Hi Chrissie, sorry a tad exaggerating about my kidneys they are at gfr 27 so I have a little bit to play with but it does mean infections or pneumonia are much more serious and could wipe them out – it will be the kidneys that get me I think not the MM. I am not on dialysis and they do not appear to personally affect me yet tho’ my body will…[Read more]

Hi Dawn, I know what you mean and did say it is now only as results are Ok but I am expecting a blip and feel quite calm about it. I have always believed, more or less, that your when your number is up it has always been pre-ordained. I was told (later) I was a day away from death when I was in hospital on diagnosis and so I feel that wasn’t my…[Read more]

Hi, I’ve just been reading this thread and actually smoulderers are, I feel, just like MMers but in a longer remissive state as we are all on watch and wait but MMers have been on some treatment and I think tend to just look for “time not off treatment” period when you feel well and can enjoy life. I was diagnosed 2 yrs ago, SCt last xmas and now,…[Read more]

Hi Andy

Thanks for your reply. I had my appointment yesterday and was really pleased to be told my PP’s are now at 8 after cycle 2. So I asked if I could have a break from the day 8 cyclophosphamide. My consultant was quite happy to do that and said he wasn’t convinced by cyclophos anyway. So hopefully my next cycle wont be so bad. Although I…[Read more]

Hi Julie, remember everyone is different and I seemed to have constant nausea and sickness whilst in even tho they will try a range of meds to stop it – some people just get it a bit – think I was in 16 days came out the 28th dec and remember feeling well/turning a corner on xmas day and really enjoying my dinner and was fine on discharge but once…[Read more]

Hi Julie I had my SCt at Xmas last year – had my 52nd birthday in there to boot – as always how you respond to SCt is very individual and depends on complications I got an infection as soon as discharged which caused about a 6 week delay to feeling better I would say but when you “turn the corner” you know and you can function ok – altho I had…[Read more]

I took my 8 day cyclo on Wednesday and have felt ill since despite it being a reduced dose. I see consultant next Tuesday and the way I feel at the moment, he is going to have to stop the 8 day dose. I don’t know why the day 1 has no effect on me, its only the 2nd dose. The difference being that the 1st dose is taken with Dex. I was told to take…[Read more]

Thanks Dorothy. I think the only reason the hospital wanted me to go to the further away one is because it is in the county cancer network. I don’t think it was they thought it was any better or worse than the hospital I wanted to go to. I’ll have to wait and see. My consultant is planning another MRI at the end of this cycle, so if the…[Read more]

Hi All. A quick update. I’m doing really well on this 3rd cycle tho I haven’t hit the 8th day cyclophos yet which is the one that seems to hit me. However, I’m hoping now its dose is reduced it wont be so bad. So for anyone out there starting on this MM journey, don’t give up in the begining. Nobody could have been more pessimistic than I was, In…[Read more]

Hi, sorry no-ones responded yet and not sure I’m much help on this. I had velcade n dex weekly for 8 months and other than the round face I did not put on any weight at all. The nurses expressed surprise at this as they said dex gave you the munchies and it was almost impossible to resist eating a lot more. I never did start the munchies and…[Read more]

Hi All and Andy

Andy I do hope you had the best time in Athens. Certainly sounds as tho you did. You deserve it.

Well I had the Zometa infusion and so far I haven’t had any side effects, so thats good. I won’t worry for the next one. They have started me on AdCal. I started cycle 3 today with the reduced dose of cyclophosphamide and so far I’m…[Read more]

Hi Nick

I’m sorry to welcome you to this forum but never the less welcome. You will find many helpful folks on here who will give you lots of info and advice.

I was interested to read your story which sounds similar to my own. I too was monitored for MGUS for about 3 yrs until I developed severe lower back pain with intense sciatica. I had an…[Read more]

Hi Andy

I’ll have the infusion and see how it goes then. I’ve just finished my 2nd cycle and have been quite poorly today. Spent half the night with epigastric pain every time I laid down so spent it sitting up. Today I’ve spent in the loo, I suppose its coming off the Revlimid. That seems to be my main problem with this treatment, most of my…[Read more]

Hi fozz, I am sure you have read that people can be diagnosed from recurrent infections (from compromised immune system) and you could be putting two and two together with a painful rib and coming up with MM but if it was me knowing what I know now, bearing in mind I believed a labyrinthitis diagnosis for months, I would be at the Doctors…[Read more]

Hello Andy

Thanks for your reply which I find encouraging. I expect you’ll gather I’m an awful worrier when it comes to taking any drugs. Once I’ve taken them for a bit I’m ok but until then I just seem to look at the worst side effects they give, daft I know.

When you had the Zometa was it infused over 15 mins, coz I’ve read the flu type side…[Read more]

Hi Magic, just thinking about you and thought I would just post some quotes to consider (I like motivational quotes and they inspired me a lot when in treatment)

“Life shrinks or expands in proportion to ones courage”

Winston Churchill “If you’re going through hell ..keep going”

“The moment you’re ready to quit is usually the moment right…[Read more]

Hi Jeffery, long may your results continue. To be honest I do not think SCT is the be all and all now – as perhaps it was a few years ago – when drug options were much more limited, and you needed to take the plunge, but nowadays you can debate either way as there are new drugs coming up which are much more kinder to the body. At 52 I felt I…[Read more]

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]