Ah, tell me more Tom… about the Trent work, it sounds interesting… are you anywhere near the Nottingham stretch?
Dai.
'Should get all you musicians together to cut/burn a record…Tom'.
Its something that has played on my mind for some time Tom.. the possibility of a fundraiser/awareness raiser… with performances by MM patients and a few well chosen presenters and guest musicians… recorded 'Live' and the concert put out on CD/MP3's from this site and selected stores (especially a certain online store).
Not so long ago I would have done this at a drop of the hat… but… actually… no excuses really… perhaps I should just start a few enquiries and trust to feeling well enough to see it through… its the very least I can do.. even a relatively small event could still produce an excellent album… with the right producers aboard.
Hmmm… now where is that little black book?8-) 🙂 :'-(
Dai.
After re-reading Pat's argument I have something to offer.
Personally I'd love to have the option of another SCT (the benefits, not the process) but I only scraped enough SC's for the one shot and for myriad reasons I got 10 months, not the hoped for 2/3 years… but hey! It took five days on the combine harvester and two midnight visits back to the hospital for a couple of shots of Pleriaxafor (thank you Prof… an expensive try) and between it all I just about scraped 2.1 million from the whole caboodle and caboosh. The record number of bags to return SC's for the centre at City Hospital, Nottingham was 8 when I entered for my SCT… so imagine my surprise when they turned up with 14 of the blighters… each one looking sallow and shallow and swimming in preservatives that looked stronger than the SC's they were drowning. Apparently the aggressive radiotherapy I had received over the previous 12 months greatly reduced the available SC's… apparently they don't like it much.:-)
So although I had shown a remarkably good response to CDT IMHO the whole SCT was doomed, doomed I tell you, right from the start… I can't see how they could stick with so much other stuff trying to evaporate at the same time. I know I had a lot of interest from the medics who were (I found out later) amazed at the 14 bags over 3 days trick. 😀
I say this because I believe that in hindsight I should have stuck to my guns and not had my SCT (including the harvest) until my CDT remission failed (I was on 6 months and still absolutely clear when I entered for my SCT). Who knows how long that would have lasted? Perhaps another 6 months… or possibly more? I have been told that my SC count would most definitely have improved the further I got away from the radiotherapy experience… so, as I say, who knows?
I put these possibilities forward because I am getting more and more convinced that we are being 'guided' by NICE ground-rules… that has a treatment plan based on available funding for certain treatments at a certain stage, a 'one cap fits all' policy that has the implied threat that those treatments may not be available further down the road if their 'planned' maintenance is not followed… i.e. the individual, through their centre, would have to apply for the funding with no guarantees or 'gimme's' allowed.
Knowing what I know now I would ask for a personalised plan, based on responses to treatment with a pre-treatment regime of tests to gauge what might or might not work and at what dosage… which would cost consultancy time and local lab time rather than NICE funding. So, reduced and subQ Velcade, same Dex and possibly low Thalidomide just might be a package that not only suits but extends and prolongs the remission time with far less side-effects. After that another regime of CDT might well work for another good stretch (it did the first time, so why not?) And then Revlimid, Bendamustine, Palomolide and the kitchen synched etc.
Yes, I'm rambling (not ranting) but I can hear the frustration from our own UK MM specialist with regard to being, more or less, forced to put the finances before the personal plan. We are constantly told that MM is a very individual disease… and yet we get a one-stop, 1-2-3 step approach to treatments. The medics at the clinical trial hospitals do try to shape and stretch this individuality approach and I am fortunate to attend one and may yet reap those benefits… but IMHO it should be a level playing field for all, not a postcode lottery.:-|
Political will, a champion or two in Parliament and the House of Lords and, who knows, patient power may all it takes to introduce the requisite policies and sky-blue thinking needed to change the way we approach treatments.
Just saying.:-)
Dai.
Ta Jo,
I treated Janet to a romantic lunch after the V show. A New Orlean's Special Mac Meal and strawberry milkshakes for two – took them to Holme Pierrepont Water Sports Centre and faced the river Trent. Janet took half a loaf and we fed the ducks… and then we were entertained when a couple of magpies raided the party only to be driven off by some sort of Plover… didn't stay for lunch, just drove the magpies away and then went… I was amused to think that the ducks pay for protection. 😀
Oh, and in the middle of it all a squirrel appeared and feasted on the floor, impervious to everything and everyone around him. 🙂
Romance, action and a surprisingly very tasty meal. 😎
Dai.
Well, that was the week that was, that was. 🙂
Had my 4th and final VJab of this, the 2nd Cycle… one dose of Dex tomorrow, a few down days and then hopefully a week of building up and feeling good. 😀 😎
I'm back for the 3rd Cycle on Monday, 20th June… with a consultant's meeting first, where I will hear of any interim results. I am hoping to see some positive reduction that indicates a nose dive towards 'Complete Response'. My consultant has told me that if/when we achieve CR she will authorise another 2 Cycles as top up/beat down.8-)
No chicken's being counted here and no holding in of breath… but my body is exuding a susurrus of quiet confidence… 😉
What else is there amongst such uncertainty? 🙂
Dai.
When is Peter's SCT scheduled Min?
Dai.
Good luck with the Hip (H)op for Gordon Sarah. It is a double whammy but if he has Bridget's good fortune it could be a blessing in disguise (they do have some good disguises tho.:-)
Dai.
Thanks Sarah,
The dex does help (Dex free day today) but this has been my worst week for being wiped-out so far). Still, one more V tomorrow and then the free week to get me to the end of Cycle 2. I am hoping for some interim results then… and if it is proving to be working then bring it on – and I'll drag my sorry a**** through as many cycles as it takes to get me fit and free from MM for a while.8-)
Dai – not quite Tigger yet but striving.:-)
Hi John,
I too am a guitarist (see the Off Topic for some of my songs) and I dread my current Velcade treatment giving me PN in my hands – playing and singing keeps me sane. Of course only the medics can ease your fears but by the way you describe you condition (especially how it eases after use) it sounds suspiciously like tendonitis to me.
Hopefully.8-)
Dai.
Hi Vicki,
Your Dad seems to be following a similar path to mine – excepting it took them a year to work out what was wrong (they treated me for secondary bone cancer, primary unknown and it took a move from Pembrokeshire to Nottingham to get the prognosis) :-S
I had bad back problems and to be fair to the Welsh side they soon sorted that out with 6 sessions of radiotherapy that removed a crushed vertebrae and got me walking. Nottingham was like moving to a different world… they made my diagnosis within 10 days and I started on CDT within a further fortnight following joint consultations with oncologist, haematologist and lead nurse. I have Bence-Jones Myeloma, light chain driven, that records your kappa light chains rather than your paraproteins of which I have none. My light chains were at 3,500 (very high) but I was down to negligible after 2 cycles and clear after 3 – they gave me a 4th for luck.:-)
It is frightening at first but as with all things you gain a measure of perspective and like your Dad my initial thoughts were of imminent fatality but 3 years later I am still here, on Velcade after a disappointing SCT which the medics thought might last a good few years (I got 10 months but I have a lot of bone damage and they found it very, very difficult to scrape up enough stem cells to to the overload of radiotherapy which the stem cells don't much like) – so I consider myself unlucky with that but It seems I do respond well to the standard treatment so my hope lies in that direction.8-)
Yes, MM is incurable… but it is treatable and newer and better treatments are becoming available through trials, licensing and funding even as we speak. They knock it back, wait and repeat, for as long as they can and you only need to find one treatment that gives you a good chink of remission to push your survival goals further up the field.8-)
I am scared… but I am not frightened. Trust the medics, follow their advice, surround yourself with positives and kick any negative behaviours out of the front door… wherever they come from… I truly believe negativity to be the biggest poison going.
You have a wonderful bunch of people here who will advise, reflect, respect and inspire… there are always a few just ahead of you, some who have travelled a long, long way and sooner than you think you may find yourself talking to someone as I am talking to you now – as a carer with a surviving parent who is following the path as cheerfully and as fit as possibly can be given the rotten luck of the draw,
All the very best and welcome.:-)
Dai.
Hi Gill,
I am sorry that Stephen is having it so rough this time… what current treatment is he receiving for his [b]ilnesses[/b]. I presume he is in for his 2nd SCT so I hope that he at least matches the last remission. Please keep in touch, I'm rooting and tooting for the both of you big time.
Much love xxx
Dai.
The very best of luck and a following wind to boot Ian. Stay in touch if you can, not something I am at all familiar with and I for one would be very interested in hearing of the process first hand.:-)
Dai.
Hi Jo,
If the treatment truly is working then the side effects can enjoy their field days with immunity from my tongue for ever. There are side-effects and side-effects of course and if the medics have got something they can give to ease, unblock, block, badger or blast away then gimmee and gimmee now, lots of it, big spoonfuls, ladles, that wooden spoon I saw once at a country fair somewhere oop north, I forget where but it was a girt big spoon… as a matter of fact I'll have it converted with a girt big tiny one at 'tother end, lke those given with Oramorph (I always use the big-end, just in case mark you so the small end will be for balance and show only).
But the genuine side-effects, the ones that show that the poison is hitting its mark, blocking the cells and making their poisonous little minds explode… I'll take them and I'll laugh in their face and say 'do your worst you turgid wastes of space, I'm not afraid of you, go on, out in the garden now, puttem up, puttem up'.
Dexed? yep. Feeling better, much. Jumping out of bed and laughing at he world? Nope, not yet… but if you don't mind I'll stay where I'm comfortable, trust in the meds and enjoy a little giggle at my own expense 🙂
Much love all.
Dai.
Morning Bridget,
I still feel wiped out but in a sort of 'wiped out but with it' sort of way… which is rather nice compared to the last few days. 🙂
Dexed up, so anything's possible.8-)
Dai.
Thanks Bridget and Min,
You know its true about the everyday things re: Consultants and GP's. I am given checklists to monitor all sorts of aches, pains and general condition but who monitors them? I was started on Velcade and then given a 6 week consultancy appointment… I would like to think that someone pores over the results and bloods etc but I don't know when… or who. When I had the one bad PN attack after week 1 the only person available to discuss it with was my lead nurse… who suggested upping my gabapentin levels with my GP???. I have also had this CT scan without any indication of who or when re: the results.
I do have these Q's for my lead nurse on Thursday (end of Cycle 2) because I would like an update. I thought an update after 2 cycles would be reasonable… but who monitors the houses inbetween… so to speak?
Dai.
