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 improvement in my very limited mobility following this
Best wishes Jeff
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 had similar results to yours, and was three and a half years before I started treatment
Regarding the lack of freely given information at LRI, I started a discussion on this very theme some time ago, as you seemed to have to prise information from the consultants. This does seem to have improved of late, the consultants seem happy to show the computer screen results and discuss them.
Best of luck with the back problem, and long may you smoulder, Jeff
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, can’t help with the NHS only access to trials, I would think that as some of the trials are run by non NHS funded sources as I understand it, ( might have misunderstood this ) it would be worth pursuing if you are interested in accessing one, although you do say it’s not the Royal Marsden’s policy
Just gave up and decided to have a cup of tea and a read, it’s a Dex night !! Jeff
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 behind time I never do anything that will further delay things, such as asking for a specific consultant. Where it does fall down in my opinion is if you happen to be seen by a registrar, they don’t seem to have the background knowledge of us, and whats going on, although this only seems to happen when things are going well. I shall ask not to be seen by one at the next clinic Jeff
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 experience so far shows there is reason to be positive about the future, Jeff
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 what happens
Jan, still trying to work out what to do about reducing the pain killers, I suppose I should do one thing at a time. The neck/head problem has considerably complicated things, it’s presence is quite persistant and invasive, although not too activity limiting, and the pain relief doesn’t seem to have much effect on it. I think it will be quite difficult to sort out what to do
Best wishes, Jeff
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, but no call back, and I must admit other family concerns distracted me from following it up. never mind, they are fitting me in on the 17th. these things happen. I’m sitting swaddled in a towel to keep warm sweating like the proverbial pig. Why this occurs some days and not others I don’t know, very odd. Well, got to do some pheasant plucking for dinner tonight once the sweating stops.
Hope you find somewhere nice for another holiday, Jeff
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 relief. As I have said, increasing the dosage seems to have ” woken it up” and I will try to bring it back down to my original dose of 300mg 3 times a day. hopefully this will settle things down. I am also taking slow release Morphine capsule ( Zomorph ) 40mg twice a day, which apart from a brief sweat initially give me no problems. I also have liquid Morphine ( Oramorph ) for breakthrough pain which I seldom use. Did you get any withdrawal problems when you stopped the Gabapentin, Peter ? Other people seem to have problems with the patches, they seem to be harsher in their action than the oral versions. could you try the oral version ? I still drive with DVLA approval ok.
I am writing this drinking cocoa at the unearthly hour of 05.08 after waking up at 03.35 with a split stoma bag, causing bed linen change, pyjama change, carpet cleaning, bathroom floor and mat cleaning , load up the washing machine,great fun ! Trouble is you wake up discover the problem, panic and cause a lot of extra work. Still hopefully it’s not forever, should get the stoma reversed soon.
Well cocoa finished, I’ll try for a couple of hours sleep. Hope you can ease the pain problems Peter, they do so effect the quality of day to day life don’t they? Best wishes, Jeff
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 when all the treatments etc started, under a bit of a strain to say the least ! The neck pain/stiffness is slowly decreasing, which is good news.
Sorry to hear of your Dad’s back problems, sounds very painful. Pleased he is managing to control things with the meds. Talking of which, as said, my GP suggested increasing the Gabapentin to two tabs 3 times a day, which seem to be causing extreme tiredness through the day, so I may need to revisit this, as it’s difficult to carry out normal day to day tasks. Also, I seem to be reacting to the quick acting Morphine, causing heavy sweating for up to 3/4 hour. One of the first symptoms of Myeloma that took me to the doctors was night sweats and flushes. As with you, other family problems such as my middle daughter having had what is essentially a stroke have kept me busy and distracted me from following up things relating to myself. So, I’ll try again in two weeks time
Thanks for the kind thoughts regarding the op. look after yourself, Jeff
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 much good this is doing, it’s come back with a vengeance the last couple of days. As I am due for a Vertobroplasty op. on Monday this is causing me some concern, in case it stops the op. from being carried out. I’ve got a stoma following an emergency operation a short while ago, trying to deal with that when you can’t move your head using a mirror is great fun !! Incidently , I was a couple of hours late taking my meds this morning, and had a sweating attack.
So, I think it’s back to the GP to see if things can be improved. Whether I will be able to reduce the pain killer dosage as I hoped after the vertobroplasty, I’m not too sure now. Have you tried reducing your doses at all again ?
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. More uncomfortable than anything, I have never been able to work out what causes them, they stop as suddenly as they start. Regarding the height loss, I say I’m looking at people I used to look down on !! Being previously very active I find it quite difficult not to overdo the lifting and carrying tasks, I am obviously going to have to slow down and think what I am doing more. Reading through this post regarding exercise, I have found making myself get up and do something like a bit of light gardening does improve how I feel. ( sweating stopped, towels off !!) Strangely, this doesn’t bother my back at all.
Well, I am beginning to ramble on, so I’ll end now. Fingers crossed for Monday, Thanks again Andy. Jeff
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 before – do you find this difficult to adjust to, I do. I’m relying on painkillers rather than alchohol, as I’m not sure how my ileostomy would react to too much of it, and I have enough trouble with the damn thing as it is. Not sure about getting away for a while after the op as one of my daughters is in a bad way following a brain bleed. Just have to wait and see. Positives are very little serious side effects from all the chemo drugs ( not counting Dex !! ) and a falling p/p, consultant said I was heading for a good remission, Revlimid certainly seems to be working for me , on cycle 7 now.
As you say, and I’m a great believer in it, take each day as it comes, and try to make the best of it. I’m off to refit the fuel pump on my 1932 Hillman Minx !
Best Wishes to all our readers, Jeff
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 treatment. This was a new one for me. At the moment I am on my sixth course of Lenolidomide, which is proving very effective in reducing my p/ps, with little side effects. Thanks again, and best wishes, Jeff
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 given by the people on it, and their experiences during the campaign against Myeloma invaluable. So keep using it and the support it offers, Susie.
Best wishes, we are here for you through the dark days, Jeff
