[chris-franksParticipant]

hi

chris from Manchester here, I was diagnosed with asymptomatic mm two weeks ago. im 47 fit and active but very confussed. I have been put on the watch and wait policy and going back to see dr 18th feb.

have I got myeloma ? or am iwaiting is it just a matter of time?

cheers

chris

[johnandjunediamondParticipant]

hi,chris.
basicly what that mean’s is that you carry the desease,if you are very lucky it
may never evolve into mm.
if not then you at least have the advantage of being in the best possible position to gain quick control,for the time being try not to get too obsessed with it….but do please read thru the forum ( including the tv/video section ) so as to gain a basic knowledge of what you may be up against, meanwhile i wish you the very best of luck,and regard’s, john.

[jmsmythParticipant]

Hi Chris

Sorry you had to join us, but welcome. June has given you good advice. My husband smouldered for 6 years. He went every month to consultant. Frank only thought of MM when his appointment came round. I think I worried about it more than he did. I hope you smoulder for Many many years. Ted will probably come along soon, he has been smouldering for a long time. Take caer
Jean a

[teds31Participant]

Hi Chris, Been trying to get to you for a couple of days but the forum wouldn’t work for me. I am a lot older than you (82) but I have been smouldering for 7 years, its not easy but of course its much better than the alternative which a lot of people on here have to suffer. There is a leaflet that you can download and print out (go to Information then Myeloma UK Publications then down to Other related Conditions) this will help you understand SMM and you can let family and friends read it this gives them the information and saves you having to go through the difficulty of trying to explain. Life does go on and you will gradually learn to live with it, take care and hope you smoulder for at least as long as me. Ted

[fightingParticipant]

<span style=”background-color: rgba(255, 255, 255, 0);”>Hi. Thought I would finally join and tell my experience. I was diagnosed with myeloma in August 2013 and started treatment in October. Started with the standard CTD. Had various problems the main one being massive weight loss. I started the treatment weighing 185lb and 6’2” and at my lowest I weighed 155lb. And despite eating some 3500 calories per day blood tests showed that I was malnourished. The main reason for this was that the dex was putting my resting heartbeat up to 90 and sometimes as high as 110 per minute when my normal resting heartbeat is around 60. I have completed 4 out of the 6 treatments and have started to experience some neuropathy in my right hand. My haematologist has now stopped all treatment as my protein levels have reached a level he is happy with. Next step see the SCT team. I have now not taken any drugs for 11 days and I am now feeling almost back to normal. Heartbeat is now back to normal and starting to gain weight. A full 7lb so far. And no longer experiencing the hungover feeling from the thalidomide. Metallic taste and mouth dryness have all gone. So it didn’t take long for normality to return. Now waiting for the next step.<br style=”box-sizing: border-box;” />P</span>

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