Hey Mai & Bruce, I missed this somewhere aong the way…
Great to hear you playing, sounds excellent… 🙂 😎 makes me want to cut and run to Cornwall… if only it were so easy.:-( .
Keep up the good work… and hopefully we might meet up somewhere soon.
Dai.
Hi Keith,
I am surprised to see that you had to go the full max with Velcade but if its brought you in sight of your 2nd SCT then it will have been worth it.
I am fortunate that it seems I might achieve CR after 3 Cycles after a dramatic plunge from my starting point of 264 kappa light chains down to just 13 after 2 Cylces… but that's where my story hits the barrier as I only just managed a paltry 2.1 million Sten Cells in total which were all used for the !st abortive transplant which only gave me 10 months.
Still, I am looking forward to some sort of remission from the Velcade, my consultant being a bit cautious with a prediction of 6/12 months… I hope to prove that wrong by aiming for 14/18 months… we will see.
The very best of luck with your SCT, the Mephalan isn't pleasant we know but it clears the way for the Stem Cells, allowing them the space to do their work and hopefully give you a good, healthy remission. 🙂
I will be rooting for you, please stay in touch.
All the very best 🙂
Dai.
Wonderful news Mari,
Please don't feel that good news might be upsetting for those who have not managed Steve's success, quite the opposite, it is always a boost for me to see someone doing well off piste. 🙂 😎
My SCT, supposedly in the top 10% of responders, only got me 10 months and was therefore considered a failure… but I am now on Velcade and doing marvellously well by reducing my footprint from 264 to 13 in two short cycles… so it seems I do well will treatments (as I did with my CDT) so upwards and onwards from me and the same for Steve… just different routes. 🙂
Dai.
Hi Roz,
Just a quick enquiry to find out if you have taken your south coast 'memories' holiday yet?
Dai.
Thanks Michelle,
I am hoping that I'm down to zero before the next cycle and that cycle 4 will be my last… but as always I will be guided by my consultant and if she wants a 5th then so be it… I don't want to rush into a remission on a weak basis.
Please pass on my best wishes to your Mum, I hope they manage to re-kickstart her Revlimid, even if it does need some firepower with the chlorwhatsit sp and save the Pomalomide sp for later.
Dai.
I am all for a memory book, my children 34,30 & 26 presented me with a set book from W.H. Smith to fill in at my leisure three years ago – it remains blank but I should make a start.
I am glad that I have left it until now because it takes time to focus on what is general memories and what is important nitty gritty. The set book will be fine for general memories but I know that I will write something personal for each of them and for my grandchildren… but either way I should start them soon because this damned disease can catch any of us short at any time and I would prefer to be reasonably 'with it' when I write them.
I wish you and John all the best if you do go ahead with your memory book, I am sure that he would want to be included as much as possible for the girls sake.
Regards
Dai.
Thank you friends all,
My relief that it is working was all that mattered when my consultant she say yes! But then the 13 bit blew me right out of the water – I was stunned. 13, one three, smile, Heaven around the corner.
The 8.3 and the PN are bringers back to earth but I am strangely comforted by them now… because they are causes, side-effects of treatment, not effects of the cancer… because that is under control and for a blessed while, be it 6 months or 18, it will not exist in my daily life… and if needs be I shall wear sun-glasses to keep it in the shade while I look and feel cool. 😎 Just so. 🙂
I seriously looked at getting a Volkswagen Sirrocco… until Janet told me to get serious :-0 so we settled on a Ford C-Max (new model) an excellent car and easy to get in and out of.
Yesterday I'd have settled for a 30 year old Lada. 😉
Dai.
Hi Bridget,
I have no idea of the equivalent values of each of the different type of pain-killers… perhaps Ellen could tell us. I assume the MacMillan nurse did and that you simply react better to mst. I was put onto 80mg mst am & pm (160 total) on initial diagnosis of secondary bone cancer, primary unknown, 3 years ago.
My GP went through my meds after my sct and we reduced the mst to 120mg daily and there I've stayed. No one, consultant, lead nurse, GP seems to question the amounts/strengths of any of my meds… perhaps its time I did.
Dai.
Hi Gill,
Fingers crossed indeed.
I hope that all of Stephen's discomforts and pains disappear quickly… to be replaced by renewed energy and steady improvement.
Dai.
Hi Eve… and you too Eve… 🙂
I do understand the duality of our behaviours and our moods and I suppose I might be guilty of over-reacting… but I'd rather fall flat on my face… time and time again, rather than watch one of ours fall by the wayside because we didn't see the warning signs, :-/ 🙂
I wonder how many carer's have done just that? I don't mean literally… I don't mean having some sort of breakdown or totally losing the ability to act… but those who have found it increasingly difficult to stay here and accept that its alright to be superwoman/man one moment and a mild mannered, overwhelmed human being the next. Perhaps I feel guilty when really I have no need but I sometimes think of those that used to post here regularly… and who just seemed to disappear and I wonder if they simply had no further need of the forum or whether they just got overwhelmed.
On reflection, yes I overreacted… I am aware that most of us have enough on our own plates without being chivvied into being forum sheriffs or marshals (I never know which is which or what they do). I just don't like to see one of us in pain or confusion, or feeling lost… but that still doesn't make me right.
Dai.
Hi Angelheart,
I am sorry if you think you have been ignored… unfortunately your post sort of wandered away in a factual section and has been unlikely to have been seen by most of us on the site.
Twice welcome, please come back and say hello. 🙂
Dai.
Hi Heath,
I am not familiar with, nor have I ever heard of PCL and I thought that my knowledge of blood related diseases was pretty good. I am heartened to hear that you got so much 'extra time' with Sue… remarkable given the prognosis and the accepted mean rate. 🙂
But I am aware of it now and will keep a keen ear out for any other mentions.
Perhaps there is need for this site to have a section or a standing order on a pdf that notes and annotates related blood disorders… especially those that use similar treatments and medicines.
I'm glad to make your acquaintance. 🙂
Dai.
Hi Jane,
Welcome to our small but very supportive world. I truly wish you were not here and I hope that your Mum can get through her CDT without too much more side-effects… it does work marvels and when she is though the other side she will know that it was worth it.
As I said, I truly wish you were not here… but as you are and re: your concerns… well… what Min said.:-)
Dai.
Oh Angelina, I am so very, very sorry and deeply saddened to think of John having to suffer such a miserable and disorienting time… never mind the amount of pain he must have felt in order to keep on forcing down the medicine. I am glad for you all that he is recovering and that he has no recollection of his state and behaviours. I hope that he is well enough to come home soon.
Dai. xxx
Belated Happy Birthday Jo, I hope you had a good day. I will have to find a happy song now for while I like 'Bonnie Boy' it is hardly celebratory. :-S
Much love and many happy returns. 🙂
Dai xxx