Hi,
Wow, I am so pleased for you, what a fantastic result. You have really encouraged me as I am at present on Revlimid (without dex)25mg and not feeling very well with it but if it works it´s worth it. Do you think they might reduce my dose – does the paraprotien have to be at 0 do you think?
Hope everything continues to go well and that you are feeling much better soon. Carol xxx
Hi
Hope everything is going ok and you are getting on top of the routine – I found it very confusing to start with. Yours sounds very similar to my protocol and althought the steroids did make me feel quite upset and grumpy it has been worth it as I have come through the transplant well.
Very best of luck – if you feel grumpy you can always come on here and "grump" at us at 3 am in the morning, we have all been there and well understand. Carol
Hi, only just read about your situation and was horrified. So glad you seem to be getting the right attention now but sorry that you have all been through so much just to get to this point.
Congratulations on your wedding – who needs money if your together?
My very best wishes to you all and prayers for your Mum that her strengh improves a bit to help with the "fight".
Carol xxx
Hi, I had my transplant in February of this year and have not had "achey legs" (but still have a lot of back ache etc.) However, I too am very tired but suppose this will improve when I finish my current round of chemo. Has anyone retuned to their "normal" energy after transplant? – Suppose its asking too much but it would be lovely to think we could aim for getting some get up and go back.
Hope you get some help for your discomfort – they have given me Tramadol and it does seem to be helping more than the high dose codeine did without as many side effects – not quite as dopey as before.
So sorry to meet you like this – we all understand how shocked you and your family must feel. I don´t know if this helps but I was diagnosed in 2005 in my early 50´s and remained very well until last year. Even when they decided we had to start treatment I was still working full time although I did feel very tired by then. Anyway, here I am, just recovering from sct (stem cell transplant) and slowly coming round.
Good luck with you doctors – there are so many amazing treatments available now please take heart from that. New drugs and combinations are constantly coming along as I am sure your medical team will explain much better than I can.
So glad you have a lovely family around you and that you are so close. Thinking of you all.
Carol
Hi Pam
I can´t add any more to the comments you have already received. Just wanted to say how sorry I am that you are going through this awful time and wish you all well in the weeks to come.
Very best wishes
Carol xxx
Hello Peggy
So sorry that you have joined us – but at least you know what your dealing with now and this site is a big help – just about the only place you can have a "little rant" as everyone understands completely – were all in that place at times. It´s difficult to let off steam with loved ones as you don´t want to upset them any more than they already are – I know it´s all very overwhelming but take heart – things are moving at a really fast pace and the outlook for us is so much brighter than it was ten, even five years ago. I honestly could never have imagined when I was first diagnosed 5/6 years ago that I could be doing the things I am now.
Thinking of you
love
Carolxxxx
Hi
So sorry your having such a frustrating time and feeling so low – no surprise you feel so unwell when your on such a demanding treatment regime. Like you, I always feel so less able to cope when my blood count is low. My doctor put me on Aranesp (there are lots of other names for it too) and this did help a great deal – don´t know how appropriate this would be for you. It may be that you have already tried it but I thought it was worth a mention. I only had to do one injection every three weeks but it really did make a big difference between struggling and coping quite well.
Hats off to you for trying to keep going with your interests – it takes such a lot of teeth gritting and real effort – I was going to have an easier day tomorrow but you have inspired me to try and have a go at tackling a couple of jobs. I´m in chemo (revlimid) and although I do have the same problem with hands and feet at present my irritations are no where near as unpleasant as yours.
I do appreciate your thoughts on honesty and transparency in communication matters and I am really surprised that you haven´t seen a doctor in four visits especially given the side effects your experiencing with the Velcade. Do you have access to a didicated Macmillan nurse who might prove a continuous link so that there is a least some consistency for you.
Anyway, hope you have some improvement soon in any direction ( all directions would be great)
Very best wishes
Carol xxx
Hi Gill
Truly sorry that you have had the rotten news – you must be shell shocked and everything a blur.
Please take heart – things are moving at an incredible rate in this field and in the almost six years since I was diagnoesd there have been huge steps forward and progress has been incredible.
There are some lovely supportive people on this site with good positive attitudes which is a big plus when your facing this situation.
Don´t hesitate to ask – someone usually has some really good practical advice you just have to pick which is most suitable for your own very individual situation.
Thinking of you
Carol xxx
Hi
Hope everything goes well – thinking of you.
You are so pretty I think you will look good with or without hair – lovely bone structure!
Best Wishes
Carol xxx
Hi
No wonder your emotional – after the ups and downs you have had just lately I think your allowed!
My lead up to transplant didn´t always go quite to plan either and I feel for you having to take the dex again – bad enough that your hyperactive (I was rather aggresive too which is really out of character for me) but it was knowing that when you stopped taking the dex after a couple of days and came down "off the ceiling" that you would feel absolutely dismal.
Having got through the lead up to and the transplant I should be full of good advice but as I think we all realise each case seems to be so individual all I can say is keep going as you are bravely doing now.
I hope your outcome is as good as ours has been and send very best wishes to you at this difficult time.
Love Carol ps I think you are entitled to indulge yourself a bit – you deserve a treat (or few!)
xxx
Hi Debs
I wonder if we are both on the same trial Myeloma 11? I have had my transplant and am back on Revlimid now (looking back I think I tolerate this better than I did the Velcade that I had for a couple of cycles prior to the transplant.
Anyway, hope the side effects are wearing off – I do get tingly feet and hands but not as badly as before so am really lucky. It´s uncomfortable isn´t it?
Hope everthing is going in the right direction for you.
Good luck with the CTD – not everyone wants it but if you wanted to let us know when you are having it I would like to put you in our "prayers are requested for" circle. I found it very comforting to know that hundreds of people were praying for my safe recovery – many of them I didn´t know but how kind of them to consider me when everyone has such hectic lives nowadays.
Anyway, Best Wishes
Love Carolxxx
Hi
I had Velcade to get my nasty boy count down for a couple of cycles before my transplant. I coped quite well on it – expect your mum is on it by now and you are finding out for yourselves.
Anyway, good luck to you and your mum – I´m so pleased you have each other.
Very best wishes to you
Carol xxx
Hi Tom
Hope you are keeping well and enjoying your remission – we are lucky to be here arn´t we?
Thanks for a lovely, cheerful and positive note – so very welcome! Just to let you know that I rode my husband´s horse yesterday who hasn´t been out of the field for a year and didn´t really see why she should have to leave her buddy (my horse Harry) behind. Anyway, she had a tantrum on a steep hill with a que of traffic both ahead and behind us. She couldn´t decide wether to buck or rear and to be honest I was frightened and was just wondering how I could get off safely when something "clicked" and I got just cross enough to put my foot down and remind her about manners. At once, she started to behave and we ended up having a lovely ride – I think my initial nerves when we started out must have passed to her and I had rattled her a bit – horses pick everything up.
Anyway, although I had to go home and slept like a log for the rest of the day I feel so pleased and feel as if I have made a huge leap forward this last week both physically and mentally – it´s hard getting the confidence back isn´t it just to do the things you have done almost automatically all your life. Glad I didn´t jump off now! Suppose I should only tell you about the nice placid rides or I shall frighten you off horses even more.
Hope things remain positive with you.
Love Carol xxx
Hi Eliz
Thank you for taking the trouble to write. I still can´t quite believe that I am in remission myself! Yes, my first ride was a real triumph, not just for me but for my horse who has never quite understood why mum wasn´t out and about. He was really cross whilst I was away having my transplant and made sure that I new exactly how upset he was when I did eventually get up to see him. Also, for my husband who has done just about everything to keep me going this last few years when, on occassion, things were looking pretty bleak and even the medical team stopped making positive noises – but he never did and has built me a special ramp so that I can climb aboard Harry safely and with confidence for us both.
How are you? Do you have any hobbies to drive your friends and family mad with (I think I bore all mine to bits). You sound lovely and positive – really upbeat which helps everyone I am sure. Are you in treatment at the present? Sorry to be nosey, I quite understand if you would rather not say! I am back in chemo (despite being in remission) but am able to just take tablets at home this time so nothing to complain about at all. Just so very appreciative of everyone who has helped get me to this point.
Very best wishes
Carol
PS.
Would anyone else interested in horses contact me – would be good to encourage each other and just chat with someone who feels the same way.
Take care
