[GeorginaParticipant]

Hi Min

I was verry sorry to read your post. I think my mum has been running a similar course to Peter. She initially had Z-dex (4 cycles) but only had a partial response. She then had velcade on a clinical trial and had a good response. She had a sct but only got about 9 months remission. She restarted velcade but the myeloma progressed before she had finished her 8 cycles. She has recently started bendamustine on a clinical trial. She has finished her first cycle but they have had to put the next cycle of bendamustine on hold due to her low blood counts.
I think like you and Peter, we have gone through so many emotions over the last few weeks (and the last 2 and a half years). Some days you feel absolute despair but then tomorrow is another day and you start to feel more hopeful and cope with what is happening. Like Peter, there are some treatments she hasn't had yet and it only takes one to work to put this horrible illness back in its place. So keep hoping and enjoy every day. I will have my fingers crossed for Peter and everyone else.

Take care and keep strong
Georgina xxx

[GeorginaParticipant]

Tina, I am so sorry for your loss and am thinking of you at this very sad time. As others have said, no words are enough but everyone will be thinking of you. I followed your posts which I always found helpful. I am so glad that you had 34 years with such a special person. Cherish your wonderful memories.
All my love
Georgina x

[GeorginaParticipant]

Hi Bridget

Just wanted to say I'm thinking of you. Hope they get the pain sorted soon and you start to feel better.

Take care
George x

[GeorginaParticipant]

Welcome back Kevin. Glad to hear you are out of hospital
Keep up that fighting spirit.

Take care
Georgina

[GeorginaParticipant]

Hi all

When we were chatting to the pharmacist the other day about velcade, as others have said the have to make the dose up for your weight etc. It doesn't take log to do but just gets stuck in the pharmacy queue! They want to be sure you are going to have the velcade before they make it up because each vial cost £900!

He also said the manufacturer says it is only stable for 8 hours and after that they can't use it.

Best wishes
Georgina

[GeorginaParticipant]

Thanks Sarah. Knowing Gordon has been living with myeloma for 9 years is comforting. I hope he is having a great time on his red tractor. My nephew would be very jealous as he loves tractors (he's 4!).

to answer the question on paraprotiens, my mum's were too faint to quantify after her transplant and remained at that level even when she relapsed 10 months later. It was her serum level test which started rising.

Best wishes
Georgina

[GeorginaParticipant]

Hi Gaye

Sorry to hear about the fracture but glad you know what's causing all that horrible pain.

Good luck with the treatment and hope you feel better soon.

Take care
Georgina

[GeorginaParticipant]

Hi Jen

My mum had velcade in 2009 as part of a clinical trial before her sct after she stopped responding to her first chemo regime. She restarted velcade in August 2010 when she relapsed. She initially had it twice a week but responded so well they reduced it to once a week after 2 cycles. Last time on velcade she felt very tired and had numbness in her feet after 2 cycles but this time she hasn't had any side effects and has been very well. Her levels are better now than they were last time she had velcade. She is on her 6th cycle at the moment.

Good luck and keep us posted.
Best wishes
Georgina

[GeorginaParticipant]

Hi Jenny

I was really sorry to hear your news. As Gaye has said, palliative care and hospice care are very good and he should be comfortable. He may change his mind but whatever he decides, I'm sure having you and all the family around will be a great comfort and support.

My heart goes out to you and your family at this difficult time and I'll be thinking of you. Take care of yourself.

Georgina x

[GeorginaParticipant]

Hi Gaye

As others have said, I have really valued your posts on this site and all the information, advice and encouragement you give.

Good luck with the new treatment and I'll have my fingers, toes and everything else crossed for you.

Will be thinking of you. Keep us posted.
Georgina xxx

[GeorginaParticipant]

Hi Bridget

So pleased to hear they are starting your radiotherapy very soon. When my mum had the radiotherapy, she had 5 days but not at the weekend. She started on a Friday (as they wanted to get a treatment in before the weekend as they were concerned she was at risk of cauda equina) and then carried on on the Monday.

I hope you get pain relief fairly quickly. As you said, Prof Tobias says Myeloma responds very with RT.

Good luck
Georgina x

[GeorginaParticipant]

Hi David

That's great news. Hopefully your PP's will carry on falling. Enjoy the cycling and everything else you like doing.

Take care
Georgina

[GeorginaParticipant]

Hi Keith

As everyone else has said, so sorry you are having to start treatment again. Hopefully it will make you feel better and help with the pain in your ribs. It certainly helped my mum. Good luck tomorrow and keep us posted. I'll have my fingers and everything else crossed for you.

Take care
Georgina x

Bridget – good luck with your appointment this week with the radiologist. Hope they start treatment soon xxx

[GeorginaParticipant]

Hi Bridget

We saw Prof Tobias and his Registrar and they were very good. Both times my mum had her radiotherapy very quickly and it really helped

Do they know you are in a lot of pain? They may be able to bring your appointment forward. It might be worth giving the nurse specialist a call.

Take care

Georgina x

[GeorginaParticipant]

Hi Keith

My mum experienced a similar sort of thing with the pain. She starting getting pain in her sternum, then her arms, then her hip and back and it seemed to move around. We weren't sure if it was the myeloma but unfortunately it was. She had radiotherapy which helped enormousely and has been on velcade since August and is doing well.

I hope the myeloma hasn't come back, but if it has, hopefully you will feel beter after some treatment and be in less pain.

Good luck
Georgina x

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