'22/2/11— 258.458 – [b]264[/b]
15/3/11— 239.611 – [b] ?[/b]
05/4/11—- 121.425 – [b]13[/b]
31/5/11— 14.672' – [b]11[/b]
3 of my first 4 readings compared with Slim's (Mine in bold).
My consultant tells me that the measurement for CR (Complete Response) starts at 18… so we are both in the complete response zone – I have 3 more cycles to go when I return from holiday with the express idea of getting down as far as possible before stepping out into the unknown.
I don't understand how slim is showing increased myeloma in his bone marrow when the kappa light chain is the frontline measurement??? Unless there has been a sharp rise in the past 3 months of course… but surely they would have told you that. I'd be pressing for those missing numbers if I was you Eve. If the numbers have stayed the same or decreased then it doesn't make sense to me… and makes me question the validity of my readings… still.this is where a little knowledge becomes dangerous, so I'll wait to see my consultant before getting too nervous.
My results used to go to B'Ham but not for the past year or so… its all done in-house now, so I think that your hospital more than likely does not have the Freelight test facility.
Strange.
Dai.
Hi Min,
So it seems that Slim and i have exactly the same myeloma – light chain/kappa. Do they not have access to the 'Freelight' test at your hospital? My consultant started using the freelight because it is just as, if not more, accurate than the urine and/or the bone marrow biopsy… I know that each test is expensive but if they have the techniology in the lab then they can use it – if they haven't the technology then perhaps there might be a place nearby. A bone marrow each time seems like unmitigated torture to me :'-(
Does Slim have a sedative before biopsy? They don't allow biopsies by sedative for out-patients at Nottingham City Hospital… you have to be an inpatient… which is daft because I have had them before elsewhere without problem… I even had a colonoscopy by sedative a couple of years ago… an hours recovery and I was allowed home with no problems.
I'd ask about the 'Freelight' test if I was you. I'd like to think they haven't got the facility because if they have and they choose not to use it… well, my blood would boil. Mind you, blood-boiling… that's one test they haven't tried yet.:-D
Dai.
[i]Hi Dai[/i]
Hi Eve, follow me down, we'll do this in stages…
[i]Its about the Velcade,Slims on 2.3 at the moment 2 shots one Tuesday and one Friday, 9 oclock bloods then although told to come back at 1 oclock did not get jab till 3.30 .left home at 8 got back at 4.30. (screaminggggg) poor dog desperate for a leak. Will not do that again, in future 9 for bloods,then go home 5 for injection, 2 round trips 60 miles altogether,[/i]
In my experience the 'wait' only occurs for the first infusion of each cycle… days 2, 3, 4 are usually done at the time of the appointment… an hour, 2 tops. Once the pharmacy has the prescription from my consultant it doesn't change or be considered for change until the consultancy before the next cycle – I can only assume that Slim's condition means the extra biopsies and bloods mean a 'wait' each time for you… or at least until they establish some sort of control.
[i]At least Slim will have a Rest,and £73 attendance allowance will pay for petrol.[/i]
Attendance Allowance??? What's that when its at home and how do you get it???
[i]
Now to questions,Slims bone marrow is 80% affected,he is on a 3 week cycle and will be having bone marrow taken each cycle as only way to tell how myeloma is doing,bloods and urine not true reading, myeloma has advanced after 6 cycles of ctd. How do they judge your Myeloma?????[i][/i]
Ouch, poor Slim. I'm afraid that we travel different paths here because I have 'Bence Jones' or Light Chain Myeloma… my myeloma is not governed by paraproteins (Heavy Chain) but by the myeloma in my urine… up until recently I would have to bring in a 24 hour Urine test ((In a Plastic Gallon Bottle) but they now have a blood test (Freelight) which is apparently expensive but they use it and it is far more accurate than the urine AND (touching wood) apparently doesn't need confirmation of Bone Marrow.. although I will have to have one at the end of treatment. In Light Chain Myeloma you have Kappa and Lambda measurements instead of Paraproteins – you are measured by one or the other (the dominant one) in my case Kappa. I started my 1st Cycle with a reading of 246 – by the end of Cycle 2 I was down to 13 – Cycle 3 – 11 Cycle 4 – 12… apparently Velcade shows its muscles in the first 2 Cycles and then slows dramatically, so they chip away with the rest to get you as far down as possible.
This is why they have the 'cut off – money back' agreement with the company who makes it. The company reimburses the hospital for the cost of the treatment if they have not got the readings down to 50% of the starting point… and therefore the hospital will also discontinue treatment at this point if 50% is not achieved. Of course, if the discrepancy falls within certain parameters they may decide to carry on (I'd be narked if they got it down to 60% and didn't carry on… but they will take the readings into consideration I'm sure). Dr Berenson (see Jet's video link to his answers and questions session – brilliant) says that sometimes they abandon the treatment too soon as his tests have shown that some patients come good during the latter stages of treatment).
[i]Did you have any side effects after first two injections ,Slim has none,except feeling dizzy when lying on his back,so up most of night!!!![/i]
Yes, I was very ill after my first 2 cycles… but I also had a secondary tumour growing like topsy on my sternum and Velcade completely cleared it, so I'm not surprised – I could literally feel it working… alongside rib and back pain that I had not felt for over 2 years… it was worth it though. Slim's reactions are very much like cycle 3 for me, once the drug had busted the tumour it got on with the rest.
[i]Waiting on MRI scan for pain in back,would have liked cat scan as well,because no follow up on lungs, after septic pneumonia, although he has injection every day and will be on them for 6 months,now with Velcade the chance of dvt is there.so may go private for peace of mind.
Has anybody out there had these problems?[/i]
I have a dvt now and my consultant has decided not to go down the Warfarin/INR route… I assume they don't want to compromise the treatment… so I'm on daily blood-thinning injections for the mid/long term.
[i]Do not worry if you do not have time to reply enjoy your holiday and say hello to those beautiful wild wild cliffs of St. Davids.[/i]
I start my holiday on Sept 2… I'm sharing a house in Fishguard with my brother and two sisters and spouses… we are all meeting up to spend Friday night at my sister's new pub just south of Hereford and then we are travelling down in convoy the next morning… back by the 12th for Cycle 6. I will certainly raise a glass to you and Slim when I'm in Porthgain. 🙂
I don't suppose this helps much but this definitely should – here you are:
http://www.patientpower.info/video/a-leading-experts-perspective-on-myeloma-news-and-your-questions
Please pass on my regards to Slim… if there is anyway I can help, especially with processes and procedures then I most certainly will.
BTW… Nottingham is now going to treat all new Velcade patients by SubQ (subcutaneous injections, straight into the tummy.. no more cannulas and main veins.. far less intrusive and apparently far less side-effects. I am going to try and blog my way into this method when I come back (emailing my consultant in advance) so if Slim is not being treated this way ask for it!
Best wishes:-)
Dai.
Good old gallows humour. I have a bunch of old friends… good and close friends… and family… who can't abide to even talk to me, never mind make gaffes or find ways of laughing it off (which I thought most of them would do).
They are sacred stiff of their own mortality and to voice mine would mirror theirs.
I think I prefer the honesty of your clumsy but honest friend.8-)
Dai.
[b]'Accio myeloma disappearus'[/b] – that's the spell but my peripheral neuropathy is making it difficult to work it properly.
get your wands out people… flick and swish: [b]'Accio myeloma disappearus'[/b] 😎
Dai.
(We went to the Cinema on Wednesday and watched the final Harry Potter film in 3D – 9.5 out of 10)
I know the feeling Min and I fully understand Peter's position…. but he has to seize control… he has to demand a sit down with his consultant and lead nurse and list his concerns. Its no use him fighting you over his treatment… you know when to act as an intermediary concerning practical health matters and you have a clearer idea than him concerning options for processes and procedures… it seems to me that Peter gives into them a little too easily at times which compromises your concerns and your clarity of vision.
Perhaps you could find some time to ask Peter what he wants… alongside what you see he needs… don't get me wrong, I am sure you do it all the time but he isn't listening… not really… he needs to see that you really mean it… and that there will be little real progress in term of his needs until he faces them and asks for them in a direct and, if needs be, forceful manner.
Now look above and transcribe Min and Peter for Dai and Janet and a couple of weeks ago… that's where I/we are coming from… and while it took a while we feel that we are taking control, getting what we ask for (we were probing but we were not really asking).
Bad luck and bad timing will always be issues and Peter and I will end up in the wrong bed when we least want it… but everything else can be either under our control or under our power to know what and when to ask for… and hopefully Peter and I will have the gumption and good sense to be guided by the one person who knows what we really need… but allows us to think it was our own idea. :-0
Dai.
Thank you Roz… I missed your garden post but I like the simplicity and clean lines of japanese gardens and yours looks very similar… a rake and some weedkiller and you are away. 🙂
Hi Bridget… I was amazed at myself by how easily pleased I was. Janet stopped off at a petrol station mini-supermarket and I bought smoked cheese, sausages and bacon. Janet whistled up sausages, bacon, eggs and beans with some crusty white bread and real butter for lunch and i enjoyed it hugely.:-D More sausage and some of the cheese plus sun dried tomatoes and feta with salad for today… bliss Oh, and a small bottle of cloudy ginger beer which i forgot to drink yesterday.
I find that when life is simple that life is good… especially when it is in my power to make it and keep it simple. I just have to climb out of my head and allow my body to dictate my needs.
Simples… as I think they say.:-)
Dai.
Come the time and I'll be their Huckleberry!
I have only ever tried drugs the one time… I was a mature student (about 23) and I shared a room with a London Brickie and Poet (one and the same person). He was into cannabis and knew his stuff… I preferred 'Bonnington's and Robinson's Bitter… I have never smoked cigarettes, not then or now… although there was a phase/fad of 6 months or so at University when I occasionally smoked scented tobacco from an old Meerschaum pipe…
Anyway… my friend Alan – who is now a Monk in Thailand (another story) baked a batch of Fairy Cakes with an added extra. I ate 2 before going down to the student's bar where I had about 4 pints of bitter… I slept like a baby and never tried them again (Alan said they were wasted on me because all I did was sit there and smile and then went back to my room and slept).
But Ecstasy? Modify it a little and bung it my way – now that's what I would call a clinical trial. 😎 🙂
Dai.
Me? I'm lost for words at the moment… I feel close to him but more later.
Lots of love to you and yours. xxx
Dai.
I would recommend backing off a tad on the Oramorph at night Bridget… but I'm so intrigued by your dreams that I think I'll actually encourage you… and trying upping a couple of mls to see what occurs. 😎
Good morning Gaye… four days of good weather forecast for the east Midlands…. that should please all the farmers around here (ratio 8 farmers for every other person)… I hope that it extends down to you – in a South facing garden.
By the way Bridget:
[b]'Bra'
To dream that you are wearing a bra, signifies support and protection. Perhaps you need to have your spirits uplifted. Alternatively, it may represent your nurturing side and maternal feelings.
To dream that you are not wearing a bra, indicates that you have no discipline or control. Alternative, it may reflect your sexual nature.'[/b]
Ahem… keep out of the garden girl… leave it to Gaye. 🙂
Dai.
Start shouting… make demands… get guarantees that Peter will receive the same level of treatment and care at home as he would in a 'best condition' ward. I recall my SCT and I would have hated to have been at home without the proper support of healthcare professionals… be they MacMillan or the District Nurse team – co-ordinated by a lead nurse from the hospital.
I can appreciate how much the 'back and forth' must bug you Min and I hate the thought of a bad episode occurring at home… especially as Sods Law dictates that this 'will' happen at 3:40am on a wet Friday morning.
If it is a matter of convenience, make sure that it is convenient for you… I'd make sure that my GP knows the whole score as well.
All the best… and don't let Peter agree with everything they ask for… its you that will be doing the donkey work.
Dai.
Well I woke up tired this morning… but with a determination to remain positive and forward looking. Its all in the head I am sure but I felt very positive as we set out for the hospital and even drove for the first time in a while… it felt good and my left leg…( which was looking grotesque just over a week ago..). is looking more or less normal (though a tad larger all round than my right leg… but not by much).
I feel positive and I feel lifted… I have no doubts that the whole scenario is fragile but I am determined to make it as permanent as possible by being sensible and positive in and about all aspects of my illness and my approach to its treatment… especially to its treatment by myself… and that is what really matters.:-)
Dai.
I was in the Day-Case Unit at City Hospital, Nottingham this morning and just missed Jet leaving for home.
So that is Keith and Jet home… with Debs hopefully hot on their coat-tails… good luck on your journey's to recovery peoples… take it easy but take it… trust your instincts, listen to your body and good health. 😎 🙂
Dai.
Time out!!!
That's it… infusion No.4 of Cycle 5 complete… I now have my 10 rest days (first 4 usually grotty with a gradual build up to feeling pretty good by day 10), with platelets, neutrofils and HGB on the up towards the end…
Only this time I will not be starting Cycle 6 because it would mean a break mid-treatment for my holiday and they don't do mid-treatment breaks… which means I get my 10 days… + a week before my holiday… then a week for my holiday – giving me a total of 24 days off before starting Cycle 6.
Whoo… as our American friends are fond of saying… Hoo!.8-)
I came out of the day-Case Unit bouncing. My favourite Nurse in the whole world (my lead Nurse Jenny) is always nervous of my veins but she popped the Cannula in first time and I was in and out of Day-Case (including waiting time) in 45 minutes… a record. Everything went like clockwork, Jenny took bloods and ordered a 'Freelight' test (so I will have an update on my Myeloma counts when i get back) and I am left with time to recover, build up strength and get ready for my holiday… whoo hoo!:-D
Yeah, I know… one second whingeing and whining, another making stands against negativity (mine most of all) and then pogoing up and down because of a 3 week break… but to me it is a positive, two-steps forward move… my spirits feel lifted and if there are any set-backs between now and then (whatever they measure) then I… no says Janet… we, will deal with them.:-)
Dai.
Hi Bridget,
I am glad that the tumour is myeloma related.. and that the radiotherapy is lined up to nuke it. I am however sorry that this means the end of Revlimid as a frontline treatment… as Jo says, perhaps thalidomide on its own or in a combination as a maintenance therapy might be the way forward.
The Americans, led by Dr. Berensen (?) swear by maintenance therapies (he lectures the experts and he is anti-transplants)… his mantra is 'less is more' and advises on finding the right combination of low dose drug treatments. It is the way that I have leant since first studying the possibilities of frontline treatments for MM… I only wish that I had insisted (as was my wont) on seeing my CDT through to its conclusion instead of jumping on the SCT wagon which ultimately failed me.
I hope that your radiotherapy treatment is quick and uneventful and that a workable maintenance theraapy can be found for you soon.
Much love,
Dai.
