Hi "K"

Welcome to the site. Sorry your Mum is having such a trying time. Don't have any specific answers, but just wanted to say that, maybe, given all the circumstances, less treatment is better at her stage. Is your Mum able to discuss this with you? Have you been in touch with the Pallitative Care Team in your area? I find their…[Read more]

Hi David

Good to hear you are now feeling a lot better so don't need to have PP count yet. We are all so used to you being upbeat and cheerful! Keep it up!

Very best wishes.

Mavis x

Hi Dai

I'm so glad the wedding went well. It sounds like the wedding venue was loveluy. Look forward to seeing photos.

Take care of yourself and Janet. I expect, like the rest of us, you are now wondering about Christmas plans. We are very sorry not to be able to make it down to London and the grandchildren this year, but we have got to…[Read more]

Hi Lisa

Welcome to the site. Hope all goes well with your Dad's treatment.

Best wishes.

Mavis

Hi Polly

You came into this MM battle in a similar way to me although I managed about 17 months before I had to start treatment. I had six rounds of CDT which knocked the PP right back, although I haven't been really cracking since the treatment finished about three months ago. I coped very well during the CDT – hope you do as well. I gave…[Read more]

Thank you Mavis – I tend to agree I think. If you have MM..you have it regardless!

I hope this finds you well – take care xxx

Hi Eve

Thank you for getting back to me with that. I have read lots of literature and have sort of worked it out myself ( i think). I understand the process of MM and what it all entails – I'm a bit of a researcher and send myself crazy looking up this and that! I also ask for copies of the information and always take my note book and pen and…[Read more]

Hi Andy

Just wanted to say Good Luck with finding a match for the All0 transplant. I have been reading about Jet's experieinces and admire those of you who decide to go down that route.

I am jealous of those of you who manage to meet up with others from the Forum, via your various hospital appointments or in a Support Group. It feels…[Read more]

Hi Kerry

From all the reading I have done, and various chats with my Consultant, I get the impression that "Staging" isn't really very helpful as a way of us working out prognosis for our MM. Some people can have heavy symptons and go on and on, and other folk can seem to be doing well and then an infection takes them off.

I do wish Melvin…[Read more]

Hi Peter…

You explained just how Melvin is. He said if it wasn't for the inability to work or resume normal activities due to the spinal cord compression, he would be able to live quite a 'normal' life while on the Dex. However – he suffers such a come down when he stops…like you, he feels so tired, almost lifeless. Only waking to eat most…[Read more]

Hi Mike

I'm sorry that you are going through a tough time at the moment. It's my partner who is 39 who has Myeloma, and is also on the MXI trial, RCD. He is at the end of the 2nd cycle at the moment. I noticed that you go to the QE hospital in Birmingham. We live in Birmingham and Melvin will be having his SCT at the QE. What a fantastic…[Read more]

Hi Tom

I have another person helping me with it all so I'm not totally on my own. Although I complain for being stressed at the moment, I feel like I need to inject all of my frustrations and emotions into something productive…if you understand what I'm saying. I may regret it, it may exhaust me but I feel I need something to focus on other…[Read more]

Thank you for your message Jo. People always say that I am coping really well and sometimes I agree. It may be the false smiles and 'I'm fine thanks' that I often reply when asked how I am. The way I see it – I have to cope, I have no choice. Who else is going to look after everything..Melvin and the children? Just sometimes, like now – I just…[Read more]

Thank you for your message Andy. It's very tough for all isn't it? Life completely changes when something like this sets up residence in your life and future. We have been referred to a Counselor individually and as a family, so our three children and myself and Melv can go. However..we haven't been yet as the Counselor cancelled the past two…[Read more]

Thank you Helen..what a day I had yesterday! I do feel a little better today, although my moods are all over the place. Our twin boys, who are 11 years old have gone off for a little break with my mum. Suddenly my shoulders seemed to drop. We have a daughter who is 16 and she is still home with us but she is so independent. She is revising for her…[Read more]

Hi Sarah Jane..

It is my partner Melvin who has MM. He is 39 years old and like you had SMM and then one day went to the hospital to find PP levels had increased and he started Myeloma XI and also is on RCD.

Melvin is at the end of cycle 2 and I think he has coped quite well so far. Unfortunately he isn't working due to his L3/L4 vertebrae…[Read more]

Hi Eve – thank you for your message. I agree with you – I am grieving and I think going through each stage slowly. Today and right now I feel angry…the denial has been with me since 2010 when Melvin was diagnosed.

I hope you are well – take care and thank you again. xxx

Hi Vicky – thank you so much for your message. reading what you wrote was like I was telling the story…just how I feel. I have also thought about using all of this in a positive way, maybe volunteering somewhere or studying maybe?! Who knows.

I hope that Colin is OK at the moment – how are you doing?

Take care xxx