Hi Jan, I would ring the helpline to discuss this one – my understanding is a 90% reduction from what you set out with is optimum and as near to normal as possible before SCT. In the US they really strive to get to the lowest numbers pre SCT but I feel our treatment regime is sometimes lagging behind. I could have got lower by adding to velcade…[Read more]

Hi Les, Don’t be too disheartened yet. After my Sct (altho no bone problems/pain prior) I found for the first 3 months I had strange pains – also in shoulder area and legs hurt -which I am led to believe is the chemo tightening the tendons which made getting up and about first thing painful and hobbling. Your body had had a massive battering of…[Read more]

Hello Sara

Yes Wycombe General in High Wycombe, where I’m being treated. Stoke Manediville Hosp as well. Is it yourself that needs treatment ?

Best wishes

susie

Hello Sara

I was on the Myeloma X1 trial. Randomized to Revlimid arm. Not on treatment now but it worked very well and brought my paraprotein down really fast. I’m in Bucks, Wycombe actually. If I can be of any help feel free.

Best wishes

susie

Hello Bridget

Sorry you’ve had to join us here. Try to only use this site for info, or Myeloma Beacon (an American one)

I too live on my own which made going through treatment very tough. Thankfully I had good support from close family and friends.

If you would like to put your email address on here, I’m quite happy to email you through your…[Read more]

Hi – Don’t hesitate – please ring – after my SCT I spiked a temp when home and would not go back/phone and my husband was a bit in the dark and bowed to my crying/covering it up. Thus began a very low point in my health – much worse then when in hospital – it hit my chest and set my recovery back ten fold. When I finally told the consultant he…[Read more]

Hi Stanley, Glad to hear that life is treating you well and there’s no reason why it shouldn’t continue. I am 2 1/4 yrs post SCT (so will qualify for another one as standard now under NICE) and feel the best ever at the moment. Have finally just (this week) started taking the circumin supplements – same brand as you – did you ever up your dose to…[Read more]

Thanks for that Angela. I’m going to phone my consultants secretary next week to ask for the letters. I’ve done this several times in the past and spoken to consultant. I get sent just the one. Strange thing is, when I was being monitored for MGUS I never had to ask yet always got a copy.
Maybe they’re cost saving on stamps. !!!

Hi sorry to hear about your sister – I never got an infection whilst on chemo – which was lucky as I have very little kidneys left – but I did not go to work for the first 5 months of chemo (shock mainly and I work in a large open plan office with lots of germs). I guess now she’s had one this is the time to re-evaluate how best to avoid…[Read more]

Hi, I had a short spate of low HB and going for some blood – you will absolutely love it I felt like Popeye straight after it feeling normal and energised. I have to say on occasions I used to phone up saying how lack of energy etc I felt and asking for my bloods done so I could have a pint – to me it was highly addictive but they were very scant…[Read more]

Hi Mark, My advice would be to do what you feel is good/works for you. Skiing is fine if you don’t have bone damage – they are over cautious on no contact sports, high impact (which includes tennis) etc but if you have no signs of bone damage – do it – if you develop bone damage weigh up the risks when you know the extent of it etc. The medical…[Read more]

Hi Buzz, Sorry to hear about your situation and I guess you may be one of those where it is easily treatable to a good response but comes back very quickly. We all pin our hopes on SCT being “it” but it never changed my minimal residual disease etc in any way – I am 2 yrs from SCT – so did it deepen my response? who knows as there is no test to…[Read more]

Hi suenev.

I was on Myeloma X1 trial and was randomized to the same as you. I too had side effects, tho no rashes. I had the severe diarrhoea, visual problems, leg muscle cramps, breathlessness, and some others too. All I can say as the cycles went on I became more able to cope with these problems. They had to stop the cyclophosphamide in the…[Read more]

Hi thanks, I am probably not as fit I think but for nearing 55yrs now think I am fit – I can manage about 40 minutes on treadmill at 5.8 miles per hour only! think I could go on a lot longer but boredom more than anything sets in. My consultant said it was abnormal and asked if I wanted an ECg but as I feel ok declined last time but think I will…[Read more]

Hi Mike, If you don’t mind sharing I am interested in any heart complications you may have had during SCt – it is an area I am researching at them moment. I had my SCT over 2 yrs ago and since them my BP is on the low side (not uncommon from the US site) and I now have a resting heart rate of 45 – 50 – tho generally 50 – and yet I am extremely…[Read more]

Helen, Glad you are still posting and more just carry on carrying on…I guess its a bitter sweet day – a reminder of “that” day but also a celebration that you are still in the race. Guess I’d be laughing and crying but more importantly celebrating my strength of body, mind and spirit. good luck x

Rebecca

Hi Mark, Sorry to hear you are here at such a young age – I was diagnosed just before my 51st birthday due to kidney failure and following chemo/stem cell transplant I am currently in remission and I guess similar to you in that I have it, it does not require treatment and it is causing no damage for now and have bloods done every 3 months as part…[Read more]

Hi Mag, Since having MM I have not bothered with travel insurance when travelling in Europe – following my consultants advice. I go when I am well and doubt whether MM would ever need immediate treatment whilst on hols – and I guess I would just book a plane home pronto if necessary. I tried once and found the cost/questioning didn’t really do it…[Read more]

Hi, I echo what has been said – the first cycle is way the worst and then you/your body gets used to it a bit more. I would write a diary of your cycle so you can plan around what suits you and your reactions. I totally agree to go with the energy and clean the oven, bottom cupboards into the wee hours – there is a strange satisfaction to getting…[Read more]