Thank you one and all.
I am a strong person… with some of the things I have had to put up with in my life it was either be strong or fold up like a piece of paper until it was physically impossible to fold any more.
I will cope with whatever happens in the future but somehow this potential early Rev & Dex failure became personal… it was me Vs MM and I just didn't want it to win… not now, not yet. These past few days I have been thinking about Peter and Gordon and Patrick and Gaye and all the others that I have either known or known of during the past three years or so and I wanted to fight back… just a little… to win one small victory through will power and desire and sheer bloody mindedness.
Well I got what I wanted, however small the victory and I intend to keep on fighting in a positive manner, using every single tool available to me, be it diet, positive thinking, healthy living, avoiding infection, attracting good fortune, making each day the best that I possibly can until the day comes when I accept that I can do no more… be that as far away as I can possibly make it.
But for all that I felt flat tonight… no sense of joy or jubilation, for all my positivity and good intentions.
Then I watched Jools Holland's 'Later' on the BBC iPlayer… and Dexey's Midnight Runners singing 'Come On Eileen'. Gone were the Denim Overall's and youthful exuberance and in their place were a bunch of old men singing an anthem of a day gone by.
But bloody hell did they sing it well… and the years rolled away and I was lying in bed singing along at the top of my voice and when it finished I burst into tears and cried for no reason and every reason and it was just what I needed… just what I wanted and if the Doctor's had any sense just what they should have ordered.
Great cuddle with Janet… she understood bless her… and now I'm okay and ready for tomorrow and whatever tomorrow brings.
Love to all 8-).
Dai.
Good for you Wendy!
An ex-athlete I have now given up running for trundling…. I can get up quite a head of steam when I start my trundling… But I have the same stopping distance as the QEII!
Take your time and avoid any injuries… But enjoy your efforts and the rewards.
With you in spirit.:-D
Dai.
Belated Happy Birthday Helen,
Have the holiday of a lifetime and enjoy every moment… with plenty of pictures to share when you get back.
Much love, 😀
Dai.
Hi Pilgrim,
Your GP is vital to maintaining a link between home and the haematology team at your hospital… for drugs, home-help (when needed) and general communication if or when you apply for benefits.
But… the main players in your diagnosis and medical development are you and your haematology consultant. The consultant will keep your GP up to date but he/she should have no further say in your treatment once the consultant has been placed.
You should be getting full and unfettered information about the progress and developments of your MGUS, including any findings in the blood tests.
[b]MM 101 – Simplistic version: [/b]
Bence-Jones is a light chain version of MM… which is usually heavy chain, measured in paraproteins. Bence-Jones is measured in kappa light chains. I am not sure that the detection of Bence-Jones is significant, other than determining the type of MM. You really do need to speak to your consultant and/or a Lead Nurse who can be very informative and very supportive.
You can always ring Ellen or one of the team at Myeloma UK… 0800 980 3332 they will put you right within minutes…. that's my advice.8-)
Wishing you all the best:-)
Dai.
Hi Scott,
I followed the whole day with interest… even though none of my teams were involved this year.
It was a great match with Chelsea, and Drogba in particular, providing a Man City type comic book ending… unbelievable.
A truly remarkable year for football in the UK, full of incidents, comebacks and fantastic melt-downs and topped up with some super-human performances from individuals.
As a Notts Forest and Swansea fan I had my moments and eventual satisfaction… especially from Swansea.
I am now looking forward to the Euros and the Olympics with eager anticipation… and MM can go hang for a while.:-) 😀 😉
Dai.
ps.
I still wouldn't give the Chelsea job to Matteo… he has done extraordinarily well but with a squad on a swan song… Chelsea need someone with the vision to rebuild a new team for a new era… and I am not convinced that Roberto Matteo is the man for that job.
Hi Michelle,
I am so sorry that the time had to come to say goodbye to your Mum but I am glad that she was surrounded by love and had a peaceful end. Our best wishes to you and all your family for next Thursday and beyond.
With fond regards:-)
Dai & Janet.
Hi Nicki,
We are so glad to hear that Sam is doing so well… Janet sends her love and hopes that you are well and enjoying seeing Sam go from strength to strength.8-)
Hope to bump into you soon.:-D
Dai & Janet
That is good news Tina. 😀
You might get away with only 4 Cycles at this rate.
Well done, keep positive.8-)
Dai.
Hi Gail,
I'm sorry if I came across as advising too simplistically. I understand that some people find it harder than others to acceptance of this damned disease… and that depression can take hold and dominate. It may be that the medics might have to look at the dosage of his Dex… but the stamping of the feet might indicate some problem with Peripheral Neuropathy (PN) and should be checked out.
My frontline treatment was CDT (Cyclophosphamide/Dexamethasone/Thalidomide) and the Thalidomide left me with quite a severe dose of PN. The best way of describing it for me is to imagine being a child and coming in from playing in the snow, pulling off your wellies and waiting for that chilblain/burning/pins and needles effect to wear off… only with PN, at its worst, it doesn't wear off. I have had it for 2.5 years now, made slightly worse while on Velcade (to the point where they had to lower the dose) but after a while it becomes a nuisance rather than an actual pain. But mine started with my banging and stamping my feet… so it is worth checking it out, especially if Howard has been given no warning or description of the condition.
The referral to a psychologist will do him good I am sure… because the sooner he starts seeing life ahead of him (and not the 'terminal' element of the disease) the sooner he will be able to raise his head and his sights on the possibility of many years of useful, enjoyable and loving experiences on the horizons of his choosing.
I wish you both all the best and a quick resolution to Howard's present difficulties.:-)
Dai.
Thank you all… your support is very much appreciated.:-)
Apart from my CDT my other processes and treatments – SCT and Velcade – relapsed very quickly… [b]but[/b] I have always done well while actually on treatment… so therein lies my hope… the American way will be my guide and I am going to request another 3 cycles of Rev & Dex before any final decision is made. Of course, if my kappa light chains start soaring then bring on whatever's available… but I would like the challenge of turning the chains around by allowing Rev & Dex and Me some time together.
That's the only way I see it… and if they start on the 'but Bendamustine might not be available' line then I say 'so what'… throw the kitchen sink at me… I'll try CDT again… or any combination you like… anything that gets me within touching distance of Carfilzomib – so around 18 months will do nicely by the looks of it. 😉 😎
Dai.
[quote]'My PP's have been hovering around the 5 mark then 2,months ago doubled to 10.26 and then 10.98 at the last check 2 weeks ago'[/quote]
Fingers crossed indeed Keith… let's hope that this is a blip… the doubling must have been a shock but the next movement is very small so it could well be just a bit of movement within normal parameters.:-|
Are you on any kind of maintenance therapy? I note that sometimes they give Thalidomide in small doses at such occurrences… it might be worth discussing. But I suppose the BM Biopsy will tell its tale.. and I truly hope its just a case of tittle-tattle.:-)
Dai.
Gail,
You need to get Howard to talk… negative thought begets negative results… plain simple truth.
He has to find positivity and positive actions, especially so early in the illness…. there are treatments and therapies that can knock back MM for years and years… so why not him?
I have had a succession of relative quick failures with my treatments and yet I am still here and fighting four years later… there are quite a few here whose SCT's have taken well and may gain several, good, relatively healthy years before their next treatment. American studies have shown that soon MM will be in a position to downgrade the disease from 'Terminal' to 'Chronic' -when the median survival rate reches 10 years.. and they are hopeful this will be achieved in the next few years. There are also some excellent trials in progress for drugs such as 'Carfilzomib' which are exciting the drug company and the medics alike… with more to follow given the rate of progress shown in MM drug development in the last 5 or 6 years.
There is much to hope for… much to live for and much, much too soon for heads to drop.
Yes, Howard's old life has gone… but there is a new life to be fought for… a life that can be useful, loving and just plain different.
Get him to talk, to open up and tell him how much you need him to be positive and to fight for every second of the rest of his life.. be it 4 years or hopefully 14.
Regards:-)
Dai.
Hi Gill & Stephen,
I am so sorry to hear that Rev & Dex failed to take… I might be heading the same way, next Monday will determine that… but they have lined up a Benamustine trial 'just in case'… which was put more like 'it looks pretty certain'. Have they not offered Stephen anything else? If the Rev has caused secondary cancers and I know that a recent American study highlighted this as a problem, then surely they are going to chase it up with some sort of treatment?
My consultant (the second and preferred one) said that they would explore previous treatments when the time came.. what about CDT? Revlimid is a therapy, not a chemotherapy but Cyclophosphamide is… and it is coupled with Dex and Thalidomide… assuming Stephen received CDT and that it worked, is it not an option?
Angry is good… but I hope he doesn't give up on the treatments too soon… I won't and as since the beginning I am riding on Stephen's coat-tails… although I am now 58.
Much love and empathy to you both.
Dai.
Tom, Paul & Mavis, thank you very much.
Janet has had a stinker of a cold all week, just beginning to clear up today… so thank goodness for the anti-b's. I think I must have caught her cold as it was coming on and was unlucky enough to get the lung infection.
Dr Happy, saw me on Monday am and told me that I most likely had either pneumonia or some kind of streptococcus infection which would mean me being transferred to a specialist unit where air would be pumped in and out of my room so as not to spread infection to other patients. He said that MM almost guarantees that what might be mild to him would be a danger to me (hence my nickname for him).
The good news was that last week my Neutrofils were 2.3 – they took my blood as I was admitted and even with the infection and a temp of 40.2 my Neutrofils returned at 2.3… so they held up well to the infection and helped me fight it (with the aid of the wonderful Tamizin).
The registrar who saw me Sunday evening told me that as far as MM patients were concerned the first number to check should always be your Neutrofils and I agree. They are the barometer of how fit you are to fight lurgy's and infections… and they are the first thing that I always check on my read-outs.
You are right Mavis, General wards can be horrific. The ward I was in had two main bays… one for men and one for women… 7 beds in the mens and 8 in the women's. There was another, larger bay with 12 beds but it was empty. The ward, or unit, was an Assessment Unit where patients are examined, processed and more often than not shipped off to an appropriate ward within hours. My men's bay had 6 men in it when I arrived… 4 were moved on before the day was out and another 3 moved in. By the end of the next day the bay was full… and I was the only original member.
And of course, as has been noted here before, it had to be a bank holiday… my third in hospital in under a year. The staff were either part-timers or 'bank' nurses and the routines and discipline were a real shambles. Not because the staff weren't caring but because they had little idea of normal procedures. Tuesday am was a real eye-opener, with efficient, industrious staff working to a well ordered system.:-)
But I survived the small ordaal and continue to feel better each day..
Dai.
Hi Eve,
I hope that you are both coping as well as can be expected. Slim's SCT coming on top of Matty must be hard to bear… but while it is a rough, tough love process it is also a period of hope. Visualise Slim coming home and ready for recovery and hopefully a long remission where you can get away in the van at your pleasure… that can be a reality far removed from your present one… a reality based on joy and pragmatic living.
You have both proven to be pragmatic and that is a great blessing where MM is concerned…. and I wish you much love and as many best wishes for your future together in a few short weeks.:-)
Dai.
