Hi Wendy

I too have suffered from some ear problems since being on CTD. I've had several occasions where my ears all of a sudden feel like they are full of water and there is a whooshing sound in them. It can last on and off for 2 or 3 days at a time and is VERY annoying. I haven't had any colds and have never had this before so can only…[Read more]

I'm so sorry to hear of your loss, Tina and hope the special memories you have of Patrick will help you through this very sad time.

Love, Tracey xx

Thanks Dai! Not sure what happened there. I did sign off as "Tracey" in my original post, but instead a random reference to "tea" appeared instead. Bizarre! 🙂

Thank you all for your comments. I feel much more positive now with the let's wait and see approach. Dai, there's a definite logic to what you are saying in that if CTD achieves a good remission and you feel well, why the need to press on with a SCT immediately? I hope you get great results with the velcade. It was good that you met that woman…[Read more]

I don't get nausea from velcade

Hi Clara
Thanks for your Dad's update – it does help to compare notes with someone in a similar situation. I've just had an appt through for my next 2 day assessment and scan at the Royal Free for the middle of August. Also had my blood results back after my first cycle of CTD – lambda free light chains have reduced from 152 to 43 so that seems…[Read more]

Hi, I'm no expert ok, but as far as know grief always comes with anger, so it's good to know you feel it. I doubt you can find any satisfying and suitable target for it, but that doesn't make it any less valid.

From what you have described it seems that your brother's death was unexpected by the family and the medical team. Do you know what…[Read more]

All my sympathy.

How are the children?

Was MM the direct cause of death? Why did they take three months to diagnose? Was he receiving any treatment? These questions are pointless –

Nigel

Hi, I cycle, always have done since the age of four. I managed to get out a bit from the earliest days of treatment, but the hard winter kept me in, so I skiied instead. Since its warmed up I'm doing regular 25km outings, often 40km and an occaisonal 70km. My docotr is also a cycllist. OF course I4ve put on loads of weight whihc doesn't help and…[Read more]

Hi Mark, I'm 51, I was diagnosed in November last year. As everyone has said the responses and survivial are very individual. When I discovered my diagnosis I thought 'oh fxxk I'll be gone soon', but I'm lucky enough to work in the medical area with some very straight talking friends – basically in the last decade progress has been such that MM is…[Read more]

David, here in France I centrallise all the information and take it from the labs to the consultant, so its easier for us to keep an eye on, whihc would be great if I wanted to; in fact what I would like is for the medical staff to have the time to monitor it for me and take the decisions – such days are undoubtably over and mmodern patients have…[Read more]

Deb keep us up to date – I went down from 14 to 5 in one cycle, 5-3 in the next, 3 – 2 and I'm around 2 still. SCT in late May, though I'm not in hurry though with the PP levels so low.

Is there a connection between the fact that she didn't love him and his getting the Myeloma.

I've always been ahead of the trends (without even trying) so I reckon MM is the in cancer to have for sure.

Welcome Tracey. Good luck – you'll find lots of good information and support on the site. We're all in a similar boat, but everyone's situation is different. Good Luck. Preserve your health as much as you can. Be careful of the dexamethasone – I put on 6 kilos in 2 months …

Nigel

Hi Clara, Yes, Amyloidosis and Myleoma is pretty rare! I certainly haven't found anyone else with my condition, particularly of my age – it's very rare for someone of 42. Do you mind me asking how old your dad is? I'm guessing not that old if he is still working. I was at the Royal Free in the middle of February and started CTD on 3 March. I'm a…[Read more]

If they do the xray it is to check the bones after all he does have Myeloma, so checkin on the bones is reasonble. They can also do Ultrasound and of course MRI