[teds31Participant]

Thanks for that Dia just what I needed funny I never found it before. The e-books are good if you need some quick read and can be cheap and dont take up a lot of room,but like you a real book is a book EH!!;-)

[teds31Participant]

Hi All, not every one has a Kindle I know but I think you can lownload sample books on the Amazon site. It seemed to explain MM terms which I have trouble with, it took me ages before I knew what SCT ment so I found this helpful. Ted

[teds31Participant]

Hi Tony,You must be on the tablets now how did it go,hope you are OK.Smoldering Myeloma is when you have the problem in your blood sample but no symptoms,which makes me very lucky, I've been like this for 5yrs and thats about as long as most people go with Smoldering MM so got my fingers crossed.Like you I have faith in my doctors and just keep going ,its strange but most people dont mention it and I forget except when the appointment letter arrives. Well keep in touch and I see several of us have been in touch and I'm sure they will answer any any queries you may have.Ted

[teds31Participant]

Hi Tony ,sorry you have to join us but its a great place to get all the info, I cant help because I have smoldering myeloma which doesnt have any treatment but I'm sure some one will be along with a comment shortly. Keep posting and good luck. Ted

[teds31Participant]

Hi this is Ted and for my pains I am 80 so dont give up on age,there are lots of things to do and ways to keep in touch with people,I help a charity to teach older people computers, there are lots of charitys that need help and you make lots of friends at the same time. Good luck and keep in touch with this post. Ted:-)

[teds31Participant]

Hi Eve, nice to hear from you,I do come on here regularly just to read bits but I dont post unless I have some thing to say. I was just having a bit of a moan,as the back is playing up something awful, dont know if its MM or just a bad back so I have waited a while to see what happens ,well it aint got no better so I will see my GP.I was following Terry and Fadias chat and they seemed relevent to mine so I thought I would join in,interesting to hear news from another part of the world especially US,it gives us news of whats new because a lot of new research comes via the US.This horrible MM MM is fairly rare and the smoldering kind even rarer, so information is difficult to come by, and when to start treatment just seems to be on the whim of a consultant,so it just depends on when he thinks it should start. As for holidays we went yesterday and paid for our latest ,we go on a coach tour down south in the middle of May, hope the weather changes for the better.There you are you have got me talking and now I cant stop:-D Good luck to all. Ted

[teds31Participant]

Hi just been reading this post for the first time, sorry I missed it. I was diagnosed with smoldering myeloma about 5yrs ago and they have kept a close eye on me ever since ,I go every 3 months or so ,to the myeloma clinic sit there for 3hrs and then they say OK go home come back in 3mths. Its very stressfull ,I understand that its not as bad as people that actually have treatment ,but its the stress that is upsetting.I am at the moment having back pain and I dont know if its MM or just a bit too much gardening, it has gone on for a few weeks so Ive made an appointment to see my GP next week.Well thanks for letting me have a moan its difficult to do so with family,I hope both of you keep well and keep writing. Ted

[teds31Participant]

Hi Susie, I'm sorry you have had to join us but its a great site for info on MM. Mine was found when I had a blood test for a chest problem ,when the doc asked for a second test I saw the form said Bench-jones, I looked it up on Google WOW what a shock, but that was more than 5years ago and I have asymtomatic or smoldering MM. so I dont have treatment, I'm very lucky. I still go to hospital every 3 months and it is a bit nerve racking but compared to most people on here is a breeze. So look around the site there are lots of bits and pieces of info that helps. All the best .Ted

[teds31Participant]

Hi All, Just popped in to say hello,not a lot happening at my end though that wont apply to all on here Im sure. I just thought I would leave a note to show I do keep an eye on you all even though I have nothing to add at the present. Take care . Ted

[teds31Participant]

Hi Every one, I just thought I would call in and say hello ,not much happening here ,winter seems to be with us and I'm not looking forward to it had a bad run last year with bad chest problems, hoping it wont be the same this year. Health seems to be very quiet at the moment, hope it stays that way. good luck to you all, and take care. Ted

[teds31Participant]

Hi All ,been and done it today,(Wed) pleased to say all good news ,saw ayoung man about 14 I think 🙂 but he was a nice lad, my HB 13 and my PP 12, we talked about PP and why it varied in people and he said I had Asyptomatic Myeloma, which meant that I had Myeloma but no symptons and until I do show symptons they will do nothing,he also said if I had aPP of 100 it wouldnt matter providing I didnt show any other signs of illness.He also said he knew of some one who had myeloma for 20 years and no symptons,so I said thats great I will be 100 by then.So another let off till Febuary. Bye Ted.

[teds31Participant]

Hi Phil,Thanks for the reply I go tomorrow (WED) 11:15 ,hope its not busy.:-) Ted.

[teds31Participant]

Hi Phil, whats CNS, is it your nurse, I go to St James Leeds I go on Wednesday and Im under Dr. Cook, dont often see him though its usually one of his side kicks, but they are very good and answer all my questions.Ted

[teds31Participant]

Hi All, Thanks for the replies and the good wishes we allseem to get this nervous feeling before an appointment, to be expected I suppose,I still dont get the PP side of it Jean, as you say some have the 2 or 3 and others have a hight 33 as David said, mine was about 11-13 and he seemed happy with that, as I tried before to explain the Doc said it didnt matter how full the bucket was so long as it didnt get any fuller,well I think thats what he said. :-/ .I like exercising my brain David but not the 3.5 miles 🙁 we do walk a bit now and then,,we live at the top of a hill its called Garforth Cliff so you get the idea and we have to walk up it every time we go walking,pity its not down hill at the end.Will let you know how it goes Wednesday and I hope its in and out like Frank. Ted

[teds31Participant]

Hi Mavis,I'm pleased some one likes the new thread, about the PP results, yes I have had a strange reply to that question (strange to me) when I asked about what level would I be at before I had to have treatment he said it did'nt work like that and he put it like this "its like a bucket with a hole in it and you are trying to fill it if the hole is bigger than the amount of water you put in then the level will not go up but if the hole is smaller or you fill it faster the level will go up" I think he ment if you got rid of the bad cells faster than you made them then the levels go down and if if the bad cells grew faster then the levels go up. I realise this may not make a lot of sense.Another Doc told me that the levels were not all that important and they would look for other things as well like bone damage etc.sorry if I dont make a lot of sense but lets face it looks like this illness will never make sense. As for CTD not having had any treatment I dont know much about it but I'm sure some one will join in.I hope you get more than 5yrs, I'm sure you deserve it.Take care,Ted

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