[gina45Participant]

Dai i dont know what to say but agree with the others. I really hope you are ok, what a awful time it is for you. I cant imagine what you are going through but i do hope you start to feel better soon.
My mum starts this treatment anytime now, we are just waiting for the call.
God bless and take care Gina x

[gina45Participant]

Hi Meika and Christin. Im so sorry that your dad has this awful disease. My mum was diagnosed with mm in 2009, she is 71 yr old and a fighter.
Its really upsetting like you said to see your loved one go from a very healthy outgoing person(my mum was the same). to someone who is in constant pain and cannot do what they used to do. My mum is starting velcade in the next few weeks she has an appointment with her consultant on the 29th june so we will know more then.
The way we deal with things is plenty of time together, chats,laughs and lots of positivity. I think this is what gets us through this terrible time.
I hope your dad is ok and if you need to chat you know where we are.
This site is brilliant and the people on here have been a great support to me.
Take care and keep in touch
Gina x

[gina45Participant]

Hi Angelheart,
I hope you get sorted and everything explained to you properly, there is nothing worse than not knowing. Take care Gina x

[gina45Participant]

Hi Eve, hope things are going ok with slim,its a fight all the time isnt it and you sort one thing out then another comes along. But we all keep positive and fighting.

Mum is back home now she is relieved, she did stay in an extra day as they did a ultra scan on her kidneys, i havent heard anything so they must be ok. she did have an inflamed bladder. Was sent home with antibiotics and is happy. But she hasnt been out yet she still feels a bit lightheaded. We are now waiting for the phonecall for her to start her velcade,hopefully when she starts treatment she will start feeling much better,fingers crossed.
Please keep me updated on slim,its always nice to talk to others who understand.
Tom you are an inspiration always fighting and always positive, please keep us posted on how you are doing, and thank you for your kind words.
Gina x

[gina45Participant]

Thank you eve, stay positive thats what we have to do.
I hope that slim is ok, there is nothing worse than not being able to do anything you feel so helpless. Please let me know how it goes wont you
Gina x

[gina45Participant]

Thank you again for your support and advice. Mum is coming home tomorrow its been a long week. The infection mum had had gone into her blood so she had to have a drip with stronger antibiotics. she will hopefully be going home tomorrow as long as her blood pressure and temp stay ok.She was in floods of tears today and sent for us as the consultant that she has at the moment went to see her and without pulling a curtain round her or having a nurse or family with her told her she would be starting treatment very soon, she will be on velcade, he told her then just went. Me and my sister went to see Steve the hemotology nurse and he came down to the ward. He was brilliant, he explained what will happen and he will be doing it. mum was a lot happier.
They are giving her chance to recover from this infection and then she will be going in twice in a week for a fortnight then she will have a week off then the same again for at least 4 cycles.
Hopefully she will start to feel better and her paraproteins will go down.
So a busy and worrying time ahead but we will get there.
Gina xx

[gina45Participant]

Glad things are going better and wishing you well
Take care
Gina x

[gina45Participant]

Thank you all for your replies, you are a great support.
Been to MAU at the minute, her chest xray is clear and no problems with the ECG. Her temp is 41 so very high and her blood pressure still low. They said there is definitely an infection. She is on a drip and has fluids, paracetamol and antibiotics so hopefully she will start to feel a little better.
They said they are sure it is the myeloma that is causing this so they have referred her to the hemotology dept. They will go to MAU to see her. Im assuming that when they do they will start her back on treatment and hopefully she will be on the road to recovery very soon.
Thank you again for your support it is most appreciated
Gina x

[gina45Participant]

I cant imagine how it must be going through such a awful thing. But you are always positive Dai and you make others feel positive with your support.
You are all allowed you downsides to the treatment and you seem to have been through the mill.
You take care of yourself and hopefully you will start feeling like you again very soon
Gina xx

[gina45Participant]

It will be hard for you because 2 weeks is still raw and you will be grieving and asking what if etc. My dad died in 1989 of Stomach cancer and my grandad and uncle of lung cancer. My mum as been asked by her hemotology nurse if she would speak to a someone and fill in a questionnaire and give bloods to see if there is link between different cancers with blood relatives, so she is doing it, we will see. We keep asking the question about it being hereditary and hopefully in time we will have answers.
I hope you are ok and just take one day at a time, look after yourself, and if you need to chat then you know where i am.
Gina x

[gina45Participant]

I am so sorry about your dad Linda, this disease is an awful disease, my mum has it and she is 71.
We have been told that it isnt hereditary but can run in families but to be honest i dont think it has been proven.
I know that they are looking at links with other cancers with blood relatives but again nothing has been proven.
I really am sorry and i am thinking about you and your family at this sad time.
Gina x

[gina45Participant]

Thank you Bridget, i am going to ring the doctors on monday just to get her checked, i also want them to look at a lump at the top of her back, it may be just a cyst but better safe than sorry.
Thank you again
Gina x

[gina45Participant]

What a mess for you, i hope you are getting better now.
The positive thing is still in remission that is really good news.
Take care of yourself
Gina x

[gina45Participant]

Thank you so much for your replies,
Steven told my mum that the consultant that put mum on the list was only there for so long, but a new permanent consultant starts on the 20th June, he said he will try to get mum an appointment for that week so hopefully we will be going very soon.
Mum isnt too well at the moment and cant even go into the kitchen without getting out of breath, she has been getting pains in her side and some pains in the side of her head. So you can imagine why we are worrying, but im hoping that once they start her on her chemo again she might start to feel better. There are two options of treatment 1 is to give her the same treatment as before Thal, Chemo, and steropids or velcrade which is the one that is fed through a drip i believe. The consultant i assume will tell us which is best.

Steven said that some consultants believe that you should challenge the Myeloma with the same treatment and some believe to start a new course. So i dont know.

Thank you again for your support and replies it is most appreciated
Gina x

[gina45Participant]

Thinking of you today Gaye, hope everything is ok x

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