Welcome to Cancer Chat, Taylor Rose, although I'm sorry for the reason that brings you here.

What a bitter-sweet time this must be for you, to have met the man of your dreams and to have to deal with the news of your dad can't be easy. I do hope you will find some support here among our friendly members, hopefully, some of them will be along shortly to chat with you and give some advice.

In the meantime, as you mentioned you never heard anything about this type of cancer, I thought I'd share with you a link from our website about myeloma, to read more please click here.

Also, if you wish to speak to someone medically trained over the phone please know that our cancer nurses are just a phone call away and you can reach them by ringing this phone number 0808 800 4040  Monday through Friday from 9 a.m. to 5 p.m.

I hope this helps.

Best wishes to you and your dad,

Renata, Cancer Chat Moderator

Hi Taylorrose,

I have myeloma. Diagnosed in October 2016, chemo until Feb 17, radiotherapy in March and in remission now, just passed my 9 months clear.

I see your dad's in the early stages of diagnosis, a hectic time for everybody. It's not quite clear what you mean when you say he's getting a scan to see if it's spread. Multiple myeloma is so called because it occurs all over the body, rather than as a single plasmacytoma.

If there are extramedullary plasmacytomas (in the soft tissues) it tends not to be a good prognosis, as I understand things, but you could expect to have bone lesions all over and still respond well to treatment and have many years.

It's incurable but treatable. People can live for weeks or 20+ years but it's so individual that nobody can tell which person will respond to treatment in which way.

If you have any questions, please feel free to ask and remember, even though it all seems overwhelming now, all anybody needs to be is 'sufficient to the moment'

Best Regards

Taff.

Hey Taff

Many thanks for responding. 

That’s good news you are in remission and have just passed your 9 months clear, I wish you the best.

The doctors say at the moment he only has tumours in the lower end of his spine and they was concerned that it might have spread upwards. 

He has just been rushed to hospital as he was in such pain with his back and they was worried the tumour pushing on his spine could cause him to be paralysed so they needed to have him in to be monitored and given pain relief through injections, they may start chemo tomorrow. 

Thank you, I’m sure as the next few days go on I will have some questions.

Kind Regards

Taylor Rose 

Hi Renata 

Thank you very much for your response and for sending me that link,

I found it very useful and helped me to understand a few more about things about Myeloma.

Many Thanks 

Taylor Rose 

Hi my dad was diagnosed with multiple myeloma in 2017. He had treatment and it went in to remission.... In the last few months I have found out it's no longer in remission...... He won't leave the house and won't talk to me so I'm in the dark about everything..... I would appreciate any info on multiple myeloma...... I know he has to have an infusion of a dug beginning with the letter D...... I have no idea if I'm going to lose my dad and I'm extremely worried..... Plz help

Hi KimKate,

I've just relapsed as well. I can tell you it's not all doom and gloom - myeloma is a remitting/relapsing cancer and disease progression is to be expected at some point.

There are many treatment lines available over the course of the disease and overall survival is being conitually extended.

It would not be possible for anybody, even your dad's medical team, to be sure how the disease or any of its treatments will affect a particular individual, except for a very few circumstances, so the way I deal with everything is to live, literally, in the moment. Not easy to do for most people though.

Myeloma's a huge subject - for a general overview, I'd recommend reading all the info about it here on cancer research, on the myeloma.uk site, or the myelomabeacon forum.

Otherwise, if you can be a bit more specific about what you'd like to know, I'll help as much as possible.

Best Regards to you and your dad

Taff

Hi kimkate

My father is on a medication called megace . It is used.to kill the white blood cells but it has frozen his haemoglobin.he doesnt talk much. He is in India

He just keeps.lying in bed and also eats hardly anything and is losing a  lot of weight. I dont want to lose him.he doesnt talk to me about what doctors tell him..I am.in the UK..I am going to talk to his doctors soon but at this point I feel so helpless