I’m sure growth is imminent, literature says anything upto 3 months to start growing. wouldn’t shave off your hair – every bit of length is precious. Will say that once I noticed it coming back seems to grow/thicken up quite quickly – or that’s the illusion when you’ve had none. I have read of a couple of others on here who didn’t lose their hair…[Read more]

Hi Carole, I went totally bald again when in for SCT and it started sprouting 8 weeks from cells returned but I think I only noticed it because I was bald, has come back a total different colour, very dark but no grey heirs in it! Only a handful of people know I have cancer and my wig is more or less the same as my “natural colour/style” so…[Read more]

Hi Keith,

Glad you are feeling so well, must say I felt great after stem cell collection almost immediately but I think it was like a “burden” had been taken away – what with the primer chemo then the bone pain following the jabs – never experienced anything like that pain not even labour pains, really drags you down, so once the collection was…[Read more]

Hi Mandy,
Glad to hear you are responding and putting up a championship fight. I have often thought of you and wondered what happened at your referral as you had really been through it then, let alone now. Keep it up Mandy – guess now you can say with authority that it can’t get any worse! Will they be looking at another SCT or allo donor for you…[Read more]

Hi Carol, I should have gone back to work 20/3 (3 months) but knew if I did I wouldn’t have the energy to exercise as well so I have chosen to stay off for now and just get fit/normal again. My employers don’t mind as they’re not paying me now and did say everyone still had lots of coughs/colds there so am glad I don’t have to risk it yet. Take…[Read more]

Hi Keith, glad to hear your collection went well and your SCt is soon – its not pleasant but not much worse than being on treatment and you know its only for a short while and the goal of “drug free” is nearing your grasp.. Good luck and stay strong – I think attitude makes all the difference with the SCT process so am sure you’ll be fine
Best…[Read more]

Great news David, it is always encouraging/uplifting to hear such good news and recognise that MM is so individual we cannot fully predict its path and acts as a reminder that really good things can happen too. Long may it last. Rebecca

Hi John, I would ask at your consult about whether they’ll use all, or store, some stem cells. I also got 4 million collection which is the bare minimum for 2 transplants but Prof Roger Cook of Leeds ( a leading guy in the MM world) used them all so it would be better for me than using the bare amount – which makes sense. I queried some research…[Read more]

Hi John, If you go into the Information section, click on Initial Treatment and scroll down to downloads there is a comprehensive guide called High Dose Therapy and ASCt that will answer all your questions and more. But I will quickly run through your questions (had mine in December and am now, would say, fully recovered from the process.
– The…[Read more]

Hi Jane,
Was surprised to hear you have been allowed velcade for such a length of time – has this been through private insurance? I haven’t heard of anyone on this site on it for so long but if you want to trawl through the Myeloma beacon site – and the bloggers on there – I have read a few who have been on it for a considerable time as part of…[Read more]

Hi Izzie, Sorry to hear about your predicament at the moment. I used to think SCT was a massive step but having had one in December and more or less back to normal now I wouldn’t hesitate to do it again altho’ I had about 6/7 horrible weeks with the process/side effects – but soon forgotten. I believe there are trials now where people have been…[Read more]

Carol, This is just brilliant news, congratulations and long may it continue. My 100 days is the end of the month and my Dr doesn’t do an FLC test until 100 days – just to add to the tension!
Rebecca

I think it is very difficult to comment as everyone is so different in MM and how they react to treatment. I had velcade/dex and the 1st cycle reduced my light chains 1120 at starting) by about 80% the biggest hit and then it was very gradual and eventually got 94% reduction from it. Velcade is known to be very good for light chains and my…[Read more]

I was admitted mid November to a general ward – they couldn’t understand what had happened – they thought I had AIDS at one point! then 1 night as my kidneys were decreasing I was told I was going to the Renal centre at another hospital but then the haematologist got involved and I was duly diagnosed. I was in hospital for about 2 weeks on the…[Read more]

Hi, I was initially admitted with 5% kidney function and light chain myloema put on fluids and dex/velcade which raised it to 12% quickly then after 2/3 months I was at the dizzy heights of 16 function and told not to expect anymore improvement. Throughout this dialysis was never mentioned and I was subsequently told that as I could pee ok the…[Read more]

Hi Ann, Congratulations on your results and going back to work – normal life resumes hopefully for you! Hope you have fantastically well deserved long remission and manage to shut myeloma away in a box.
I should be going back to work in March after SCT but am hoping to spin it out so I can enjoy a bit of nice weather – think I deserve it (I…[Read more]

Hi Jane,

Thanks for posting it’s really great to hear your story and although I am sure your are an exception to the rule who’s to say anyone coming into this myloema world is not also a similar exception? Without hope life seems a little bleak. I have just had SCT and on a bit of a downer as all last year the focus/goal was to get to SCT and I…[Read more]

Hi, even if you are lucky enough to get a complete response from your current treatment i.e. ALL evidence of m gone they will still, generally, want him to have an SCT as this is deemed to help give the best possible chance of a longer remission than without it and especially because he is so young. SCT is nothing to fear (had mine 10 weeks ago)…[Read more]

Sorry, don’t know much about this but have read there is a plexifor injection that can be used instead of the growth hormones – think it is very expensive for hospitals to use and therefore limited for those who have had a lot of chemo that is hindering the process. I would have thought they would want you in a stable condition and not rising pre…[Read more]

Mmmm…sounds like you’re certainly doing a lot so soon – perhaps that’s why you’re tired and it should gradually improve. I was told not to overdo it to start with and be gentle but as it happens events took over and I wasn’t well enough to push myself.