[teds31Participant]

Hi Laura, Just to say if you want info sheets to help understand things or to show to other people and relitives, you can click on the Myeloma UK publictions at the top of this page and select the info you need then print it off. Hope that helps. Take care. Ted

[teds31Participant]

Thanks Mothas, thats really interesting your the first person I have spoken to who as actually had the operation.Things with me are not as bad as you discribe and that makes the decition even harder as I could manage it without surgery ,the thing is for how long. As I said before I have a chest problem also, which goes to make things harder, and I am 81 so how long have I got before its too late for any surgery. I will wait and see what the new tests show and make a decition then. Thanks again for your help. Ted

[teds31Participant]

Thanks Helen, Thats a big help I knew some one would know. I dont seem to have a nurse specialist, probably because I dont have treament. I do have to go for more tests in a few weeks and the surgen said she would see me after the results are known, so I will wait and ask them then. Ted

[teds31Participant]

Hi Jane and phil, It is some thing I have not come across or even considered and it put a new light on MM if we cant have surgery things could be really difficult in the future. Wonder if any one with medical knowledge on here as an opinion. I go to the MM clinic in a couple of weeks I will ask thier opinion. Ted

[teds31Participant]

Hi Ann,, it all seems very confusing, in my case I have smoldering MM so I dont have symptoms or treatment (as yet) so its hard to say if my immune system has been effected. ted

[teds31Participant]

Thanks Tom, yes I think thats exactly what she was saying ,though she was not an expert on MM and as we all know its a very litte known thing that even medical people get wrong occationally, looking on this site people seem to have had operations for bone and spine problems,so I dont know. I do know I will ask a lot more questions before I make any decision. Been to the Docs today got a chest infection now hayho!!! onward and upward (a well known saying) Ted.

[teds31Participant]

Hi Helen ,thanks for the reply, I also have a chest problem so half the NHS will have to talk to each other 🙂 but the interview was left at more tests on the bowel problem and then we will get to talk again. I wouldnt say the bowel problem was non urgent but I could live without the opp I think,too many other after effects that I dont really need ,if you see what I mean. It was just that she took me by suprise with the immune thing as I had not thought of it before,and I just wondered if any one here had simular experiances. Ted

[teds31Participant]

Hi Jackie sorry about your Mum and I hope the news gets better, keep looking on here and ask all the questions you like there are lots of people with good medical advice. You should also ask your Doc as much as you can it helps to keep you in the picture. Ted

[teds31Participant]

Our hospital (Leeds) is just the same ,3hrs usually thats what we allow,we have bloods taken then 3hrs on average before seeing the Doc, I'm smoldering so dont have treatment and I can honestly say if he says OK come back in 3 months I'm happy.Ted

[teds31Participant]

Great news ,all the best. Ted

[teds31Participant]

I know just what you mean, keep up the good work. Ted

[teds31Participant]

Sorry to hear your news Robin but there are a lot of people on this site that can help as I personally know, keep reading all the posts and the leaflets that are available on this site and ask questions, all the best to you both. Ted

[teds31Participant]

Hi, I didnt understand the scales either ,but he did appear to be the "younger" of the team (if you know what I mean,we have all been there) but how he got from 200+ to 900+ I dont know, I wanted to ask other questions but this put me off and I just let it go and left. I will ask the questions next time as its only 8 weeks to my next appointment,hopfully with a differant doc.Ted

[teds31Participant]

Thanks Terry, Alex and Babs, looks like we could start a whole new forum on Light Chains alone. Dont quite get all of the info but I will read through and get back if I need more help. When I had my last visit to hospital they told me the light chain amount as 238,which was very low from 928, and then he said "sorry we are using Siemens scale " and he then reajusted it to 928 as it was the previous visit, so maybe we could be using differant scales, any one know for sure. Ted.

[teds31Participant]

Hi I dont want to hijack this topic but perhaps someeone could help me. I have had smoldering MM for about 6 years and the last few visits to hospital they said my "light chains" were showing a upward trend and they asked me to attend every 8 weeks instead of every 3 months,they have been fairly low so far but now are at 928??? which they say is the highest they have ever been, my PP is 13 and has always been about that. I thought that the PP was the one to watch and never knew anything about Light chains,can any one explain why Light chains are important and why. Ted

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