Hi Keith,
The home bit threw me… rather you than me was my first reaction. Not because of any hygiene or general health issues, I am sure that you have everything covered in that respect… I was thinking more along the lines of being left alone to get on with it. Still, I can see the benefits of being surrounded by familiar things… and home cooking… its nice to say no to something you may have eaten if you felt like it… not an option you get in hospital.:-)
My very best wishes for an uncomplicated, uneventful, dull and boring couple of weeks Keith… then second gear and away.8-)
Dai.
Hi Ivan,
I think I will be the third person to raise the matter of going to work in such a variable environment re: people and bugs and germs etcetera… perhaps it might be judicious to ring your bleep holder (if you have one) or your lead nurse or failing that anyone at the centre where you attend for your MM matters.
I really would seek that advice if I was you… and on that note i am sure that most experienced people on this board would, if they were you, avoid an airport like the plague… no pun intended… but it is a good one… and a pity to waste it. 😀
Dai.
Okay – Blog On!
I have my consult on Monday, previous to starting my next cycle of Velcade = Cycle 5. Cycle 4 slipped by almost unnoticed due to the kerfuffle with my left pin but overall it was a very good cycle… by far the best regarding side-effects… its just a matter of seeing if the reduction in strength (Velcade – from 2.1 to 1.49) has actually produced any results in terms of downward shift.
Start of treatment 264 kappa light chains.
Cycle 1 (Velcade 2.79) – no results recorded
Cycle 2 (Velcade 2.79) – 13 kappa light chains
Cycle 3 (Velcade 2.10) – 11 kappa light chains
Cycle 4 (Velcade 1.49) – to be declared
The reduction between Cycles 2 to 3 was due to Peripheral Neuropathy in my hands and an increase in the existing PN in my feet and calves. Cycle 3 was most unpleasant throughout and ended up with a weeks stay in hospital with an unknown infection. A further reduction was made for Cycle 4 and caused no problems – my consultant was adamant that the problems with my leg were not MM related and I concur – after the best part of 3 weeks in bed during Cycle 3 followed by a fourth week in bed in hospital I cannot believe that my legs… and my left leg in particular, were not affected. If my leg had been anywhere near normal – I cannot walk that far even at the best of times… although I do so without the aid of sticks etc. 😎
Anyway… back to the Velcade Blog. My consultant said last time that if my problems continued following Cycle 4 then she might have to stop treatment or possibly reduce it to 1 injection per week… but Cycle 4 was a success regarding quality of life and side-effects… its just a matter of seeing if the strength of the infusion is strong enough to reduce my kappa light chains from their present level of 11.
264 to 13 was miraculous – 13 to 11 was rather measly considering but my consultant said that 18 was the magic marker in terms of what constitutes 'Complete Response' and therefore 13 to 11 was quite good. 😉
So her plan (which I endorse) is for me to see out the 8 Cycles… or continuing for as long as there is a reduction in kappa light chains. For me, as long as it brings it down by 1 or 2 each time I will be very happy. That makes 4 more Cycles… if there is a median of 1.5 reduction each time i will finish my course of Velcade on 5 kappa light chains… but that/this is all supposition. 😛
I could ostensibly reduce my kappa light chains to 0… or they might plateau… in which case I believe my consultant will call it a day. Either way I will then I will be sent out into the world to live a drug free existence until the kappa light chains start growing again. I don't know what others have been told in regard to possible lengths of remission but at the beginning of my treatment my consultant said that once i had achieved CR I could get between 6 months to a year. My first reaction was the thought of 8 Cycles (24 weeks) of unpleasantness for the same amount of relative good health… but I'll take it… and then I'll move on.8-) 🙂
On a personal note – I have wavered this summer under Velcade – negativity has raised its head and it has been very, very easy to give into negative vibes without realising it… but thankfully I have a good group of friends… friends akin to family… right here on this board and they have kept a watchful eye on me and given me food for thought when my mind was tired and hungry for positivity and even a small kick up the backside when I needed it most (thank you Eve) and I now truly feel back on top of my game and ready for whatever, whenever, wherever. As the song says:
'I?m going to drift away, waving at shadows of Angels
I?m going to bippetty bop, to the end of each day
I?m going to shimmy and shape myself feathers of Angel wings
Find myself a hill? run, stretch and then fly away'
But I hope that I am many, many months and many, many air-miles away from having to search for my hill yet. 😎
Dai.
Hi Gill and you too Sue,
I came away with another course of 'Enoxaparin': (self-administered – into your tummy – blood thinning injections for those who do not know) a 7-day course this time against a 5-day course previous. That's all they had to offer because the Doppler gang insist that they are full to the gills with patients waiting to be doppled (I read somewhere that all new patients are automatically doppled on admission… if this is true it would account for lack of Dopple Guns and Dopple Gunslingers)
Still, I was supposed to be 'Urgent' -Priority Investigation'… I sawed it with my very own eyeballs… written in blue and white. My appointment is still on for the 10th August 10:30am… urgent… priority 😎 .
Saying all that my leg is easing. It is not so extended or swollen or stiff. My ankle is still swollen(although it has reduced from a cankle… ask bridget… to an ankle… just not a particularly pretty one. Legs together the left one is about 25/30% larger than the right… down from 125% and I can now walk around on it… not far and its not that comfortable… but I can walk. So as well as thinning my blood the enoxaparin has a useful side-effect of reducing the bloated bits.
Consult on Monday… so watch this space.
Dai.
If I recall correctly Amelie you are a friend and work colleague of Johns.
Does he live alone or does he have support network at home.
I was wondering because if he is single then there is a chance that he will be attending these consult meetings on his own… if this is the case could you not offer to attend… as a friend, to take notes and offer general support?
Dai.
The thing is we never know, perhaps we will never, ever know just how important we all are to other people on this site.
Life experience has taught me that sometimes the most irritating off the wall comment or observation perceived by most of us… can speak clearly, concisely and directly to someone else…
There are certain people here that comfort me beyond measure… there are people here that literally light up my life when I see them happy and/or positive about something in their lives.
I love this board… and the respect, admiration and comradeship I feel for its contributors is parallel to and in some cases a good measure beyond most of my friends and family… as a matter of fact I am proud to declare that you are all an extension of my family.. with all that that brings. xxx
Dai.
Hi Helen,
Have you a date for induction into your SCT? Where are you going for it? 🙂
Try and stay in touch if you feel up to it… quite a few people have tried to keep some sort of blog of their experience… for some reason my blog centred around a series of measured events (e.g. the time it took to get out of bed, unplug and make safe the drip, travel the distance to the en-suite and clock stop as you sit down.) I called my events my 'Stem Cell Olympics' and celebrated each time I set a new record. I'd like to blame the medications but in truth I just set myself goals to distract my mind from the boredom of feeling so grotty. 😛
Gill kept a blog of Stephen's SCT that was far more practical – we held onto it and bumped it forward on the old site – it was a succinct and useful account, full of good tips and resolutions to familiar problems.8-)
Good luck with it… whatever shape, form or adventure it takes.:-)
Dai.
Sarah,
I am imagining Gordon bringing the harvest home.
I have a small; old black and white photograph of my Grandmother?s Uncle Morris? my Great, Great Uncle. In the photograph he is standing, all five foot one of him, with one foot raised and resting on an upturned log. He has a leather tankard in one hand, stretched out before him, in the other he has a large earthenware flagon, his index finger is looped through the earthenware ring on the neck of the flagon and he is obviously about to pour. The scene is set in the yard in front of ?Pen Y Mynydd? (The Mountain Top) our former ancient and diminutive Pembrokeshire hillside farm? I recognize the setting? I know it and love it still… with an undiminished passion.
In the photograph Morris is surrounded by a dozen or so people? the only face I recognize belongs to Morris? wife, my Great, Great Aunt Minnie? all of their faces are alight with joy as they stand in various poses of merriment… witnessing the act of celebration. There is one unknown woman in particular who has her hands clasped together as if in prayer, her eyes are open wide and even in a small, black and white photograph her zeal and joy is infectious.
On the back of the photograph there is a brief inscription, surprisingly written in English, in faded pencil by a bold but fine hand.
?All is safely gathered in?.
God bless you both xxx.
Dai.
As a side-effect of the side-effects I also have put on weight – nearly a stone and a half since Xmas.
This has surprised me as, with some exceptions, we usually eat a balanced, healthy diet and our portions are small with no 'seconds'.
Of course my activity has been curtailed by treatment this summer and there is far too much sitting around doing little to nothing at all – and being a writer my work hardly requires much physical effort.
Ahhhhhhhhh… the heavens have finally broke… after several rumblings of thunder this afternoon the big clap has sounded and it is absolutely pouring with rain.
😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎
I might be getting fat but at least I'll do it looking and feeling cool.
😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎 😎
Dai.
Bridget!
Your post was not at all silly…. it was inspirational… Janet is very pleased for you and she says that it is a matter of 'as well as', not 'instead of'… she wants plusses and proud moments for us all… and so do I.
Enjoy your freedom.8-)
Dai.
Picnics! Movies? Derbyshire???? (I am envious of the last to be sure).
Perfect timing… that means mephalan and stem cells returned before the week-end when everything quietens down and you can get on with the onerous duty of having nothing to report but us chickens.
Good luck with all of it Jet and I truly hope that I can look back on your blog and say that it was the most uneventful and boring report that I have ever seen or heard.
Truly.8-)
Dai.
Hi Amelie,
It has been good not hearing from you. 😀
The consultant has raised the point of the m components but if he did it in context i.e. the figures are x but everything else is fine then perhaps all s/he is doing is noting that here is a presence but nothing out of the ordinary. The next meeting will tell all – whether the m component stays the same or rises within acceptable parameters etc… as long as everything else stays the same. John was there… did the consultant question him on anything? Are you sure there was no figure given?
My SCT failed after 10 months but they monitored the rise over 3 consults before declaring remission over… and figures were mentioned and monitored and ceilings were set. From what you say it seems as if John is a long way from being treated as suspect yet.
Dai.
I'm not going to rain on your parade Bridget… suffice to say I am envious of your mobility but I couldn't wish it on a more deserving person.:-D
Enjoy yourself… skip if you are able, shuffle, trundle or just step out if you are not.:-)
Good for you, good on you… well done. xxx 😎
Dai.
Ah Sarah…
Prayers and positive everything's winging your way… with lots of love. xxx
Where are you? Home or hospital?
Dai.
Of course… it came immediately apparent as soon as I arrived in the Day-Case Unit that no-one knew or remembered why I was there. 😛
I was sent home on Thursday with a 5 day course of Enoxoparin with instruction to come back on Monday pm for bloods and further enlightenment on the leg of destiny.
Another day, another doctor another dilemma… or three.
Suffice to say I was looked after by my young Doctor and she was thorough and courteous but couldn't wangle a Doppler for love nor money… so compromises were reached, one of my consultant's consulted and I left with an upgrade to a 7 day course of Enoxoparin which will take me to my next consult next Monday and the start of Velcade Cycle 5…
Like my infection I think they are hoping that things find their own levels… that the blood thinners will sort out my leg… and at least prevent anything too nasty if it doesn't.
In the meantime I will have to grimace and take it… and hope for the best.:-S
That's all that is on offer.
Dai.
