Hi Vicki, so really sorry to hear this about Colin – we are all routing for you both – and please don’t feel this forum is for positive stories only – as there are 2 sides to the coin we are tossing and it is useful for everyone to remember that. I feel in total denial of death as I live my life as normal but it acts as a prompt not to be…[Read more]

Hi – I was on various pills that stopped after a month or so and kept up the antibiotics for 3 months only. I was told I had to keep the antibiotics for the full 3 months as the melphalan destroys the lining of the lungs so you are susceptible to chest infections. Not had one yet now 18 months post SCT – fingers crossed. RE vaccinations some have…[Read more]

Hi Brian, I had my hickman line in a while pre SCT and worked up to the day I went in – never had any advise on not working whilst it was in but I did have it flushed out once a week wherease I think some other hospitals do it once a fortnight? Funny how different hospitals have different view points. Good luck.

Hi finn.

Thanks for your reply. Yes I am on pain relief, co-codamol.

Best wishes

susie

Hi All

Finn. Interesting to read your symptoms. Is your pain there all the time or like mine, just when you walk ie weight bear ?

As Zometa strengthens bones I wonder if the pain is the zometa actually working.

Best wishes to all

susie

Hi – sorry to hear about the delay I know how hard it is mentally to brace yourself and gear up to it to then feel totally deflated. I had my SCT is Leeds and was told it would be 2 -3 weeks once I was on the waiting list after I had a hickman line in. I had to phone each day and it took 8 weeks and my consultant phoning that hospital also! This…[Read more]

Well my MM no.s reflect greatly on kidney function – if my light chains moved from 60 6o 40 I would get a bit more kidney function back – but it could only go so far. I averaged 26 pre harvest the harvest knocked MM back a tad and I went to 28. SCt took them to 30 with light chains in normal range and they are now averaging 32. I would imagine you…[Read more]

Hi Amanda, glad to her you are doing OK – I remember talking to you when diagnosed as we were very similar stories but my kidneys are now at 33 (just 18 months post SCT). I was hell bent on SCt regardless of risks but you do right to question it all with such a low kidney function. It took me 3 months to feel back to normal and get some fitness…[Read more]

Hi – Don’t know if this is the same as I have no bone involvement (I believe) but after SCt if I had a little walk my legs felt as tho I had walked 20 miles and this carried on for 3 – 4 months diminishing in time. Any little exercise on any part of my body gave the same OTT reaction – shoulders, arms. My feet really hurt when I walked on them…[Read more]

Hi sarah, sorry to hear about your dad – how old is he and how was he diagnosed? I have not had VMp so cannot help on that front, however, please be aware everyone reacts slightly differently to chemo and so you may get all or hardly any of the side effects. MM is a very unique and individual disease. This is devastating, life changing news as you…[Read more]

Hi sorry – only pop in now and again (I am just 18 months from SCT). !8 months is a figure from the US Myeloma beacon site, think I have read someone on here recently debating SCt following velcade treatment that 18 months extra was quoted by his consultant? Mine gave an average upto 2 years but there are those that get much more etc. All very…[Read more]

Fingers crossed all goes well for you now from this point on. So pleased he has got to this stage at last. Japanese proverb “Fall 7 times and Stand up 8”

Take care (Both of you), Rebecca

Hi Alan, glad to hear everything is progressing nicely and hope your 100 day test goes well for you. Sounds like you are keeping active and I think that’s the answer to a speedy recovery. After 6 months I felt I was back to normal fitness etc tho my bloods really took a very long time to look Ok. Be careful of a mental “dip” which seemed to hit me…[Read more]

Hi Bernard, glad to hear you are doing so well – a very quick return to work – I could have gone back but chose to have 6 months off to focus on me/life/fitness as, let’s face it, we have been through a lot. I think it’s important now to not slip back to work focus etc and to consciously look at what you want out of life and a plan on how to get…[Read more]

Hi John, had my sct xmas 2013 and currently still in remission – had velcade and dex for 8 months and got a vgpr. I was very gungho abut choosing sct even tho kidney gfr was 28% and making it higher risk – however survived and was back to full fitness/normal life in 6 months. If you are unsure there are some things you should explore which may…[Read more]

Hi – I had a rash all over develop and was on piriton (which didn’t get rid of the rash for weeks) and this was attributed to allopurinol – well known for such side effects. Never had a red face but have heard that dex can do this but then subsides – not heard it with the tightness but when I had dex by the teatime my face had puffed up quite…[Read more]

Hi Richard, sorry to hear you are back on treatment that’s a real bummer (understatement). I had my SCT Dec 2014 just before you and dread the day of treatment again after being treatment free. I know the SCT didn’t do what it should for you but statistically only 50% of people get more than 18 months remission from Sct- not a fact I focussed on,…[Read more]

Hi Vanessa, I am 16 months post SCt and for last 2-4 months only- since SCT – have had a cold/cough/chesty etc. When I went for my bloods 3 weeks ago it was a day where I had a temperature, felt dreadful like I had flu and thought this would be reflected in my bloods and light chains. When I saw the consultant my bloods were good, neutrophils etc…[Read more]