Hi Maureen,
I am so glad that you managed to get Ian out and about with a lunch thrown in to boot. I imagine he must have felt both relieved and slightly frightened by the 'ordeal' of the transportation. It must have been strange for him… finding himself free of the hospital and its confines, rules and regulations but at the same time finding the 'freedom' slightly scary. 😛
I hope you manage to arrange the family lunch and that all goes well, with Ian feeling up for it and a happy time for all being the order of the day. 😎
I hope you enjoy your 60th Birthday (Date?) 6 months before mine. 😀
Wishing you both the very best of luck and good fortune. 🙂
Dai.
Hi Thomas,
I wish you all the best with all procedures and processes up to and including your SCT. I imagine we will all draw a little closer during the SCT itself, ready to offer any advice asked for or perceived as needed. You may also need advice or small prompts with your GCSF injections prior to your Harvest. 🙂
Exciting times ahead, even if they are not perceived as such… 😎
Regards
Dai.
Hi Wendy,
I am sorry your Light Chains are up to a level that says 'Relapse'. Still, I hope you manage to eat, drink, dance and play tennis without interruption from your MM. I am astounded that your recreation includes a training regime that will allow you to compete in a triathlon. :-0 :-0 😀 8-).
My Light Chains are in the same range as yours but I get completely knackered if I walk from my bedroom to the kitchen and back… (3 am raid on the kitchen for Horlicks and chocolate biscuits). I am hoping that my consultant reduces my Velcade from twice weekly to once a week if the results show that the Velcade is holding the Light Chains 'in the range'. That's our plan… and then, hopefully, I will get a little fitter… nothing spectacular, just enough to walk a 100 yards – rest – and then back… that for me will be my 'triathlon.8-)
Treat your MM with disdain for as long as you can… and then start fooling it to get whatever you need.:-)
Dai.
Hi Anthony,
Welcome to the MUK forum… as always I will say I wish you were not here but as you are let's try make the best of it. 🙂
I had real bad trouble with my vision following my SCT, especially as I had only purchased two pairs of varifocals and a back up pair of prescription sunglasses a few weeks before the transplant in March 2010. 🙁
My problem was unusual inasmuch as my prescription improved by just over 10 years. That is my prescription was slightly better than that of 1998. My Consultant shook her head, having not heard of such a change. So… I went back to my optician and had new lenses fitted (Specsavers).
But now that we are trying to find me a treatment to keep me going and find me some time the problem has reoccured. I am on Velcade for the 2nd time and my vision has deteriorated quite badly… I have several pairs of glasses but none of them work, so I am going back to Specsavers to see what they can offer. I am sure that they will solve the problem short-term but I am also sure that the problem will change if my treatment changes… but hey & Ho! 😛 😀
Talk to your consultant… see what s/he says but I doubt that they can prescribe anything to improve your sight, short of going to your opticians and forking out for new glasses.:-0
All the best.8-)
Dai.
Best wishes for a relatively smooth and trouble free transplant Geoff. 🙂
The die is cast now Jacquie, try to relax and be there for him… but also take the opportunity to recharge your own batteries in preparation for the homecoming and the long and slow recovery process… it will be on you before you know it.8-)
Dai.
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? 😎
Dai.
Hi Chris,
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 Cycles last time, with a full 8 Cycles, stretched out over as long as possible if they do their job… and if they do then it would be absolutely wonderful – stretching my treatment out over a 8 to 10 month period… that really would be something. 😀
I am holding out for that and hoping… but MM has a way of jumping up and biting you on the bum. Still, at the moment I am hopeful and willing to run with it with a spring in my step and hope in my heart, even though I feel like a wet rag… but no pain and no new problems so far. 😉
I hope they find something for Chris to latch on to… something that clicks and sets all the tumblers rolling in a forward direction. He certainly deserves a break I also have to say that our Andy & Steph have had not too dissimilar a journey to you and Chris… Andy has never reached his SCT stage – they threw every drug in the book at him but couldn't find a combo or single drug regime to bring his PP's down to a safe level for his SCT – as a matter of fact he was referred to a top man in Newcastle and the Professor there tried again but still couldn't fond the answer. Andy will put me right but I believe that his PP's were similar to those of Chris at best but they were deemed to be not at a safe enough level to proceed… which made my eyebrows rise when you said that Chris was allowed the go ahead. :-/
Andy!!! :-0
Here is hoping for something from MUK5… or something akin… And if they can keep me going then who knows? Perhaps repeats of older, tried and tested treatments might be a way of keeping us going until something is found that takes us forward.:-)
Much respect and love.8-)
Dai.
PS… My PN has stopped me recording for a while but here is one of my favourite compositions for you to listen to..:
http://soundclick.com/share.cfm?id=7443648
Click and it should load automatically. 😎
Hi Tom,
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 similar results to MM. Your SCT actually cleared it up and all you need now is an occasional course of maintenance treatment to boost you upwards and onwards. 😀
He will go on to say that he noticed a study on Blood and Alcohol, especially Vodka, where these patterns were seen to emerge. 😎
Well Tom, I know it's a pipe-dream but if such a mistake had to be found in anyone I wish it on you. And the Vodka based Maintenance Therapy.. 🙂
Much love and blessings. 😎
Dai.
Hi Skyblue…
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 2 years or so, excepting that they start with back or general bone pain.
My siblings have also been for checks, with only 1 older sister (8 siblings in all) showing any elevated blood signs… but she has had them for years and I suffered with acute anaemia for over 45 years (I will be 60 this year) before being diagnosed with MM (of which I am told is a pure co-incidence and has no bearing on my disease).
Like your medics my Consultant has brushed aside any consideration of hereditary or genetic comparisons.
There have been other cases cited on here over the past 4 years or so but nothing proven.
I wish your Gran the easiest of paths and your family peace of mind. 🙂
Dai.
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.;-)
Dai.
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 equivalent, as a matter of fact I suspect not… but I must be close. 🙂
I have not heard of such a rapid declaration of failure in my time here… of that [i]I am sure[/i] and my heart goes out to the both of you. All of us who have had to face relapses to one degree or another can understand the pain and angst that other MM sufferers go through… it is an absolutely horrible experience in which you wonder how on earth you are going to find the wherewithal to continue… wondering what comes next and how you are going to bear it.
To a certain extent a relapse is a relapse… I have had 4… 2 (SCT – 10 months) and Velcade (2 months remission after a highly successful 6 Cycles that produced full remission) were all consuming and I didn't know how to cope. The next one, Revlimid, (10 months) was irritating and angered me (another story for another time) and the last one, Bendamustine (4 months) had me saying Okayyy! And now I am back on Velcade…
For you and Chris to get such devastating news after a relatively few short weeks seems to me to be insuperable news… but news there always is and I assume that Dr. Cavet is news gathering with a vengeance. I also assume that the MUK5 trials will be one of those pieces of news. If I could have access to any treatment at this time… and I am at the scratching around and Kitchen Sync time believe me… I would grab hold of the MUK5, with both hands… and never mind that little trickle of negativity with the [i]'I'd bet we would get the Velcade'[/i], you're allowed that, you've earned it… trust in the random treatment fairies, they are pretty good I have heard. 😉
Of all the new treatments (both of them) and the novel drugs in waiting, Kyprolis (Carfilzomib that was) seems to be the best and certainly produced the most bullish results from my consultant to say the least. God knows why Chris's treatment regime seemed to stop so suddenly and leave you with Chris's PP's at 23 going into his SCT (another unheard of high score)… have your medics addressed this?:-|
I do hope that you have some good news soon, as well as some positive and effective treatment that allows Chris to move forward into a settled regime… and a bit of peace of mind for yourself.:-)
My mantra was/is [i]'Whatever It Takes[/i]',.. I hope Chris finds one to suit and grasps it firmly. My one bit of advice would be not to try for what he was before… just try for the best he can be right now… and to reach for your hand when it get's a bit tough.8-)
With much respect and love.
Dai. xxx
Hi Helen,
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 will then have a week off before a consult on Monday 27th. (Don't confuse days and dates like I did). Basically I will have 4 doses of Velcade and 8 doses of Dex in this 2 week window with a week off before the next consult.
I have been taken off Bendamustine for the same reason as our friend Keith… the Chemo was bringing my Neuts down too far to the point where they could not recover between infusions… but the rest of my bloods are Okay so we were looking for a treatment the had a chance of keeping my MM at bay while allowing my Neuts to recover. I was Neutropenic for almost 12 weeks with the Bendamustine and my quality of life, especially with seeing family etc., was non-existent. I had 2 weeks off with 6 GCSF injections before starting Velcade and my Neuts went from 0.53 to 2.26… so we are up and away with 2 infusions under my belt (literally) and 4 doses of Dex – the same next week and we will take it from there.
I remember my first time on Vel/Dex and it's more or less the same with weariness and fatigue being the worst effects. Sub-Cut is much, much better and easier to take than the old cannulation and my PN, which was bad anyway, seems to have remained the same.
If my bloods improve (or stay the same) with recovery shown in the Neuts range then the idea is to try for 1 infusion per week with 1 Dex to follow… with the idea to stretch my treatment out… i.e. 8 Cycles of Dex over a longer period. Here's hoping.8-)
I don't go out to work… and I haven't since selling the Pub/Restaurant in September 2008. My bone damage has seen to that part of my life and while I have wanted to extend my working from home I have found that treatment has put paid to any regular working patterns. I appreciate that some people feel obliged to work for differing reasons but the chance to spend time with family and trusting to benefits etc., is also an attractive way of using the time left.:-D
For those that do go out to work I wish you well and I hope you cope… but not at the expense of creating rifts between work and family… and yes, I do understand that some people are better off than others and can afford to take the risk and wait until it gets too bad to stay at work.
Love and the best of health to all.:-)
Whatever it takes.8-)
Dai.
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
Dai.
Hi Helen,
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.:-)
Dai.
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 of the trial criteria, and to the critical detriment of those that cannot even be considered to even look at the criteria.
It is our consultants who put people forward for these trials… some they know will fulfil the criteria, some they hope will fulfil the criteria and then there is the rest that they don't even bother thinking as candidates for the trial. The consultants are not to blame… the pharmaceutical companies set the criteria and they want the very best chance of getting their product to work. To get the product to work they need their trialists' to be as fit as it is possible to be fit under the circumstances in order to present their findings to the assessment of the national/international agencies who will examine the findings through their own experts before considering the product for licensing.
I asked my consultant why we have to go through the trials again in the UK after being granted a licence by the most stringent agency in the world i.e. the American FAD (Food & Drink) agency. She replied that it is not down to the UK but the European Agency who refuse to accept the findings of the USA FAD. An arrogance I find stunning at the very least. Yes, I believe there should be a top body of European medical scientists and experts who should examine the findings to the minutest level… and that we should be bound by their findings… but only then, if they have doubts, should a European trial be ordered… and not as a matter of procedure.
This way they create jobs for the medics, researchers and committee members but delay by a matter of many, many months the chance for patients to receive life extending medicines. In this delay there are many whose Myeloma will have advanced to a level where the medicines might not properly work and many others who will have died. So yes, trials should be thorough and properly followed to get the best possible results… but thereafter they should be expedited as quickly as possible to reach the consultants and patients.
And this is why the American Myeloma communities are so far advanced than we in Europe. There are a few pharmaceutical companies in Europe but they seem to be far behind the Americans in producing products that truly advance the Myeloma life expectancy. Before Kyprolis June 2012 and Pomalyst January 2013 the last licensed product of any significance that we will recognise is Revlimid 2006… so these products don't turn up that often… but those that do are significant in the world of Myeloma and should be put onto the market and into use as soon as humanly possible… and not delayed without proper and reasonable cause.
Dai.
