Sarah,
I can empathise… but not much that anyone says, thinks or does is going to make a lot of difference right now.
You and Gordon have got to regroup and find out what is next and best in terms of treatment… at least there seems to be more choices AND there also seems to be a willingness to revisit regimes that have worked previously AND they seem more conducive to a pick&mix policy of novel agents… not exactly gung ho… but there certainly seems to be an air of 'why not' about possible treatments… I don't know if anyone sees or feels this?
My one and only SCT failed after Xmas… although they held off telling me for another 6 weeks until it was confirmed by a further, bigger rise. I got 10 months… of which four months would count as something near 'normal' for me. I was told that because of my excellent response to CDT I was in the top 10% of responders to treatment and that I could expect something between 5 to 8 years (in total) perhaps more… I had a brilliant Xmas and was feeling in top notch condition (taking into consideration my extensive bone damage) so when my consultant broke the news (God knows why but after my bloods were taken I had an overwhelming sense of dread and almost ran out of the building at one point… Janet couldn't understand my behaviour because everything was going so well…
I was devastated… I felt cheated… all my confidence drained away into an invisible puddle on the floor and I simply didn't know where to go or what to do next… so we waited 4 weeks for the 3rd and final confirmation… which was accompanied by a secondary tumour on my sternum… relapse with knobs on.:'-(
But I am over it now… just. I am driving myself forward, desperately hanging on to the coat-tails of Velcade and trusting that it will be worth it (funnily enough, for all the talk of Velcade being a 'wonderdrug' I have never heard or seen any timescales for the length of remission gained from it? ?!!??) My consultant said '6/12' months but after the seismic failure of my SCT she was not going to take any risks with No's… and I don't blame her.
I hope that Gordon can regroup and find the requisite strength and fortitude to take him forward in a positive mood and mien… but God knows it ain't exactly easy – I just hope his medical team come up with something he can latch onto and look forward to.
In the meantime tell him to give the Yorkshire Farmers hell… (Tell him to look vague and say 'You Lancastrians sound all the same to me'.)
Much love.
Dai.
Good news Keith, great news in fact, seeing what you have been through to get there. 🙂
As you say, relax and bring it on.
Dai.
I quite often see her at City Hospital, Nottingham but not for about 4/6 weeks come to think about it. I have been attending the day case unit, yards away from the consultation rooms and where the Stem Cell Harvests are carried out… but I haven't seen her in there either. I'll keep an eye out on Monday.
Dai.
BTW folks… feeling much better today… the PN is still on the edge and I am feeling shattered… but generally feeling much better than yesterday… the idea of 10 rest days is a misnomer… you do have a rest from the treatment… but not from the side-effects. 🙂
After all this you just end up hoping that the way you feel is down to the treatment and its side-effects – and NOT MM… You hope so… common sense tells you it must be so… but… there is always a but.:-/
Roll on Monday.8-) 🙂
Dai.
That's fine Gill, I apologise if you think I was having a go – furthest thing from my mind. 😀 :-0
We have what we have an we have to deal with it… I would just like to see a bit of humanity thrown in to the mix. The medical staff have to be so careful… they can be damned for saying too little as much as saying too much… and we know that they cannot afford to get close or personal. My idea would be to make the humanity factor part of the process… taking away the personal and making it a report on the progress of the disease and its treatment… clarification of the what, where, why. when… no more, no less… but what a bonus it would be for us on the receiving end.:-)
As for posting late… sometimes I wish that I didn't post at all… especially when I let my head overrule my common sense. 🙂 :'-(
Dai.
Hi Gill,
I realise and appreciate that the medical staff cant tell you how you are going to react to treatment, everyone, as you say, reacts differently but that is the content of treatment, whereas I am talking about the procedures.
If someone had said 'this is the procedure for each cycle: a,b,c,d,e' and if you react:
i) positively or ii)negatively to any of the procedures then theses are our options.
We usually give i)blood if your levels reach (?) or platelets if they drop to (?).
If you find that you are adversely affected by i)PN ii) Cramps iii) Fatigue iv) poojuice then we can offer x.y.z.
Here are a list of numbers to ring depending on the issue.
Which I estimate would take about 10 minutes to go through… and would make you aware of the types and kinds of issues that may or may not arise… but if they do then you know who to call and the possibilities of help on offer.
Its customer care by any other name… and in my book we are certainly due it.:-)
The staff are wonderful… they work extremely hard are are very caring… but even they have to fit in to a way of working and if the above is not on the agenda they cant offer it. 🙂
Dai.
Hi Min & Kay,
Thanks for replying an supporting… I am sat at my desk recording and mixing and it has brought me out of myself.8-) I have my laptop on my bedside swing-over table and my desk in the corner of the room… so I haven't got far to go but it does make the difference mentally… even lying on top of the bed makes me feel less able.
I always ask for my print-out sheet of my bloods but very time they seem surprised at the request… its a wonderful hospital in many ways but sharing or supplying basic information is not one of its strengths… not in my experience anyway.:-|
I went 2 weeks with my HG at 8.3/8.5 and they were considering blood but then it shot up to 10.3 from a Monday to a Thursday (although I felt worse) so that was that.
I have been feeling sorry for myself these past few days, the PN that threatens to go over the top has been draining but most of all it is lack of decent sleep that does me… it always has and I suppose it always will now. 🙂
I do talk to my consultant… I ask what I think are the right questions but it is obvious to me that they are as frustrated by the lack of individuality in the approach to the medicine and treatment of MM as we are… CDT – SCT – Velcade – Revlimid – Ben/Pom/Kitchen Sink seems to be the approach… at least in my case AND to be fair… if the treatment works and Velcade gets me CR and some time to ourselves then I don't suppose I will be complaining one iota. :-/
I have always set myself high standards of honesty and openness in communication and I get upset when systems and institutions don't seem to find it either helpful or necessary to exchange information and make things plain and simple:
1. Talk To Me
2. Tell Me What To Expect (Sit Me Down & Spell It Out)
3. Give Me The Opportunity To Ask Questions
4. Make Sure That You are Sure That I Know What Is Going On
5. Start Over
Every single company and institution in the UK seem hell bent in knowing what we think of how they do things and what we think of the level of service they are offering… except the NHS.
Anyway… as you were… I'm working and that will keep me distracted… perhaps even happy…. if I allow myself the opportunity 8-).
Dai.
Thank you Mavis… just letting loose a little but yes, my points are valid and it would not take much. BTW, thinking back I can honestly say that I have only seen one Doctor in our very, very busy Day Case Unit in the last four visits… its totally run by the nurses who ratify and conduct all medical procedures without any recourse to people with d and r in front of their names. 🙂 And they do so seamlessly and efficiently too… but they are far too busy for things such as feedback and general support. :-/
I can just about play… but without any kind of finesse but the plain truth of the matter is that I have very little inclination to do so because I feel so shattered all the time.
Good grief I've got a mood on today… enough!
Into the studio and pick up the guitar… right now!
Thank you Mavis… just what I needed.8-)
Dai.
Hi Angelina,
Your project has made me more mindful of the book my children gave me to fill in… 'No hurry, when you feel like it'… well I haven't felt like it… I'm not sure why not but I haven't. Truth be told I haven't given it much thought… or at least when I have thought about it I have been content to think that there is plenty of time yet.
The questions in the book, the requests for information, choices, preferences etc., are all fine… rather good in fact.. but a tad impersonal..more like filling in a form rather than a bank of memories…
Then it came to me. Most modern PC's/Macs, desktops and laptops have a built-in camera/video recorders and most computers have a basic editing suite for video… so how about a short film as part of the memory bank? Either as a Question & Answer format… with someone (you) asking specific questions about life choices/preferences etc., – or as a reply to a set of questions typed up on a 'board'… very easy to set up and they would be a lasting record of John literally 'facing the music'.
Once he gets used to the format he could always make up a series of 'blogs' about his life.. telling his 'stories'… from childhood to meeting Mummy… births, birthdays, anniversaries etcetera, etcetera… you see what I mean. We are not talking Speilberg here… just a basic click start, record and quick edit to scrub mistakes… leaving bloopers can be optional.
Video messaging is such an easy medium… it can be done when John is feeling up to it and it would make a wonderful record to either complement or supplement memory books & photo's etc.
I have decided that this will be my preferred method of leaving my memories… just thought you might consider it too.:-)
Dai.
Ah, sarah…
Now that is a sleep pattern and way of life that I understand and relate to.:-| Life is full of gaps in the middle at the moment. :-/
Dai.
Thank you Sylvia… its good to know that the procedure has finally broken ranks in the UK.
I have mentioned elsethread that I requested subcut from my consultant at Nottingham and she said I may well get it during my treatment but nothing as yet. I have just finished Cycle 3 with a consultancy a week tomorrow followed by Cycle 4… I will bring it up next week… especially as the PN in my hands and feet are right on the edge of going over. My kappa light chains came down from 264 to13 in 2 cycles with the results of cycle 3 to follow… hopefully Complete Response (0). I will still need at least one more cycle so I will request subcut.
Like you I had an excellent CDT (Kappa light chains 3.500 to 0 in 3 cycles…. CR (full remission) in 4) but I only got 10 months from my ragamuffin SCT.
Thanks again for sharing Sylvia.
Dai.
Thanks all, its good to know its not 'just me'… not that I thought it would be mind you. >:-(
Min, you are a gem, truly… I can't help but wonder what Janet is thinking sometimes… I too am a model patient (In) and I imagine not so (Out)… I know I exasperate her at times… even when Dex is not on the menu. Janet spent the day at our Grandson's School fete yesterday… Kirstin volunteered her for 'tea' duties.. after she had baked numerous cakes, cup-cakes, macarooney whatsits and those soft crumbly ones filled with soft butter cream and coated with chocolate…. mmm… chocolate. So, anyway, she has been baking for a couple of days, does her shift at the school and then comes home with a shop bought Pizza for tea and apologises as if she is somehow letting me down… I could cry, truly.:-(
I love my carer and I hope the rest of you feel loved too… it is so easy just to carry on carrying on and forgetting to stop and say thank you… proper job. xxx
Its Sunday morning, a lovely day outside my window and I feel tired, tired, tired… I too have to sleep in a funny position Bridget… the local District Nurse got me a hospital bed within 10 days of me arriving here 2 years ago an it has been a godsend… I get a better nights sleep the further I lay back but if I stretch out too far I wake up in pain… sometimes I fall asleep sitting up and wake up a wreck… I have one of those half-tables that swings over the bed… it is crammed with 'useful' items, including my Mac laptop and jug of water etc… it never quite feels like bed, if that makes sense… but I know that if I wake I will check emails, MMUK, my songwriting site etcetera, etcetera…. I'm my own worst enemy… what am I like? :-S
I think I need a nap.8-)
Dai.
I have just completed Cycle 3 of Velcade and I pressed my consultant (one of the UK's leading lights on research and innovation) about subcut Velcade… and she told me it was coming and not to be surprised if it started while I was still on treatment.8-)
Nothing as yet though.:-(
Dai.
Hi Onlyme,
I had my SCT following an excellent response to CDT but unfortunately, for valid reasons that I can accept (reluctantly), I relapsed after only 10 months, so counted as a failure to launch.
I am now on Velcade as a tertiary treatment for a relapsing patient. I only scraped enough stem cells for one SCT and no one's mentioned any other attempts down that path… so its Velcade/Revlimid/pom-Ben- wysiwyg -ski for me. 😀
I have just completed Cycle 3 and my kappa light chains have dropped from 264 to 13 (after Cycle 2) so I'm hoping for Cycle 4 and then hopefully a bit of remission.
My Velcade experience, in terms of side-effects seems about par with the others here… fatigue and PN as the main contributors to the negative side but with, for me, very positive results so far.
There are still questions hanging over the use of novel agents as interim treatments for me… i.e. using them (Revlimid, Velcade etc.,) just to get to a point for SCT's… especially when SCT's seem to be getting less favoured as frontline treatment… I'd rather see a move towards individual treatment plans based on the patients needs and responses rather than blind trials or 1,2,3's – a,b,c's… we are constantly told that MM is an individual disease but they treat us like supermarket customers. 🙁
Its only a matter of time… and money and organisation… but I'd say that within 5 years it will be the only way.8-)
Dai.
Good luck with the Velcade Kay,
I have just finished Cycle 3 and now have a week or so off before starting Cycle 4 a week on Monday (following a consultation).
The main side-effect for me has been fatigue and exhaustion.. the smallest thing seeming to knock me off my feet… but if you are willing just to lie still, read, watch Tv etcetera then you will be fine.:-P
I had one attack of proper-job Peripheral Neuropathy following my very first jab but since then…. a little in my hands and my feet, which were already affected, have gotten worse but nothing too drastic.
The good news is that I started my treatment on 264 Kappa Light Chains (I have Bence-Jones, light-chain Myeloma and I am not affected by paraproteins… but same difference) and after just two cycles Velcade had reduced the reading to 13. I also had a secondary tumour on my sternum which was growing apace and spreading across my chest and that was dealt with within 10 days! So, it seems to be working for me.
I'll try and answer any queries about procedures etc., … just ask.:-)
Dai.
