[teds31Participant]

Hi Mike, I haven’t been without problems most recently I am having IVIG infusions monthly due to chest infections, and my kidneys are showing signs of low function but these are problems that are due to the length of time I have had the MM.Thanks for the reply .Ted

[teds31Participant]

Hi Rachel, I suppose you have seen your GP now and have more information,but I thought I would just add a comment as I have had Smoldering MM for about 10 to 11 years ,its a very strange cancer and its different for every one ,like a personal thing. My paraprotien is usually about 12, I see the consultant every 3 months and generally ignore it the rest of the time. I hope you see a consultant he will give you a better idea of your progress for the future as GPs dont usually know a lot about MM. All the best and keep coming on this site as it always helps to talk to people who understand,and no one on here will mind how ever many questions you ask. Good luck. Ted

[teds31Participant]

been for the infusion it was painless and boring,had to sit there for about 4hrs the staff were marvelous.I go again on Dec 15th. ted

[teds31Participant]

Hi Every one,
I heard on Wednesday I am about to start my immunoglobulin trasfusions next Friday,I was really pleased ,but what happened on Thursday I started with a cold and now have a chest infection. I am taking antibiotics and steroids and things should clear up by hopefully Friday,perhaps they should have started the transfusions earlier but they are very busy and under a lot of pressure so I cant complain.When I went to the clinic last Wednesday there was 50 or more patients waiting we sat there for two and a half hours,and thats not unusual the record is 3 hours for a 10 mins interview, the NHS is under so much pressure but to keep 50 people with cancer that long aint good.I will let you know what happens with the transfusions.Take care, Ted

[teds31Participant]

Hi I’m back ,I am now having B12 injections (5) and tablets as they found I was anemic at my last appointment I am feeling a little less tired and a little more energy ,but I dont think I will be doing any marathons yet.I have got pains in my legs and I went into hospital just for two days to do tests but they said it was not MM and I am waiting now to see some vascular people ,because they think it is an artery problem, never a dull moment,serves me right I should never have said I did not have any treatment.Ted

[teds31Participant]

Hi Chrissie, No I’m not a vegetarian, and I dont have a special diet though I do eat quite a bit of fruit as this helps with the bowel problems. Hi Pete sorry you are having such a bad time ,infections of all sorts seem to be par for the course, but you must tell the Docs each time you have any health issues even if they dont seem to relate to MM, its a strange disease and you can never tell if other health issues are related. Ted

[teds31Participant]

Hi Chrissie,
It would be nice to think that we could take some supplement and all would be well, but over the 10 years or so I have found that for me its best to try and ignore the thing and wait for the next appointment,I have so many other health problems (Iam 84) that MM takes a back seat except just before my next 3monthly appointment.Take care and all the best. Ted

[teds31Participant]

Hi Chrissie, I realise how lucky I am and believe me its shear luck ,I was diagnosed with MM over 10 years ago now and have had no treatment of any sort since,I go along every 3months and have the tests and go home.I do have a problems with infections mostly the chest as I also have a lung disease,and thats why they are going to give me the transfusions.
You ask if I take any thing no I dont ,I dont have a special diet or take suppliments, though I can see they may help people who are suffering from other health problems as MM can have effect on other parts of the body.
It can be a strain when the hospital visit gets near but when you read some notes from other people on here you realise how lucky we are, so keep smiling and long may you smoulder. Ted

[teds31Participant]

Hi Ian and Jane, Having read Ians message I now realise that I have got it wrong,not difficult when you are in with a consultant and under stress, she must have said “Immunoglobulin” because she did mention that it was taken from blood donors after the plasma as been removed,and of course it refers to white blood cells not red cells. Thank you both for helping me out with that.I have found some info on the NHS site which is helpful but as I said they dont intend to start until later in the year and I shall have the opportunity to ask questions at the next 3 month appointment armed of course with your info. Thanks again for putting me right and I will let you know the results. Ted.

[teds31Participant]

will do. Ted

[teds31Participant]

Thanks Jean, I will have to wait quite a while for results as they dont intend to start until later in the year as I dont get as many infections in summer and it would be difficult to tell if it was doing any good (a good point) so they intend to start about August I think.Hope it works ,but we have to try anything as you know. Will try and let you know how it goes. Ted

[teds31Participant]

I think this is a very personal journey and no two people are the same ,thats what makes the smouldering job so difficult.Not only does PP effect things but also your “Light Chain ” results. This topic I’m afraid is where I am out of my depth.I dont take any thing as regard to MM but I do have other health issues which require medication,as I am 83 you can imagine that health issues are common, I just try to keep going and hope for the best.Ted

[teds31Participant]

I have been smouldering for about8 years and my PP goes up and down ,though only by 1 or 2 its now 10, but it has been 14 in the past.Ted

[teds31Participant]

When I go to see the consultant he gives me a set of blood envelopes with all the info on then 2 weeks before my next appointment I go to the nurse at my GPs and she does the bloods and sends them to the hospital. The GP doesnt know any thing about it. The nurse usually cant understand what its all about and often asks what the LC means (light chains) but the system works. By the way thats Leeds.

[teds31Participant]

Yes just as we have always said Nick, every one is totally different and I regard myself as VERY lucky.
All the best to you and others not as lucky as me. Just waiting now for the brown envelope to drop through the letter box.

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