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 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]

Hi Phil, Fabulous news – well done you – great to hear news like this as it gives me a real boost. Even tho I know it’s all very individual but by just highlighting this individuality means that none of us can be ruled out for a long remission.Hope you are getting the bubbly out tonight and celebrating your bodys achievement of outwitting those…[Read more]

Hi Ivan, At what gfr was you prior to transplant please – was it a known big risk with your kidneys to transplant? I have low kidney function and they were not affected by the transplant but always like to gain information in the event of future treatment. Thanks

Rebecca

Hi, sorry to hear your remission has not been very long and am glad you have good coping strategies in place. I totally agree with regards yoga and meditation. I used to do yoga as a calming influence during treatment (now abandoned in remission) and went to some Buddhist teachings which included mindfulness and I guess I learnt that I am in…[Read more]

Hi Katy, Whilst you don’t lose your hair on many of the treatments it does get in very bad condition – mine was/is always shoulder length – if I had my time over (which I will at some point) I would opt for a short haircut. Regards wigs – I chose not to tell anyone about my cancer and spent a fortune on very natural wigs so no-one would know -…[Read more]

Hi Sandra, Sorry to hear your news but even on the rise it could be a watch and wait until treatment actually needs to start so can’t think of anything better to set you up for the ride ahead than a good old jaunt with friends before travelling abroad becomes a no-no. Go for it

Rebecca x

Hi Katy, At 62 your mum will no doubt do the treatment including an SCT. She is lucky in that she will be treated early and therefore her body is in a much stronger position for the task ahead. I was diagnosed at 51 and am 2 years at xmas post SCT and no treatment (for now). Please ensure you stop supplements when treatment commences as some can…[Read more]

Hi you too, well done and now for the easy/enjoyable bit of recovery. Have read your posts with interest (mine was 2 years ago this xmas) – for some reason this site allows my sign in about once in 50 attempts so I am a bit late in the “encouragement” dept. Would add that in 3 months suspect you will be totally back to full fitness/life. Take…[Read more]

Thanks for that, yes it is less sensitive to my translocations but will throw my hat in the ring as nothing to lose. Am still ok but can’t shake off a cold I’ve had for 3 weeks and played 3 1/2 hrs tennis today but been told by the coach that I’ve got to stop playing now until next week and recover as my tiredness is affecting my performance. All…[Read more]

Hi all, almost 2 years post SCT and I have not yet taken circumin but would like to start now. Can I anyone tell me exactly the type they get and the website to save me looking at all different stuff etc to come to the same conclusion please?
Christine, I applaud your regime and whilst I used to juice etc I have gradually done nothing to assist…[Read more]

Hi all, Jacquie my apologies for emitting my condolenses in my last post – I am truly sorry for your loss.
Karen, I had to go to another hospital who was prepared to risk my kidneys as I was turned down by the one that would be usual for me to attend. the risk of infection wiping out my kidneys was their main concern I think. Whilst my gut told…[Read more]