[teds31Participant]

Hi benz, I have smouldering Myeloma and have had it for over 5 years,it is hard to come to terms with as there are very few symptoms and little effects (if you are lucky) yet you have the worry of not knowing whats around the corner ,as Pilgrim said its a waiting game. Also there is the problem that on sites such as this we feel a bit of a fraud as we have no treatment and no symptoms ,so no worries,but believe me when it comes round to that appointment time worry I do!!!
Try to keep positive and enjoy the present. Ted

[teds31Participant]

Hi Jennifer, I have had smouldering MM for about 6years and as yet have had no treatment, I know how you both feel, but you must have faith in the consultant and his team. In my case we hardly think about it untill it comes to the 3monthly check then we both get nervous. I have just had my checkup and I have had back ache for a few weeks but they say its nothing to do with MM and is probably from my bowel problem, yet I did get an immediate X-ray and am waiting for the results.
There is a paper explaining SMM and I printed it out and I show it to my family so they understand what the problems are if you go to the site below and click on veiw, youwill get a full page paper. Good luck and keep on the site let us know how you go. Ted
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

[teds31Participant]

All went well yesterday ,light chains still light ,PP still PPing,so another 3 months reprieve, had to have an X-ray for back pain but they dont think it is MM ,but maybe to do with a bowel problem. I was very pleased that I got an X-ray stright away and didn;t have to think about it for several weeks ,they are very good. They checked my telephone number and they will ring me if there is any problem with the X-ray or blood results,I think thats very reassuring. Ted.

[teds31Participant]

Hi Ange,I'm a lot older than you but I was diagnosed with Smoldering (Asymtamatic) MM about 5 years ago, I have't had any treatment and I go to the clinic every 3 months. My PP level at the moment is about 12/13, I know its hard to come to terms with as every time you go to clinic it could be bad news,but you have to look on the bright side and get as much out of life as you can. I try not to dwell on it and get on with things. I go to clinic tomorrow ,wish me luck. Ted.
There is a very good info leaflet at this site if you haven't already seen it.
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

[teds31Participant]

Good advice here ,take great care with any sort of pain such as back ache etc. I always tell them at the clinic and have had scans etc. several times,each time nothing was wrong but it pays to be carefull. Ted.

[teds31Participant]

Hi Beverley, I have had Smouldering Myeloma for more than 5years, its very frustrating you are not on either side of the fence, and as some one has already said you dread the 3 monthly blood tests. Even on this site (and they are all great) you feel a bit of a fraud .
If you want some more info try the info sheets on this site,
go to Myeloma UK publications
info sheets
related conditions
click on Smouldering Myeloma
Click View on the RH side
you can read it or print it out to let other people read as I did.

[teds31Participant]

Thanks Wendy, I do drink a lot of tea and we go out once a week and I usually drink 3 pints of beer,but I dont count that, I also like the odd glass of red but not very often these days.
I was first told to drink more by a doctor at a clinic for Diverticulitus a bowel problem, but I did see that the same advice is given for MM as it helps with the kidneys. Ted

[teds31Participant]

I wonder about this I have smouldering myeloma and I have read that I should drink 3ltrs a day but thats an awful lot of water,thats another point does it have to be water ,what about tea juice etc. I do try to drink some but I think its a lot less than 3ltrs. Ted

[teds31Participant]

Hi Jerry, what treatment is your father having,can you tell us and we may be able to help with advice. Ted

[teds31Participant]

Hi Lexi, I forgot to mention this site which is very good for answers to Smoldering MM you could keep it on your computer or print it out to show to others who may be interested. Ted
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

[teds31Participant]

Hi Lexi, My names Ted and I'm 80, I was diagnosed with smoldering MM about 5 years ago,I dont have many symptoms and carry on a fairly normal life for my age.It is difficult to give advice as you will see if you read more of the posts on here,we all are affected differantly ,you would be well advised to ask about the Paraproteins from a doctor, the little I know is that mine started about 16-17 and they are now about 12 I think. Its no good though comparing one persons PP to some one else as we are all differant. Most people with smoldering MM dont have any treatment and they just keep a close eye on you ,I go to the out patients clinic about every 3 months,due to go again at the end of May.As my consultant told me just enjoy life and dont worry too much,keep posting and we will all try to help. Ted

[teds31Participant]

Hi Ann and Pete, Sorry I didnt reply been a bit off colour this last week, not to do with MM. The reason they dont treat Smoldering MM is that the treatments can be pretty bad and if there is no or not much degeneration then ypou could go for years (as I have) without much of a problem. There has been some research into giving treatment before the actual symptoms occur but I think they mostly say leave it until some thing happens. I go every 3months to clinic and several times I have complained of pain and they always give me a scan and so far nothing has shown ,the last time (3months ago) I had a full skeliton X-ray, so I think they are probably doing the best thing,I think the best way to go is to keep up regular appointments and ask questions and complain if you have any symptoms at
all.All the best and keep us posted. Ted.

[teds31Participant]

I use IE and I have large and small Ted

[teds31Participant]

Hi Ann, I'm Ted from Leeds,I am quite old:-D and have had smoldering MM for about 5 years,no treatment at all so dont dispare yet wait until you get some info ask a lot of questions and then tell us and some one will help. All the best .Ted

[teds31Participant]

Hi Jean ,how did Frank go on with his appointment ,hope things went well,its always a difficult time . My next one is in May,dont know the date yet as we go on Hols on the 14th and we asked them to wait until after that.
Hi Tony Hope the tablets are doing the job and no side effects.Ted

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