So far, so perfect around here. The snow remains in gardens and fields but the roads, from A to B, back-lanes and side-streets are clear.. allowing those that need to move around free access to do so while the kids of all ages can enjoy themselves rotten. 😀
No fresh fall since Sat PM.
Dai.
Saturday 6pm… the snow is creeping across the east Midlands… the Vale of Belvoir is white… a bit more icing sugar than carpet but it is due to come in a bit thicker later on. Snow is one of my guilty pleasures… I understand how troublesome it can be for so many but the sight of it falling and waking to its clean serenity is still one of the few pleasures in life that takes my breath away.
A couple of inches for a day or two… and then you can have the green and brown back for the rest of the winter.:-)
Dai.
Hi Eve,
The initial infusion of each cycle took the longest because we had to have a consultancy where the level of treatment was determined. On those days a typical pattern would be:
In at 10.45am for bloods followed by consultancy at 11am. We would then either get comfortable for a few hours or even pop into town for a shop and lunch – returning at 1pm. After waiting for the pharmacy to prepare and release the Velcade we would usually be called into the day case unit between 1pm and 2.30pm. Then it was a matter of getting the cannula fitted (30 minutes) and the Velcade injected (5 seconds). For the rest of the cycle it was usually turn up at 1pm and anything between 30 minutes and 1 hour 30 minutes for the Velcade to arrive from the pharmacy etc.
So I would say that there was an average per cycle as follows:
[b]Consult & Infusion 1 – 2.5 to 4 hours
Infusion 2 – 0.30 mins to 1 hour 30 minutes
Infusion 3 – 0.30 mins to 1 hour 30 minutes
Infusion 4 – 0.30 mins to 1 hour 30 minutes[/b]
All treatments carried out at Nottingham City Hospital.
Hopes this is of help.:-)
Dai.
P.S.. The introduction of subcutaneous infusions of Velcade should cut down the waiting time significantly.
Hi Nadine,
I was in a similar position to your Mum… my CDT was very successful and I went through the prelims for my SCT but developed an infection in my Hickman Line the day before my harvest was due to start which put everything back by 3 months in the end.
I questioned the SCT at that time… I felt well after the CDT and it held well and was still holding strong (6 months +) when I finally started my SCT. My SCT failed after 10 months and I still wonder just how long my CDT remission would have held out for.
I only produced enough stem cells for one SCT (I was told that the 6 sessions of radiotherapy for the tumour on my spine had depleted my stem cells) and I wonder if holding out until my CDT remission relapsed might have given my system longer to recover. The US do not put such strong faith or reliance on the SCT and their results seem to be much better than here…. it is certainly food for thought – but each to their own and I would not want to influence any else's treatment plan because of my personal doubts.
Regards 🙂
Dai.
My Dear Chrissie,
I can fully understand your feeling cheated… the rationale from the medics that MM is an individual disease is proven by the seeming inequality of prognosis treatments and outcomes. The UK funding body 'NICE', lays down the rules for treatments – i.e…
1) Frontline treatment (CDT – RCD etc.,)
2) SCT 1
3) Velcade
4) SCT 2 (for those with sufficient stem cells)
5) Revlimid
6) A. N. Other (dependant on previous treatments or current trials)
Most of us expect to get through 2 or 3 of these treatments… but some fail at the first hurdle… some struggle through the first 2 or 3 with quick relapses and others find success at each stage.
The regulars on here are a fine mix of the above… one or two have had the frontline and SCT and are still in remission a couple of years down the line… others, like me, have had 1, 2 & 3… having successful treatments but quick relapses. Then there are others like Slim & Eve who have struggles to get going… with the going being rough and disheartening… but eventually succeeding and moving on down the line.
Each of us have to deal with the hand dealt… but for you and David the hand dealt has been unkind in the extreme… not even getting to the first post. Yes, you have been cheated and I can't begin to understand or empathise with your situation. Sympathy and loving concern is all I, and others who have moved down the line, can offer. It puts my 'problems' into perspective and it makes me all the more grateful for the treatments and care offered by my medics and nurses.
God bless you… I hope you find some level of peace in the certainty that you were loved… and that David's love will stay with you for as long as you need it.
Dai.
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🙂
Dai.
Hi Eve,
Perhaps Slim has suffered from a few bouts of 'cold turkey' without realising it. I know that since being on morphine my short term memory has been shot to pieces… I dread forgetting my clexane injections but fingers crossed I haven't done so this far.:-) I collapsed at home with a pulmonary embolism once… and once is enough for me.
I think flying is out for me… as much for insurance as my condition but driving by car is a possibility. 4 hours to Portsmouth from Nottingham… a ferry to Santander or Bilbao and 5/6 hours to Barcelona. Making the trip with my brother and his wife to share the driving and Bob could be my uncle.
Now we are dependent on benefits everything has to be considered twice… a few years ago it was only a matter of when… not if or how.:-(
Dai.
Hi Eve,
Some people manage quite good health when in remission periods, some even manage to return to work and travel freely. I think it is down to the amount of bone and other damage you accrue… that and the levels and types of medication needed each day.
I have quite extensive bone damage… and while I can walk unaided my back soon seizes up after ten minutes of shopping mall stresses. Twenty minute in a coffee shop and I am good to go again… until the next seize up. I reckon I get about 400 yards to the gallon.:-)
Then there is the meds… they can make you feel lethargic, bilious, wheezy. woozy etc. What's Slim's daily intake… quite heavy I imagine.
I take morphine, gabapentin, bonefos, pyridoxine, lansaprazole and calcium… the first four twice a day with the morphine on time release. The other day I got progressively worse as the day wore on… feeling bilious, aching, disoriented and flu-like. I drove my Grandson home (we have him after school a couple of times a week) and I didn't even get out of the car at the other end, desperate to get home and into bed. Janet got me settled and reminded me to take my meds,,, I reached for the little ceramic pot I use to collate my pills… to find it already full :-0 . I had prepared my morning medications, including the stomach steadying lansaprozole, chewed my calcium tablet and left the others untouched. Its happened before (about 3 times in all over nearly four years) and I should have recognised the symptoms. Its genuine cold turkey… after one missed dose… so for me it shows the reliance of my body on the meds I take and the effect they must have on my constitution.
My youngest daughter is working in Fuerteventura for the winter (as part of a resident duo in a large resort hotel)… in April she will move to Barcelona for the summer and I would love to go and see her… but I know it is highly unlikely. My bone damage, the DVT and MM per se makes flying almost impossible but I have considered driving (Via the Santander ferry) allowing 4 days there, 4 days back as part of the adventure… but Janet is dubious. Driving down to Fishguard last autumn made my leg blow up and made the holiday far less enjoyable than it could have been,,, so Barcelona?
I have a half-baked idea about hiring a camper-van and roping in my brother and his wife… but we will see.;-)
I do hope that Slim finds some sort of equilibrium and that you manage to both get away and enjoy the whole experience. What's next for Slim treatment wise… what's the word re SCT?
Take care.:-)
Dai.
Hi Eve,
That is a good question with a very good answer. It is difficult to reduce one's philosophies into words, never mind one answer…
My own ?
The one thing that lifts me above all difficulties is the knowledge and the certainty that I was loved.
Dai.
Hi Mandy,
I'm sorry that your mum is having such a rough time at the start of treatment. Peripheral Neuropathy (PN) can be both debilitating and painful and if your Mum has been hit so bad then the medics should be looking at the possibility of another treatment regime. A couple of years ago the standard frontline treatment was CDT (Cyclophosphomide/Dexamethasone/Thalidomiide) but recently there has been a move towards several novel frontline combinations.
Velcade seems to be the worst harbinger of PN and it sounds like your Mum is intolerant. Most people with PN get Gabapentin as the staple relief drug… Gabapentin aims itself at nerve endings – where most of the effects/pain occurs.
Is your Mum computer literate? If so then get her to sign onto the board… if not then get someone to teach her… this site at this forum is all she needs by way of information and support. This board is an eclectic mix of patients and carers and has proved to be an invaluable place for support and friendship.:-)
With best regards
Dai.
Listen you lot,
I have grieved… for my father, of whom I take after in so many different ways and for my beloved Nana, who loved and understood me when so many didn't… but never for a wife or partner and I hope I never have to.
Time and condition make me the firm favourite to go first but, as Janet has said, on several occasions, you never know… and since she started saying that I worry every time she pops into town or even to our daughter's.
I want to be the first to go. Not because I am scared of being alone… as a matter of fact that would make it much easier for me… but because my lot has been drawn and I want Janet to continue to live a full and loving life.
I am not a fool… I know she will grieve sorely… and that there will always be a Dai shaped hole in her life… but I don't want her to fall into that hole… and I most certainly do not want that hole to engulf her, or make her freeze to the point where she cannot continue to live and love.
I want Janet and all those that love me, to remember, often and fondly… but I don't want to be sainted or leave them feeling dispossessed of the ability to genuinely enjoy themselves… first by moments, then minutes, hours and days… until I am a contradiction of joy and sadness but not a being that stops them from appreciating the fullness of living and all that that brings.
I am not Janet. I don't know how long it will take before some sort of equilibrium takes hold… but I have let her know that it will sadden me beyond description if she cannot move on with me beside her… walking together lightly, rather than my shadow weighing her down or holding her back as a burden of doubt, guilt and fear.
I am not prescribing for any of you… just giving a point of view from one of the favourite to go first, with the sincere hope that all of you can achieve this equilibrium sooner rather than later… safe in the knowledge that all of us MM'ers would wish the same for those left behind.
I don't want Janet to just have to pick up the pieces… although I know that that is inevitable to start with… I also want her to pick up the mantle of life… to help me to carry on living and loving through the joy and love in hers. 🙂
Dai.
Hi Gill,
I do hope that you both find next Xmas with Stephen in a position where the medics have found a treatment that is keeping mm at bay. I understand your concerns re dex and attitude etcetera… I hope that Janet never has to feel as you do now and I will certainly try to ensure that is so… but who knows?
I have said it before and I will say it again… you and Stephen were my mentors and leading lights when I first came on board and I am saddened that the disease has got such a hold on Stephen and that the man you knew is having to fight to stay focussed when the dual dangers of hard meds and fear are his constant companions.
I hope the rev kicks in and helps Stephen to cope with the dex and that any such improvement brings a little hope and joy back into your life.
With fond regards
Dai.
I got through 7 cycles of Velcade and was told I didn't need the 8th because I had been at 0 all round for 2 months…. that was October 3rd… on January 9th I was told that I had relapsed (and that my levels had started rising almost immediately).
I have heard of people getting a good remission from Velcade but it seems it only worked for me while I was on it but everyone is different… and there was someone on here recently who was 2.5 years and still going strong… lucky b*gg*r 🙂
10 months from my SCT… 6 weeks from Velcade… I hope that Rev & Dex (or R+D+Carfilzomib – if I am fortunate to be accepted on the trial) manages a little beter. 😉
Good luck…
Dai.
Thank you one and all,
Yvonne didn't suffer at the end… it seems a nice and peaceful way to go in my eyes and I would like to think that I will slip away like that. I know Yvonne knew the possibilities and I know she had started her goodbyes a good while ago.
It's not earth shattering or tragic… just very sad for all those who knew and valued her friendship… and my life will be that little bit poorer for her leaving.:-|
Dai.
Hi Amelie,
I officially relapsed 10 months into my SCT remission and 12 weeks into my Velcade remission… and both times I 'knew'… although to be fair I gave this latter a 50/50 chance. Yes there were niggles but then again there are always niggles. For me it was more my 'Goodbut' principle… i.e. I felt good… but knew that I should have been feeling so much better.
John will know… or certainly have his doubts… but he will have to trust the medics and the bloods.
Best wishes to him either way.
Dai.
