Hi Mike

Thanks for your reply. Very reassuring that side effects appear limited for you. Maybe Velcade wont be so bad.

What were your PP’s when you started treatment. What dose of Dex do you have.

I hope it continues to knock your M M on the head and you’re soon into a good remission.

Best wishes

susie

Hi Andy

Once again you put things into perspective for me and I thank you very much. I guess I was having one of those sorry for myself days. It’s just I have one doctor (consultant) telling me he wont start treatment until my PP’s reach 30 plus unless I develop symptoms. And another (specialist registrar) telling me they don’t wait for symptoms…[Read more]

Hi Chrissy, Welcome. You are in a steep learning curve here and the important thing to remember is “take your time” you’re not going anywhere and this is a marathon not a sprint so go at your own pace. You do not need to know everything about MM now as your consultant/NICE will decide your treatment path so…if I had my diagnosis time over…[Read more]

Yeayyyy…consider that good news and breathe out once again!

Hi Ann, fingers crossed for you this Thursday, I know you have been having some blips of late with your blood but it may not necessarily be what you fear most. Sometimes there is no real rhyme or reason for how things seem to pan out – I had the blip of bloods like you then it went back ok never to seen again and at the mo I have hardly any immune…[Read more]

Hi Claire, I went to see Prof Cook he is very renowned, tells it to you straight in a very personable manner and I had my SCT there 2 years ago last xmas. I have high risk cytogenics but no maintenance as I believe the only way to get maintenance here in the UK is if your treatment is part of a trial – mine wasn’t. You are in a great position with…[Read more]

Hi Andy

Nice to hear from you. How are you doing, well I hope.

I don’t claim any of the mentioned benefits. I struggle on with this back which may be daft, but that’s me.

Best wishes

susie

Hi Colin, One more thought re. your pros and cons. Have you asked the consultant to explain your cytogenic profile from your bone marrow biopsy? Have you any deletions/translocations that make maintenance much more favourable? You will be either low, standard or high risk (considered more aggressive/difficult to treat) based on your cytogenics.…[Read more]

Colin, whilst on velcade/dex – the dex can make things difficult abit like speed (I think) so up all night etc but as regards exercise I was taking my BP at home and when on dex I had heart arrhythmia (picked up by my cheap BP machine) and BP was higher/heart rate higher on dex day. What I used to do was play tennis then take my dex tablets and…[Read more]

Well Colin, it sounds like you are being pro-active and gaining what control you can so good for you. Incidentally, I was a fit 51yr old on diagnosis (but severe kidney damage). I like to play tennis – a lot – I continued throughout treatment for 8 months and when I came off treatment and had a 5 month gap pre SCt it was like a fog had lifted and…[Read more]

Thank you all for your replies.

I hate to think I am approaching a time when I need a blue badge, Its like accepting I’m getting past it. I’ll see how it goes. People seeing me walk would most probably not see much wrong, but I’m in agony when I walk any distance, so much so I just have to sit for a while. I will do it via Macmillian.

best…[Read more]

Hi Colin, Welcome and what a decision you have to make. Your consultant and MM nusrse specialist will give you the pros and cons and I guess the main thing is you get maintenance and possibly delay SCT until first relapse. I had velcade/dex then SCT – no maintenance as not on a trial. It is difficult to know what you want until you have started…[Read more]

Hi tom, Sorry I cannot offer anything but as I am lambda light chain and have no paraprotein (currently in remission) and at diagnosis with 1120 lambda I had only a slight/insignificant paraprotein rise – my doc has never said I am non secretary – would you say I am?? I get no bone damage but significant kidney damage on low numbers so will need…[Read more]

Hi Andy

Good to hear from you. It seems a lot that used to post here are now on facebook, which I am not.

Amazing, you on your 30th cycle, and seems you’re doing well and I’m so pleased for you.

Have good holidays

Best wishes

susie

Hi. I had a really sore rash at the back of my neck after sct(I thought it was shingles) – they took a blood test but never got the results – so presumably ok – and it went in about 3 weeks – it was raised, red, very painful – never to be seen again? one of the many imponderables…

Hello jaylo

Welcome to the forum.

Try not to worry too much. You can be in the MGUS phase for years and some never become active.
I was MGUS for at least 4 years, with a paraprotein of around 30 and a bone marrow of less than 5%. It wasn’t till it went up significantly with a bone marrow above 10% that I was diagnosed as Myeloma. During the…[Read more]

Thanks Jan – always remember with high risk cytogenics that it is still an “individual” disease and so how we each react to it is also very individual. I have heard of a high risk case in US still in remission 10 yrs plus which proves this point/glimmer of hope! My understanding/feeling of it is I must have only had a small % of the HR…[Read more]

Hi Jan, I personally think consolidation after SCT for a short period is what I would have liked – all things being equal and they do this in the US ( 3 months or so?). Having said that your body is very low after SCt a further hit, for me, would have been difficult. I was not on a trial so ineligible for maintenance – I spoke to Prof Jackson at…[Read more]