[louishenryParticipant]

<p style=”text-align: left;”>This happened to me with CTD, very good for 4 cycles then the pp started going up again. I got moved on to VCD which did the trick, I had a stem cell transplant and a year of remission. I’m about to start treatment again, probably Velcade and Dex. The nurse today was encouraging me with all the new treatments coming onstream now. If one drug combination stops working there are usually alternatives that will do the trick.</p>

[louishenryParticipant]

Hi Lynne, to give you a very unhelpful but probably accurate answer, myeloma is such an individual disease that anything from zero to six years or more is very possible. Certainly on average the remission after a stem cell transplant is longer than after just chemo, but there are many many exceptions. If your medical team don’t think a transplant is suitable for you it could do more harm than good. I always ask for lots of detail from the doctors but I don’t think I have ever gone against their advice.

 

[louishenryParticipant]

Hi Simon, if you find Facebook useful you might consider joining the UK Myeloma Support Group. It is good for shared experience and mutual support, thought this site is much better for information. My worry was that I would not be offered a SCT as my kidney function is not brilliant. It is not nice, but the unpleasant part only lasts a week or so and it offers the best chance of a long remission. I’m glad I had mine and will have another when it becomes necessary. Good luck with your treatment and transplant if you decide to go ahead with it

 

[louishenryParticipant]

Yes the SCT is horrible but only for a few days. You might be in for three weeks but it’s only a few days in the middle when you feel really rough.

[louishenryParticipant]

I’m on lenalidomide maintenance, neutrophils are a bit low but I’ve not had many infections.

[louishenryParticipant]

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 painful, and healed over without stitches. About six months later it came back again, same treatment. Now, another six months on I can feel it under the skin but it’s not broken through the skin yet. It doesn’t worry me, it’s just yet another appointment to fit in.

[louishenryParticipant]

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.

[louishenryParticipant]

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 don’t need a new referral. Perhaps my local maxfax, at St Mary’s hospital on the Isle of Wight is unusually helpful. I must say virtually all the medical staff I have dealt with since diagnosis have been brilliant.

[louishenryParticipant]

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

[louishenryParticipant]

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.

[louishenryParticipant]

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 benefits of beginning to get the myeloma under control. Hang on in there, it’s horrible but it does improve, and your mum’s medical team will be able to advise alternatives for anything that’s not working.

 

[louishenryParticipant]

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 comfort if you’re the patient who needs the drug NOW not in twelve months time.

[louishenryParticipant]

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.

[louishenryParticipant]

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 the better you will cope with the radiotherapy and other treatments. I’ve not done much yoga but I go to Pilates sessions twice a week and the only change since I got my remission following a stem cell transplant is to use a thicker mat to protect my spine and ribs a bit more. Occasionally I have to skip or shorten an exercise but otherwise my only problem is that my lenalidomide maintenance drug makes me a bit anaemic so my aerobic fitness is not what I’d like. It’s scary and sometimes unpleasant but I’ve been surprised how normal my life had stayed. Good luck!

Louis

[louishenryParticipant]

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 and have had it for nearly two years. About a year in treatment, occasionally rough, mostly annoying but not stopping normal life. I’m now enjoying remission and almost back to normal. Let us know how you get on.

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