Thanks for the thread Eve, I absolutely love Bluebell walks and will seek them out during my week off treatment next week… camera to the ready. 😎
Great photo David… Mo certainly worked her magic by knocking out that bench with her small magic staff. 🙂
Where are you in the photo? 😎
Superstar??? That's a new one to me… that's Tom's field…regular, yes but not as regular as I once was because I don't have as many contemporaries as I once had… people going through the sam things etc., – I am now quite ahead of the field… mind you, saying that I am on Velcade for the 2nd time, after a very successful 6…[Read more]
I sometimes get the feeing that one day, out of the blue, you will get pulled in and your consultant will sit you down with a grave face and say.. sorry Tom but we made a mistake, way back when… 🙁
It seems that you don't actually have MM… in fact your complaint was linked to a blood disorder that affected your bones and showed…[Read more]
I appreciate that this news must have been devastating for your family… devastating and frightening at the same same I imagine.
My 3 children have all voiced their concerns… but checks with their GPs have shown completely normal levels at this stage… I have told them to check in with their GPs as they grow older, every…[Read more]
An interesting question indeed.
I was also trace for a while before being declared in 'complete remission', following my CDT. I was declared in 'complete remission' at my 100 day post SCT stage and then 'relapsed' after my 300 day stage… so, as my American friends are so fond of saying… 'Go Figure'.:-P
I can't.;-)…[Read more]
Hi Christine & Chris,
I have been following your thread with deep interest and keenest sympathy… 😐
The longest serving MP in the House Of Commons is called the 'Father Of The House', purely for his longevity as a member and some supposed wisdom or memory of events undertaken in his or her time there. I am not sure if I am the MUK's…[Read more]
I am now back on Velcade for the second time, having completed 6 Cycles between May & November 20011 (slight break for a holiday in September, 2011) . First time round it was cannulated, this time Sub-Cut.
This is only Cycle 1. With Velcade on Days 1 & 8 and then 11 & 19… with Dex on Days, 1,2, 8 & 9 – 11, 12 & 19 & 20. I…[Read more]
Well done David,
That sounds like a series of marathons to me at this stage and I bet you are glad to have had Mo beside you to medicate and guide you with stiff words and the occasional stiff arm.8-)
Any more trips on the horizon… or is rest up and recover for a while the order of the day.:-D
Have you asked your consultant about the possibility of MUK5? Is it being operated at your hospital? The chance to get on a Kyprolis trial is worth taking if the chance is there.8-)
Go look see and ask.:-)
Eve's question got me thinking and is the reason for me starting this thread. This thread got me thinking deeper. A few days away from it and I have reached my own personal conclusion… that the trials are being treated with far more importance than the individual Myeloma patient, to the short term detriment of all those patients who fall short…[Read more]
I was initially diagnosed with secondary bone cancer, primary unknown by my relatively small local general hospital in North Pembrokeshire. They carried out a number of tests including one for MM. The haematologist who carried out the test said that he would bet his house on it being MM as all the symptoms were those related to MM…[Read more]
I had my consultant's meet this morning. I haven't slept very much or very well these last few days, knowing this meet would determine more than treatment for Myeloma… it was also a matter of time, buying me some time if the trials were withheld from me.:-|
Blood was taken and I waited… a consultant down, so the wait was a good part of an…[Read more]
Eve asked an important question in Ali's 'Revlimid' thread and I felt it deserved its own thread so as to give it its own space without hi-jacking Ali's question and replies.
This is the question that Eve asked:
[b] 'My Question is, have the MM TRIALS become more important than the individual patient?'
Eve will no doubt…[Read more]
I am so glad that Keith was surrounded by family and friends and that we were represented by you and Steph Andy.
Keith was a true friend to us and I hope we continue to remember his contribution to this board (old site and new).
Farewell Keith… Da Bo Chi, rest in peace.
You say that Adrian and his Doctors were both positive after his first cycle of his frontline treatment… with a drop in his light chains from 327 to 37 he would have every reason to be positive. The fact that his Doctors were positive as well suggests that they were not too worried about his other problems, specifically his…[Read more]
First things first, yes I was deeply saddened by the news of Keith's passing. One moment you are exchanging views and information about treatments, plus a few wants and needs about life away from MM and the next the news comes in that they have suspended treatment while Keith was in hospital. :-/
It was no surprise from then on…[Read more]
It is ironic that the notice of Keith's passing sits below the discussion of the Elephant in the room. Keith was always open about reaching the home run although he was hoping to get one more piece of time to take Sue on holiday to Cape Verde or somewhere similar but it was not to be. Keith started the Bendamustine treatment a month before me…[Read more]
My first response to your opening post was to say that while the SCT route sounds terrifying, like most things in life the actuality is far better that the imagined… and I hold to that.
Then there is another part of the big question that I did not address… that of whether to actually have the transplant or not. You have had…[Read more]
I had my consult prior to starting Cycle 5 of Bendamustine this last Monday. I had a terrible 2 week 'rest' period before the consult and I suspected that my Neutrofils would not be up to a full strength infusion and I told Janet that we should expect a further week's 'rest' to allow my Neuts to catch up. This had occurred at the start of Cycle…[Read more]