Myeloma Forum | tedsimpson | Activity

tedsimpson replied to the topic Possible MGUS? Very scarred. in the forum Smouldering myeloma / MGUS

Thu, 16 Mar 2017 00:07:55 +0000

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

tedsimpson replied to the topic Possible MGUS? Very scarred. in the forum Smouldering myeloma / MGUS

Wed, 15 Mar 2017 21:21:44 +0000

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…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Sun, 20 Nov 2016 22:21:20 +0000

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

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Tue, 15 Nov 2016 00:04:32 +0000

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…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Thu, 11 Aug 2016 14:22:19 +0100

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…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Tue, 26 Apr 2016 20:37:34 +0100

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,…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Tue, 19 Apr 2016 22:14:01 +0100

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…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Sat, 16 Apr 2016 21:58:12 +0100

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…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Thu, 07 Apr 2016 22:47:59 +0100

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…[Read more]

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Tue, 05 Apr 2016 22:36:36 +0100

will do. Ted

tedsimpson replied to the topic hemoglobin in the forum Smouldering myeloma / MGUS

Tue, 05 Apr 2016 20:20:03 +0100

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…[Read more]

tedsimpson started the topic hemoglobin in the forum Smouldering myeloma / MGUS

Mon, 04 Apr 2016 22:40:43 +0100

I have been smoldering for over 10 years and today I went for my check up and the Doc said they were thinking of giving me an injection of hemoglobin to help with my immune system as I have serious chest infections.Has any one else had this treatment and if so does it work, as it seems that I will have to go to the hospital once a month,to have it…[Read more]

tedsimpson replied to the topic Paraprotein- rates of increase in the forum Smouldering myeloma / MGUS

Mon, 08 Dec 2014 17:35:06 +0000

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…[Read more]

tedsimpson replied to the topic Paraprotein- rates of increase in the forum Smouldering myeloma / MGUS

Mon, 08 Dec 2014 16:48:04 +0000

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

tedsimpson replied to the topic How confusing is this journey? in the forum Newcomers

Tue, 08 Jul 2014 23:47:41 +0100

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…[Read more]

tedsimpson replied to the topic How confusing is this journey? in the forum Newcomers

Wed, 18 Jun 2014 22:44:25 +0100

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.

tedsimpson replied to the topic How confusing is this journey? in the forum Newcomers

Tue, 17 Jun 2014 22:11:58 +0100

I have just been reading through all your comments as I haven’t been on here for a while, I am 82 and have had smoldering MM for over 7 years and I understand your remark ” head is a shed” I mostly forget about it now but I get 3 monthly check ups at the cancer unit at the hospital, and its usually a five minute interview all the results are OK…[Read more]

tedsimpson replied to the topic How confusing is this journey? in the forum Newcomers

Sun, 11 May 2014 21:20:23 +0100

Hi Karen, I have been Smouldering now for about 7 years I know that I’m lucky and every one is different, but thats how it is with this MM you cant tell and as there is no cure as yet so as my consultant says enjoy it while we can. Rebecca has given good advice , keep in touch on this site and ignore all the others,you will get lots of help and…[Read more]

tedsimpson replied to the topic Back Pain in the forum Newcomers

Mon, 28 Apr 2014 22:50:21 +0100

Hi Susie, I am a smoulderer and have had back pain but as I am 82 I think that may have other causes in your case if you are having 4 monthly tests I think they will pick up any problems as far as MM is concerned.Do you have blood tests on the day you go to see the Doc or do you have them a week or more before, I used to have them on the day I saw…[Read more]

tedsimpson replied to the topic Anyone from South Yorkshire. in the forum General

Sat, 22 Mar 2014 01:11:31 +0000

Hi Molly, Sorry I’m not from South Yorkshire, I live near Leeds, I go to St.James for treatment, brilliant place though. Ted

tedsimpson replied to the topic Blood Test Results in the forum Newcomers

Sat, 22 Mar 2014 01:07:27 +0000

Dont worry too much yet wait for the test results and read up on MM as suggested, I’ve been smoldering for about 7 years so I am lucky you may be too. Ted

tedsimpson replied to the topic Serum free light Chains kappa and Lambda in the forum General

Tue, 11 Mar 2014 20:30:57 +0000

Hi David,
I found out about light chains last time I went to see the consultant and wondered what it was all about, but there is a good pamphlet you can download (or just read) on this site under the information section. Ted.

tedsimpson replied to the topic waiting in the forum Newcomers

Tue, 18 Feb 2014 23:31:52 +0000

Hi Wendy, The amount of Parprotien in the blood gives a indication of the progress of the MM it can vary quite a lot and is different for each person as MM is a very personal disease, mine last time was 12, not a lot different to yours really.I go 3 or 4 times a year and they just take the blood samples and measure the Paraprotien and the light…[Read more]

tedsimpson replied to the topic waiting in the forum Newcomers

Thu, 13 Feb 2014 22:17:02 +0000

Hi Wendy, I have had Smouldering myeloma for 7 years and still going strong, I have been lucky I know that, but every one is different and its a very individual disease. While you are smouldering do as my consultant advises and make the most of it and live every day. Good luck and may you smoulder for a long time. Ted

tedsimpson replied to the topic new one in the forum Newcomers

Thu, 16 Jan 2014 23:06:21 +0000

Hi Chris, Been trying to get to you for a couple of days but the forum wouldn’t work for me. I am a lot older than you (82) but I have been smouldering for 7 years, its not easy but of course its much better than the alternative which a lot of people on here have to suffer. There is a leaflet that you can download and print out (go to Information…[Read more]

teds31 replied to the topic Hi in the forum Newcomers

Mon, 16 Dec 2013 23:58:08 +0000

Hi Nick, I cant help you much but it might be a good idea if you knew what “Light chains and Paraprotien” was there are several good leaflets that you can download from the Publications on this site, very helpful if you want to know more or want other people to understand. Ted

tedsimpson replied to the topic Counselling for Henry in the forum General

Tue, 14 May 2013 23:50:26 +0100

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…[Read more]

tedsimpson replied to the topic Complaint to NHS re late diagnosis in the forum General

Mon, 13 May 2013 22:55:23 +0100

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…[Read more]

tedsimpson replied to the topic MM and immune system in the forum General

Thu, 18 Apr 2013 23:07:08 +0100

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…[Read more]

tedsimpson replied to the topic MM and immune system in the forum General

Wed, 17 Apr 2013 23:39:31 +0100

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…[Read more]

tedsimpson replied to the topic One year on (A long year) in the forum Newcomers

Wed, 17 Apr 2013 23:11:47 +0100

Well done Paul, keep it up mate. Ted

tedsimpson replied to the topic MM and immune system in the forum General

Sun, 17 Mar 2013 00:36:14 +0000

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…[Read more]

tedsimpson replied to the topic MM and immune system in the forum General

Sat, 16 Mar 2013 19:27:12 +0000

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…[Read more]

tedsimpson replied to the topic My Dad in the forum General

Wed, 13 Mar 2013 00:04:48 +0000

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

tedsimpson replied to the topic MM and immune system in the forum General

Mon, 11 Mar 2013 21:33:57 +0000

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…[Read more]

tedsimpson replied to the topic MM and immune system in the forum General

Sat, 09 Mar 2013 19:24:00 +0000

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

tedsimpson replied to the topic MM and immune system in the forum General

Fri, 08 Mar 2013 22:36:09 +0000

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

tedsimpson replied to the topic MM and immune system in the forum General

Thu, 07 Mar 2013 21:33:38 +0000

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

tedsimpson replied to the topic MM and immune system in the forum General

Thu, 07 Mar 2013 20:04:56 +0000

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…[Read more]

tedsimpson replied to the topic MM and immune system in the forum General

Thu, 07 Mar 2013 00:43:33 +0000

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…[Read more]

tedsimpson started the topic MM and immune system. in the forum General

Wed, 06 Mar 2013 21:18:55 +0000

Hi All, I have just been to a gastro clinic as I have a colon problem ,and they say that a operation might be on the cards but as I have MM they say my immune system may be effected and that may stop me having an opperation. I may refuse the operation anyway but has any one had this problem with MM and the immune system. Ted

tedsimpson replied to the topic my mum in the forum Newcomers

Wed, 06 Mar 2013 21:07:52 +0000

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

tedsimpson replied to the topic First time for everything... in the forum Treatment

Sat, 23 Feb 2013 22:48:45 +0000

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

tedsimpson replied to the topic Three little words...... in the forum General

Wed, 20 Feb 2013 21:34:36 +0000

Great news ,all the best. Ted

tedsimpson replied to the topic Little things mean a lot in the forum General

Fri, 15 Feb 2013 23:04:40 +0000

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

tedsimpson replied to the topic Dad's been diagnosed.. I want to understand more! in the forum Newcomers

Thu, 14 Feb 2013 23:44:08 +0000

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

tedsimpson replied to the topic light chain myeloma in the forum Newcomers

Thu, 31 Jan 2013 16:01:21 +0000

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…[Read more]

tedsimpson replied to the topic light chain myeloma in the forum Newcomers

Wed, 30 Jan 2013 22:43:59 +0000

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 "…[Read more]

tedsimpson replied to the topic light chain myeloma in the forum Newcomers

Tue, 29 Jan 2013 23:47:31 +0000

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…[Read more]

tedsimpson replied to the topic First time diagnosed in the forum Newcomers

Thu, 10 Jan 2013 22:46:22 +0000

Hi Paul, Sorry to hear your sad story ,I cant help much as I have smoldering MM which has no syptoms and no treatment at the moment, but some one will be along soon to help and give advice . Stay on this site and you will get help. Ted