Les, hallo, reading your message, when I was on Velcade and Dex I found it had very similar effects to those you described, particularly the tired part. As you said after any effort extra to ordinary tasks would leave me shattered and sitting down dozing off. Since stopping Velcade and Dex I am now on Revlimid and Dex, and feel ( although I have…[Read more]

Hallo Leza, I started this thread following meeting several ex work mates at the Myeloma clinic, all from the maintenance dept. where we worked over the same span of time. Considering the stated rarity of Myeloma occurring, this seemed to me – and remember this is due to chance encounters, nothing formal – more than a statistical blip which is why…[Read more]

Well, talked to the G.P. tonight, as he put it the good news is it’s nothing to do with Myeloma. What appears to be is arthritis, which is present in most of my spine. What this means for the future in terms of mobility and pain, I don’t know. Very worried about it as both these factors are so important to quality of life. Ah well, just get on…[Read more]

Hi, Annette, thanks for the information, very useful and I shall restart trying harder to drink at least 2 litres of water – though I do like the isotonic sports drinks too ! Jeff

Hallo bit off subject, but regarding ” drinking whatever quantity of water – this seems to vary depending who’s telling you – Although like David I struggle to meet the target with water, does it have to be water, or does any liquid ie tea, coffee, juices, even beer, count ? Just wondering, if I count everything most likely make it most days. Jeff

Hi, I am an oldie ( 76 ) so read this purely out of interest, and hope I am not speaking out of turn. Richard, your contribution I found cleared up a lot of terms etc. I’ve really never understood or grasped, and has opened my eyes to just what decisions and risks young SCT patients must go through. In a way, when at my age anything can come along…[Read more]

Hi, just got round to catching up on the forum, been off it due to several factors, the worst being my middle daughter suffering a bleed in her brain, and being whipped into the Queen’s Medical Centre in Nottingham, where she is slowly improving. Meanwhile, I’ve had a problem with my Stoma, which laid me up for some 10 days feeling awful. The very…[Read more]

hi Liza and Alant, First, I’d like to wish you both the very best in your struggle with Myeloma. It certainly is a life changing development !!! That’s very interesting, my consultant more or less turned a deaf ear when I mentioned the number of ex – workmates from the maintenance department I had met at the clinic with Myeloma. I suppose firemen…[Read more]

Hallo Jan thanks for the interesting reply. Very similar withdrawal effects to those I had. It’s quite worrying to think that there may be no alternative other than to have to endure these side effects, even more so as there is no telling how long they may last. I wandered onto an American druggies internet site, they use Gabapentin to enhance…[Read more]

Hallo Jean, I had a mild attack of shingles some years ago centred on an area of my chest. The residual pain from this did last a long while after the shingles had run it’s course. Frank certainly has my sympathy, although I can’t really imagine what he must be going through. It’s a difficult decision equating pain relief against ” normal ” living…[Read more]

Hi, Jean. Thanks for the interest. Certainly sounds much the same. Fortunately, the effect of taking the first tablet was so rapid it was unbelievable ! Within minutes I was much improved all round, the sweating stopped almost instantly, and the other effects within half an hour. I am now back on the full 300mg x 3 times a day, and feel what’s…[Read more]

Hallo Eve, I’ve just picked up your sad news,I’m so sorry to hear of Slim’s passing. All I can say,from my own experience, is the well worn phase ” time is a healer” is true to an extent. Eve, one day the birds will sing again. Jeff

Hi Robert, sorry to hear your news, it certainly takes some coming to terms with, doesn’t it? Robert, I was diagnosed with smouldering myeloma some 4 – 5 years ago, which lasted for 3 1/2 years. Up until my wife died 2 1/2 years ago I was taking curcumin every day, how effective it was is difficult to say. My wife’s death affected me quite badly…[Read more]

Hi, Richard, Although I don’t believe that the firm concerned – all right lets name it, Pedigree Petfoods as it was then, would ever knowingly expose it’s employees to risk through exposure to dangerous substances, it just wasn’t that sort of company, based as it was on Christian principles, it would be a very positive step to be able to name at…[Read more]

Yes, it certainly seems more than a statistical “blip” . As I’ve said before, I have no idea what the Myeloma incidence among the production workforce is. I have mentioned it to consultants in the past when I only knew of 3 or four other workmates with Myeloma, I’ll do so again now there are more of us. Jeff

Quick update, was in the local surgery helping one of my daughters attend for blood tests – bit like who’s helping who as I am recovering from surgery- when lo an behold , yet another ex workmate in the early diagnosis stages of Myeloma . That brings the total to eleven of us ex maintenance personal with myeloma !!

David, unbelievable ! It certainly seem to pour down on some more than others. A friend of mine who has had a terrible time with different cancers including bowel and two breast cancers said to me “if they haven’t been here they just don’t understand where we are, and it really annoys me the number of fit healthy people I know on happy pills. If…[Read more]

Hi David, your experience with withdrawal certainly matches mine, I don’t get the ants thank goodness. I shall bear with it, now down to zero Zomorph. Hopefully it will settle down soon and I can start to build the Zomorph back up for my back pain.Just hope I haven’t developed a reaction too it. Really annoying as it was caused by the hospital not…[Read more]

Hallo Mavis, I talked to one of the practise doctors, explained my thinking, he agreed that I was right and suggested and prescribed coprodamolphosphate ( I think !! ) to keep me going until the morphine catches up, quite how it will work I’m not sure. I shall try to put up with the delicate back as long as I can and try to avoid complicating…[Read more]