Hi all,
Well we have all heard the term 'frozen to the marrow'… and what have we all got in common? A cancer of the plasma cells in that very marrow… I know that I have virtually no regenerating marrow in my right arm, my upper left arm and my left femur… + my ribcage, which apparently looks like a pin cushion, with holes made by extremely large, hat-like pins and my skull with 2 craters etcetera, etcetera.
Even if you have minimal bone damage your central heating system is running on a really low setting and after a SCT, where they practically shut the system down and wait for it to reboot, there is no way of artificially boosting it… you have to wait for regeneration and cell growth replacement… and that is why you feel the cold so much.:-P
Hot water bottles, thermal vests (but watch out for excessive sweating) and layers of easy to doff clothing… plus the patience inspired by the knowledge that every day you are getting stonger and better and filling up with bright new but still baby stem cells… they will need to fully mature (as I understand it 6 to 12 months)… but it will be worth it.:-D 😎 😉
Dai.
Ouch…
Sorry to hear you are having such a hard time of it Mavis… but you are in the right place and every test they do now will stand you in good stead once they have you balanced and going forward.
I too found that I was/am riddled. With a starting block stat of 3,600 Kappa Light Chains I am not surprised but although I was sent to see a consultant bone doctor who advised pinning of upper and lower left arm, upper right and, most urgent, left femur, the decision was made to suspend treatment until a year after my SCT… only I relapsed after 10 months and the subject hasn't arisen since then.
I walk without a stick but not far at any one time… I suppose I have a range of about 0.25 of a mile… tops… before I start seizing up… but a short rest does the trick and then I'm okay to go again – and as for Zometa… never been mentioned… daily Bonefos only for Dai – but that's okay by me – better than the alternative anyway.
I am sure they will straighten you up and get you back on track soon Mavis… many of us have been exactly where you are now and recovered to go a fair distance… your SCT, when it arrives, could give you a long remission and the new medicines on trial will all come online in that time, of that I am convinced.
Chin up and borrow my mantra… 'Whatever It Takes'.
Dai.
[b]Debs wrote and I quote:[/b]
[i]'Each site offers slightly different things…here you get a wider breadth of experience from lots of people that care very much, on the other site you can let rip in a way that this site won't let you unless you use lots of stars and hash signs!!!'[/i]
No longer the case people… I had a word with admin a while back now and they agreed to lift the auto/censored embargo/veto… taking us on trust as responsible adults to monitor and marshall ourselves regarding language (of the 'Timothy' sort).:-0
So its up to us and if we really feel so inclined either due to Dex, bad news, sheer frustration or if your name just happens to begin with Eve… then it will be so – but not to be abused.:-) 😎 😉
Dai.
I was declared in full remission after my course of Velcade… my expected 5 year SCT remission turned out to have lasted just 10 months.. and so I hoped for a year or so from Velcade after a miserable 6 months of bad side-effects… after three days in remission I came down with a cold (6th October, 2011) and still had it when I was declared relapsed on 9th January, 2012. My relapse was actually shown in rising Kappa Light Chains on November 20th, so my official remission was six weeks – four of which were kept in the company of a stinker of a chest infection. Such is life with mm.:-P
But I respond well to treatment… I started my CDT course with a Kappa Light Chain reading of 3,600 and was down to 0, zero, zilch, after just 3 (of 4) cycles. And I was knocking on the door after 2 (of 6) cycles of Velcade… but soon as I come off treatment the ******* thing starts up again. Now I am on Revlimid & Dexamethasone, after narrowly missing out on a super new trial for Carfilzomib… I just hope that `Rev and Dex' take me through to the release, on licence, of Carfilzomib in this country. America, possibly in July this year and then the UK about 18/24 months later.:-0 🙂
But I am still here… First diagnosed with secondary bone cancer, primary unknown in April, 2008 and diagnosed, after moving from by beloved Wales to the most wonderful Nottingham City Hopital, in June 2009. I have extensive bone damage… of which 90% occurred between November '08 and May '09. Such is the post-code lottery in health care.
I remain positive… I am envious of those who have had decent remissions but I am glad for them… I just wish it had worked out for me… but there have been more than a few who came after me on this site and they have sadly and so untimely gone… so my envy is guarded and put into perspective… I am still here and I will follow whatever course of action keeps me going… I love life, I really do… but more so I love my wife and children and grandchildren and I have gathered, from experiences here, just how bad it can be for those left behind… so my solution is brainlessly easy… stay for as long as I can… and I am convinced that can only be achieved by positivity and the willingness to fight the disease by trusting the medics but keeping an eye out for the chances that come along.8-)
However long the remission a person may achieve, the second it is over they are back in the fold… just as vulnerable, just as frightened, just as worthy of our support, care and friendship.
So welcome Janet… I hope that we can be of help and I am sure that you can return that with interest.:-)
Dai.
Hi Kirsty,
I wish you as warm a welcome as can be expected… an unwelcome welcome if you like… an opposite, like the old TV programme, 'I Wish You Were(n't) Here'. But here you are so welcome.:-D
This is the only place on the net that you will ever need or ever need to be. 😎 🙂
There are a few American blogs and newsletters which are good for current information (America is always about 18 months ahead of us and nearly all new drugs and treatments come from US pharmaceutical companies and hospitals/specialist clinics). But for support and information based on patient and carer's experiences, for current treatments and medicines, domestic, financial and carer support issues, then this site and this forum in particular will give you all that you need and then some more.:-)
Before you know it, if you are so inclined, you will be a 'regular' with experience under your belt, even if it is after the first treatment.. there will always be someone just ahead of you and always someone almost stepping on your coat-tails… you will look to one and support the other… and so is has been and so it will, hopefully, ever be.:-)
The staff at MUK are excellent, attend at least one infoDAY as soon as you can, the information exchange and the opportunity of meeting other mmer's and the MUK staff, is such a rewarding and long-lasting experience. They also run this site and are very responsive to our needs… the Grief & Loss section was our idea and the staff created it for us… it came from a need to express end of life procedures and the experience of dealing with the aftermath… it has also grown into a goodbye area, where our carer friends, often the leading lights on this forum, decide its time to go… the grief and loss of good friends can be quite harrowing… and I have found the loss, by proxy of the ones they leave behind almost as hard to bear. We become good friends… only cyber but very, very real… and we patients can sometimes lean a too little heavy on our carer friends… at least I believe so.:-|
So welcome, ask away and understand that there are no 'no go' areas – whatever you ask or want clarifying, be it a medical procedure, drug related of plain fright and funk… there is aways someone who will try and answer… always. The first thing you should understand and that there is no such thing as 'it must only be me'… believe me that is not the truth… far from, there is always someone who ha been there before, such is the width and breadth of mm in all its various guises, problems and dilemmas.:-/
Regards
Dai.
It was untimely but I am so pleased for you that the farewell was both fair and well. Billy sounds like the sort of person you would like to lead you out… as for me I am opting for a DIY… on CD with pauses for whoever `i choose as my frontman… most likely my daughter Amy, a professional singer and used to the tech. I have included brief slots for my three children – Amy, Becky and Ross but the rest… music, a poem and my epilogue etc., will be all me. A bit eerie perhaps but what I want…. and part of me will be there in spirit and voice.
Derek sounds like someone I could have been a good friend to/with – I love the idea of his adopted daughter (I have three children, two step-daughters – whom I am close too but they were adult 17/19 when I met Janet, 35 and 39 next – and an epileptic young woman – under intense care at all times – who lost her father and step-father whom she loved equally, at a very young age – 7 & 15. I 'adopted' her 5 years ago and I have encouraged her with her music… she is back in Wales and playing in 2 duo's and a folk dance band using several instrument, including sax, guitar and cello.
I too lost my beloved grandmother, her son, my father, a few years later and a very, very close friend and fellow musician/singer at the age of 50 quite recently. I have never lost God but these days I look for him inside, never out. I believe that there is that of God in every person and that is where I look first… I always find 'that' and then i am obliged by my conviction (not faith) to treat that person accordingly. That means courtesy, respect, and a universal love. It also means I could never bear arms or go to war against any nation… because nations are made out of individual people and each person etc., etc.,.
Much love to you at this time Jean, I can sympathise and empathise and although it is far from your compass I can feel your pain too.
Dai.
Click on the link below for an audio rendition… it will play automatically. 🙂
http://soundclick.com/share.cfm?id=8554762
[b]In Everything
Verse 1[/b].
I am a grown man;
Look at me I?m crying
Ok, there?s no shame in crying
But it seems I do it all the time
It has been a good while
Since you passed and went your own way
Now all that?s left is memory
That never seems to fade
[b]Chorus: [/b]
So here I am and I?m reaching out
I can?t touch but I still feel
I hear your voice, I see your face; they?re not real
I catch a smile on a TV show, I hear a Robin sing
I see you in everything
I hear you in everything
Instrumental Break
[b]Verse 2. [/b]
I have a good woman
She is standing right beside me
If needs be, she will carry me
I am burden she can bear
But sometimes, on the other side
I feel your hand upon my shoulder
When your shadow falls behind me
I know that somehow you?re still there
[b]Chorus: [/b]
So here I am and I?m reaching out
I can?t touch but I still feel
I hear your voice, I see your face; they?re not real
I catch a smile on a TV show, I hear a Robin sing
I see you in everything
I hear you in everything
[b]Break: [/b]
I walk your walk I know it
One day I?ll walk with you again
And when I see you, in the mirror
I know your smile will ease my pain
[b]Chorus: [/b]
So here I am and I?m reaching out
I can?t touch but I still feel
I hear your voice, I see your face; they?re not real
I catch a smile on a TV show, I hear a Robin sing
I see you in everything
I hear you in everything
Tag:
And I am you in everything
Hi Teresa (my Irish Grandmother-In-Law had your spelling but was called Thirza):-)
Good luck with the trial, it sounds pretty powerful (I've been down the Velcade route). It sounds like a double whammy because Velcade has similar properties.8-)
I relapsed in January (confirmed January 9th) and was sent home with Revlimid and Dexamethasone… only to receive an urgent call at home from my regular consultant (I hadn't seen her that day) asking me if I had taken anything… I said no and she said good.:-)
She told me of a trial, the 'Aspire Trial' run by the American pharmaceutical company 'Onyx'… I qualified on every score except 5% mm in my urine (three goes over seven weeks) but they had called relapse at first sign and my kappa light chains weren't rising fast enough… where's your active disease when you need it? Anyway.. they closed the trial at the beginning of March so it was Rev & Dex for me (just started Cycle 2).
I was disappointed to say the least but funnily enough the inactive arm of the trial was/is Rev & Dex alone… so there you go, I can pretend that I was successful on getting on the trial but missed out on the cut (they still randomised 50/50 on all successful candidates).
Now then.. for general information, the active arm of the trial… Rev + Dex + Carfilzomib.
Carfilzomib, like Velcade (and by the sounds of it similar to AKT) is a proteane Inhibitor… but according to 'Onyx' much gentler, with far fewer side-effects and far more effective all round.
My consultant agrees… and I trust my consultant's opinion. She thinks that Carfilzomib could be the best treatment for mm yet and I believe her. Only thing is we are going to have to stick around for a year or two for the licensing (due in the USA in July) to reach europe and then us.
Carfilzomib, again like Velcade, ties you to the hospital for an hours infusion twice a week for three weeks with a rest week making a four week cycle… 18 Cycles in all. A bit of a bind… but 18 months which… according to my consultant… knocks the mm deep, deep back… allowing whatever you are on at the time, (it would have been the continuation of Rev and Dex for me) a clear run at keeping you going for a much longer time that the median for Rev & Dex… currently 30 months.
So it looks a highly positive drug… bring it on. Personally I hope that Rev and Dex gets me near my median so I can qualify for Carfilzomib… that's my goal… Rev and Dex, followed by the introduction of Carfilzomib and then back to Rev and Dex with a clear shot at the title.8-)
I am a generally positive person… wanng a bit at the moment because I know everything could go pear shaped at any time with this damned disease…but the hope is there… and it is a real, tangible, doable hope… and that will do for me.8-) 😀
Regards to all this fine spring morning.:-)
Dai.
Thanks Gill,
Given half the chance (and after a private word with my lead nurse) I will make it happen… although I won't play the mm card with Janet, I just need to assuage her fears and convince her that with Roy and Angie's support it is very doalble.:-)
On another matter, I recall the problems you were both having with Stephen's Dexatude… have those circumstances changed? I do hope so… because for a couple of days (days 2&3) I find myself biting back words and some pretty nasty feelings of frustration and a complete lack of tolerance. It gets better as the week goes on… but I remember being shocked at Stephens condition and more so by your admittance… just thought I'd ask… I have snapped a few times verbally but I have realised what I have done, apologised and Janet bless her has supported me with both understanding and love… and seeing her doing that fills me with self-loathing. But I know now that it won't take me over… I had a little word with my Dex.. thanked it for all the good work it is doing but told it the I will not allow it to change my nature… even though I suspect that it is actually part of my nature that in normal circumstances I control with ease.:-/
Dai.
Bridget,
You have been an absolute rock to so many of us for so long and yet you always manage to make us smile and feel relaxed… you do more than your part to make such an intrinsically morbid place to be into a delight at times.:-)
God bless you, I love you.8-)
Dai.
If you know what I meant then you are right to pretend that you don't… if you genuinely don't know what I meant then you don't need to pretend… best not really.:-D
But it was good wishes of the 'thank heaven for that' variety… I am sure that Stephen can translate.;-)
Go girl, pack now and go… and enjoy every single minute of your time in France.
If Rev & Dex takes for me then I am considering going to visit my daughter in Spain. A professional singer, she is presently in a duo playing at a hotel in Fuerteventura but she moves next week to play for a group of hotels for the summer season in a small town about 20 kilometres north of Barcelona. I think that my condition, particularly my extensive bone damage plus my DVT, makes flying a real problem… but it is possible to drive to Portsmouth or Plymouth and take the ferry to Santander or Bilbao…from which it is a six hour drive under the shade of the Pyrenees to Barcelona. If I continue to improve and Rev deals with my shoulder problem then the journey is 'doable'. I have planned on 2.5 days there and 2.5 days back, of which there will be 10 hours driving each way. 5 days there and back, six days with Amy with a couple of days for whatever calls loudest… the outward journey should take care of that. And anyway, I plan to ask my brother and his wife to accompany us… they live in Swindon, which means he will come and collect us, do most of the driving in his big comfortable car and…knowing him, pay for most of the expenses… cheap hotel rates arranged by Amy included. Would I feel the slightest bit guilty… not a jot. One, he can afford it and two I'm his big brother (by 14 months) and we love each other deeply.8-) 🙂
I can only hope… Janet is a bit dubious about my capability to handle such a journey but I believe, given the circumstances, that I could… just could. Plus I have never been to either France or Spain… and I love sailing.8-)
Dai.
Ha, you are right there Tom.
Min has explained to me that I can't make plans for Janet after I have gone… she is unique to herself and will deal with my passing as she fits, or as the occasion takes her… but I can't help looking at how our friends have dealt with loss and grief… from Roz, Tina, Sarah and Min and wonder which path will be closest to that of Janet.
Janet is a very pragmatic, sensible, practical person; very loving and loyal to those closest to her but not given to emotional outbursts. She likes to end each day with a kiss and a smile and thoughts of what she wants to do tomorrow. I know she will be devastated, whatever I say… but if she handles her grief something akin to Min then I won't be worried.:-)
At the present we live 5 miles from my step-daughter and her family. Janet dotes, as grandmothers do (in Janet's case the Welsh form, Mamgu – pronounced Mamgee, soft 'g'). We care 'after-school' a couple of days each week… (just Alfie, nearly 6, at the moment but Edith, four next month, from September) and see them for an hour here and there at weekends… something that Janet will continue and, I imagine, expand upon as they get older. We both know that my passing, as unwelcome as that will be for both of us, will also give Janet the time and space and freedom to explore herself and her needs… and I am confident that her pragmatic and practical persona will help her with that process.8-)
Anyway, all of this is for another time and another place… for the time being I will admire Min as she travels her path and explores her freedoms.:-)
Dai.
Hi Gill,
A few weeks ago Min decided it was time to move on from being an active member of the forum, although she may well look in from time to time.
I don't know if you have a facebook account but you can find her (and many of us) there. Look for Min Cato and request friendship.. if she is in a good mood she might sign you up.:-0
She has made some friends, a group of widows with similar circumstances (including a hereto unknown mm widow) and I believe she is even considering moving nearer to Worcester. Anyway, join up, shout at her and go see.:-)
But I still miss her on here like nobody's business.:-/
Dai.
TFFT;-)
😀 😎 🙂
Dai.
Hi Tom 🙂 ,
In a nutshell my bloods have to be monitored closely to ensure that they do not drop to the point where either the prescription has to be [b]A[/b] altered (downward) or worse still, [b]B[/b] discontinued.:-(
After Cycle 1 there is a discernible drop but not to the point of either [b]A[/b] or [b]B[/b]… because of the nature of the drugs (Revlimid & Dexamethasone) a drop is to be expected.. what we want over the next 2 Cycles is a levelling off, or better still, a rise in my bloods readings.:-)
It's a bit squeaky bum time but I am hopeful that after 3 Cycles I will be set up for a run with Rev & Dex.
Dai.
Hi Terry,
This is the bit that we don't fully explain in the guide books. We usually offer a few homilies about taking it easy and letting it wash over you… grin and bear it, hunker down, go with the flow, etcetera, etcetera.:-|
You will get the advice and encouragements…' hold on for a little while longer', 'hang on in there', 'its worth it in the long run'… you get the message.;-)
Many of us find that we are left with one or two long-term weak spots… from feeling cold and loss of appetite to low fatigue thresholds and sleep problems and of course a few bonuses… better, stronger, curlier hair, improved senses, especially smell and taste – in my case my eyesight improved three-fold… that is my prescription went back to that of 1988 – brilliant but wasteful in terms of the cost of new glasses.:-D/ 🙁
[i][b]But all in all its a pretty sh*t ti[/i]me.[/b]
There are 7 days in a week, 24 hours in a day, 60 minutes in every hour (or 3,600 seconds)… the UK, Europe, the World, the Universe and so on. Your inability to jump up and join in, coupled with little appetite, diminished taste and a general feeling of ennui… well, its not much fun.:-P
But you are here… alive and prodding your leg out… getting better and stronger and more alive with each passing minute.. and hopefully the time spent recovering… no, being renewed… will be matched 10, perhaps 20 fold in a few months time.8-)
It will make it all worth while.. but in the meantime you will have to wrap up, cool down, be patient and tolerant of those who look after you… and accept that that is all you can do… for as long as it takes.:-)
Dai.
