[pb42Participant]

Just recently diagnosed and doc said asymptotic myeloma. So myeloma without symptoms but where does this fit as regards smouldering and mgus? I have had a mri and awaiting results and have an appointment for bone marrow biopsy so perhaps I need to find out the results to know exactly what category I am??? Are you always given a grade for this?

[Anonymous]

Hello there..it’s early days and i think you probably need to await the tests and results. I went through this last Summer and it took a couple of months to get a proper diagnosis and even then it’s not always possible to see where it’s going till time has passed. Asymptomatic generally means Smouldering myeloma. Myeloma is not quite graded in the same way as it’s very individual.Hope you soon know more and I wish you all the best..Deirdre.

[Anonymous]

Hello there..it’s early days and i think you probably need to await the tests and results. I went through this last Summer and it took a couple of months to get a proper diagnosis and even then it’s not always possible to see where it’s going till time has passed. Asymptomatic generally means Smouldering myeloma. Myeloma is not quite graded in the same way as it’s very individual.Hope you soon know more and I wish you all the best..Deirdre.

[Anonymous]

Sorry there.. I’ve submitted my reply 3 times! Managed to delete one of them
..this is the first time I’ve replied or posted so still new to this.

[pb42Participant]

Thank you for reply Deirdre. I was diagnosed with breast cancer in October and had lumpectomy in Nov and have appointment today to find out treatment plan but this has thrown a spanner in the works! One needs treatment and one doesn’t (yet)! How did you feel after diagnosis and how are you now if you don’t mind me asking?

[Anonymous]

Hi..really sorry you have had to deal with 2 lots of bad news!! I sort of know the feeling as I had Cervical cancer 6 years ago and was treated with chemo/radiation successfully and now this. I was shocked to be honest and it too k a while to sink in.. at first I didn’t want to know anything about it but then the fear grew and I realised that knowledge is empowering so I downloaded lots of info from this sight. I’m Ok ish now.. with the ‘new normal’and you know lots of new stuff in the pipeline I believe.
I didn’t expect to need treatment yet as I have no end organ damage but the latest thinking is to treat pre emptively as there is so much progress in this field.
I will say to you that I’m very new to understanding all of this so forgive me if I’m a touch mistaken here and there..hope you soon get your test out of the way..xx

[pb42Participant]

Thank you for quick reply. I’d never heard of when received letter and when googled felt sick! Like you I feel finding out more does make you feel better but does seem very complex. Because I feel fine I’m hoping that things are internally as assume I would have symptoms? I was taking hrt for two years as had horrendous symptoms, sweats and achey joints which disappeared but have gradually returned (not so much aches just sweats, not as bad as before) but obviously stopped because of bc diagnosis. Now I fret any sensation or tingles is myeloma and not menopausal which I’m convinced it is. Feel as if too much going on at the moment. I have lots of appointments going on this month so hopefully by end may know more. Do you take any supplements? Sorry for long reply!

[pb42Participant]

I think that last reply confusing at beginning! I stopped hrt because of bc diagnosis. Symptoms gradually returning.

[Anonymous]

..I know some can have Smouldering myeloma for years and years and some for a shorter time..I could have had it for years without knowing as without symptoms, only certain blood tests would show it up. I have some symptoms at present but they could be nothing to do with Myeloma..I am going to be treated as my free light chains are rising and it’s to pre-empt damage.
I do take multivitamins and minerals..extra vitamin D and hemp seed oil capsules..and CBD oil..not sure how much good they do but my blood counts are always ok..hope this helps..please ask anything you want..it’s good to share and I’ll always get back when I can..

[pb42Participant]

Thank you Deirdre, be good to keep in touch as does make a huge difference sharing and taking with others. Free light chains, have read about this but another thing that doesn’t mean much at the moment to me. Never had chance to speak to nurse yet and will bombard at first chance. I don’t find googling about blood results helpful as still complicated! So lots of factors other than protein in blood? May I ask what your protein level was at diagnosis? I’ve started taking curcumin as read great things about it so worth a try but currently only having 0.5g per day and have read 8g could/should be taken. Thank you for replies.

[Anonymous]

..something was 600..rose to 1000 and now 2000 but I think it’s the free light chain level not protein..However I’m a little unsure as when I ask I can’t take it in and to be fair it’s complicated.
I have read great reports about Curcumin but I have radiation proctitis from previous radiotherapy and it affected me very badly when I tried just a 16th of the dose..too scared to try again. Ithink the recommended dosage is 8gramms..seems a lot!!

[Author]

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