[digredsParticipant]

Hi Richard – so much to consider, so much to learn – certainly about SCT. I’m only just getting  my head around what MM is, and how my current treatment affects me so not really given too much thought to the transplant element. Need to up my game I think.

Blue cheese….yum. I’m not allowed it at the moment so am quite jealous that you can have it every day. Enjoy your lunch tomorrow! 🙂

 

[digredsParticipant]

Hi Jean,

My problem wasn’t that I couldn’t join the group..I just couldn’t find it. But thanks to you, I just have and have sent a joining request..or whatever you call them! (Told you I wasn’t very good with facebook)

Many thanks.

[digredsParticipant]

Hi Jean,

Could you post the link for  the Facebook forum please? I have had a look but am no expert on FB so am struggling a bit. I am newly diagnosed and am still at the stage were I am wanting to read as much as I can from people with MM who know far more about it that I.

Jane – I have an 11 year old boy so I know how you feel re protecting your son at this stage. He was my first thought when I was told I had MM and the hospital were really supportive and helpful but lets face it, nobody knows their child better than their parents – you will know (when the time is right) what to do and how to handle it.

As for chemo – I am on velcade..no outwardly visible signs are apparent. My son knows I have ‘injections’ twice a week and thats it. Our decision was to drip feed the info to him for as long as we can. When we did the ‘sit down talk’ he quickly made it apparent when he had heard enough so we didn’t push it. Made it clear he can always ask questions but I do wonder if he is slightly afraid of asking in case he doesn’t like the answer? Its not easy, but you will find your way.

Good luck.

Lorraine

[digredsParticipant]

Hello Sarowjen..or should I call you ‘Marmite Girl’?

My taste buds have changed since I started treatment..I was always a ‘savoury’ snacker but now its sugar all the way. I have been living by the old ‘a little of what you fancy does you good’ adage but I think its time now to get a grip! 🙂

Had bloods done again this morning and the results had further improved so I was able to have velcade again this afternoon. I hope you take this the right way, but it is nice to find someone at the same stage as I am. Hopefully we can help each other out as our journey progresses. xx

Richard – are you, like Tony, going to have a second SCT?

Hoping everyone has a good day tomorrow

Lorraine

 

[digredsParticipant]

Tony and Richard – many thanks for your responses and insights. My results seem to have improved so I will try Velcade again with twice weekly bloods to keep a close eye on my liver. Fingers crossed!

[digredsParticipant]

Hi Sandra,

I’m new to this forum and this disease BUT..the specialist nurse at the hospital I am being treated at seemed to be pretty sure that as a newly diagnosed MM patient, I would be entitled to PIP payments. I have rung and requested the form, which the nurse said she would fill in for me? Perhaps speak to your specialist nurse and see what they suggest?

Good luck

Lorraine

 

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