[doddelParticipant]

Hi All,

My name is Donna and whilst I have read this forum for a while this is the first time for me posting. My Dad has Myeloma – was diagnosed in 2008 and has recently been given the news that there is nothing more that can be done.

He seems to be very confused at the moment and I was wondering if anyone else had experienced this or knew of a reason for it? (He had something to lower his calcium level on Monday and got blood yesterday so we are hoping it starts to improve over next few days).

Thanks

[michelleakitt29Participant]

Hi donna

what treatments has your dad already had? I am really sorry that you have been told there is no more that they can do. He sounds like they are still actively treating any problems, so why nothing else?

with love michelle x x

[doddelParticipant]

Hi Michelle,

He had CTD before his stem cell transplant (july 08) and by November 09 the myeloma had relapsed – he was on velcade for a while but suffered badly with neuropathy so they moved him to lanolidomide which they said his paraprotein count was increasing even though he was taking it which is why they have come to the decision they have.

We are getting a second opinion – meeting next Thursday with consultant so we have everything crossed that he might know of something else that they can try.

Thanks for listening!!

[michelleakitt29Participant]

Hi donna

I think it is a good idea to get a second opinion at this stage, I know there are other drugs that can be used especially if he has had SCT, think bendamustine is one of them, speak to the specialist nurse here at myeloma uk, she should be able to help you with information.

I am here anytime you want to talk, you can email me if you want too its no problem michelleakitt29@hotmail.com

with love michelle x x

[JdaxParticipant]

Hi Donna,

I believe yout father's confusion can be related to very high calcium levels – hence the medical team trying to reduce the levels.

I think the same as Michelle re the second opinion. There are 'other things', perhaps less widely used that can and are being used. I know someone else who didn't respond to the standard treatments and was put on one of these (sorry I can't remember what it was).

Calling the Myeloma help line has been a great help to me. They're very easy to talk to and give great advice.

Hoping the best for you and your Dad.

Jim

[doddelParticipant]

Thanks Michelle, – just speaking about it on here has been a great help too, hope all is well with your mum.

Have spoken to the Myeloma nurses who have been a great help. Getting a second opinion on Thursday with what we have been told is the best specialist in Edinburgh.

Dad was really confused today so we phoned the oncology unit who let us know that they were aware his calcium level was high and that they thought what they had given him wouldn't help too much – how much use is that!! He is now in the Western getting treated so hopefully they will get to the bottom of it and he will come out less confused cause its just as upsetting for him I think – not that he will admit it!!

Thanks

[GillParticipant]

Hi Donna

I do hope that your dad get's more help from now on. Let us all know how it goes

Gill

[PerkymiteParticipant]

Hi Donna, You do not say how old your dad is. This does effect the level of treatment the hospital will provide.

kindest regards

David

[michelleakitt29Participant]

Hi donna

I have found this site a great help, glad you have spoken to the nurses and are getting that second opinion, please let me know how you get on.

Mum just getting over pheumonia but is doing well thanks.

with love michelle x x

[KWilsonParticipant]

I agree the confusion could be linked to the calcium, it's well know.

Might be a good idea to ring one of the nurse on here now that they are saying the Lenalidomide is not successful. There are other treatments coming on line, altho you may need the help of Myeloma UK to get access to them. It's worth a try.

Good luck.

xxxxxxxxx

[brochoParticipant]

Hi Donna it does sound as if calcium could be causing your dads confusion , my father-in-law had similiar earlier this year Once they got his calcium lowered he got back to normal fairly quickly. You are wise to get a second opinion hope you get some answers Best wishes Bridget

[doddelParticipant]

Hi All,

Dad got out last night – he is 57. They managed to give him fluids and pomidronate to lower his calcium and more blood so he is alot better today.

Although whilst he was in the second opinion Dr came to see him with an even worse prognosis, his myeloma is very aggresive and can no longer be treated with anything and they have now said weeks instead of months – hopefully he can prove them wrong though!!

[brochoParticipant]

Dear Donna I am so sorry to hear the doctors think your dad is untreatable and I really hope he can prove them all wrong love Bridget

[tomParticipant]

Hi Donna

So sorry for the delay in posting but have just found your posts.

So Sorry that they said nothing else can be done for your Dad, its a bugger of a illness is this MM, and I hope your dad proves them wrong.

Love and Best Wishes

Tom xxx

[KWilsonParticipant]

Very difficult to predict things with this strange disease. I was sent home to die 9 years ago! Fortunately, I pulled through and altho' I've had ups and downs I've had more of the ups.

xxxxxxxxxxx

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