[teds31Participant]

Hi again Janine and Peter, Hope all goes well on Friday, I go to Dr. Cooks clinic at St. james, I just presumed that you were the same ,but as I go Wednesdays we could be under a different consultant.Its very important that you go together (two heads better than one ) and as every one says ask all the questions, don't be afraid and don't be put off. Good luck .Ted

[teds31Participant]

Hi Tracey, I have smouldering MM and have had it now for about 6 years, I don't have any treatment at all, I go to Leeds and they are very good at answering all your questions. Perhaps you could get together with your brother and put some questions for your brother to ask next there is a leaflet on this site regarding smouldering MM you can print it off for reference. Ted

[teds31Participant]

Hi Janine and Peter, Good to see you are both posting. I'm Ted and I am also at Leeds ,just got my appointment this morning for Sept. They are all very good at the Oncology Unit and you will have no problem with the staff they are always willing to answer all your questions,its my idea that its better to have a talk with each other and settle on the questions you want to ask, don't worry about how blunt the questions are if you ask they will tell you the truth. I am lucky in that I have smouldering MM and I don't have any treatment ,which goes to show how different this disease can be.Good luck for Friday and let us know how you go. Ted

[teds31Participant]

Hi George, I have Smouldering MM and it is 6years+ since I was diagnosed I had a BMB at my first appointment. I have no symptoms and no treatment ,I go to the consultant at the hospital every 3 months and have tests. As you see from all the people who post on here this is a very personal disease, and every one is different.Ted.

[teds31Participant]

I was just about the same as Carolsymons I think any more than 3 weeks when they first suspect MM is too long,you don't say which hospital that may make things different I don't know. I am at Leeds St. James's. Ted

[teds31Participant]

The delay in the results of tests is due to the time these take, I believe it can be a week or two depending on the tests required. Ted

[teds31Participant]

Don't give up ,I am 81 and have had MM for about 6 years but its slumbering and I don't need treatment, but I get scans when I need them etc. It could be that your Dad isn't getting treatment for some reason that you are not getting the info on. You do need to ask, I know what you mean about your Mum and Dad not wanting to ask, but if you could just get there and ask the questions I'm sure they will tell you. Ted

[teds31Participant]

Hi Wendy, I wonder which hospital you attend or which lab does your tests. I had some samples tested before Xmas and the results showed a high light chain result 600+ they were concerned and I had another test 8weeks later and the result was 200+. This seemed a lot better but the Doc said they were using a different scale at the lab and the results were not comparable. I am now going back every 8 weeks for tests, seems a bit like your results, I go to Leeds St.James hospital. Ted

[teds31Participant]

hi Sarah, Very sorry to hear your news and I hope that things will get better. Afraid I cant help with counselling , but I too suffer with chest infections as I have a chest problem to start with and then the problem of damage to the immune system due to the MM, I find that all I am offered is antibiotics and I have had about 5 bouts since Christmas. Sorry I have no answers. Ted

[teds31Participant]

Hi, Is it true that blood tests don't always show MM as it has to be a particular one. I had a blood test for a chest problem and they must have done the right one because my GP did another test(Bench Jones) and that's when they found my MM.I saw Bench Jones on the note to the nurse, I then went home and looked it up on the computer WOW what a shock. Ted

[teds31Participant]

Hi Eve what I meant was the scale used to measure the light chains has been changed. My light chains changed from 500 to about 900, which made them think things were happening, then the Lab changed the scales they use to measure the light chains, and the next reading was 200, I was quite happy with that until they said the scales had changed and they are now waiting for the next reading in 8 weeks to see if the light chains have gone up on the new scale. This is Leeds I don't know if all Labs have changed or not. Ted

[teds31Participant]

Hi All Hope you don't mind me coming back to this topic, but I have been back to the MM clinic today and all seems well so far. The information I managed to get regarding the immune system and other treatments such as operations, they said that the immune system is effected by the MM though it does vary according to the severity of the MM and the treatment you are having as treatment can lower your immunity, not just to operations but to all infections.
In my case I did find out that though my PP level is stable at around 14 as it has been for years, my Light Chains are on an upward trend :-S . The strange part of all this is that they have started to use a different scale to measure the level of the Light Chains and they now don't know if its increasing or not until they get a further reading in 8 weeks time to compare. Now does that sound strange or is it just me. Ted.

[teds31Participant]

Well done Paul, keep it up mate. Ted

[teds31Participant]

I'm at St.James at Leeds, and we also have a huge cancer dept ,there are always several docs there and it seems just chance which one you get, they are very nice to talk to and I have asked several people whether they all know what the others do and it seems that it just depends on who it is and how busy they are. At the moment with all the problems I have with different consultants I just wonder if one dept talks to others.Ted.
[b]Just carry on regardless[/b].

[teds31Participant]

1st Mothas, I see what you mean, Diverticulitis is treatable with antibiotics but the thing is Diverticular disease which is when the inner bowel wall pushes through the outer wall is permanent
and the only treatment is to cut out the offending bit.
Dia, You seem to have the worst of both worlds and it shows that one problem can have an effect on others and treatment for each one requires different dept talking to each other which I'm not as yet sure they do.Ted.

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