Kim,

I have just transferred to St Bart’s to Prof Cavenagh’s team from University College Hospital. I will be going back to the latter eventually, but Bart’s are leading on my donor SCT. I have had three appointments thus far and I find his team very helpful and hands on, although prepare yourself for long delays in clinic. There really isn’t…[Read more]

Good news;my paraprotein has gone down from 44 to 19 after four weeks of ctd.
Muscle tremors ,tetany on some days due to low calcium /zometa only side effects so far .
Mike

That’s great news, hope all goes smoothly for you both now. Andrea xx

Hi Chris

Thanks for your response. Does the OxyContin make you sleepy? I shall certainly discuss it as a possibility with the Pain Nurse. I did have it earlier. Can’t remember why I changed!

Best wishes to you.

Mavis

Hi Maureen

So glad Ian is the right side of his SCT in spite of set backs. I do hope you have some very good years ahead of you.

Love to you both.

Mavis x

Hi Val

Welcome to the Site as an active member. I’m sure Ellen is right about no having your husband’s particular kind of plasmacytoma. I was diagnosed because of a plasmacytoma which was compressing my spinal cord. It was successfully removed by surgery and metal support put in my spine.

I do hope they decide on a regime of treatment for…[Read more]

Hi Andy

Glad to hear you are back on track after the holiday. There is always that elephant in the room isn’t ther which we all try to avoid! I’m amazed how many lots of Pom you have had already. Can it be like a maintenance drug? Just keep knocking the MM back day at a time.

Hi glam Helen

Was wondering how you were getting on with your…[Read more]

Hi everyone

Does anyone know how high your creative levels are likely to be befor you get into renal failure? I an increasingly worried about my kidney function.

Best wishes to all.

Mavis

Hi,

I am now 70! Was diagnosed nearly five years ago. Had one lot Of treatment CDT, four years ago and have been in remission since. I didn’t want a SCT for same reason as your mum. I have monthly ZOMETA and meds for bone pain, but don’t regret not pushing for SCT as not everyone gets a long remission.

Best wishes to you and your mum.

Mavis

Hi Andy

So glad you are still getting to Greece and enjoying the beer in spite of everything. My advice to everyone on here would be “do it while you can.” I am not up to travelling to Luxembourg to see my daughter and family at the moment, but have pencilled in a visit for September as something to aim for. We can’t give up, can we.

Hope…[Read more]

Hi all.
Ive just commenced my second three week cycle of ctd.So far I only know my hb has risen from 110/11.1 to 122/12.2 after two weeks of tx which I regard as a good sign.
Great news Dawn your heading for an excellent response to tx
Yvonne , I am pleased bloods are stable.But note some heamotologists regard recurrent serious infections( eg…[Read more]

Hi Maureen and Ian

Good luck,I hope all goes well for you. It’s not easy going through SCT but I found the fantastic staff and support from family and friends made it easier. It’s 11 weeks since my transplant and thankfully I am doing well.

Best wishes

Andrea xx

Hi Peter, Ian, Dawn and all

Glad you are coping well and that you are getting a good response Dawn. Keep at it and look after yourself and take it easy. Hopefully we will get some nice summer weather which helps!

I don’t think everyone has a cytogenetic test but I had asked because I was interested! As for decimal places I have always been…[Read more]

Hi Yvonne

My husband was diagnosed in 2006. He smouldered until 2012 and had SCT. When he was diaganosed I contacted Myeloma UK and they sent me a diary. Over the 9 years it has been invaluable to us. It has different areas – what treatment in – what questions to ask etc. the part I use most is blood results page. It tell you what the normal…[Read more]

Dear Yvonne,
A negative Pet scan may give you reassurance.
mike