking the meds. until
Monday, so don’t actually know how I will tolerate them yet. However many thanks for the kind thoughts, it’s nice to know there are such caring people here offering support, something I greatly miss since my wife died. Regards and thanks again Jeff

Hi all, Just come back from a clinic meeting and have been put on Revlimid and Dex. This is after 6 cycles of CDTa,( paraprotien down to 10 from 49 ) and two of Velcade, which didn’t lower my paraprotien reading at all. This morning after 10 weeks off every thing, it has been decided to try Revlimid and Dex, so I trawled through the posts and…[Read more]

Hallo All. Just had my meeting with one of the consultants at Leicester Royal Infirmary.Quite an important one as it was to decide where we go from a rising paraprotien ( 9 to 25 in 10 weeks). This time, once I showed an interest in my readings the consultant was quite happy to write them down for me and answer questions quite freely. Nice change,…[Read more]

Further to this a very interesting and hopeful article in Patient Power by Dr. Paul Richardson concerning protozian inhibitors and the very high success rates ( 95% !!! ) being achieved by oral administration in combination with other drugs, as I understand it. As you say Dick, cause for hope There certainly seems to be a lot of work going on…[Read more]

Direct link to this article is :- bbc news bruton’s tyrosine kinase Jeff

Sorry everyone, it looks like I’ve managed to erase my original post , here goes again !!
A friend sent me this, and I thought it might be of interest :-
Hi Jeff,
Thought you might be interested to see some info on this new drug (Bruton’s Tyrosine Kinase Inhibitors, B.T.K. For short), trialled at Derriford hospital Plymouth and University of…[Read more]

Hallo, thanks to both of you for the quick reply, that seems easy enough. Fortunately ( ? ) we live on the borders of two authorities so the travel involved shouldn’t be too far for my friend. His next consultant meeting is very soon so I shall pass on your comments today just in case he has bad news. Thanks again Jeff

Hi again, What I will do is see if I can get a better idea of any other employees of the company involved such as production workers who have Myeloma, where they worked, etc., and then decide whether to pass the information on or not, will take some time as I shall have to do it on an informal basis- incidentely, I have met other Myeloma suffers…[Read more]

Dick, I haven’t checked your calculations and don’t know what criteria you used. I started this thread as interesting, due to the affected group all working in the same place , exposed to the same chemicals, etc, including radio active sources. I am quite aware the chances of determining which, if any, items have caused Myeloma, is remote, if not…[Read more]

Hi, Dick, Yes I do, why? Dusk, I do understand what you are saying, I still think it’s an interesting cluster, though Jeff

Hallo Jean, many thanks for the information about the diary, I have emailed Myeloma U.K.concerning obtaining a diary, sounds like just what I need. Thanks again, Jeff

Hallo Graham, just had a thought, when I spent some three years smouldering, the consultants at the LRI quite happily swung the screen around for me to copy the results, or read them out to me. Since I started treatment I think this openness has changed. This might be my imagination,so at my next meeting ( about three weeks ) I shall ask to see…[Read more]

Hi Andy, thanks for the very informative reply. I usually take one of my three daughters into the consultant’s meeting with me, partly so they can listen and remind me later on as to what was said, and partly so they know what’s going on, as they are all very nervous after losing their mum three weeks after she was diagnosed with unsuspected lung…[Read more]

Hi Frances, I started off with a ” bad back ” after putting something in the boot of the car. had it before, so wasn’t too alarmed but it didn’t get better, a nuisance but bearable. THEN one morning got out of the shower, found myself hanging on the radiator in intense pain. Into an ambulance off to hospital for a few days. After an MRI scan (…[Read more]