[leicsladParticipant]

hello elsie
welcome to the smoulderers. i was diagnosed 8 years ago similar circumstances to yourself at the age of 61 i was caught earlier so you can smoulder longer. i have 3monthly checks mainly by phone my paraproteins are around 32 but other numbers are fine. i have occaisional pet scans but i am on no meds other than stand by anti-biotics for chest infections. yes it is frustrating and you think every ailment is myeloma. i do get tired but simple rest. other than that i am fine, just had 1st shingles jab all my covids and feel fine. be happy keep smouldering live life as normal.
i am 70 next time and still smouldering.
steve

[leicsladParticipant]

hello paul sorry to here your wife as been diagnosed. regarding what all the numbers mean it is very difficult because it is a combination of them all.but just to put your mind at rest a little i have had 2mthly bloods 6mthly bloods and now have 3mthly bloods i am 68 years old and was diagnosed 7 years ago. my paraproteins are always 30+ but stable i have bence jones which is to do with light chains the number they tend to look at is the ratio. i do not have any medication other then adcal supplement, like your wife i have meds for other things, i do get a little over tired but not major. when i am tired i rest. i haven’t seen heamotology since lockdown i have bloods at doctors and phone appointment from hospital this works well. i try to carry on as normal, it does get you down sometimes but rise above it stay safe and well and have stanby antibiotics. take care steve.

[leicsladParticipant]

hello bumblelion
i was diagnosed at the age of 61 in 2015 my paraproteins have been consistant around 32. i had a bone marrow biopsy to confirm diagnosys. i do not receive any treatment because i am asymptomatic. i have 3 monthly bloods at my doctors and 3 monthly hospital appointments over the phone of which every other one is with my nurse. this works really well,i must also had i have contact with the hospital if required. i occasionally have had a pet scan to check for legions. the hospital check other things in your blood before they consider treatment, but i do think annual appointments are unacceptable ask your nurse or cosultant why.the watch and wait process is very stressful, but they won’t treat you for something you haven’t got. take care be mindful that every ache and pain isn’t myeloma. try to stay active
steve.

[leicsladParticipant]

hello sally
sorry to here of your diagnosis, i was diagnosed 6 year ago and i am still systematic, i have recieved no treatment in all that time and yes fatigue is an issue it creeps up on you all of a sudden and yes you do need to rest. i find i rest in the afternoon but not every afternoon only when needed to. keeping active helps but know your limitations don’t do to much. fortunately i am retired so can plan my days. just to let you know where i am at my paraproteins are 33 and have been stable around that figure for a long time. look after yourself rest when you have to and stay safe
steve

[leicsladParticipant]

hello confused and annoyed
unfortunately or fortunately my doctor diagnosed my myeloma then referred me to hospital. i then had bone marrow extraction and x rays which confirmed the doctors diagnosis, that is just the begining i have since been on watch and wait having blood tests 3monthly and occasional pet scans to check for bone leasons i have no major symptoms other than fatigue. the early diagnosis means you remain asymtamatic for a long while. you mustn’t let this creep into your head, trust your specialist and remember they are only at the end of the phone. i am due hospital appointment this thursday any change i will let you know. i have bloods at doctors week before appointment and it works well. i haven,t forget i have saved the best till last i have been on watch and wait almost 5 years due to early diagnosis. my paraproteins are stable around 35, and i have bence jones don’t understand that, to much knowledge is not always good.
stay safe and well and trust them that know.

[leicsladParticipant]

hello zsa zsa don’t worry about the bone marrow biopsy just keep sucking on the gas and air and enjoy the tea and biscuits after. just to re-cap i was diagnosed 4 yr ago my paraproteins then where 31 since then they have fluctuated a small amount going as high as 36. my last visit to hospital was in april 2019 they told me then because my readings had been stable for a while they didn’t want me at the hoapital till april next year pending blood test results that i have done at the doctors 3 monthly any problems hospital will ring me. my latest paraproteins where 31. hope this as been of help and reassurance. i also have once a year a pet scan no problem just time consuming. good luck for tomorrow keep in touch
regards steve

[leicsladParticipant]

hello hflan the fact your father is having a mri scan and possible a full body x-ray. is a means to establish a stake in the ground for future referance, i had these initially diagnosed at 62 (4 year ago) i then have them annually to see if there is any change. i have my bloods taken at the doctors 3mthly followed by an appointment at the hospital. at my last hospital appointment they gave me all the envelopes for my 3mthly bloods and made my hospital appointment for a year on the understanding they will phone of any change. the point being it as taken 4yr for them to establish some sort of level that is common to me. very frustrating but we have to keep at it mean while still tired so rest. stay happy and try to look after yourselves. leicslad

[leicsladParticipant]

hello claire i was diagnosed with myeloma at the age of 61 paraprotein count of 36 after diagnosis i had a bone marrow sample took no problem gas and air did the trick. blood tests every 8 week then hospital visit to go over figures. told to just carry on with normal life. do get a bit tired, fortunately i am retired so easy to rest when tired. i play golf regular and do everything i have always done, i am not on any meds for myeloma, i was diagnosed 4 years ago and i have annual pet-scans to check for any bone lesions. which i have done at a local hospital. sorry i cannot do anything about the waiting, it drives you mad but you learn to rise above it. just keep thinking of the benefits of early diagnosis, believe me there are some. i am on my hospital visit next week. hope ypu get support from family don,t forget it isn’t easy for them. hope this helps a bit. don,t be afraid to ask questions.
steve ( leicslad)

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