Hi Jeff, For info dt-pace is a combination of chemo drugs typically about 5 – so you can see it is more or less throwing the kitchen sink at the M – hitting it like a sledgehammer but quite a harsh routine (understatement here) and you are hospitalised throughout the cycle I believe, for obvious reasons. Not sure, but think it’s only used on…[Read more]

Hi, god what anawful decision to have to make – I think I would have asked 2 consultants for their point of view and go with their experience but then when I was wanting to go to SCT I had a hospital not wanting to risk my kidneys and one who were prepared to! and I felt grateful for that!? When I look back I was the one taking the risks but I…[Read more]

Hi Anthony, not sure what the stats are on light chain MM v MM would expect it to be 50/50 chance? as we equally have both heavy and light parts in our system. If your consultant never mentions it then I would suppose you have normal “heavy chain” MM where measurements are gauged on the level of paraprotein in the blood. I have “light chain” MM -…[Read more]

H Amanda, the benefits system has been tightened up quite a bit now so think it is very hard for new claimants. We are all “terminal” as is, I guess, everyone (the cause for many tho remains unknown we’ve just got a heads up!) but terminal, thank goodness, doesn’t mean imminent – I know you are fast tracked for benefits if you have 6 months or…[Read more]

Hi there – I’m 52 and my daughter is 16 and as the old saying goes you “protect those you love” we don’t share any of this part of my life (actually I don’t share it with anyone) – I don’t want her worrying and I always look so well and am active so I guess/hope she thinks I’m ok as I act it. Read all you can on Mm and if you want to have that…[Read more]

Hi Chris – sorry to have to say welcome but as I am sure you have gathered there is still life after MM. I didn’t have CDT but know its quite a harsh routine so SCT may not seem quite as bad for you, hopefully, and as Winston Churchill said “if you’re going through hell – keep going”. Had My SCT last Xmas (Literally – and never got any presents…[Read more]

Hi cupcake I had a very bad throat develop just before the harvesting process and they checked the throat the day of the cyc infusion – I was totally convinced it wouldn’t go ahead but they proceeded and it was all ok. When you complete your harvest – which is a walk in the park – it will give you a huge psychological boost in preparation for SCT.…[Read more]

Hi Graeme, hope your harvesting went ahead ok and you got what you needed.

Rebecca

Hi Eve, Glad to see you posting – please remember you are part of that fountain of knowledge and your words and sayings helped me a lot in the early days – never underestimate how you can/have helped people. The people who post on here are very few unfortunately but I think there are so many people who read/gain from the forum without ever…[Read more]

Andy, I know this has been hell of an uphill struggle for you with many downs re treatment success but fantastically well done – I think when your treatments haven’t worked as well as they could your strength of spirit has worked just as well and rebalanced the scales – plus the sun and smiles.

Rebecca

Hi, as with everything it is very individual and also on how good the person is who does it. I have had a few and felt nothing when the specialist nurse did it – much better than having a filling – and I only had injections at the site of entry. When she left my consultant did one and think he was a bit mean with the injections as felt it – but…[Read more]

Hi, SCt is very daunting and it has been described as major heart surgery on the blood but I have heard some who were on CDT say that was worse. I only had velcade/dex which I think is quite kind – or was to me. I wouldn’t worry too much about getting to sleep you’ll find sleeping quite easy. Forgot to mentions as the rooms were so cold (but germ…[Read more]

Hi Graeme, sorry no-ones replied as yet I guess its because this topic comes up a lot – I had mine last Xmas in Leeds and there was a thread under Buddies wanted where a few posted there experiences but I have just searched for it to check its there and nothing came up? am sure if you search under SCT you will get different views. I tried to read…[Read more]

Hi Sharon, glad you’re looking for a weekend break – as time went on I “treated” myself each day – nothing major maybe making the effort to meet for a coffee etc. This is a hard time (understatement) so always be kind to yourself. I think it’s also worth recognising as being newly diagnosed you have all the emotional toll of that – which would…[Read more]

Hi Sharon, I was 50 when diagnosed and have stge 4 kidney damage. I was on velcade/dex for 8 months pre SCT. Dex was all the things you say but I had only had dex once a week so had time to recover from it for a bit each week – I hardly slept at first but used to work nights so can function on very little sleep and my consultant said my kidney…[Read more]

Hi Linda, I had my SCT at Xmas (literally) at St James (really hated the food and the freezing room) and it never really did much more for me MRD was the same as before at .3% etc. I was in very good partial remission hoping the SCT would get me SCR but the gamble didn’t work. I wasn’t on a trial so ineligible for maintenance but discussed…[Read more]

Tom, sorry I have no advice and sorry it’s back – guess all I would say is regroup mentally and prepare for the next round – were you on maintenance also?. 9 months post SCT and think my figures are not as good as could be but not alarming. I have started a meditation/mindfulness course as I feel I was strong during treatment/SCT, but do not feel…[Read more]

Thanx Ali, have just ordered some off ebay – am a bit loathe to cut what l ittle I have but will bite the bullet to get rid of this tight perm look. Rebecca

Dear Eve, so sorry to hear this news, you are both troupers and I hope you take great comfort in the knowledge that you could not have done more for him and eased his passing so fantastically well. You have helped so many on here with your postings, including myself, that please do not feel you can no longer contribute on here as you have a…[Read more]