Hi Maureen,
I was initially diagnosed with secondary bone cancer, primary unknown by my relatively small local general hospital in North Pembrokeshire. They carried out a number of tests including one for MM. The haematologist who carried out the test said that he would bet his house on it being MM as all the symptoms were those related to MM (he had never dealt with a case but his research confirmed his suspicions, The results came back and proved negative… the haematologist was genuinely surprised. A year later my consultant at Nottingham said that the hospital in Wales had carried out a medical student level error. Every initial test for MM MUST include a test for Bence Jones by the way of a 24 hour urine test, which they failed to do. 🙁
If they had then there were sufficient facilities for the hospital to carry out my treatment… how different life would have turned out to be but we will never know now. One thing is for certain… my 70% bone damage, which occurred in the first year under the consultant in Swansea (160 mile return journey for each consultancy -under him for 9 months without one single blood test etc.,) would not have occurred and my SCT Harvest would most likely have given enough cells for 2 SCT's plus the quality of life without the bone damage pain… but enough of the what ifs'… I know they don't help.;-)
I still have time to complain about my Swansea based consultant and your complaint against your GP is encouraging me to move on with mine. I did try several times with several Catch 22's that stopped progress in its tracks. Although I was looking to ensure that he could not, should no be able to do the same to any other patient by means of my complaint, perhaps it is now time for a decent no claims, no fee solicitor. we will see.:-)
Best wishes with your medical negligence complaint.:-)
Dai.
I am so glad that Keith was surrounded by family and friends and that we were represented by you and Steph Andy.
Keith was a true friend to us and I hope we continue to remember his contribution to this board (old site and new).
Farewell Keith… Da Bo Chi, rest in peace.
Dai.
Hi Nicki,
You say that Adrian and his Doctors were both positive after his first cycle of his frontline treatment… with a drop in his light chains from 327 to 37 he would have every reason to be positive. The fact that his Doctors were positive as well suggests that they were not too worried about his other problems, specifically his amyloidosis.
You also say that he was hospitalised after his amyloidosis diagnosis but before they discovered that he also had MM. That is what you need to have clarified by his Doctors in my opinion. Just how ill was he before starting treatment with his frontline chemotherapy. There are quite a few people on this board who have had treatment postponed or cancelled until further notice due to secondary problems or illnesses. The fact that they allowed Adrian to start treatment suggests that they were not overly concerned with his secondary problems. There is no doubt that his chemotherapy treatment would have an effect on Adrian… some of us get through it relatively easily but others have had a torrid time.
Q 1. Did Adrian have his 2nd Cycle? – From March 20th to April 24th suggests that he would have been due to have had his 2nd Cycle and if he did have his 2nd Cycle then what effect could that have had on his body – especially in relation to the cardiac nature of his amyloidosis.
Q 2. If he didn't have his 2nd Cycle then why not? – Was it postponed or cancelled due to illness or poor blood readings? if so then the Doctors should be able to tell you why… and if it was due to his amyloidosis, especially cardiac amyloidosis, then there might be where the problem lies.
I appreciate that you and your family will want to know the answer to these questions and I imagine that you feel a lot of pressure to come up with answers because you are a nurse… but we know it doest work like that. Adrian's death certificate will give a clue to what caused his death but a proper report from his Haematology team will go a long way towards giving you and your family some sort of peace of mind.
Adrian's light chain decrease shows that his frontline treatment was working very well and without the secondary problems, especially the cardiac nature of his amyloidosis, he may well have lived for several years. MM treatments are designed to knock back the MM several times, hopefully with 2 or 3 lengths of good remission, where more or less 'normal' life can be enjoyed. MM is a very personal disease so it is very difficult to say how long Adrian might have lived… dependant on how well he responded to the different treatments. It is the 'cardiac' nature of his amyloidosis that worries me but I am only a patient and I am only trying to look at Adrian's MM and related problems in a way that might help you formulate some questions for Adrian's Doctors so you can [i]'Try and understand what might have happened'.[/i]
I would like to extend my best wishes to you and your family and I hope that you are able to support each other through this time.
Best regards
Dai.
Hi Eve,
First things first, yes I was deeply saddened by the news of Keith's passing. One moment you are exchanging views and information about treatments, plus a few wants and needs about life away from MM and the next the news comes in that they have suspended treatment while Keith was in hospital. :-/
It was no surprise from then on in… I could only hope that they got him fit enough to go home and take it from there… but it was not to be. Taking all we do know into consideration their was no shock attached to his passing, just sadness and weariness. Scotty is going for his 2nd SCT and I wish him well… I know that his kidney problems leave him feeling very vulnerable but I am sure the medics will control that factor otherwise they would not have allowed the process to start. 🙂
That leaves me up front and personal with MM… leading the way forward, seeking out treatments that might put off the inevitable for many months rather than weeks. I will not let MM define me… I am feeling quite good physically… as good as I have felt in a long time but saying that I have felt like shit for almost a year thanks to C: Diff… but that seems to be under control with medication… at last! 😎
I go back next Monday to see what my bloods say about what happens next. I assume more Bendamustine but we will have to see. Kyprolis and Pomalyst could possibly see me through to my 60th Birthday on Xmas Eve and beyond… perhaps well into 2014 but NICE are in control of that… NICE and the rules laid down by the drugs companies (ONYX in particular) – their policies and decisions will decide when I die, not MM. Decisions could be made tomorrow that could extend my life up to 2 years… but it looks highly unlikely that they will… although I will start a personal campaign to name and shame everyone with connections to the medicines that could extend my life… including our PM who stated last year that drugs on trial could/would be made available to patients who might die otherwise… he has gone very quiet on that topic.;-)
I am feeling very good at the moment so I am hoping that the GCSF are doing me good. My Neuts were 0.53 a week last Monday and so my incarceration and avoidance of loved ones has been enforced – although saying that most of them have been suffering from a plethora of coughs, colds and associated viruses and lurgies. My son, daughter-in-law and my 2 Grandsons, Owen 2 and Ethan 2 months, were up for 6 days last week but all of them and my daughter, daughter-in-law and Grandson Matty (15), were all suffering with colds and viruses… so they imposed their own ban. My daughter Amy and her partner (life and music) Ludo, came home from a winter contract in Cape Verdi 2 weeks ago. They were home for 3 days then had to conclude business and transfer funds from Majorca (they had to be there in person to satisfy Spanish law) so they made a week's holiday out of it and they deserved it – they did a summer season in Barcelona, four days off (for the wedding) and then off to Africa for 6 months, which included flying between islands every week with one day off per week… hard work. 😛
Amy has come home for the summer season… acting as her own agent for the first time in 5 years, so as to be near to me. Amy and Ludo, under the name of 'Mellow Yellow' will gig in England until the end of October and then take it from there… I hope I don't oblige them.:-D But it will be wonderful to see so much of them this summer (allowing for colds and low Neuts etc.).
Our Plum tree went from almost bare to blossom and then a full tree full of green leaves and fruit blossom – all in 7 days, wonderful. Our garden is ready for Janet's attention and I have sharpened my secateurs in readiness. I am looking forward to light lunches and afternoon tea in the garden and I truly feel fit enough for a few light gardening duties (which includes sitting at the garden table keeping out of Janet's way while she does the heavy stuff. 😎
I bet you are sorry you asked now.
Thanks Eve. 🙂
Dai.
Congratulations Peter… good news for you and good news for us… enjoy every single day and I hope it lasts for years.8-)
Dai.
It is ironic that the notice of Keith's passing sits below the discussion of the Elephant in the room. Keith was always open about reaching the home run although he was hoping to get one more piece of time to take Sue on holiday to Cape Verde or somewhere similar but it was not to be. Keith started the Bendamustine treatment a month before me but he could not manage to get his platelets and neutrofils up to a level to allow treatment to continue. He went on to, or rather back to CDT and he was hoping that that would help… alas that was the last we heard from him and it seems that infection took him into hospital.
Keith was a good friend to many of us and it wasn't all doom and gloom. I remember him when I joined the old site, always willing to share information and offer down to earth advice. It was his down to earth approach to MM and his refusal to allow this damned disease to define him that had such a great influence to my approach to others who came behind me. Like with others that have gone before I regret not having the opportunity to meet him personally but as much as I would have liked that it was enough to meet up here and discuss, inform and generally debate the vagaries of MM.
I could not imagine life, or letting go, without Janet… it is so good to know he had someone close, someone special and therefore I am so glad that he had Sue with him to and at the end.
Dai.
Hi Clare,
My first response to your opening post was to say that while the SCT route sounds terrifying, like most things in life the actuality is far better that the imagined… and I hold to that.
Then there is another part of the big question that I did not address… that of whether to actually have the transplant or not. You have had some interesting and informed arguments put before you and I would like to add to them. :-/
Annette and Jo have shown, for different reasons but essentially they did not qualify for a SCT, that the frontline treatments such as CDT can give substantial remissions… 3.5 years in Jo's case and 3 years and counting in Annette's case. But Tracey's case is different again, she chose not to go ahead with her SCT until the first signs of relapse from her CDT treatment… and so far, so good. Which is where I come in. 😉
I looked at all the treatment options, both here and in America and I decided to follow the same path as Tracey. But… my consultant was quite bullish about the SCT route… she was adamant that it was the only way to go and when I pressed for reasons why I should not continue with the CDT until first signs of relapse she changed her tune slightly and started on the financial implications. She said that it was not just a matter of sticking with the CDT but that by not taking the SCT route now, as laid down by NICE, the funding body, I might well be refused funding further down the line. That frightened my wife and although I was still in favour of sticking with CDT seeing my wife in distress, imagining the hospital turning my SCT down due to financial reasons, I gave in and settled for the SCT. :-0
At the time I had had my SCT preparation held up over the Xmas period due to an infection in my Hickman line which needed replacing. So instead of having my SCT in early December, it was postponed until mid-March and by the time it came around I had been in CDT remission for nearly 5 months… and I felt as fit as a fiddle. 😎
I questioned the SCT route in January because I had been following the developments in America where quite a few medics were saying that the SCT route was not the be all and end all of treatments… they were not necessarily saying that SCT's were not efficacious but that there were other treatments that could be considered as being just as good without the mild trauma and long recovery of the SCT. 😐
But it is a choice to consider… try and look at all options while you form your opinion… but also try and ensure that your opinion is an informed opinion based on good medical practice and what might be best for your Mum… without being swayed by the fear factor. :-/
As for me? If I could go back yadda, yadda etc… well I'd go for the CDT route and take my chance that I wouldn't be turned down for funding when the SCT came up. Who knows… I might well have matched Jo or Annette… as it was my SCT relapsed after 10 months.
I wish you and your Mum all the best in your decision making… but I do ask that you consider the fear factor and dismiss it if you can, As I said before it is an unpleasant process but nothing like most people imagine and it might give your Mum a number of good years with a reasonable quality of life. 🙂
All the best
Dai.
[quote]His feet are numb which is completely manageable but the tenderness in the soles of his feet are the killer. The worst thing you could take away from Chris is his fitness and it is this that is the hardest thing for him to cope with.
I feel we have had no luck at all along the way, drugs not working and now not recovering well from the SCT. He absolutely hates being at home and says he feels worthless. He was a workaholic and loved his job.[/quote]
Hi Christine,
There is no doubt that the both of you have had a rough time of it since diagnosis. It may well be that Chris will find a way to return to work in the future with some sort of compromise regarding standing to do his job… perhaps a tall stool that allows for a mix of standing and sitting. The most important word in that last sentence being 'compromise'. 😐
Nearly every single person with MM has to learn to compromise with what was before and is now…some things can be reclaimed but there are some factors that simply cannot be overcome and reclaimed. Chris's PN, especially his tender soles, will make standing for hours on end a virtual impossibility but he may, as I stated earlier, be able to compromise, both on the hours worked and the manner and style of his working conditions. 🙂
At some time he will have to accept Chris pre-MM and Chris post-MM. He will be able to move forward with a positive state of mind and body once he has accepted that things will never be the same again but this doesn't mean he is 'worthless'… that is insulting to himself and to those who are willing to change almost every aspect of their lives in order to help him be the 'new Chris'. 🙂
As I see it he needs to sit down, preferably with you, and look at his skills, look at the things that up to now may have been deemed to be 'hobbies' or 'interests' and see what he feels about making them viable commercial outlets. Perhaps a room at home that can be converted into a home 'Barbershop' where customers come to him etc., – I'm just thinking aloud but Chris is the one who has to compromise and settle on a new world of work and wonder. 😎
I wish you both well in your endeavours and with dealing with the dreaded PN of MM. 🙂
Dai.
Hi Clare,
I hope someone comes along soon that will direct you to all things Barts and that you are suitably impressed.
Two things:
1. Your Mum has been blessed with an excellent return from her CDT by getting her PP's down to 5… well done her. 😎
2. The SCT process (the end bit, after the stem cells are returned) is unpleasant, no doubt. Your body is submitted to a real good scourge, leaving it totally neutropenic and without a leg of any sort to stand on… then your stem cells are returned and you have to wait for them to graft onto your bone marrow and start showing up in your blood results (done on a daily basis but we all know you have to wait awhile). Once the magical number 0.1 is achieved it's a matter of 'Glory Hallelujah' and home within a few days for a long and slow recovery. But… while it is unpleasant and you feel as weak as a new born babe, with some similar attributes, it is not and I repeat, it is not terrifying. 🙂
Unpleasant, because your appetite can be affected drastically… some people suffer with mouth problems but there are medicines that overcome this condition… as a matter of fact there are medicines for almost all scenarios connected to the SCT process and most people only have a few problems, many very few and some none at all. It sounds terrifying but like most things in life the actuality is far better that the imagined. 🙂
Now then, where's that Barts expert. 😉
Dai.
Hi Eve,
You are quite right, the Elephant interferes far too often, especially when you ate running out of options.
I think he enters the room as a baby elephant, something akin to Dumbo without the oversized ears about the time of the relapse from the first (for some of us only) SCT, That's when you take note of the treatments and options left to you. You see Velcade – Revlimid – Kitchen Sink, and start looking them up to gain knowledge not only of the process of the treatments but also and perhaps more important, how long you can expect to get from them. You start to take note of the median, the average expected length of time for each patient… Velcade very little, put there in order to stamp the MM into submission in readiness for SCT 2… as a stand alone it is not a long term viable treatment. Revlimid on the other hand, for those that take to it, can give a median of 30 months and sometimes considerably more but there is no remission as such… it works while you are on it and you are on it until you fail.
The Kitchen Sink as I call it, is whatever your consultant can come up with… Bendamustine is the usual choice because it is as old as the hills and relatively very cheap. But now there are the new generation of newly licensed treatments, starting with Kyprolis (Carfilzomib) and Pomalyst (Pomalidomide) with a few others looking to come online in 2014/15. There are a few trials for Kyprolis with a few more in the pipeline for Pomalyst but it will take the results of these trials before Europe and specifically the UK consider them fit for licensing as treatments here. So if you can't get on one of these trials in the next 12 months or so you look like having to wait until Circa 2015 for general release… if you can survive that long… I know I won't.
I am getting a bit frayed around the edges, even if I do 'look good'. I noted that Ellen posted regarding Keith earlier today… as it was to pass on the gratitude for our support from Sue and Keith but I expected the worst… and I didn't think I could take it… but I have never been a coward, so I opened the post and took note of the message, even if it is just a postponement of the inevitable for our friend Keith. In this case the elephant, a much grown version of Dumbo, had left the room and climbed inside my head. It took me quite a few hours to coax him out and back into the room where I could see him, address him and keep him in check.
Its Janet's birthday tomorrow and I am determined that tomorrow remains a MM free day, apart from a few small care issues. On Thursday she mentioned something about Easter 2014, I forget exactly what now but I said that I wouldn't be around to see whatever it was. Janet asked why not and I said without a place on the trials I would be long gone before then… my mind was fixed on Keith, until recently he was just 1 Cycle ahead of me on Bendamustine, and it was my Dex day, with the Dex helping me to blurt it out in a stark manner most unlike me. Janet looked truly shocked and I felt like a pig… but I don't know what she really expected… even though we talk about things quite openly the elephant was most certainly in the room that afternoon and he was trumpeting bad news for all he was worth,
Still, I am being positive… but that positivity is firmly embedded on a place on MUK 5, if or when it reaches Nottingham. Bendamustine is proving ever more difficult to get 2 full infusions per Cycle with the resulting slowing down of the light chain fall and all because they can't get my bloods to rise sufficiently between cycles… I am back in on Monday after a dreadful 2 weeks 'rest'… I am fully expecting them to say I need an extra week's postponement to get my Neuts up to a practical level in order to get a full treatment in at the start of Cycle 5. If so I will be demanding a course of GCSF to take home with me… unless there is news about MUK 5 in which case we will stop treatment of Bendamustine in order to qualify for the trial which determines that there is a gap between treatments.
Anyway, enough rambling for now. 🙂
Dai.
Hi Tom,
Mid-June seems far off but its only 7 or 8 weeks away… the time will fly but try to enjoy it as much as you can. The further you go along the MM path the more you will want to jam the brakes on.
There are plenty of blogs about the experience of SCT's and even some excellent recollections and SCT 101's… but unfortunately they get swallowed up and then lost in the archives somewhere. I have called for a new heading under the umbrella name of Patient Experiences… with permanent 'stickies' of all the different processes and procedures relating to MM and its treatments, including the different stages and treatment related experiences. i.e.
Frontline Treatments
SCT Preparation
Stem Cell Harvests
SCT's
SCT Recovery and Developments
Dealing With Relapses
Velcade
Revlimid
'Other' Treatments
End Of Life Procedures
The forum can update, delete, add to or introduce new headings as it seems fit but each of the above could have several examples that new members (and old) can read and use as points of reference for guidance as and when they need them… 'as well as', not 'instead of' the normal discussions and advices given on a day to day basis.
I feel that a generic heading with sub-sections along the lines of those above would be an invaluable reference point for forum users… but no one responded… not an iota. Perhaps it will happen one day and we will be richer for it… until then?
Anyway, there are quite a few people who have been through the SCT process in the past 12 months… with experiences still fresh enough to signpost and guide you through the process with good tips and advices, so I wouldn't worry about approaching your SCT blindly.
Many people sail through the process and while it is a relatively unpleasant process it is not half as bad as imagination portrays.
I wish you well and I am sure that it will come and pass before you know it. 😎
Regards
Dai.
Well that brought a smile to my lips when I needed one… 😀 😀
Now, I've got to get myself one of those. 😎
Dai.
Thanks for the tip David, I will try that approach and see if it works. 😎
Dai.
I think Keith knew that this stage was near but was hoping that there would be one last treatment that might extend his life by a few months. More than anything he wanted to be well enough for one last holiday with Sue… Cape Verde was his choice but anywhere would have done.
He started Bendamustine a Cycle ahead of me but it didn't take due to low Neutrofils and low platelets… he went onto or back to CDT and that's the last I heard.
My thoughts will be with him every day, willing him peace and comfort on his journey home.
Dai.
Hi Maureen,
I have been following Ian's progress and I am so glad that he is doing so well… but… while I can understand stopping treatment to allow Ian's body some respite by way of letting him recover from his bedsore etc., I don't understand why treatment has not continued now that the shingles have gone and he is on the mend. kappa light chains at 54 from 4000 is excellent but it is a job half done in my opinion. Another couple of cycles would most likely knock his light chains down to 0 and bring all the other important ratios into line as well. Leaving the light chains lingering just outside the normal parameters is fine if they are lining him up for a SCT… but if you don't want to go down that road, or at least not yet, then you will want his light chains hammered down into complete remission… and I don't see why this has not been offered.
Still, it's your choice and if the SCT route is definitely on then it doesn't matter.
Regards 🙂
Dai.
