[saraheverettParticipant]

Hi My 78 year old mother has had regular monitoring of her blood for the onset of Meyloma and in the last couple of weeks been give a positive diagnosis followed by a MRI scan last Friday. I am going with her to her treatment consultation on Tuesday and wondered if anyone can advise and what sort of questions may be adviseable to write down in advance to ask? My  mum is a very private person and has reluctantly agreed to me going with her so I really feel in the dark about what she has/is going to have to deal with. Thanks for any advice

[paulapurpleParticipant]

I’d have a look at the information section on the Myeloma UK site https://www.myeloma.org.uk/information/

which should help you to compile a list of questions. I would want to know what type of Myeloma she has and whether she has any bone lesions (MRI should show this). Next big question is the treatment plan. I assume she also had a bone marrow biopsy? Ask what this revealed if you don’t know this info yet.

[saraheverettParticipant]

Thank you – the consultant just referred to it as Myeloma. They were going to start chemo instantly and then decided as there were no bone lesions to leave treatment for now and look again next month. She is currently on steroids for PMR which has similar symptoms to this and has been myeloma in waiting for many years! She has not taken well to the steroids for the PMR and can be quite a negative person so I was left with the feeling they would try to postpone treatment for as long as possible as they were not sure how it would go for her mentally as well as physically.

Do you know if there are Myeloma nurses that I could perhaps arrange to come visit her to explain things further or do I just sit tight and await next months consultation and news?

 

Mum gets confused easily (she feels this is due to the current steroids she is on) so we have left it as she knows what she has but it does not require treatment this month so to enjoy this month and to take each week as it comes.

My brother is 54 and lives  with her but I think is struggling himself to keep things together and quite frightened of where this is all going but unable to ask the right people or help and support.

I live a couple of hours away and finding it difficult to know how best to help!

 

Sorry long post – just getting it off my chest!!

 

 

 

[paulapurpleParticipant]

I really feel for you when you aren’t able to be there all the time. I am lucky in that one of my daughters lives nearby and is very supportive. My husband doesn’t deal with it well as underneath it all I think he doesn’t want to face what this thing really is, especially as at the moment I am not responding to treatment. Perhaps men find it harder to cope with when we just get on with it!

Usually you are assigned a key nurse that you can liaise with. I have a cancer specialist nurse whom I see as well as my consultant so If I need to talk about anything I can ask to see them. Might be worth asking if this is the case.

Steroids are funny things! They make me irritable and snappy sometimes. I take large doses twice a week and when they start wearing off I get a crash and feel terrible (withdrawal symptoms) so they are not the easiest thing to cope with.

If you want to garner other people’s views I suggest you join the UK Myeloma Support group Facebook page as you will get swift responses from both other carers and people with Myeloma. I have found it very useful.

[saraheverettParticipant]

Thank you Paulapurple – appreciate your reply.

 

[tmcintyreParticipant]

My husband doesn’t like to have too much information and the consultant and nurses understand that. When first diagnosed he was told he’d have 4-6 cycles of induction treatment followed by SCT. Things have not gone to plan and he is now on his 8th cycle , his third combination of drugs, and he takes each cycle as it comes. He knows the aim is to get to SCT and he knows he will be on maintenance drugs afterwards and in the meantime he is trying to live as normally as possible

He has a contact list of specialist nurses if he needs to talk to someone.

• This reply was modified 7 years, 2 months ago by  tmcintyre.

[paulapurpleParticipant]

I’m like your husband. I started on Velcade which didn’t work, then they added in the Thalidomide which has sent my peripheral neuropathy through the roof, plus it doesn’t seem to have made any difference. My consultant is worried about the neuropathy and lack of response so I think he’s going to change the drugs again next week. The aim is to get to SCT too but at the moment that seems to get further and further away. Sometimes you don’t know whether you are coming or going.

[tmcintyreParticipant]

Hi Paula,

Velcade seems to be the popular choice for induction at the moment, no doubt something new will come along in the future.  I suppose we have to accept that not everybody will get good results from it but I kind of wish the consultant hadn’t specified a time frame for everything because its really upsetting when it doesn’t pan out that way. Also SCT is the aim whereas I have read some people’s thoughts that it might not always be the best option.  Who knows, we have to trust the consultant. My husband just wants this year to be over.

I think we’ve been in touch on the FB forum too.

Teresa

 

[tonyfParticipant]

Sarah, maybe this will help.

Why not contact the myeloma nurses at Myeloma UK.

They are very knowledgeable and understanding.

Best of luck

Tony F

[saraheverettParticipant]

Thank you all. Just got to read her consultants letter whic now refers to it as smouldering hence the hold back on treatment.

She actually seems better in herself than she has for a long time which is good.

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