Thank you San,
I have suffered pain, confusion and one pig of a bedsore but to come throughout it with such a reduction in my Light Chains has made it all worthwhile. Perhaps the worst sort of suffering was the constant knowledge that if my Light Chains had frozen or worse still risen, then I would have been in limbo… looking around for something else while knowing that my best chance, a chance we hadn't considered until it came up in conversation, had gone with nothing to replace it. That waiting for the Free Light Chains Test results was purgatory… absolute agony, even though I refused to allow any dark clouds to gather. 😎
But away with such thoughts… I am in a good place, much better than I ever expected while under Bendamustine and so I will take this and look forward to the next 6 to 8 months and take it from there. 😀
Dai.
Hi Tom and while you are here… Hi David,
David… can you explain to Tom your initial attempts at SC Harvest and the process and timescale of your eventual success. 😎
Cheers 🙂
Dai.
Thank you, thank you, thank you all. 😀
I hope to be on the same regime as Jo from Monday… although I will be trying to slip in a period of rest days every 2 weeks if the regime and my body can take it. 😎
It's a pity my regular consultant is away next week as she was enthusiastic about stretching the treatment out as far as possible. I don't know who I will see and knowing them all I am only sure that each of them will approach the task differently. My best hope is that my usual Consultant has left a proposed plan… ah well. bring it on. 😉
3,067 to 380 Tra, la, la. At least the numbers are on my side. 😎 😀 🙂 😎
Dai.
Hi Lindy,
First of all I would like to say I wish you were not here… but you are, so let's make the most of it.:-)
Secondly, thanks for the laugh… it was a natural lagh out loud chortle, which doesn't happen to me that often.
[quote][b](oh deal where is spell check)[/b] [/quote] 😀
Thirdly your post is an excellent example of explanation. I read through and understood exactly what you were trying to achieve: 🙂
1. The explanation of your Mum?s condition.
2. The reasons and details of the confusion over prognosis and the lack of communication between the medics, the patient and the patient?s family.
3. The continuing confusion over an available treatment (CDT), its withdrawal and what happens next.
I particularly like your statement;
[quote]Do you know something; people in this country commit the most appalling of crimes and we think it is inhumane for them to get the death penalty and yet we have the nicest, sweetest people on earth given Cancer diagnosis and for some, those who are late stage or have very malignant cases or who are very frail, it must be like staring down the barrel of a gun.[/quote]
For me it seems that you have wandered into the world of Multiple Myeloma (MM) and immediately grasped the fundamentals of our world. Well we can help you move forward by demystifying all the processes, procedures and treatments. There are people who are just a step or two ahead of you and there are others on the brink of last orders… all who will be willing to share their experiences and knowledge. 🙂
Welcome Lindy, ask away and I hope we can move you forward quickly, smoothly and gently. 😎
Dai.
Hello Pax,
It seems as though your decision to have no more treatment has been a good call, although not for all of us I am sure. :-0
I too measure my MM by light chains and while 1987 is high, it is manageable. You have been very fortunate to have no bone damage and the resulting lack of pain, which is a crucial factor in MM.
I too have never suffered from kidney malfunction although I understand that kidney damage is prevalent with MM, especially with Bence-Jones, Kappa Light-Chain MM.
Are you still under a consultant at the hospital? What have they advised? Do you work? Have you any family?
[quote][b]I have decided to have no more treatment 2yrs ago for my own reasons[/b][/quote]
To my way of thinking the 1987 Light Chain reading is irrelevant given the rest of your readings and given the rest of your circumstances they shouldn't worry you in the slightest… but there are too many unanswered questions for me to feel comfortable in making any sort of response to your query:
[quote]I have decided to have no more treatment 2yrs ago for my own reasons and was just wondering if anyone could give me any feedback on the level of light chain I have[/quote]
Still, I wish you well and I hope that you continue without any rise in your kappa light chains and that you remain pain free.
Dai.
Hi Stephen,
I remember well your first few posts on this site… and how powerfully you moved me with your statement of love for Dawn and your determination to carry on… both for Dawn's memory and for Joe and Jade, I hope your children are finding the strength to move forward and I am so glad that you are finding a few positive movements in your new job. 🙂
I wish you well 😎
Dai.
Hi All,
I am on my 10 day rest period between Cycles 2 & 3 and I grow stronger every day. If I follow the course of events as between Cycles 1 & 2 then I will virtually bounce into the clinic new Monday. Of course, for me, I will be wiped out between infusions mid-Cycles… complete with mild confusions and absolute weariness. 😛
The plan for my Velcade Adventure is to stretch the treatment out for as long as we can… but this depends on my Light Chains dropping and we won't know if this is the case until next Monday. If the Light Chains have dropped… then I will move onto a 'Once Weekly' set of infusions… stretching each Cycle out from:
[b]2 x Weekly infusions x 2 + 1 x 10 day rest period = 24 Days.
To:
! x Weekly infusions x 4 + 1 x 10 day rest period = 38 Days[/b]
I have had 2 ordinary Cycles to set me up and now, hopefully with a successful decrease of Light Chains, I will continue on the above treatment formula for the next 6 Cycles giving me…
[b]! x Weekly infusions x 4 + 1 x 10 day rest period = 38 Days x 6 = 228 Days 🙂
instead of the normal:
2 x Weekly infusions x 2 + 1 x 10 day rest period = 24 Days = 144 Days An extra 84 days.[/b]
While your treatment is aimed at remission, mine is aimed at life extension. [i][b]'Every Little Helps[/i]!' [/b]8-)
Dai.
Hi Tom,
Regarding suing, I'm a fine one to talk…
[quote]I was reading a book about someone with cancer who did go down this route and spent so much time, energy and emotion doing it, they ultimately felt it was unproductive. I fully accept that for some this is absolutely the right way to go though. [/quote]
I was in this exact position 3 years ago… [i][b]I was determined to be and stay positive in tackling the disease and after spending 6 months sourcing help and assistance in confronting the consultant who wrote on my notes (still there) 'No further investigations and no further treatment,' (I was under his care for 10 months without 1 single blood test) and then he told me, 'I will see you on my mortuary slab and still not know what killed you[/i].' [/b]
I handed all my notes over to the agency who then said, 'We cannot go ahead with this case because you live in England and the incidents occurred in Wales… we believe you have a watertight case but we do not have the procedural powers to continue'.
They suggested I approached the Welsh equivalent of their agency… I did (they were the source of my original complaint) and they said… 'We cannot go ahead with this case because you live in England and the incidents occurred in Wales… we believe you have a watertight case but we do not have the procedural powers to continue'.
[b]Catch 22.[/b]
I had to choose between chasing my case through the civil courts (or private lawyers) or concentrating on fighting the disease in a positive manner… I truly found it hard to do both because raising the case against the consultant had drained me.
Looking back I wish I had persevered because I am sure that my consultant's arrogance meant that he would continue treating people/patients with contempt… Still I am sure that it has moved on too far for me to make a difference now.
Your case is different: [quote]To sue or not to sue. I'm not really the type, I did very briefly toy with the idea but will settle for an explanation of what went wrong and assurances that protocols are in place for it not to happen again.[/quote] But I still feel that any assurances should be in writing complete with protocol directives. Then again I fully appreciative that your energies will be directed down the medical routes… making sure that you get your Stem Cell Mobilisation and collection procedures in place and ready to go.
It's complicated…
Small steps and positive movements. 😎
Dai.
Ouch Tom,
Reading that made me wince and Janet had to sit down to allow the idea to sink in.:-0
Janet's first reaction was 'Sue them', because she was angry for you… I said that there were other matters to sort out first. Janet reminded me of our adventure… different from yours because it took 5 days on the Harvester + 2 midnight returns for 'Pleriaxafor'… all of which produced a grand total of 2.1 million cells… enough for one shot. If someone had mucked that one up… so I agree with Janet and say 'Bugger them and Sue them'. :'-(
Medical and/or procedural negligence has occurred and you should be free to ask questions through a qualified 3rd Party and then you should accept guidance from your representative. 😐
[b]But 1st things 1st. [/b]
Yes, you will now have to go through stem mobilisation and collection all over again… but when? While you produced a bumper crop I imagine your body is now completely barren of Stem Cells and I also imagine that they will take quite a while to grow back… and what in the meantime? If it is a matter of a few weeks then all well and good but if it is a matter of months then what if you require treatment? :-0
Etcetera, etcetera. You will need medical support and guidance… so I hope UCHL are quick on the uptake and provide all the support and guidance you need to get through the initial stages of disappointment, frustration, anti-climax and disenchantment with their services.:-(
Sorry for banging on about your problem Tom but I'm bloody angry for you. I know that I would be livid if it were my problem but I also know that it would take quite a while for me to recover from the initial shock and frustration… and while we here can be scandalised, you are more likely to be traumatised… so lean on us as much as you need for advice, support and encouragement. 😎
'Sounding Boards R Us'. 🙂
Dai.
PS. I negotiated a 'responsible adult' agreement with Ellen last year regarding swearing… i.e. we would take responsibility for our own forum and monitor and control any excess use by users – on the understanding that if it became a frivolous or blatant practise then the moderators would step in. In this case… feel free. 😎
PPS. David (Perkymite) had a lot of trouble producing Stem Cells for collection and ultimately failed to produce enough for even 1 Transplant. He had to start over a while down the line… I am sure David will recount his mobilisation and collection problem and how he finally managed to get there in the end… including stats and timescales. 😎
Hi Eve,
I too thought that being a grumpy old man (or a fly with St Vitus's Jump) were the main drawbacks of Dexamethasone (full name now that I have resin to give the medicine added respect) but like you I have had cause to review the power and import of our friend Dex.
I entered the Day Case on Monday feeling very ill indeed, with mental problems that needed addressing immediately – I though that I was in for a hard long battle, with both my short and long term treatments needing adjustment.
Thanks to the problem solving skills of my relatively young (Welsh) Doctor, who worked out that a reduction in my 'Dex-a-Dose', rather than a reduction in my Velcade (given, I assume, that Dexamethasone is normally the agent that affects behaviour) my 'mental' problems disappeared… virtually overnight.
My 2p worth.
Dai.
Hi Maureen,
My reply was made with my tongue stuck firmly in my cheek… I know the score regarding most of Ian's conditions having been through most of them myself… I had the Occupational Therapy Survey Team come and have a look-see which culminated in several grab bars as well as non-slip door mats and the like. My bed-sores (2 – the first hardly noticeable and the 2nd only difficult because of its placement) had their status raised yesterday at the Day Case in an effort to deal with them before and while I started my 10 day rest period. 😉
I appreciate that Ian's mobility problems are more difficult than mine were… if that makes sense, I had one DVT in the Summer of 2011 & one in the Autumn of 2012… both had me hospitalised and both put my mobility back by a few months each time – the difference between me and Ian is that my mobility problems were reactionary, whereas Ian's are proactive… long-term and starting from scratch. 😛
I hope you enjoy your daughter's civil partnership Wedding in London. My daughter and her partner brought their civil Wedding forward by 18 months last October for my benefit – just in case I kicked my clogs in the interim. It was as real as real as could be and an absolutely beautiful occasion.8-) 🙂
Janet has her Bus Pass… and more importantly her train pass. She can travel the 18 miles from our rural village to Nottingham in 18 minutes for £4:00 (return) whereas it would take a journey of 18 miles from Village to Nottingham in 1 hour 30 minutes (return) with petrol costs of approx: £5:00… with 'the train taking the strain' being the main benefit. 😀
I sincerely hope that things move smoothly, for the both of you throughout the summer and that Ian is home and settled by the end of the autumn. 😎
Regards and best wishes 🙂
Dai.
The best of luck for your SCT Twm (Welsh for Tom, you are welcome to borrow it for the duration… but tom seems to work as well). 🙂
The idea of you 'gingerly' nursing your battered body home via the the 'metropolitan line' seems to me a stop too far… but I am glad that you are home safe and sound. 😎
Keep in touch over the next few weeks if you can ad we will follow you home… it will be sooner than you think. 😀
Regards
Dai.
Hi Maureen,
Instead of the nurses turning Ian in bed every 2 hours why doesn't he just get out of bed… transfer himself into his wheelchair… a lap of the bed and back and into bed via a transfer on to a chair on the opposite side, back on to the wheelchair and into bed… job done, two birds, one stone etc. 😎
Like Eve I am amazed at how long the medics are taking… have they quota's to fill? The reluctance to contact Glasgow and putting off the simple procedure of examining his bed sore makes me a tad suspicious. 😉
On a serious note I would talk to the consultant when he examines Ian's bedsore and inform him that you intend to take Ian home as soon as you are satisfied that Ian can make himself mobile by way of transfer from bed and chair to wheelchair. 😎
I appreciate that it is only speculation but I believe, as I am sure you do too, that Ian will improve in leaps and bounds by being home, surrounded by family love and familiar things… everything else can be covered in the 'Day Case Unit'. 🙂
I wish you both well in your homeward bound adventures. 😎
Dai.
Hi Eve,
I know you don't suffer fools gladly so I will take your support of the agency nurses 'Good/Bad' with a pinch of salt because looking at the processes and procedures (nothing to do with the pharmacy) I have to agree with David that your service was utterly appalling. :-/
I hope you follow David's advice and get in touch with PALS… I had a chat with one of its advisors in a hospital Coffee Shop a couple of of years ago and she said that she and her colleagues were the medical arm of Citizens Advice… and I concur. 😎
Regarding Slim's surname I think we can safely discard something along the lines of 'Ahmalak-El- Marakim' given Slims army service but I believe that a safer bet would be something akin to 'Petr Czszepanski'. :-0
I wish you both well and hope that Slim is soon feeling well enough (after your period of force feeding) to seriously enjoy some time away in the camper. 😎
Much love… 🙂
Dai.
Hi Wendy,
I am so very sorry to hear of such poor readings from one of our olympian class athletes… people like you and Tom and Tom2 are supposed to cheer us up with your super blood results and athletic achievements. 😎
Joking aside it shows how vulnerable any of us can be to this bloody disease. I have had several stays up on the ward, usually… no, always by dint of infectious invasions and while they have always found a cure by throwing the right A/B bomb they have never found the cause… regardless of myriad swabs and cultures tested along the way. I feel a tad embarrassed by my ignorance of the differentials between kappa light chains measurements: i.e. per litre – per litre/mg – per mg and what they signify in relation to the individual and the disease in general. In that case I tend to side with Tom… by letting the medics throw the bombs, watching the numbers decline and moving back onto treatment. I tend to study the big picture and leave the devil to calculate the fine detail. 😀
I really hope you feel the benefit of the A/B's as soon, as soon can be Wendy and that you find yourself out of the harsh reality of a hospital ward and into a virtual chatroom… ready to tell us of your next venture(s). 😎
Much love and regards 🙂
Dai.
