[FIFICHICKParticipant]

Hi everyone my name is Fi and I am on here to try and find people who I can share thoughts with. My dad was diagonised with Myeloma a year ago and has undergone one session of radiotheraphy and several of chemo tablets and so far has sailed through. He is getting more tired which is understandable. But after successful chemo his protein levels have now reached the high levels they were when he was first diagnosed. My dad being the age he is (77) is of the generation that never asks questions and trust that the docs will tell him everything without being asked. I have managed to be lucky enough to be able to speak to his consultant in one instance but don't feel able to do so any more. I was wondering if anyone can give any advice as to what this may mean, what causes the protein levels to raise and also if the cancer is staged (I did ask the consultant and he said they dont stage this cancer, but having dealt with cancer in the past with a loved one I know that all cancers are and I feel that I am not being told something). I feel very unsure as to what to expect as I can find out very little from my dad, he doesnt feel the need to ask anything and seems happy to be without the knowledge of what he should expect etc etc. I guess I just like to know the nitty gritty to be able to know what to expect and how we can deal with it. any advice is gratefully appreciated.

Fi
xx

[jillsParticipant]

Hi Fi,

Welcome. You will find there are a lot of helpful and knowledgeable people on this site. I am a carer for my Mum who was diagnosed with myeloma at age 79 (she is now 82). Luckily I go to the appointments my Mum has with the consultant so I ask the questions and get the information direct from him. Could you go along with your Dad? I know that if I wasn't there she would not ask or understand but would just nod – that generational thing you mention. In Mum's case the protein levels are one factor but other blood indicators are also important to put it all in context. I think older patients also need support in making decisions about treatment and understanding how to manage the side effects.
You could also give the Myeloma helpline number on this site a call – they are very helpful and supportive.
Good luck anyway, Jill

[brochoParticipant]

Hi Fi sorry you are in the position of needing to join us but welcome Myeloma is such an individual illness it would be nearly impossible to guess whats going on with your dad as it needs the whole range of results rather than just paraprotein There is an excellent helpline on this site where medically trained people will be able to give you accurate info and they really are so helpful The other person you could contact is your dads specialist nurse , they are ususally easier to get hold of and have time for families as well as patients . I dont think they do stage now or dont choose to maybe If I remember right though Stage 1 was rise in paraprotein with no other signs or symptoms Possibly Stage 2 was paraprotein levels plus evidence of anaemaia nd or bone damage Stage 3 was raised paraprotein with sinificant bone damage, and involvement of other organs eg kidneys Check out the info pages on here as I have just tried to rememver off the top of my head So whilst your dads pp levels may have plateaud if there are no other significant areas needing treatment it may not be as bad as it seems Has he had a recent bone marrow biopsy or mri scan ? These tests help give a complete picture of whats going on, they may give him a break from treatment if he doesnt need any urgently to allow his body to recover from the chemo Try and get hold of the nurse and do give the helpline a ring You will get lots of support from all the lovely people on here who will help if they can Please let us know how you get on Best wishes Bridget

[michelleakitt29Participant]

Hi Fi

My mum has myeloma diagnosed in july 2009 at the age of 64, I was told then that they dont stage this type of cancer anymore…not quite sure why.
I just wondered why you feel that you cant talk to the consultant? My Mums is fabulous I just make an appointment and he answers all my questions with such honesty, I am also in constant touch with her lead specialist nurse who is also really helpful and honest with me. Have you tried talking to yours Dads Specialist nurse instead of the consultant? just a thought and I hope it helps.

with love michelle x x

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