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 Gary,
I don’t seem to get any nauseaa or sickness with the cyclophosphamide. I take a metaclopromide with it and it seems to do the trick. My problems happen the day after I’ve taken it, I get the cramps with intensive diarrhoea and the feeling I’m going to pass out, which makes me feel really bad. However my consultant has lowered the dose…[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]

Thanks for your replies. I think my worries come from me seemingly reacting so badly to the drugs so far. But I take on board that none of you have had any desperate side effects from the Zometa. So I will wait, see and hope I don’t as well. I’ll ask if it can be given a little slower if only for the first time, but I wont hold my breath.
Best…[Read more]

Hi All. I had my hospital appointment today and it went better than I could have hoped. My PP’s have dropped from 62 to 17. At least all my suffering has shown a result. He’s dropped the dose of Cyclophosphamide to 300mgs so I just hope it doesn’t have the same awful effect on me. They’re also starting Zometa infusions on my next appointment. I’m…[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, Thanks for your replies. I guess the other day was a sorry for myself day. The Cyclophosphamide certainly seems to affect me. I have felt really ill since taking it on Wed. My CNS said they can adjust how I take it, so I have an appt on Tuesday and I’m just hoping whatever they prescribe will enable me to take it without such awful side…[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

I’m sorry to hear this news Tom. I wish you the best and hope they get you into remission as soon as they can.

Keep your chin up and keep to Tom senior’s saying.

susie

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 Mel

Welcome to a very good forum. You will find lots of very knowledgeable friends on here.

Try not to worry about the Bone Marrow. I have gas and air when I have mine and its really not too bad with that. You can ask for sedation but I don’t think all hospitals give it–takes you longer to get over the sedation than the BMB.

Wish you the…[Read more]

Hi Karen

You say your results are going up. What is your paraprotein . If your fatigue is fatigue, surely that would be a symptom. I don’t know where you’re being monitored but I was monitored for MGUS for 2 or 3 years before I suddenly became active. My pp’s started at 30 but a bmb only showed 2-3% cells, but I now think I must have been…[Read more]

Hi Karen

Well I finished my first cycle and I have to say it was worse than I thought it would be. Apart from feeling quite unwell, I had this awful headache all the time, together with vision problems which became more frequent as the cycle went on. I found it very frightening, and was worried my eyesight was going to be affected. However, on my…[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]