[teds31Participant]

I have just been reading through all your comments as I haven’t been on here for a while, I am 82 and have had smoldering MM for over 7 years and I understand your remark ” head is a shed” I mostly forget about it now but I get 3 monthly check ups at the cancer unit at the hospital, and its usually a five minute interview all the results are OK see you in 3 months. Every time it gets round to appointment time I begin to feel worried I think it got to happen some time maybe this is it , then I go and its “you are OK see you in 3 months”.
I know I’m lucky but its just the wait and worry bit.
Its also interesting when I read this forum how every one is treated different, in all the 7 years I have never discussed my MM with any of my GPs, yet most people on here see there GP about MM, the only part my GP plays is that I make an appointment two weeks before I go to the hospital and have my bloods taken.
Well good luck and may you smolder for as long as me or even longer. Ted.

[teds31Participant]

Hi Karen, I have been Smouldering now for about 7 years I know that I’m lucky and every one is different, but thats how it is with this MM you cant tell and as there is no cure as yet so as my consultant says enjoy it while we can. Rebecca has given good advice , keep in touch on this site and ignore all the others,you will get lots of help and sympathy. all the best. Ted

[teds31Participant]

Hi Susie, I am a smoulderer and have had back pain but as I am 82 I think that may have other causes in your case if you are having 4 monthly tests I think they will pick up any problems as far as MM is concerned.Do you have blood tests on the day you go to see the Doc or do you have them a week or more before, I used to have them on the day I saw the Doc and of course the results are 4 months behind, I now go to my surgery and have them done 2 weeks before and then when I see the Doc the results he looks at are up to date. Ted

[teds31Participant]

Hi Molly, Sorry I’m not from South Yorkshire, I live near Leeds, I go to St.James for treatment, brilliant place though. Ted

[teds31Participant]

Dont worry too much yet wait for the test results and read up on MM as suggested, I’ve been smoldering for about 7 years so I am lucky you may be too. Ted

[teds31Participant]

Hi David,
I found out about light chains last time I went to see the consultant and wondered what it was all about, but there is a good pamphlet you can download (or just read) on this site under the information section. Ted.

[teds31Participant]

Hi Wendy, The amount of Parprotien in the blood gives a indication of the progress of the MM it can vary quite a lot and is different for each person as MM is a very personal disease, mine last time was 12, not a lot different to yours really.I go 3 or 4 times a year and they just take the blood samples and measure the Paraprotien and the light chains to judge if you are progressing or staying stable.If you read the leaflets on this site it gives some idea of what each test means. Ted

[teds31Participant]

Hi Wendy, I have had Smouldering myeloma for 7 years and still going strong, I have been lucky I know that, but every one is different and its a very individual disease. While you are smouldering do as my consultant advises and make the most of it and live every day. Good luck and may you smoulder for a long time. Ted

[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

[teds31Participant]

Hi Nick, I cant help you much but it might be a good idea if you knew what “Light chains and Paraprotien” was there are several good leaflets that you can download from the Publications on this site, very helpful if you want to know more or want other people to understand. Ted

[teds31Participant]

Hi Luciano,
I am quite a bit older than you but I have had smouldering MM for about 7 years, its not nice but as my consultant said just enjoy the diagnosis while you can. It does get easier as time goes on simply because you cant think about it all the time, after a year or two. There is a good guide on this site explaining Smouldering MM you can print it out and it helps to show it to family and friends because if you are like me it takes a lot to explain things to other people without getting emotional. All the best and may you smoulder for years. Ted (I go to see my consultant Dec 11 that's when I get to worry.:-) )

[teds31Participant]

Hi Chrissie Iam a lot older than you but I do have asymptomatic myeloma, so I thought I would just give a reply, it is also called smouldering myeloma, and I have had it now for 7 years, with no treatment and no bad effects. I know that this doesn't necessarily apply to you but it is a very personal disease, and we are all different. I just hope that you like me have a long spell of smouldering and like me you will only think about it when it comes to the next appointment time, and mine is in 2 weeks :-/ .Keep posting on here and you will get lots of support and you will not feel as alone. Ted
PS there is a good leaflet on this site about smouldering MM and you can download it and it helps to explain things to family and friends.

[teds31Participant]

I don't know a lot about SCT but I am smouldering and have been for 7 years and my PP level as always been around 12, that fact may not help a lot here but it does show that we can all be different. Ted

[teds31Participant]

Good luck to you both, keep posting and let us know how it goes. Ted

[teds31Participant]

Hi Just a little note go to the "Myeloma info" site (follow link on here) and you can down load a pamphlet on Smouldering MM ,its useful to have the info and also to show to friends and family who may ask lots of questions that are difficult to answer.Ted

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