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 All,
I had the result of my MRI and its good news. It just showed bad arthritis and several compressed discs as well as the compression fracture. I had convinced myself the MGUS had advanced in view of the increasing paraprotein levels.
So my next monitoring isn’t till next month and I’m going to forget it all till then and hope that the pp’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]

Hi All.
Well I’ve had my MRI and it wasn’t half as bad as I thought it was going to be. I did put eye pads on before I went in, feet first, and I could have fallen asleep. They said it would take 10 mins but it was about 30 mins, they kept putting me further in so I hope that doesn’t mean they saw something. The results will take 2-3 days when…[Read more]

Hi All
Thank you for your replies. Sure does help having this forum to speak to people in a similar position.
Mike-I Like your idea to think of falling asleep, I could well do with the rest. haha
I believe you said in a post sometime ago that PP’s above 30 required treatment. Does that still depend on bone marrow count, ie; if its below the 10%…[Read more]

Hi David, My understanding is that by going onto a trial you have access to newer and potentially more effective drugs (not readily available on the NHS until results are proven by trials – even tho they will have been trialled in other countries/used by them) and by going on a trial you are randomised for maintenance therapy following SCT -…[Read more]

Hi Tom, seems like yesterday when I was following your journey. Great news, hope you are celebrating.

Rebecca

Hi All.
I’m having my MRI on Friday. Hope I don’t freak out coz I’m not keen on small spaces. Has anyone had one for lumber area, just wondered if they put you in feet first or head first.?
I had the blood results which showed no osteoparosis, didn’t think it would coz I don’t fit the profile in any way. However, the bloods showed the PP’s are up…[Read more]

Hi Treakle, I hope you have gleaned from the above posts that life does go on, as normally as possible, once the initial treatment has sunk in and when you manage to get your head round it all – it is, however, a slow process to get to that stage. For me, (diagnosed at 51) the first few months were spent grieving for the loss of my old life,…[Read more]

Hi Craig, sounds like you are finally getting sorted and you are young enough to sail through SCT – had mine at XMas and totally back to normal now, for now!, you will get there too and it will move more to the back of your mind and I guess you may even have the allo option to mull over at your age. It’s quite a bummer getting it younger than the…[Read more]

Hi Jane, I remember your original postings, you worked in a hospice?, I think you were diagnosed after me but was racing ahead. I had my SCT at Xmas and came through, thankfully, unscathed. Wish I could swap hair as I hate the start of my new curls! I am so sorry to hear how tough it’s been but am glad you are still smiling and getting on with…[Read more]

Hi, this is a real blow when you have mentally prepared the route to take. My understanding, from my consultant only, is you must be in a stable position before you SCT ie. not rising numbers. Numbers vary from person to person as it tends the be the best numbers they can get you in but the one thing that doesn’t vary is the stability factor. I…[Read more]

Hi Stanley, I am quite sure once your SCT is over and you are feeling well, living life normally, forgetting what the hospital looks like, that you will revert back to normal also and start planning long term – it is impossible not to. You will feel so well and feel as tho you have your life back why wouldn’t you? I found after sct to be…[Read more]

Congratulations, looks like your last course could get you in complete remission – the best starting point for SCT. Think you’ll walk the SCT – now I’ve done it I’ve come to the conclusion that it’s treated as some really huge stage but I think it’s just another treatment – none are pleasant and some better than others but we all just grit our…[Read more]

Hi Nikki, that’s great news – had my SCT at Xmas and I never got sepsis either – guess they just try and forewarn you but I think in this game it’s better to just get on with it and see what happens as we are all different.
Hi Simon, Don’t worry about SCT – had mine at Xmas ( stem cells returned on my actual 52nd birthday!) back to normal, all…[Read more]

Hi Keith, Great news hope you are planning lots of celebrating. Take care,

Rebecca

Hi Jill

It was the physio that ordered the xray at my request really. I think it was the radiologist who reported on the xray that ordered the MRI. I’ve heard from my GP and its a blood test for the osteoporosis. I thought it was a scan but they only do that if blood test dictates its needed.

I will mention the MGUS when I go for MRI but if the…[Read more]

Hi Karen

Thank you for your very kind comments. I was so uptight yesterday I didn’t come on here. Felt I needed a break from it all.

I haven’t heard regarding an MRI appointment or from my GP yet. I went originally coz I thought it was my arthritis, I did explain my MGUS to the physio but I don’t know whether anyone has thought they should let…[Read more]

Thanks Jill, This is so amazing that she has managed with such high light chains – my kidneys got killed on just 1120! I think it highlights to us all that we all have a unique and individual disease and we must remember this when reading literature. Everyone is so different – and sometimes in a good way. If I were the consultants I’d be…[Read more]