Hi, I have only had the injections in the hip prior to a BMB and if it starts to hurt they will give you another jab during the process – I’ve only ever had it hurt “a bit” when a different person did it. I was told that they have to sedate quite a few people first and have heard how one person screamed the place down during it – my understanding…[Read more]

Hi Scott – as I have never been allowed access to the renal clinic, despite asking, have they told you how to preserve what you have eg with a special diet or kidney friendly food or anything? or is it just carry on as normal and no special diet will help?

Rebecca

Thanks for that info Scott, my kidneys are currently about 28 -30 egfr but when I SCTd at Leeds they said when I relapsed I could ask to come to Leeds for a second opinion and see if there were any trials I could get on as my small hospital wouldn’t know about any trials so I assumed we could still get on some? At 20% does that mean they’re…[Read more]

Hi, so sorry to hear your news. I don’t have AL but MM but …do things get easier? Yes over time in that you learn to live/function with it with, I guess, an underlying sadness that never truly leaves you for long but no-one else can see/feel it. I have a teen daughter and husband and we have just realised it is 2 years since I became ill with…[Read more]

Hi – I am 7 months post SCt (SCT at Leeds) and at no time has anyone mentioned/suggested that I should have baby injections – is the jury out on this one? I remember at Leeds the consultant once said that although you have a new bone marrow your body still remembers? mmm….confused now?

Rebecca

Hi Scott, so sorry to hear you’re relapsing earlier than you should have. I’m 7 months post SCt with light chains jumping about – and am interested is this a trial for Pomalidomide and dex? or have you exhausted the thalidomide, revlimid old standard route? I ask because I am always quoted that route and when the time comes don’t want to do it…[Read more]

Hi Stanley, good luck with the harvesting = how times fly eh?…not researched mozibil as I only had a few GCSF but am interested as I have/had poor cytogenics – can you only get this as part of a trial? (which I didn’t meet the criteria) but I like to keep abreast in the lucky(?) event that I may qualify for a second one in the future – and aim…[Read more]

Sarah, Thank you for letting us know in such an eloquent way and taking the trouble to do so. I am just so very sorry your time together has been cut short.

Rebecca

Hi there Sarah, I had my SCT at Xmas – I am 52 – now fully recovered from it all with no issues ensuing. The process you can find in the docs in the information section and you can search under SCT I think “buddies wanted” will give you postings from some who were going through it earlier this year. There are lots of postings on this subject. MM…[Read more]

Hi, no-one ever told me not to dye my hair whilst on chemo so I continued as normal with lots of highlights throughout and it was ok – my hair was in very bad condition throughout the chemo but seemed to look ok with regular trims and….. anything about hair is not in the slightest bit trivial – 7 months post SCT with strange, alien unruly hair…[Read more]

Wow Carole – that looks long how long actuallyis it? – I’m quite sure you’ve measured it! Think you’re an A* on that regrowth – had my SCT as a Xmas present and it started sprouting in March after 9 weeks but I have only 1 1/2″ and 2″ in some places – my hair always was thick but this is wavy and trying to curl and is so dark. Not taking my wig…[Read more]

Yes, unfortunately I think it is. It takes a while for bloods to recover so he may be anaemic and need a couple of units, or plasma may be low, or most likely he will be having antibiotics infused if he has a slight high temp and starting with an infection – all easily sorted and he is in the best place. After SCT I had all sorts like your dad but…[Read more]

Hi Sarah, My harvest took 2 days in that I went the 1st day had a blood test told 1hr later sc’c not ready. Next day I went and the harvest was done in about 3 – 4 hrs. I think it’s the timing of the injections that will have you done and dusted in 1 day or waiting around – I certainly didn’t have many – not as many as it says in the booklet -…[Read more]

Hi, When I was on treatment and recovering from SCT I have always been mindful that this is my disease and whilst it inevitably affects the family I have tried hard to minimise its impact. I always used to plan little treats for me – even a coffee with a friend – to brighten the day and I think partners should do the same. As soon as I recovered…[Read more]

Hi Patricia, You have time to teach him the basics – and perhaps its time he learnt anyway! I know how you feel I was very rough after SCT and had to be looked after for a while after but it all worked out. I actually went to hospital with so many jimjams etc so I didn’t have to rely on washing for the whole of my stay. Stocked up on school…[Read more]

Hi Robbo, Well now you have a plan to focus on and a future to look forward to after your SCT. I am quite sure you will sail through treatment/SCT as you are young and fit (presumably – if not..start now!) I am 6 months post SCT and back to normal and tho’ it is now a different mind game – getting used to check ups and being anxious about the…[Read more]

Hi to all you newcomers, welcome and good luck with it all. I have just read this thread and am so surprised that you are given a prognosis in years with all the new treatments coming up changing the game plan. I was diagnosed at 50 with kidney failure and was lucky to survive but I did/do. I wasn’t eligible for trails as they didn’t think I’d get…[Read more]

Congratulations, that’s fantastic news. You seem to racing ahead on the recovery front and as for hair – mine just started sprouting 9 weeks after. It’s great to hear posts where fatigue is not an issue as I read it’s often a big thing that lasts for a very long time. I hope you can put it all behind you for a very long time and so glad that it’s…[Read more]

Hi Nick, I had velcade/dex for 8 months – weekly dose/jab. Wasn’t aware this combo caused nausea and I only felt a little dizzy which I attributed to low blood pressure at times. Most common effects from this combo is fatigue – which I had – and neuropathy. Sorry can’t be any help – why not ring Ellen on the helpline in the morning they are really…[Read more]

Hi Deborah, I had mine at xmas (just 52) and can assure you I am totally back to normal in every way including fitness now. As a woman I think you will have covered all bases – unlike David my room was freezing (they kept telling me it was because it was sucking all the germs out? but I wasn’t convinced – one thing I would have loved to have had…[Read more]