[teds31Participant]

Hi Marie, I am 82 and have been "Smouldering" for over 7 years, MM is a very personal thing in that every one is different and you cant compare one person with another, so although statistics say 50% go on to develop full MM in 5 years that is only a statistic and may or may not apply to Chris. I know its worrying and you will find that when hospital visits come along you will dread it ,but try to live a normal life between visits and keep coming on here for help and advice and the occasional moan, because we all understand. Best of luck. Ted

[teds31Participant]

Hi Jo, What a difficult situation you are in and we all on here try to understand, in my case, though I don't try to compare with your Dads situation ,I am 82 and one of my daughters lives 400 miles away we try not to tell her too much as she will worry and what use is that as she cant help anyway, so there is your parents thinking ,though it wont help you. I know a few people who don't really want to know the full details of there situation, but we are all different and some want the full and some times awful truth. Just keep posting and you will at least have some one to talk to. Good luck with your visit ,Ted

[teds31Participant]

Hi I do agree with Vicky and Colin try to get some one to go with him, its not to do with how intelligent he is its more to do with the emotional part. We are lucky as I have my wife to go with me, is there a friend who could help. Ted

[teds31Participant]

Hi Jo, It does sound as though the consultant is keeping a close eye on things and that is good, as I said before I don't have much experience with the treatments and I am sure others will come along with practical advice. You must not give up there is a light at the end of the tunnel and I do hope your Dad gets into remission soon. Ted

[teds31Participant]

Hi Jo, Sorry to hear about your Dad , and I hope things improve. I have had MM for 7 years but in my case its what is known as Smouldering MM which does not yet require any treatment, the para protein levels that were mentioned refer to the amount in the blood or urine, mine is 11 to 13 but MM is a very personal illness and you cant always compare other peoples results. Would it be possible for some one else to go with your Dad as its easier for two people to understand all the jargon. Other people will come on here shortly and give you much better advise that I have ,so keep looking . All the best .Ted

[teds31Participant]

Hi boxer, Been smouldering for 7 years so far ,I have not had any treatment though I have had several scans and all body Xrays, due to aches and pains. My paraprotien is about 14 and my light chains steady at about 200. If these numbers don't mean any thing to you just say and some one will explain, The point is that this disease is very personal and every one is different so you could be in for a long or short wait , not very nice but as my consultant said make the most of it. Keep going to the clinic and ask all the questions . Good luck. Ted.

[teds31Participant]

Hi Frances, I am 82 and been smouldering for 7 years, it feels very strange after a while you have no symptoms but still go every 3 months for the blood tests. As a matter of fact we have been today and the usual no change come back in 3 months. I asked again today about aches and pains and the man said if the pain goes away when you rest then its unlikely to be bone problems,its very difficult to know the difference ,best thing is keep on with the blood tests and try not to think about it much in between . Good luck .Ted

[teds31Participant]

Hi Peter, Yes mine is smouldering MM as you say, I have had this for about 7 years, which is a long time they say 50% of people with Smouldering reach the full blown in 5 years so I have been very lucky. The pressure is on each visit though. Glad you feel a little better now as it is a up and down disease, take care and do as the nurse says (Janine that is 😀 )
Ted.

[teds31Participant]

Sounds really good Jill I am sure you have got the right advice. Ted

[teds31Participant]

Hi Jill, Don't know much about the subject but I will add my 2p worth, my light chains started going up about 18 months ago and they were concerned, no treatment but a few months later I was told that they were 200, that seemed very low and we were pleased. Then another doc told us that the scale had been changed and there was no way to compare the different reading. Well as a engineer this did not make sense but the top dog said it was right, I just thought that your Mums results maybe in the old scale. Ted

[teds31Participant]

Hi Peter and Janine, Well I cant be much use on these things as I have not had any treatment (yet) but I do know how nice the people at Leeds are they really do make a difference when they are so considerate and helpful. Did you get a card for a personal MM nurse, I have one and you can ring E-mail her if you have any questions you need to ask. Take care. Ted

[teds31Participant]

I also find that strange when I had my BMB it was totally pain free,I had a injection then the Doc said turn over on your side and put your knees against the wall, that was to stop me sliding along the bed, and it felt like he was screwing some thing in to my back, but no pain. Ted

[teds31Participant]

Hi Sue , I have had Asymptomatic (smouldering) MM for about 6 years and no treatment yet so things can go on for quite a while,as people on this site will tell you its a very personal disease, and every one is different. Also different consultants and different hospitals use different treatment, so one may start treatment before others. There is a leaflet about smouldering MM on this site I think its if you click on information, you can download it and print it out I found this useful for explaining things to relatives and friends. Ted.

[teds31Participant]

Hi Glad to hear you are a little more informed ,knowledge is every thing in this game. Keep us up to date. Ted

[teds31Participant]

Hi I am sure things will seem better after Friday when you get some info and find out what treatment they offer, I must say that if the same thing that happened to you happened to me I would have gone straight to hospital. I have a contact nurse at Leeds they gave me a card with her name and number which I can ring for help or advice, it might be a good idea if you asked about it on Friday. Ted

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