Carol, thank you… I only take Dex once a week, so I have to make it stretch.:-D I am keeping notes of its effects during the week to see if any patterns develop. Tuesday is my nominated 'DEXDAY TM' so I imagine that Tues/Weds/Thurs will see the strongest effects with a tapering off towards Monday… but I will not be surprised in the least if my notes show a completely different pattern.:-)
Eva, thank you for your input, I truly appreciate how much work you put into your reply and I am sure that the information will become very useful as I move down the line… again, thank you.:-)
Regards to all this fine and sunny 'DEXDAY TM'.:-D
Dai.
Hi Carol,
Everything seems to be in place so all you can do now is to try and enjoy the ride..
… well, perhaps 'enjoy' is stretching it a bit but you sound like the sort of person who will take and make note of the experience.8-)
In the meantime enjoy your break in Spain… and while you are there try and mentally bottle some of the sunshine and save it for those small dark moments you may encounter during your SCT stay… but then again it will most likely stay unopened, unneeded and unnecessary.:-)
Regards
Dai.
Thank you all for reporting in. I am curious about what drug causes what… but moreover I want to work with my specialist nurse to try and find remedies for those side-effects that cause misery (rather than treatment threatening withdrawal).:-(
I suppose I want to find out the cause and effects of Dex because I hope to be on it for a long time and if there are any measures or remedies that dilute or delete some of the 'nasties' then I feel honour bound to do so.;-)
Regards to all:-)
Dai.
Michelle,
All I can say is how sorry I am for you and your children… I hope that the love you shared with Phil will live on in you and yours… providing you with the strength to carry on together.
Dai.
You are out… now stay out… and get stronger under your own steam.:-D
BUT… don't hesitate to call for help if you think something is wrong… there have been too many cases here of people (ahem) who think they should [b]'hang on for a while longer before I call in with this' [/b]etcetera.;-)
Good luck and good health Andy.:-)
Dai.
Hi Nicola,
MM being what it is my wife, children and grandchildren have been slowly saying goodbye to me for the last 3 years. I have been hospitalised with infections 5 times in the past 18 months of which 2 stays had hairy moments… but thanks to the medications and the luck of the draw I am still here with chance of a couple of more years if my latest treatment takes hold and keeps hold of my MM.
I feel desperately sorry that your Dad did not get a run at the treatments that might well have allowed him some small victories and enough time for slow goodbyes. We lost three good friends, Patrick, Peter and Gordon in similar circumstances last year, all too soon, all denied a good run at the treatments available.
I am a Quaker by conviction, although I do not actively worship… but I firmly believe that there is 'that of God' in every person… and it is to 'that of God' in your Dad that I extend a loving prayer tonight. I did not know him and I do not know you but I feel as close as close can be to both of you at this moment…
I offer you my condolences and my love and I hope that you and your family will be comforted by the memories of your Dad and that those memories will sustain you and carry you through to a time when the tears and overwhelming sense of loss fades and the mention of his name automatically brings you closer to fond smiles and even laughter.
Regards and love :-).
Dai.
Thank you Tom & David… it's good to know that you are behind me and I hope it stays that way for all of us for a good while to come.:-)
My shoulder is easing each day… I'd say it is about 70% better than at its worst point last week. Continual pain is wearing, it drains you physically and mentally… but knowing that the pain has settled from a constant into a gripe if I stretch.. well, it's good.
It is also good news because it means that the Revlimid is doing its job… I have noticed that my ribs don't feel so tender either… three more days and then a rest week from Revlimid and I am feeling better with each passing day, so let's hope for the same sort of bloods readings a week on Monday and then onto Cycle 2.
[b]Onwards and Upwards[/b] and [b]Vasbyting[/b] negative thoughts whilst remaining determined to do [b]'Whatever It Takes'.[/b]
Dai. (Chirpier than I have been for several weeks).8-) 🙂
From the beginning I had a mantra that carried me through my frontline treatment, harvest and SCT… [b]'Whatever It Takes'[/b]… I still hold fast to that mantra although these days it is more than often a softly spoken reminder, rather than a defiance spat through gritted teeth.
Tom's has been [b]'Onwards And Upwards'[/b], David's South African [b]'Vasbyte'[/b] (Bite Hard)… mantra's all, that drive us forward and give us something to hold fast to when treatments and procedures do their worse. Mantras, mindsets, ideas, ideals, objectives… we can all find a word, a saying or something to aim for that helps at the time. In truth we have little choice but to carry it on and see it through but [b]'Whatever It Takes'[/b] worked for me… big-time and I still feel Tom and David's rally calls each time I see them. 😎
The best of luck with all your treatments and procedures Andy, may all your setbacks be small and each of your triumphs literally life affirming.8-) 🙂
Regards 🙂
Dai.
Hi Pete,
Thank you for the excellent breakdown of your Dad's disease… but unfortunately this site is concerned with Multiple Myeloma and its related diseases and procedures. I do know of your Dad;s disease but I have never seen anything related on here in the past three years. I would ring the site admin – clinical nurses included for best reference to your Dad's disease.
Regards
Dai.
Hi Tina,
I have been there, re: back, spinal tumour, so I have great sympathy… but IMHO the medics have got it right. I had several high doses of radiotherapy a year before I was diagnosed with mm and stlll, a year later my stem cells had not recovered and I struggled to raise 2.1 million cells after 5 intensive, expensively boosted days in harvest. My SCT failed after only 10 months… of which I firmly put the blame on sub-standard, immature stem cells.
So the wait for harvest before radiotherapy makes sense… although I really do appreciate your concern and desperation for relief.:-|
Dai.
Thanks Paul,
As always I'll keep in touch with progression for those that follow behind… and that list has grown an awful lot in the past three years.:-D Unfortunately.:-(
Dai.
Hi Bridget & Andy,
My shoulder is improving daily, so I am assuming that the Rev is doing its work. Now the the sharp pain has gone I have been left with a dull ache that pulls if I stretch out and up – so I try not to.;-)
Yesterday was a real boost… very, very early days but the indication is that I am tolerating the treatment with no adverse trends in my bloods… and that, if it continues, is all I need to make a good relationship with my drugs. If all goes well I could be looking at up to 30 monthly cycles or so. Even if it is shorter (20+ Cycles) then Carfilzomib may well be on offer… and that is an 18 month treatment that actively knocks mm backwards… allowing Rev (if still holding its own) to extend its benefits along with and beyond Carfilzomib… so there is hope and it all depends on taking to my current treatment.8-) 🙂
Dai.
Hi Tina,
What exactly is your treatment plan? Is this your initial frontline treatment and have they mooted radiotherapy for your spine tumour?
Dai.
Hi Bridget,
You make me happy when skies are grey :-D. What a difference a few days of sunshine makes… I am hoping for a balmy, sunny, comfortable summer… for me, for you, for London and the olympics and for all those people who cannot get out and about and whose world revolves outside their window… seeing good weather is almost (but not quite) as good as feeling it.
I had a couple of small glasses of wine at Xmas but hardly anything at all last year and nothing this year whatsoever. I too am on daily, time released morphine (60mg x 2) but, for me, it is simply a case of not missing it.
Don't get me wrong, I love wine and I was both a member of CAMRA as well as an award winning, real-ale landlord… but it is no longer an important factor in my life… plain and simple… no plaudits wanted or needed, just a matter of fact. I think it helps that Janet has never been a lover of alcohol… in her case it just makes her ill… one glass of wine or a G&T at a social gathering and she is fine… she carries her glass around as an accessory… but two glasses and she is tipsy, three and she is genuinely ill… so t makes it very easy for me.:-)
I hope you and yours get through the winter and into spring with a little more warmth and direction than right now.
Much love xxx
Dai.
Hi Eve & Slim,
Time and distance… two strange phenomena. Last year must seem like a million miles away for you both… what with bloods and readings that contradicted each other, seemingly getting better but actually getting nowhere and Slim having to put up with strange and painful ways of measuring his mm…
…but here you are on the cusp of his SCT… its actually happening and he is firmly back on track.8-)
I really am as pleased as Punch… and all I can say is 'That's The Way To Do It!":-D
My best wishes, prayers and thoughts positive are with you both all the way.:-)
Dai.
