Hallo again, further to this it looks like it is due to being off morphine for 11 days while in hospital – could I get them to understand I needed pain relief for my back, not what had been done to me in hospital – and going straight back onto the full dosage I was on previously. I have cut it right back and the sweating has largely disappeared.…[Read more]

Hi, I’ve been fortunate with constipation, with the exception of a stay in hospital messing things up, by careful juggling of Maxidol and Lactolose I have largely kept it at bay while on the various chemo. drugs. At present I have been on Revlimid. Following an emergency operation for a burst appendix and a perforated bowel I have been off chemo,…[Read more]

Hi, sorry about not catching up on this, unfortunately been whipped into i.t.u. on the 26th July with an abscessed appendix and perforated intestine, which has left me with a nice stoma ! Added to that, my vertobroplasty was due on 4th Aug.! So am back home last night, and spending today catching up on the missed days including the four I was in a…[Read more]

Wow, lot going on Dave, hope the op. goes well and nothing serious with the lumps. I was a bit bewildered when I was off chemo drugs for a month, and worried about what would happen to my blood results. I’m off for a vertobroplasty on the 4th August, but haven’t had to stop any chemo drugs – I’m on the same regime as you, which is slowly dropping…[Read more]

I’m on my third month of Revlimid and Dex, it’s slowly reducing my p/p, it’s now down to below 6.5 from 28. (exactly what it is, is another subject, see the posts under ” getting blood test results ” )Revlimid and Dex is my third set of chemo drugs, and appears to be working. Be nice if I actually get to remission for a spell. Side effects have…[Read more]

Hi all, I have blood tests taken at the local GP usually on a Monday for the meeting with the consultant on the Thursday. Up to the last couple of months this has worked well, the results have been available at the consultation and freely shown to me and discussed. The last two months, although most of the results have been there the p/p results…[Read more]

Hi, Karen, most likely me you were talking to, it’s now up to nine plus one more I haven’t actually met face to face but have been told of,of my ex – maintenance colleagues that I have bumped into at the LRI clinics who have developed Myeloma. Really does seem to have some significance. Jeff

Hi, Fiona, I feel I know where you are coming from, I’m on my third set of Drugs, had 8 weeks off to ” wait and see” after the 1st set, p/p started rising, so onto Velcade, that did nothing – well a very slight rise – now on Revlimid which up to now is working, p/p down to 6.5 ( that’s the lowest yet ) just living in hope this continues. I’ve now…[Read more]

I expect this would be put down to a ” statistical blip ” but I don’t believe it. The group I have been referring to has increased by another two ex – workmates. I can’t quite see why there should be such variations in areas of sparse occurrence and the high incidence groups. I can’t explain it either !! Oh, and the Revlimid is still working, p/p…[Read more]

Hi Julie, I had this problem, still get tired quickly and can fall asleep easily when I sit done – even on the loo!! It was put down to low calcium originally, which was put right to an extent by meds, I also had low ( 8 ) heamoglobin. this is now up in the 10s, still a bit low but I feel so much more energetic, and am able to do 3 – 4 hours…[Read more]

Hallo all, Well , now just about to start 3rd cycle of Revlimid and Dex, and have some blood test results at last. My para protein has dropped from 29 at the beginning of the treatment to 7.6 in 8 weeks, which , although no one can say if this slide will continue or not, is really a positive result, needless to say I am very pleased. I have…[Read more]

Hi,Richard quick update, I went to the clinic with my daughter – she is under investigation for high protien levels, but there is some doubt this is Myeloma – and as I was on the 6 week of Dex/Revlimid but had had no results to know if it was working I asked the consultant if she could look up my results which she did. Paraprotein down to 8, the…[Read more]

Rosie, thanks for a lovely reply, I really appreciate it. I’m sending you a private message, as I don’t want to clutter up the discussion page with what is really a personal matter, we all have our difficulties and problems with this rotten disease Jeff

Dick, thanks for that, I’m living in hope over the Revlimid, comments seem mainly optimistic. Jeff

Rosie,You sound as though we are in a similar situation, although I am dealing with it on my own as my wife of many years died not long before *I became active, after some three years smouldering. I actually have two vertabra that have collapsed, causing some 4 – 5 inches height loss and some mobility problems. I signed the premission docs in…[Read more]

Hi,Still confused as to the position of Myeloma in the rarity scale.I have realised that the calculation of expected/actual numbers of suffers from Myeloma in a town like Melton is quite complex ( and I suspect beyond me),taking into consideration of survival times,etc. I have noticed that in the Leics clinic I attend that there is a predomiance…[Read more]

Hi, if what you say is right, I stand corrected, I understood that Myeloma was one of the rarer cancers, so perhaps my thinking that there is a high incidence in my area is mistaken too.Jeff

Hi, Dick, The fact that struck me regarding the incidence of Myeloma among my workmates was that this cancer is recognised as being a rare classification, to have this many of us with it in a group where not all of us lived in Melton, the commonality seeming to be where we worked, seems significant. As you say, this may well be a coincidence. I…[Read more]

Hi, Tony the big problem of course is that we don’t know what causes Myeloma, so really have no starting point.Yes there was a Thor missile site just outside Melton, and as I think I mentioned previously, many of those I know with Myeloma worked at the petfood factory. I have wondered if it would be possible to get some idea of the total numbers…[Read more]