Hi, all. Well, that’s interesting ! Would have been nice to have been advised about these dental problems and a visit to the dentist prior to starting Zometa many months ago. Still fingers crossed no evident dental problems so far , however 3 months is a long while to have a toothache. Good tip about the mouthwash versus salt though, Andy. Jeff

Graham, your experience as described in your post is nothing short of disgusting ! I have had the problem of not being sure if the doctor is talking to me or not, but not to the degree you have experienced. It’s such a shame there is this variation in behaviour and treatment by consultants an experience such as yours destroys your trust in them,…[Read more]

Nick, excuse my ignorance but what’s MST. I ask as my daughter who is recovering from a brain bleed is suffering from seeing people and things, we think this is due to one of the drugs she is on and are trying to work out which one. Hope all progresses well with the mobility, I’m off for a vertobroplasty on my back tomorrow, and am hoping for an…[Read more]

Hi Graham, Hope your back isn’t what I have been suffering from for over a year, cancer damaged vertebra, it has been restricting but manageable using pain meds. I’m actually off for a vertobroplasty tomorrow, and have high hopes for an improvement in mobility, etc.and a reduction in pain meds.
You seem to be following a similar path to mine, I…[Read more]

Hi, Dawn and Tony, I was on the X1 trial at Leics as you are Tony, and attended the clinic upstairs which did run to time pretty well. I never saw a registrar here either. I was taken off it when I stopped responding to the trial Chemotherapy. The non -trial clinic is a very busy clinic with some patients requiring a lengthy consultation.
Dawn,…[Read more]

Interesting, at the Leics Royal , it’s very much a team of consultants who obviously discuss us at team meetings, they get to know us and our problems over time, there appears to be about 5 – 6 consultants and it seems to be pot luck which one you get. No serious complaints about this, I do have favourites among the team. The clinic runs so far…[Read more]

Hi, Denise. I had very similar results on CDT. After 6 months on CDT I had plateaued. I was then put onto Velcade for a couple of cycles, with no further significant drop in P/Ps. I then started Revlimid, and 6 cycles later my p/ps are down to 4.1, despite several other medical problems. So don’t worry, be patient, not easy, I know. Hope my…[Read more]

Peter, Hi, I am getting more and more convinced my present lethargy, sweating attacks and sleepiness are due to the increased dosage of Gabapentin, as that’s the only thing I’ve changed. I have started to reduce it at a slow rate. Just got my fingers crossed there are no nasty side effects as there were last time I tried. I will report back as to…[Read more]

Hallo Andy, the op didn’t happen ! Got there, got changed, when we discussed what drugs I was on, it was discovered that I should have been told to stop taking a blood anti clotting drug, Clopidogril at least 8 days prior to the op., and it wouldn’t be wise to go ahead with the operation. bit annoying as I had contacted them to query this drug,…[Read more]

Hallo Peter, I’ve been taking Gabapentin for some 18 months and it has been very effective in completely eradicating the nerve pain under my ribs. Until I tried reducing it I had had no side effects at all. I posted the effects, sweating heavily, headaches, lethargy, and generally feeling out of it. Resuming the Gabapentin brought immediate…[Read more]

Jan, Well, the op didn’t go ahead due to my not stopping taking an anti blood clotting drug – no one told me despite me phoning in to check – which might have caused undetectable bleeding post op. Every one very apologetic, and they have booked me in a fortnight today. Has put my commitment to not getting stressed by such things that I started…[Read more]

Hi, Jan, just an update on the painkiller situation. Since last posting, I have had a bad problem with what appears to be arthritis of my spine up the top. This caused intense headaches and a very stiff painful neck – could move my head about 1/2 inch in any direction. So, my GP has actually increased the Gabapentin dose !!! I’m not sure how…[Read more]

Hallo Andy, thanks for the interesting reply. I’m a bit worried about Monday as the very stiff painful neck has returned, I hope it doesn’t prevent the operation. At least so far the horrible headaches haven’t returned. One side effect I do suffer from occasionally is really heavy sweats, I’m sitting with my head swaddled in towels soaking it up.…[Read more]

Hi, Andy, Glad the holiday went well. Interestingly, T11 and T12 are due for treatment on Monday, I’m trying not to expect too much, but any improvement on my present limitation on walking will be welcome. I’ve heard varying times that the benefit from vertobroplasty lasts, any idea ? I’ve lost 4 1/2 inches in height which I think I’ve mentioned…[Read more]

Thanks Rebecca, dt-pace sounds pretty heavy. Although I am too old at 76 for SCT and decided at 75 not to go for SCT although I was fit enough to be offered it at 75, partly because I realised it was a lot to take on without a carer to support me through the programme, I still like to have an understanding of as much as I can about MM and it’s…[Read more]

Sorry to ask what may seem to be be a silly question, at what is such a difficult time for you, but Dt-pace is yet another abbreviation I’m unfamiliar with, can you tell me what it is please. Jeff

Susie, I really feel for you going through all this on your own, it’s so hard at times, as I know only too well. How I miss my wife being there with me, even as I say, if it’s only to tell me to stop moaning and get on with it !! She was always there to support me and ask the right questions. I find the forum and the kind help and advice so freely…[Read more]

Great news Andy, it’s really great when the dreaded p/ps start getting into single figures, I’m sharing the pleasure of the same thing happening, I’m down to 4.2, can’t believe it. I’m waiting for a vertobroplasty, following which I hope to be able to walk more than a couple of hundred yards, and can’t wait to get away somewhere – ANY where…[Read more]

Denise, Hi, I started on CDT, on trial X1, which did much the same as your husband, drastic reduction for a start, then plateaued. I then came off the trial, went onto Velcade which had a slight decrease in p/ps. I then if memory serves me, stopped every thing for a month. and was then put on Revlimid and Dex. This had a great result , on course…[Read more]