[keznmelParticipant]

Hiya

I was just sitting here reading some posts and I just thought I would reach out and ask about staging. We haven't been told what stage Melvin is with the Myeloma. When I asked at the last consultation, I was told that due to Myeloma being an incurable type of Cancer, they don't stage it. basically, if you have Myeloma, you have Myeloma and that's it! It never really sat right with me and I came out feeling like I had been 'fobbed' off! Melvin was with me obviously and our consultant is very aware that Melvin doesn't ask questions or say anything to be honest – and as the question came from me, I wondered if he chose not to say. I know that probably sounds stupid but… Melvin's consultant is a special man, he has always given us fantastic patient care and he has got to know us as people, not just patients. I honestly don't believe that he would keep anything from us, or can in his role. I see and read that so many people mention a stage that they are at with Myeloma…

Has anyone else been told this?

Thanks and best wishes to you all. Kerry x

[eveParticipant]

Hi Kerry

There are books you can get to tell you all about MM if you ask Ellen the nurse I am sure she will send you some,plus what ever hospital,Melvin goes to should have given you some.

I asked and was told they do not do staging any more,which was completely different from what the books said,when we went to Kings in London,I was told they do stage MM,its a mixture of bloods,Kappa light chains bone damage.:-P

There are 3 stages and I worked out my husband is at stage three because

He had,AKF plus Hypocalceamia (spelling)Tumour on spine plus breaks ,lesions on shoulder Blades plus on his Skull all spinal bones and ribs effected, sounds awful,I asked for copy,s of MRI scan plus kappa ;light chain results,after the first treatment CDT,the MM had gone up to 80% in the bones. I also get bloods every month.What you have to remember is all of that is damage caused by MM,get rid of the MM the damage is still there.You can understand why,they try to keep info to a limit,they do not know how you are going to react, once they realise that you keep up to date and not panic they will be more forth coming.If you do not ask!!!! plus you are not the patient!!!!!!

Slim also had septic pneumonia which damaged his lungs,left him with holes because if oxygen cannot get to lungs tissue dies,and leaves holes

Now for the good bit,He has got through all this,remission on Velcade,had SCT in May of this year,his last BMB showed no active MM cells at all in bone marrow.complete remission.00000,as you can guess after nearly 2 years,this is wonderful news.
So no MM but the damage is done,he lives with pain,and can no longer do things he use to do,but he is alive.

So staging does not mean nearer to the end,just means more complications.Get those books or search FAQ learn as much as you can,I live with a man that does not ask questions just get on with it,not a bad thing,it is the way he has chosen to manage MM,It works for him. Eve

[mhnevillParticipant]

Hi Kerry

From all the reading I have done, and various chats with my Consultant, I get the impression that "Staging" isn't really very helpful as a way of us working out prognosis for our MM. Some people can have heavy symptons and go on and on, and other folk can seem to be doing well and then an infection takes them off.

I do wish Melvin all the best in his personal battle and feel sure no one is trying to keep anything from you. Just keep asking the questions!!

Lots of love.

Mavis xxx

[wendyduffieldParticipant]

Hi Kerry

When I was diagnosed I wasnt told what stage I was ie 1,2 or 3 and didnt know enough about Myeloma at that point to ask. When I found out more about staging I decided I didnt want to know (but worked out I was probably stage 2/stage 3) because it would have only upset me, it makes no difference to the treatment or the outcome as Mavis says. I dont think Melvin's consultant is keeping anything from you but maybe as Melvin didnt ask the question, he didnt give a detailed answer.

I hope the treatment starts working and things start to improve in the next couple of weeks.

Wendy

[Anonymous]

Hello

Henry was told the same 'no staging' but the myeloma booklet does show staging. However He was told by another consultant that he had stage 1. Either way we didnt focus on that just what we needed to do in getting him through the treatment. The myeloma website is a great source of information and help.

Take care
love
sarah x

[keznmelParticipant]

Hi Eve

Thank you for getting back to me with that. I have read lots of literature and have sort of worked it out myself ( i think). I understand the process of MM and what it all entails – I'm a bit of a researcher and send myself crazy looking up this and that! I also ask for copies of the information and always take my note book and pen and document everything we are told. Our consultant and his team are angels and have got to know 'my ways' now so just expect me to want to know the ins and outs of everything. Melvin on the other hand is far from interested – he just wants to know what he has to do and that's all. Melvin starts the 3rd cycle of RCD on Tuesday and when we go to the hospital I will be asking if there is any improvement in the Light Chains, PP etc. So far, there isn't any and we were told that Melvin's bones are 50% effected by Myeloma.

I'm so glad that you're husband is 'on the mend' although I know that the bone damage and pain can be the worst part of the journey – I know it is for Melvin.

Thank you again – take care for now xxx

[keznmelParticipant]

Thank you Mavis – I tend to agree I think. If you have MM..you have it regardless!

I hope this finds you well – take care xxx

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