[louishenryParticipant]

Hi Dan, are you UK based? If so the information on this site is absolutely unbeatable, dozens of booklets downloadable or in paper form, always up to date, thorough but understandable. I’ve had myeloma for more than 3 years now and whenever I move on to a new treatment I can always find information here. The consultant and the nurses are very good at explaining everything but you still need something to take your time over at home.

[louishenryParticipant]

I’m sure it is, but tell the teacher about myeloma. I do mainly Pilates which I find really helpful but I miss out or modify any exercises that put body weight on one or two bones, since our bones are like Swiss cheese!

[louishenryParticipant]

Southampton is very good. I was diagnosed at St Mary’s on the Isle of Wight but I signed up for a clinical trial which meant all my treatment was and is at Southampton. It’s well worth the journey.

[louishenryParticipant]

Hi Teresa, I spent most of yesterday in C7 in Southampton, they’re lovely there, though the waits get tedious. In nearly two and a half years I’ve only managed 12 months remission but being on treatment doesn’t stop me staying active and enjoying life. Do what you can when you can and don’t worry about the future until it happens.

[louishenryParticipant]

<p style=”text-align: center;”>We’re all different but good posture is good posture with or without myeloma. I do Pilates twice a week and find it very helpful, though I sit out exercises that seem to put a lot of stress on bones. Lots of exercise, healthy diet, always helps. Our bodies need all the help they can get as they deal with the mm and the side effects.</p>

[louishenryParticipant]

I only got 12 months from my first one so I won’t be offered a second, but if it was recommended I would go for it. It’s unpleasant but the really horrible bit only lasts a week or so.

[louishenryParticipant]

Yes.

[louishenryParticipant]

Hi Michael, I occasionally look at the Myeloma Beacon forum but I’ve never contributed so I haven’t had to log in. It’s always interesting to see a wide range of information and views but treatment options are quite different here in the UK so you might find some things less applicable in your case. We’re all facing the same MM beast though.

[louishenryParticipant]

Talk to your hospital consultant first, see what she/he thinks about it. Personally I’d be very sceptical.

[louishenryParticipant]

<p style=”text-align: center;”>Interesting article. It all comes down to marketing strategies. The high cost of developing these drugs has to be covered somehow. If that is done with very high initial cost but some compassionate offers to deflect public criticism it is still a major problem for us and for the NHS. If only research could be funded by universities governments and charities the drugs could be immediately produced (after safety and efficacy trials) as generic drugs at much lower cost for everyone. Such sensible international cooperation seems to be pie in the sky in current political circumstances.</p>

[louishenryParticipant]

When I was first diagnosed, nearly two and a half years ago now, I was in full panic mode at the unexpected diagnosis so I’ve no idea what the initial treatment was but there was something to bring down the calcium levels. There should be a specialist nurse at the hospital haematology who can talk all this through with you and your brother or if that’s tricky to arrange try the helpline on this site.

[louishenryParticipant]

I’m surprised at this much delay. Time to pester and ask what’s happening I think. When I was diagnosed they wouldn’t even let me go home and started treatment straight away. The good news is that when treatment does start he will feel a lot better quite quickly.

[louishenryParticipant]

To be more precise, they will give you lots of bags of platelets and if necessary​ more drugs to improve the engraftment process, after which your body, unless you are catastrophically unlucky, will start producing its own.

[louishenryParticipant]

The answer, as always, is it all depends. Mine was successful but only for a year. Whatever happens you and your team will sit down and say, right, what next? Nowadays there are so many alternatives and combinations, even drugs not available in NICE guidelines are available through trials, each year you survive there are more treatments coming onstream. No guarantees for anyone, including those without myeloma, but hopefully we’ll get a good few years yet.

[louishenryParticipant]

That is such a hard decision. What we all want is the best, most effective treatment. At some point that is palliative care, pain relief. Personally I’m not there yet but it will come. The language of fighting and warriors doesn’t help as every time the myeloma comes back it seems like defeat and failure. It isn’t, it’s just what happens with this disease. I hope you your dad and the medical team find a way forward you can all agree on.

[Author]

Posts