Hi Jan, I’ve been on Zometa for two years since diagnosis. It was stopped for a few months when I had dental work done and again when my kidneys were complaining. The exposed bit is by my bottom right back tooth, on the inside of the jaw. The max fax doctor started with just mouthwashes then decided to scrape off a bit. It was very quick, not…[Read more]

Hi Adrian, I spent a week in St Mary’s two years ago when I was first diagnosed. I signed up for the Myeloma XI trial so most of my treatment is at Southampton under Dr Jenner. I’ve been very happy with how I’ve been treated at both hospitals. I hope your appointment with him goes well.

I was referred to maxillofacial by my dentist when she spotted exposed bone in my mouth. The maxillofacial lady said it’s almost certainly caused by the Zometa, but if I need it I should carry on having it and she would sort out any problems. She has now twice scraped away the exposed bone and it has healed over OK. I can phone her directly now, I…[Read more]

It seems like this forum is underused and the Facebook group is overused. We’ll see what happens with the health unlocked forum.

I moved on to Velcade VCD from thalidomide CTD when the CTD stopped working and found it similar but better, more effective and with fewer side effects, though I still had some neuropathy.

This does sound worse than usual but if this is the last week of her first cycle she will be able to discuss it with her consultant. To begin with you get the double whammy of the effects of the disease plus the effects of the treatment. I found after two or three cycles I got much more used to the treatment, CTD for me, and began to feel the…[Read more]

I’m trying very hard not to get on my soapbox and rant about this. The drugs market is an unholy mess. Yes, drugs are very expensive to develop, no the drug companies should not be charging tens of thousands of pounds years after they have covered their costs. Nice is doing an excellent job negotiating the best deals possible but that is no…[Read more]

Hi Sonia. It does seem to vary from hospital to hospital. I’m coming up to a year after stem cell transplant and tomorrow will be going for my first baby jab. I had a flu jab a fortnight ago. This disease is so individual I don’t think there is ever one standard treatment so I would trust the advice of the consultant.

Hi Gary, I know how disappointing it is when you have always had a healthy active lifestyle to get a disease like myeloma. Not just disappointing but traumatic and panic inducing as well. The good news is that new drugs like carfilzomib are coming along all the time so the outlook is improving all the time, and the fitter and more active you are…[Read more]

Sorry you’ve had to find your way to this site, which is definitely the clearest and most informative place. I hope your appointment tomorrow goes well. If you can just stay laid back and in the moment you’ll cope well with the treatment. They will probably get the myeloma under control fairly quickly but bone damage is harder to deal with. I’m 64…[Read more]

My experience was similar to Rebecca’s. First week twiddling my thumbs wondering what all the fuss was about, second week horribly horrible, third week recovering. I was in an individual room throughout in Southampton.

Fitness is more important than age, if the doctors are offering SCT your mum is obviously fit enough to cope. I am in my mid sixties and had a sct 9 months ago and was up and about after a few weeks, more or less back to full fitness after a couple of months. Myeloma is so variable you can never be sure how effective treatment will be, but I’ve…[Read more]

It means don’t panic, the doctors will find a new combination of drugs to get them down again. This happened to me. It means a longer period on chemo but I’m sure she will get to remission.

I had a bit of exposed bone in my mouth. The maxillofacial doctor sorted it out by scraping back a bit of bone, then mouthwashes. It healed in time for my SCT last November, no problems since then. She said if the Zometa helps the myeloma keep having it and I’ll sort out any problems that arise. So I’m still having it every four weeks

I was diagnosed 18 months ago, went on the Myeloma XI trial. 4 cycles of CTD worked well but on the 5th cycle paraproteins went up a bit and on the 6th cycle went up a lot, so after a few weeks off treatment I went on to Velcade (VCD) which worked much better. 6 months ago I had an auto SCT and am now in remission and virtually back to normal…[Read more]

Having myeloma is horrible so feeling sad scared and anxious is very understandable. Being a fairly uncommon cancer you will probably only meet other people with the disease at the hospital. If you do Facebook there is a UK Myeloma Support Group you could join. This site is clear and informative but Facebook is good for chat and mutual support. It…[Read more]

I well remember the feeling of panic and trauma in the first few weeks after diagnosis but it’s amazing how soon we get used to it. There’s no cure but the treatment is effective and as it begins to work you will feel a bit calmer and more positive. This site is brilliant for reliable information. I was diagnosed 18 months ago but after 12 months…[Read more]

Hi Geoff, I will certainly agree that Southampton are tops. I was diagnosed December 2014. More than 12 months of chemo and a stem cell transplant later I’m pretty well fit again so keep popping the pills, you’ll get to remission eventually, fingers crossed!

<p style=”text-align: left;”>Hi Sonia, I had my stem cell harvest and transplant at Southampton a few months ago and have got nothing but praise and thanks for all the staff there. Harvest was tedious but not painful at all. The sickness and diarrhoea and sore mouth are no fun when you have the transplant but in my case only lasted a little over a…[Read more]

Thanks for that Rebecca. I’m already more active than I expected, walking and cycling, but still feeling a bit queasy. Food tastes OK but drinks are most peculiar tasting. The only drinks that taste anything like normal are Coke, well cheap supermarket cola, and white wine! I’m all in favour of treats and indulgences. There’s a very nice little…[Read more]