I am so so sorry to hear your news. Like everyone else has said, you have been a tower of strength to so many people with your encouragement and wise words.

I just hope there is something else they can do.

I'll be thinking of you and will have everything crossed.
All my love
Georgina x

Hope today went as well as it could have and thinking of you.
Lots of love
Georgina x

I'm so sorry to hear your news and have my fingers crossed that there are other options.

Low platelet counts does seem to be an problem with the bendamustine as the same thing happened with my mum.

Thinking of you
Georgina x

Glad you are getting some help amd hope you are getting some sleep.

Take care of yourself
Georgina x

I think you are right that it gets harder, but let's hope then it will get easier. I think when it first happens, you cope ok because it isn't really real. You just expect the person you love to walk through the door. Then the longer it goes on, becomes the horrible realisation that they are never coming home and you are…[Read more]

I just wanted to say I hope Peter is feeling better soon. Take care of yourself. It is so exhausting, mentally and physically, when they aren't well.
Sending you lots of love
Georgina x

Good to hear from you.

Hope you have a great break before the SCT. Good luck with the SCT and I hope you get a long long remission.

Keep strong
Georgina x

That's great news. My mum has just started revlamid this week but on half dose (25mg every other day) as her counts are too low and they are not sure if they will cope with it. Unfortunately, they are not very optimistic about it working as her myeloma is very out of control at the moment. I'm just keeping everything crossed that it…[Read more]

My mum was on the bendamustine trial but had to come off it as her counts (platelets, neutrophils and Hb) all went very low after the first cycle. They waited a few weeks to see if they recovered to continue on the trial but unfortunately they didn't. I think her counts went down due to the myeloma being very active and the effects of…[Read more]

In 2009 my mum was neutropenic and developed septicaemia and ended up in ITU. She had acute renal failure with very high levels of creatinine and poor kidney function. They were about to start dialysis but then decided to wait and monitor. They told us there was a good chance her kidneys wouldn't recover and she would require dialysis.…[Read more]

I was only just thinking of you last night and wondering how you were as it has been very quiet without lately. . Glad to hear the MRI and bmb ruled out any new myeloma activity.

I haven't got any advice to give you on pain relief but just wanted to say it was nice to hear from you.

Hope you get some answers and are in less…[Read more]

Sorry to hear Stephen found the 2nd SCT much harder but so glad he's home now. Hopefully he's over the worst and on the road to recovery.

Take care of yourselves.
Georgina x

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…[Read more]

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

Take care
Georgina

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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

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…[Read more]

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

Take care
Georgina

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…[Read more]

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

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…[Read more]

Sorry for the delay in replying. I was so sorry to hear your news. I hope you are better now after the chest infection. Hopefully the radiotherapy will do its job and you will be in less pain. It worked very well for my mum.

I've got my fingers (and everything else) crossed for you and hope 2011 will be a good year. As others have…[Read more]

I was so sorry to hear Michael is still so poorly.

Thinking of you and take care of yourself

Lots of love
Georgina

That's really good news and so lovely to hear. Hope your mum starts to feel a less tired soon.

Best wishes to you and your family and hope you have a lovely christmas.

Take care
Georgina

I'm so so sorry to hear it has come back. I know it is a real shock when you relapse. My mum relapsed in August 10 (after her SCT in September 09) and I remember revisiting all those feelings of when she was first diagnosed including fear, anger etc. She has been on velcade since August and has had a good response. She is now only…[Read more]

Its Jose.

Best wishes
Georgina

It is my mum who has myeloma. She was diagnosed in January 2009 at the age of 65. After her first cycle of chemo she became neutropenic and got an infection. She was very poorly and was in ITU with acute renal failure. Luckily she made a good recovery. After more chemo, she had her SCT in September 2009 and actually sailed through it.…[Read more]

I have followed yours and Michael's journey for some time and just wanted to wish you luck for Thursday and say I'll be thinking of you.

Take care of yourself
Georgina

Thanks for the info. My mum is on pamidronate. She was on zometa when first diagnosed but this was changed to bonefos when she had acute renal failure (she fully recovered). She wasn't on anything after her SCT but the myeloma has recently returned and she has been put on pamidronate. I did ask about zometa as I had seen the recent…[Read more]

I saw on your post that you were originally on pamidronate but have recently changed to Zometa. Can I ask why you've chamged?

Many thanks
Georgina