Hi Vicki & Mari,
Thank you both for you words of encouragement. It is great to have a real choice, enthusiastically given by my stand-in consultant. 😀 Mind you it didn't have any cost issues, so perhaps that was a part of the largesse. 😉
I have now started Cycle 4 and I will not get the next update of my Kappa Light Chains back until halfway through Cycle 6… that will tell me whether the 'Once a week' regime for Velcade is working or not. Even if the figures continue to rise it will not matter too much as long as the rises are relatively small… that Velcade is keeping my light chains either on a plateau or on small incremental rises. If the rises in my light chains are large then we will have 2 choices… a.) To revert to twice a week infusions… or b.) To look for another treatment (heaven knows what though… unless they give me access to a trial, which at the moment looks unlikely). 😛
Of course, there is always the chance that my Light Chains will actually plateau… or even start dropping again.8-) 😉
We will have to wait and see. 🙂
Dai.
[b]Silly Things[/b]
Silly things, little things, trivial things
Ways of describing the way that I feel
Not thunder or lightening
But smiles and side-glances
Little romances I know to be real
Dai.
Hi Eve & Andy too.
Eve,
Thank you for posting this thread is is as important as passing on informations about treatments, processes and procedure and SCT Prep, SCT experiences and Post SCT care.8-)
[quote]it's a sad ending, but if you had no regrets about your build up to that time, surely you must feel no regrets, this is what I want, no regrets, and Slim and I have the time left to work on that, I need advice on how to make this time important.[/quote]
[quote]I think only a very few people in our position post, yet this is one of the times you need support, they must look!!! As the figures show. [/quote]
I imagine that quite a few people will look in at this thread… but like 'End of Life & Grief' they will take note while be a tad frightened of the situations as well as being not ready to face the realities quite yet. Which is why I will jump on my bandwagon and call once again for a 'Section' which stores such posts, that describes certain stages, processes and procedures for use in and as an on forum archive.8-) 🙂 😎
Thanks again.
Andy,
[quote]I do think its very different for carers I can't imagine the pain and anguish that carers go through. Worrying at every mood swing, temp rise, infection, hospital visit, blood test results etc etc that their loved one goes through. The thought of losing their loved must be devastating. Putting on a brave face whilst been eaten with worry inside.
Carers get the s****y end of the stick and I have nothing but admiration and love for them all because they are the true heroes and heroines of any MM journey.[/quote]
Perfect… simply perfect.8-) 😀 😀
Much love to you all.
Dai.
Thank you Garry,
i am so glad that Sue was surrounded by love when she slipped away… it is what I want for myself and if it as you have described for Sue
[quote]Her twelve year old daughter said goodbye to her and kissed her Saturday lunch time. My fantastic mum Megan, my wife Denise and I spent the rest of the time holding, sponging, kissing, stroking and loving her until she slipped away very peacefully at 11.10am today. [/quote]
Then I will be more than satisfied.
Again, thank you and I hope your wonderful Mum, your wonderful wife and your niece surround you and each other with that same love for as long as you all need it.
Regards
Dai.
Hi Mari,
I am so sorry to hear your news of Stephen's poor health. I am glad that his medics are still persevering with treatment be it ever so small doses of Revlimid and I hope it keeps the prognosis at bay for as long as you both need.
Much love
Dai.
Excellent news Tom!
Woody Guthrie had a saying which I love and use frequently: 'Take It Easy… But Take it!'
Which, when expanded, makes perfect sense and great advice. Take it easy… for at least 3 months and avoid crowds and any other creatures that are not immediate family or friends you can trust to cheer you up. 😎
Take it easy physically and mentally… avoid stressful situations in the same way that you would avoid people with any sort of infections… be they ever so small or seemingly innocuous. 😉
Take it easy but take it… use your recovery time to work out what is important to you, really important… and plan for the future, don't be scared of it, it could last for years and years. You have hit on the right time to be staring MM in the face with confidence in the new medicines and treatments lining up to push MM back for many years.8-)
Regards
Dai.
Hi Phil,
I can recommend:
[quote]SUPER TRAVELLER Compression Travel Flight Socks Size 6-9, 39-43 MEDIUM – BLACK
Available on Amazon with free next day delivery on [b]Amazon Prime[/b]. I can attest to their delivery service and to the quality of the socks… much easier to put on than the NHS socks which takes two Tug O' War teams and copious amounts of small pains, with ten pinch to the inch. I can even manage to put them on myself (on a good day) which is a good stand-bye. If you haven't got a Janet or an Eve then that comes in handy.[/quote]
I include the review below from the Amazon review for these items. They averaged 4.5 stars (from 50 reviews, which might held you with the confidence factor.8-)
[quote]I chose these socks because I needed to reduce the swelling in my ankles and support my aching legs. I wear them all day and find that they are extremely comfortable. I found them so comfortable, I've ordered more socks.[/quote]
Best of luck with using whatever you settle on.:-)
Dai.
(2 DVT's – 2011 Right & 2012 Left)
Hi David,
I too am on Velcade and Dex (for the second time… first time 6 full cycles with no breathlessness) but now I get breathlessness after any kind of exertion and sometimes when I wake with no exertions to talk of.;-)
It is not too bad but noticeable all the same.:-)
Dai.
Hi Vicki & Tom,
I have had the PN in my feet since the frontline CDT… I was told that it often faded after the SCT stage but not, alas, for me. It started to affect my hands over the past 3 years but nothing too drastic and I could live with what I had. It is only in the last 8 weeks that the PN in my hands (and feet) has accelerated to the point where the numbness and flexibility has seriously affected my guitar (bouzouki, mandola, mandolin etc.,) playing to the point where the necessary clarity or quality has disappeared. :-/
Hi Dick,
You are quite right about the sunshine and my continued presence on this earth and I wouldn't swap the company of my wife and family for any amount of musical skills… which is what I was trying to say in my opening post. Asking you to 'wind your neck in' would be an insult… I started a thread and that very act grants anyone on this board to express their opinion or offer their advice in response, so please feel free to do so.8-)
I was never a great player… but I was competent enough for my own needs, a few groups and for a really good Ceilidh Band… I could 'Diddley Dee' with the best of them. Funnily enough I have never mourned not being able to play golf anymore and I had already grown too old for my other sporting pursuits (apart from Hill Walking). 🙂
I already miss just swinging a guitar up and finger-picking or gently strumming while leaning a ear down to the instrument and panning for the hint of a melody… songwriting was/is my greatest individual pleasure… creating something from nothing as a reflection of my creative freedom. That is why I shall miss the ability to play… far, far more than just entertaining myself and others.:-)
Regards to all.
Dai.
Hi Ceri,
On a practical level I would contact the MacMillan Nurses first thing tomorrow, give them your details and tell them your story and take the advice they offer.
http://www.macmillan.org.uk/Home.aspx
Once you have their attention I am sure that everything will seem clearer and the help offered will lift the burden of what, how, where and when… if not why.
Keep in touch and let us know how things progress… the first thing to get sorted is an environment where your Dad can come home to that is familiar yet supportive… MacMillan's can help with that.
Dai.
Excellent news Tom…
I was really worried when you dropped the C: Diff news on us… but they obviously caught it early and nipped it in the bud. 😎 😛
Take it easy… but take it and I hope your recovery is trouble free and leads to a long and happy remission. 🙂
Dai.
Hi Jean and you too Frank… 😎
That is fantastic news. You have both been very quiet for quite a while, poddling along with an air of 'no news is good news' about you… and now this! 😀
Your news has cheered me up no end and you both deserve the boost, well done and long may it last.8-)
Much love…
Dai.
Hi David,
I have read and re-read your initial post and have wanted to reply… but I kept on going back to the written details. Okay, I think I am ready to reply. You always explain things lucidly and you always get your facts right, so I will assume and take as read that all we need to know is in that initial post, plus the explanation in response to others posts in your 2nd reply.:-)
We are told, with much evidence on here as well as in official MUK literature, that relapse is officially called after 3 consecutive monthly consults that show proof of rising PP's or Kappa Light Chains. Your last 3 readings have been 8.9 + 8.1 + 8.4. Surely the 8.4 should be reading 1 of 3. Even if the 2nd reading showed another rise (say 8.4 to 9.0) then the consultant should start preparing you for coming off Velcade and to start looking at the third line treatment (Revlimid according to NICE guidelines). Pulling you off Velcade after such an insignificant rise of 0.3 seems non-sensical… however and whichever way you look at it. :-/
So we must look at his concern at the going ons with your legs. You haven;t told us how bad they have got… I presume we are talking about PN here? PN is a common side-effect with Velcade. Velcade worked wonderfully well for me first time round, in the Summer of 2011, terminating a secondary tumour (in a nasty place for treating) in the 1st Cycle and bringing my Light Chains down to 0 (zero) by Cycle 3. They kept them at zero until Cycle 6… where they signed me off and sent me out into the wide world… not knowing that I would be back within 6 weeks… ah well.;-)
But I paid the price through my PN progression, which I was told would gradually get better… it never did… but it did take the whole 6 Cycles to develop and it was on top of the PN inherited from my CDT treatment… where they blamed the Thalidomide. I am now on Cycle 3 of Velcade 2nd time around and after an initial agreed regime of 2 Cycles of: Wk 1 = V1 + V2 – Wk 2 V1 + V2 followed by a rest week, we switched to single Infusions on each Monday for 4 weeks followed by a weeks rest… I had my final infusion of C3 yesterday.:-D
My PN is growing again, especially in my hands… which has more or less finished my guitar playing days, excepting the most basic strums. I have been told that the PN progression is not so bad, even imperceptible, on the once a week regime… but that is usually accompanied by a reduction in the Velcade dosage… mine stays the same at full dose of 2.75. I have to balance the full dose against the extra time that the new 5 week regime buys me and all in all I'll settle for the extra time thank you very much.8-)
So David… unless you have developed full-blown PN that is threatening your mobility and the flexibility and/or dexterity in you hands… I would seriously question your Consultant's decision, even to the point of a 2nd opinion.:-|
One last thing… has your Consultant mentioned any correlation between Velcade, its side-effects, especially the PN… and your Prostate condition?
My 2p's worth.
Dai.
Hi Annette,
I am approaching the end of my MM journey. Although I still look Okay and generally feel Okay I have run out of officially recognised treatments and me and my medics are scratching around for treatments that will keep me going and extend my life for a few more months or weeks… we longer talk about years.
Recently, when feeling a tad down I asked my wife if I was becoming a bit of a burden… I added that I felt that perhaps it was time I kicked my clogs. I spoke with my tongue in my cheek… but even so I got a flea in my ear.
My wife said that the only time she would feel like that would be if I was suffering, with little option of recovery… until then she loved every hour of every day with me… she said that she never felt that I was a burden of any kind… that she knew that I would reciprocate every single form of care if it were here that needed care… and that was that. She also added that she never thought in terms of 'kicking clogs', that was my domain… my 'gallows humour'. 😉
And she speaks the truth… it is me that talks about 'relief' after I have gone… because it makes me feel pleased to think that after, or alongside, her grief, she will be able to do things such as travelling freely to visit our daughter in Wales (where we lived before coming to Nottingham for treatment). Travelling on holiday elsewhere… joining the WI which she has wanted to do for years but refuses to leave me, despite my encouragement. A whole plethora of small freedoms that my illness has curtailed. So it is my imagination that feels this idea of 'relief'. 🙂
Call it what you will… by any other name, by any other form… but it will eventually come… even though you will still wish that MM had never raised its head and that you could reclaim those years lost to this damned decease.
I wish you and yours as much happinesses and loving moments and memories of your Dad at this time. 🙂
Dai.
Thank you Maureen, Jo and Mavis…
I had my 4th and last infusion of the new regime this morning… no record times but in and out in an hour and a half so not too bad.:-)
I have the rest of this week to recover and then the week after that to my own devices as my official rest week. I take my last dose of Dex tomorrow and then I am drug free (excepting my normal box full) for 12 days… bliss.8-)
Conversely I looked pale and felt windswept and interesting from waking up to the present. I feel relatively strong but usually at this stage i am 2 points to the starboard bow of Tigger… but not today… I'm laying the malaise firmly at the door of the weather. Without the cool of my bedroom and my fan I am featherlight and feeble. Well, that's my excuse. 😀
I asked for a 'Free Light Test' to be taken, so as to have it back for my next Consult in a fortnight's time… giving us the results from the last Cycle (2) and this one (3). My lead nurse thought it a good idea, got permission from my consultant and it was executed… Brownie points to me… as long as we get the right result… otherwise I will keep my head down and my mouth firmly closed. 😉
'Whatever It Takes'… 😎
Dai.
