[jeff605Participant]

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 least one factor that leads to Myeloma developing.
I would be more than happy for you to pick this up, let me know – perhaps PM would be the best way ? what further information I can help with Jeff

[jeff605Participant]

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

[jeff605Participant]

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 !!

[jeff605Participant]

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 only they knew” As we all try to, she soldiers on, living her life as best she can. I’m sure with your attitude and sense of humour you will continue to make the best of life. Good luck David and best wishes. Jeff

[jeff605Participant]

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 listening to me post an emergency operation for an abcessed appendix and a perforated bowel ( no warning, just being sick and went into a coma for 4 days !!) and only giving me a low dose of Zomorph for 11 days, despite me making a fuss about it. Took a sensible night nurse to sort it out. Good to know I am on the right track, I wasn’t sure, David. Shame, the Myeloma treatment with Revlimid is going well and I am evidently heading for remission. Could really have done without this added complication, but as I say, just deal with it, Stoma and all.
Best wishes to all on the Myeloma journey,

Thanks, David, Jeff

• This reply was modified 10 years, 3 months ago by  jeff605.

[jeff605Participant]

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 things. Thanks for the best wishes. Jeff

• This reply was modified 10 years, 3 months ago by  jeff605.

[jeff605Participant]

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. Just have to put up with the back pain for now . Jeff

[jeff605Participant]

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, I am waiting to see what will happen when I get back on them now I have a Stoma. Complications I really don’t need ! Still, I work on the basis of you’ve got it, deal with it, so it’s just a matter of wait and see I suppose. Good luck dealing with the very disturbing problem of being constipated, Jeff

[jeff605Participant]

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 coma. Obviously stopped the chemo while in hospital, so need to sort out what’s happening with that. The Revlimid still working, p/p down to 4.7.
The access to information is through Patient Access, this is run by the local surgery and allows booking, appointments, etc to be made through the internet, and now also allows access to medical records. Whether this service is not nation wide or not I don’t know.

[jeff605Participant]

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 the p/p at present. If the op. is successful it will be really great to be able to walk more than a few hundred yards and stop all the painkillers.
Dave, since I’ve been on the forum I’ve been most impressed with your attitude and how you deal with this horrible disease, keep it up, I’m sure you will get through it all. All the best, Jeff

[jeff605Participant]

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 been minimal. tiredness is the worst, and the neuropathy seems to be slowly creeping up, but is a nuisance more than a concern. So, Maureen, I wish Ian success with the Revilid and not too much hassle with the Dex ( should have said I find this quite a nuisance fighting the physical and mental ups and downs it causes. However now I know what’s causing the problems I just get on with it and moan a lot !!)Jeff

[jeff605Participant]

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 haven’t arrived. Whether this is due to a hold-up in the analytical dept. I don’t know. I shall get my blood tests done a bit earlier to see if it improves matters. As said, the phycological effect of knowing how the p/p for one example is going is of some important to those of us with Myeloma. I do get a copy of the Doctor’s letter some two to three weeks later, and can now access my Medical records online. It does seem difficult and I have posted on this earlier to get detailed information from the consultants in answer to questions.
I seem to remember from the earlier posts on this subject, ( I think I started the earlier Post on getting information and please correct me if I am wrong ) that Graham attends the same clinic as me, and appears to have a lot more difficulty with the system there than I do, why, I have no idea. I have had no difficulty with urine sample bottle availability and return. No way am I denigrating Graham’s
problems with the system, it must be infuriating !! Jeff

• This reply was modified 10 years, 4 months ago by  jeff605.

[jeff605Participant]

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

[jeff605Participant]

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 been 14 months on chemos, and would love a break.If this fails, what’s next, is my main concern. However my motto is one day at a time, and I know I have been really lucky with minimal side effects. We are really are in the hands of fate, so to speak, each of us battling our individual demons that Myeloma throws at us. As Dusk says, ” hang on in there “. Best wishes to you both, Jeff

[jeff605Participant]

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 down to 6.4, my lowest yet. Mind it caused a bit of ” oh dear ” when the doctor’s letter stated Neutrofils down to 0.7. Turned out to be a typo, should have been 3.7 !! Jeff

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