This topic contains 20 replies, has 13 voices, and was last updated by 
Min 13 years, 3 months ago.
… is the inscription on Spike Milligan's headstone… but I don't mind borrowing it for a short while.:-D
I moaned and groaned all last week about how miserable and low I felt on Velcade, especially during my so called 'rest week'. Well I woke up last Saturday with a temperature of 38.8 and after 3 more of the same at 30 minute intervals I phoned the hospital and was passed on to the 'Bleep Holder' who invited me in to be 'checked out'… and they discharged me this afternoon. 🙂
Although I had their full attention and went through all the usual checks and balances, including blood cultures, chest X-Rays, ultra-sounds, 2 kinds of potent, general antibiotics (gallons of it I swear) and a blood transfusion (HG 7.5) etc., they never did find out the cause of my temperatures, which finally abated on Wednesday. I was told that I could go home on Thursday if I remained high temp free for 24 hours… but they changed their minds and settled for 48 hours 'to make sure'… which was fine by me. 😎
Janet got me home and I am grateful for a few days rest.:-) The decision was made last Monday to delay my next Velcade Cycle (4) for a week so I have my consultants meeting on Monday followed by a reduced cycle (my PN is getting considerably worse in my left leg). I'm not holding my breath, because no figures were available, but it was suggested that this next Cycle might be my last because I had reached CR – which, if true, would be marvellous. 😀
I certainly don't feel like a CR patient at the moment but given how low and ill I've been this week I'm not surprised. The backs of both my hands are blown and bruised after 5 canulas, with the 6th being inserted in the crook of my left arm – a novel arrangement for me. I had an interesting time on Tuesday morning when a blood letter failed to get blood from my right arm after two attempts so called on a junior doctor to take over… she tried the same arm 4 times, the back of my already battered right hand once, before finally getting blood from my left foot! Between the canulas and the daily blood collections my hands and arms look like multi-coloured pin cushions.:-D
But I'm home and benefitting from an extra weeks 'rest' from Velcade… Bring on Monday.8-) 🙂
Dai.
Hi Dai
There,s me thinking you had gone off on holiday and not told us,in case we were jealous 😉
Glad your back,you have been missed(a little bit).:-)
These things do not go unnoticed when are lyric and musician man goes missing without a telling us:-( as they have chucked you out,bruised and batted, but fit for duty,we hope to be hearing more of you. best wishers Eve
Hi Dai,
Your story brings memories of the many number of times Patrick was admitted with high temps, he was needle phobic and was, so the nursing staff say, thier worst nightmare to cannulise. I would suggest, if you are in a situation where you need regular cannulas to ask for a PICC line. Unfortunately Patrick had his only a week before he died but it saves so much pain and anguish and I really wish it had been done before.
PS Spike is one of my favourites…….I like the line where he was asked " what are you doing here?" and he replied "well everyone's got to be somewhere"
Tina
Gosh, Dai, you really have been through the wringer!!
Hopefully when (not if) you get the CR verdict you and Janet can start getting back to whatever passes for "normal". 😉
Eliz
XX
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Blimey Dia
And we thought you were on holiday, you have been through it lets hope this is the final fling for this horrid disease just before you get CR:-) ALL fingers and toes crossed. We are off the sunny Wales on monday for a week taking our grandson I will say hello to snowdon for you8-)
Take care and keep well
Love Jo x:-)
Hi Dai
In a positive way its good there was a reason for you being so down, but it must have been pretty rough for you with the needles. So glad they got you sorted. Everything crossed for good news on Monday.
Kay x
Hi Dai,i do hope your feeling alot better,like the others i thought you wewre on holiday too,still you were in the right place at the right time,glad to hear your home again,you just take thing easy. Best wishes Shirls 🙂
Dai
I can just picture you looking like a spotty pin cushion. Knowing what peter looked like when he was in a few weeks ago after several attempts at canulas then them wanting blood while he was hooked up to a drip. He was sick to death LOL of needles. His arms are now fully recovered just in time for the next lot.
I hope you remain temperature and germ/infection free.
Peter was asked to hop on a bike and do a 'breath' heart lung function test before his last 2bags of blood, to see what the difference was. Initialy he agreed then realised he was too week to do it so better luck next time.
Its lovely to be drug free and side effects and symptom free for a while almost feels like being normal! Hope your feeling 'normal' now and remain so.
Min
Dear Dai
I'm so sorry "you were "really" ill"! You do seem to have gone through the wars lately. Still, if the temperature and all that followed means you get a rest from the Velcade, and then are hopefully approaching the last round, it isn't all bad.
I once had a junior Doctor try about twelve times to get a canula into my arm so I sympathise with you. In the end he gave up and I went without the drip overnight. Next day the Phlebotomist got one in first time!!
Do hope the PN is improving. The guitar awaits its master!!!
Hope some really good months lie ahead for you and you manage to get the holiday everyone thought you were on while you were suffering in Hospital.
Very best wishes.
Mavis
I have no medical knowledge or training whatsoever but I cannot understand why a picc or hickman line is not fitted as a matter of course. Stephen (mm person) has had a line ever since needing regular bloods taken and medication put in. His current line is attached to his chest with 3 tubes coming out of it (no restriction to any daily task). One for drugs in, one for blood out and the third?? Can't remember. All colour coded and not uncomfortable. He has a site op dressing which is changed every couple of days and can shower etc without a problem
He has a "doughnut" tiny felt type dressing underneath the whole thing and if it should change colour it means there could be an infection and it can be checked out straight away. Clever or what?
It must be aweful to keep having to go through the -find a vein – dig a needle in – oops start again
PS Dai CR?? BRILLIANT
Thank you to all,
I am feeling considerably better today, the one fly in the ointment being the PN in my left leg which is affecting my walking… I don't believe I could drive at the moment and I'm not having that! I have managed without a stick since I finished CDT and I don't want to start now… not through side-effects from treatment I don't – so I hope that that improves somewhat when I have finished with Velcade, 😎
I have a week's holiday at home in Fishguard, Pembrokeshire from 3rd of September… a chance to meet up with some dear friends, play a gig and share a house with two of my brothers and my baby sister (and their spouses) for a week means more to me than a fortnight in the Bahamas… although I wouldn't turn my nose up at that either.:-)
I have my fingers crossed for CR Gill – it was mentioned in dispatches… but by a junior doctor who had no evidence… still, I'll know by tomorrow lunch and then, hopefully, my last cycle of Velcade,
I don't suppose they will bother with a PICC line if this is to be the last cycle of Velcade but I am surprised they didn't consider one last week when they were decimating my hands and arms… which look a right mess even now. The trouble is I must have seen a dozen doctors last week, including one of my consultants but none of them (excepting a late night registrar) more than once… so there is no chance for consistency. On the Monday night, (they woke me at 1:50am) when they were trying for the fifth cannula since Saturday morning, the night sister had a trainee nurse trying to fit one. :-0 After a couple of attempts where she confused tracking a vein with deep seam mining I gave the Sister a look which said 'enough' and she took over and got it first time… the attempt site remains my largest and most painful bruise.:-S
Hopefully tomorrow evening will find me a happy chappy, back on track and charged with positivity. 😎
Dai.
Good luck for tomorrow Dai. I'm also due to get news tomorrow as I have just finished my course. You are a brave man to persevere with Velcade. I had to give up on that after 3 months as I was too I'll to continue with it. I probably won't go for SCT if I get a choice. I think maintenance therapy sounds better for me. I do hope I get that option.
I think if I get to CR I'll take the wife for a cruise to celebrate. Never been on one before but lots of people seem to enjoy them.
All the best
Scott
Hi Dai
How did you get on yesterday? I didn't quite achieve complete response. However I did get to a "very good partial response" as the specialist put it. One of the light chain readings is at 40 while the normal range goes up to 29. However considering that when I started treatment that light chain reading was at 3,500 it's not too bad.
I had the choice yesterday of SCT or maintenance therapy. As my kidneys are knackered, I chickened out of the SCT and have gone for maintenance therapy. I really don't like the sound of SCT and all that entails. I will take my chances with maintenance therapy and see what happens next.
I hope all is good with you.
All the best
Scott
Hi Dai,
I hope you got the good news yesterday and are looking a little less like a pin cushion.
Scott I hope you got good news too, I had a wonderful cruise last year to the Far East and I always said I wouldn't do a cruise but we really enjoyed it we saw so many wonderful places and the food on the ship was amazing. I am sure tha you and your wife will enjoy it, I had booked another round the Greek Islands and Turkey in October but I have had to cancel it because of the treament. One tip make sure you get an outside cabin.
Gill
Hi Scott & Gill.
I had my consultation yesterday followed by Velcade Cycle 4/1. My Kappa Light Chains reduced from 13 to 11 and although I was slightly disappointed my consultant was happy. She explained that CR starts at 18 and goes down to 0… so both 13 and 11 are well within the technical range of CR. On hindsight I am happy because I felt so bad/ill during V3 that I half-supected that my light-chains had actually risen.
The bad news lies with my left leg – which has been causing me problems for the past few weeks. My consultant would like me to complete the 8 Cycles – to hammer home the benefits… but if my leg gets worse during Cycle 4 she says we might have to finish there – wherever 'there' is… and while that will probably still be well within the CR range it will not be in as strong a position that 8 or even 6 might produce.
My dose has been slightly reduced once more V1&2 2.77 V3 2.1 and V4 1.77 – so its a double-edged sword. The reduction might well help reduce the side-effects, especially on my left-leg but conversely the stronger dose would reduce the overall levels quicker… I hope the balance works because I do not want to finish treatment until I achieve CR 0 if I can help it… although my consultant has said that they have reduced the Velcade treatments to once a week before now, which enables the body to cope better – we will have to wait and see.
I can't complain but to get this close… I will do whatever it takes to get that bit further. 😛 🙂 😎
Dai.
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