[colinjParticipant]

Hi I live in Norfolk UK and was diagnosed with Multiple Myeloma 18 months ago. I dont suffer any pain so far and I visit the hospital monthly for my bone strengthening drugs. Looking for other suffers in the Uk I can contact to learn more about the disease.

 

[avrilro55Participant]

I also live in Nofolk and was diagnosed in February with Myeloma. I ws taken illen route to my holiday in Goa and taken straight to hospital when we lanses . I had a scan which showed a plasmacytoma in the skull. Was flown home by air ambulance and admitted to Addenbrookes Cambridge who have been fantastiic, thats where tests showed i had early stages of Myeloma.   I had intensive radio therapy every day for four weeks followed by four months of CTD treatment and am now in my first remission. Not sure how long remission will last but i responded well to treatment. I now have to go back bi monthly for blood tests and bone infusion..   I found the treatment harsh at times although bearable. Was taken unto our local hospital a couple of times with infections, buwt hey got through it. Tiredness was the biggest peoblem and radiation sickness.  Any other info you need hoep i can help in some way.

[martinebbageParticipant]

Hi Colin Sounds like me you are “smouldering” ie have Myeloma but luckily have no pain of symptoms. I take heart that you have been like this for 18 months, as I was diagnosed only 3 months ago. It seems from all the posts and research I have seen Myeloma is so random and affects everyone individually. For instance I have read that people who have only had 1 month smouldering and others 6years plus before it turns into full MM, then it is so individual as to how it affects each individual. I have come to terms with the fact that no treatment will happen apart from bone strengthening until you get pain or the regular blood test results show that it has become active, then depending on what symptons you have the treatment will differ massively, luckily over the years there seems to have been a lot of new drugs with research going on to develop new ones. It does seem when it “kicks off” some of the treatments are tough with differing forms of Chemotherapy then stem cell replacement which does not sound very nice however it will put you in remission for a period for anything from 1 – 3 years again this is so individual, then you can go through the cycle again. As they say there is no cure for Myeloma but some treatments that are improving all the time. It could be one hell of a lot worse, I have a friend who had a cancer that could not be treated. The advice I have had is push your specialist for as much information as possible and get to understand your test results and how they are changing. I am no expert, I have tried to give you my thoughts from what I have learnt, also I have found this site so informative, reading other peoples experiences plus I found the section on this site detailing the slides from Myeloma Regional meetings, to be of great help. I am 55 with a teenage children and a great wife so I owe it to them to get on with life and stay positive, in the knowledge that there is so much support and I am not alone.

May you keep “smouldering” for as long as possible, good luck and stay positive.

Regards

Martin

[Author]

Posts