Hi Colin
Just heard that my paraprotien is at 0 !! Can´t quite believe it and am hoping it´s not a "fluke". Glad the dex takes away the back pain – I have had that before the SCT (it made me think I had superhuman powers and was cleaning kitchens etc at 3 am in the morning) but not since – perhaps I could do with some now to perk me up!
It r…[Read more]

Hi Sarah
Sorry things seem so down at this moment,Sarah go and see your doctor,all the worry tears and upset is taking it,s toll on you.Get your emotions under control even if it means popping pills it will put you in a better frame of mind,it is so hard when you cannot see any light at the end of the tunnel,and the demons always seem to come out…[Read more]

Thanks Tom, Pleased that you also feel like keep on "giving it a go". Sometimes I can feel my family´s disapproval when I try to do the things I did pre transplant – but the more I try the more I seem to be achieving – rather like you. My daughter says I do things now that lots of 56 year old´s have never done so why don´t I just try being a bi…[Read more]

Hi Eve, So sorry that you have been disheartened but glad you are going to see the trial nurse. Perhaps your consultant will be able to be more clear when you have next weeks bloods as the chemo does have what my consultant calls a long "shelf life" and keeps working well after we stop taking it.
There seem to be quite a few different types of…[Read more]

Hi Helen, Thanks for your reply and hope that my reply to MikeB also encourages you. I won´t say that the sct was all fun but not as bad as I had heard. One hint that I wish I had known about beforehand. Lots of people of finding that if they suck ice lollies or anything like that ALL THE TIME whilst they are giving you the high dose chemo (I…[Read more]

Thanks Mike – I hope this encourages you – just had the news that my paraprotien is at 0 !!!!!!! Can´t quite get to grips with it yet. Also odd days I seem to ge getting a bit more energy – just been for a short (a very short) little horse ride – I am now off to bed to recover but it is amazing that I can manage to do it and I am so grateful and…[Read more]

Bridget!

Your post was not at all silly…. it was inspirational… Janet is very pleased for you and she says that it is a matter of 'as well as', not 'instead of'… she wants plusses and proud moments for us all… and so do I.

Enjoy your freedom.8-)

Dai.

Oh Dai I really hope they get your leg sorted very soon!! It is so depressing and I am sorry if my silly post made yoy feel worse Fingers toes and eyes crossed for you love Bridget x

Picnics! Movies? Derbyshire???? (I am envious of the last to be sure).

Perfect timing… that means mephalan and stem cells returned before the week-end when everything quietens down and you can get on with the onerous duty of having nothing to report but us chickens.

Good luck with all of it Jet and I truly hope that I can look back on…[Read more]

Hi Amelie,

It has been good not hearing from you. 😀

The consultant has raised the point of the m components but if he did it in context i.e. the figures are x but everything else is fine then perhaps all s/he is doing is noting that here is a presence but nothing out of the ordinary. The next meeting will tell all – whether the m…[Read more]

I'm not going to rain on your parade Bridget… suffice to say I am envious of your mobility but I couldn't wish it on a more deserving person.:-D

Enjoy yourself… skip if you are able, shuffle, trundle or just step out if you are not.:-)

Good for you, good on you… well done. xxx 😎

Dai.

Dear Min well you deserved a couple of glasses of vino after the day you had!! Thank goodness the surgeon agreed to do the kyphoplasty earier ! I wish theses doctors would consider how they would feel in that situation pain makes the healing process much more difficult but apart from that Peter has had to put up with a high level of pain for such…[Read more]

Hi Carol
My husband is on Myeloma11 trials started February on ctd arm,intense pathway,got septic pneumonia in April,spent 22 days in hospital,started chemo again on less steroids,because of damage to lungs,just finishing 6 cycle,had meeting with consultant last week,no positive outcome.
left not knowing what is going to happen,talked about not…[Read more]

Good luck Jet and Keith xxxx

Hi Jo

Yep my little legs are doing ten to the dozen when I go out on bike, and yep My Young Bride and I are doing great, just starting to put a Kitchen in at home 😎 half the old one ripped out, and three wall units put up tonight 😀 Young bride now filling them up with?? it will take me ages to find things ha ha.

How are you doing then Jo…[Read more]

Thank you all again for your support. Much happier today. Mum still gets breathless and is tired but she is actually eating proper food today,so we are so relieved.Here is hoping that this treatment will be successful and bring them paraprotiens dow.
Thank you all again
Gina xx

Good luck Jet and Keith hopefully you will be home again very soon ! It is definitely worth it so hang in there just think of being drug free ! love Bridget x

Hi Ozzy

I have not had an SCT but I have had leg and hip ache someone told me it could be the Steriods as we do have large doses during chemo this could right
Regrds Jo;-)