[DaiCroParticipant]

Hi Folks – this is in part a reply to Nadine about her mother's SCT options but it is also me jumping on my 'individualisation of treatments' bandwagon… so I thought it best to transfer it to 'General'.

Hi Nadine,

I have followed your thread with interest but decided not to get involved because the advice you have received is excellent and there was nothing I felt I could, or rather should, add.

But… there are a couple of things that have nagged me throughout…

1. You state that your Mum is 69… that seems to be right at the very top of the usually accepted 'cut off' point for a SCT (given the various stresses and strains of the procedure and the amount of time needed to recover – this was covered admirably and comprehensively by Mavis).

2. You haven't said where your Mum attends but there is a 'lead nurse' which suggests some sort of area of expertise – although her 'defensive' attitude could not have been very helpful. Did you or have you attended with your Mum at any time where options were discussed? I ask because while you say you have attended appointments with her (and found it hard to discuss the findings afterwards) you also say: [b]'I asked if mum had been given all info as well as other procedures that could be considered. I was told in no uncertain terms they would not have gone 'blindly' into this decision and basically mum has capacity in her choice!'[/b] Which sounds as if you were either not there at the time or that they (the options) got swallowed up in the general discussion somehow.

I ask because I am sure that the options would have been covered but… as any on here will tell you, I am hardly a shrinking violet in terms of wanting to know the 'ins & outs' of the processes and procedures of MM treatment but even I felt slightly pressured and not so sure of what 'best to do' at the end of an extraordinarily successful CDT treatment. If you have a competent and confident consultant sitting in front of you literally saying 'I now recommend that we follow this plan of action' – i.e. the SCT route… then it is/would be difficult to gainsay it.

Put it this way… in my case the SCT option was given approximately 95% prevalence/relevance – complete with an outline (followed up in detail by the lead nurse in a later meeting)… the 'other' options – raised entirely by myself – were considered, if not quite scathingly – then at least as almost irrelevant… or not worth considering unless there was a problem with 'Plan A'… the SCT.

I was not utterly convinced… my consultant, the lead nurse and my wife were… it seemed like a no-brainer… but I was not convinced.

If it had been purely down to me (which it was but I didn't see/feel that at the time) I would have held off on the SCT approach (I was 56). As far as I was concerned I had been pulled back from the brink of death by the CDT treatment (Kappa Light Chains decreased from 3,500 to 0 in 3 months and Complete Remission after 4) and I wanted to know why I could not stay in that state until the very first signs of relapse before taking up the SCT option… wanting to extend the processes and procedures for every minute that I could get. This is where it gets interesting…

However much they tried to convince me that the SCT option was a 'no brainer' as a step forward they failed to fully convince me… and then some 'facts' started to eke out.

[b]Fact 1.[/b] 'This is the way we do things here'… or words to that effect were offered up… and this from a 'Centre Of Excellence' was not to be sniffed at (and I say this without trying to sound disingenuous because it is and always will be in my eyes – my treatment and care has been second to none).

[b]Fact 2…[/b] & the 'Biggy'? The involvement of NICE.

(Here comes the 'Individualisation' bit folks :-D)

[i]The National Institute for Health and Clinical Excellence (NICE) provides guidance, sets quality standards and manages a national database to improve people's health and prevent and treat ill health [/i]

…and dictates, through financial pathways and settings, who gets what? where and when.

Yes, I could have had my preferred option of seeing out my then current remission but then I was told that there could be difficulties in gaining funding for my SCT if I delayed it at this time. I.E. CDT – SCT – Velcade – Revlimid – Kitchen Sink etc. was the accepted general route through the MM journey at that time… and the finance was 'given' for the route. Any divergence away from that route 'might' mean having to apply for the other treatments as separate financial funding packages at a later date – nobody was saying that I would not get the required funding but the implication was there… that's the way it was.

Now, as it happens… they were trying to get me through my harvest quickly in time for an 'in & out' SCT before Xmas… but my 'Hickman Line' got badly infected and leaked… and after a horrendous week of being neutropenic… it finally had to be replaced – putting the Kibosh on the 'quickie' SCT… and the whole process had to be stated again after Xmas – which meant I was still in full remission and the very best of health… when I finally went in for my SCT in March. So my CDT remission was still going strong after 5 full months… and who knows how much longer? I will never know.

Now, as it happens part 2… they had the devil of a job to get me enough stem cells to carry out my one and only SCT and for myriad reasons – including an apparent world record of 2.1million stem cells given back through 14 preservative filled bags etc., – it was doomed to failure. It took me 6 months to feel anywhere near my pre-SCT state of well being and it failed completely after 4 months of feeling 'reasonable' – 9/10 months in all.

I confess that I still wonder that if I had had my way and waited, without all the line infections, 5 months between 1st infusion of Mephalan and the GCSF harvest (instead of the week or so), the possible related problems in then getting the little blighters out (which included 5 full days on the harvester, supplemented with 2 midnight return visits for very expensive 'Plerixafor' boosting injections… etcetera, etcetera, etcetera… we will never know.

But I do wonder. Which is why I have studied extensively the problematics surrounding the idea of 'individualisation' of treatment plans for MM patients. We are told incessantly that MM is a very individual disease… affecting every patiently differently… shown very clearly by and in our responses across the board to different treatments and regimes… BUT… we all get the same regime.

Yes, things are changing with more novel agents being used in the frontline treatment (CDT now being supplemented in several trials by RDT/RCD/VCD etc.,) but it is still a regime of Frontline – SCT – Velcade – Revlimid… with the Kitchen Sink possibly being replaced by the newer novel agents of Bendamustine – Polomalide etc… which I feel is still being dictated as much by the grip of NICE as the free choices of our consultants and medics.

I read, watch and listen to the avenues and choices floating over the pond from our American cousins and I particularly interested in the movements among some of the top clinics and clinicians who no longer see the SCT route as a vital part of MM treatment… and it is these clinics and clinicians who are actively promoting the absolute necessity of 'individualisation' of treatments in the move towards turning MM from an 'incurable' to a 'chronic' disease – because these clinics and clinicians are apparently regularly reaching 10 years abatements – based on individualisation of testing and treatments, often resulting in smaller doses over longer periods etc.,.. without a SCT in sight… which I find extraordinarily interesting.

A reminder that I am due to attend a conference of clinicians and laboratory service technician at Birmingham in November… [b]Royal College of Pathologists / Association for Clinical Biochemistry[/b] – they are examining the methodology of testing and developments regarding their work in MM and the relevance and advances to be made in their research and practices that maximise individual responses to testing. I will give a short piece (just after the lunch break… so about 20 minutes I imagine) on [b]'The Patient's Perspective'[/b]… so I will be coming to you soon looking for any factors or questions that you may consider relevant. I have never leant towards science… but I can lean towards common sense and humanity and the rights of the individual in a 'supermarket' environment – and hopefully press forward some ideas of what would be useful to us as individuals. You have been warned.:-)

Good grief… I wanted an early night too. 😎

Dai.

[HelenParticipant]

Hi Dai
I hadn't read this before I answered Nadines post but you raise a point that I too deliberated on for a very long time before the sct. I was fitter the day before my sct than I have been for about 5 years, I was able to do a 5 mile walk without pain or tiredness.
I have searched the literature too and read report after report on the funding streams and gold standard treatments until I could not decide the best way forward but I have concluded that sct was my best option based on retrospective material.
We are now in a different world with myeloma, and the new data from America is based on the findings of the new drugs, for which we do not have the long term follow up results yet, it is all so new.
You and I are about the same age, i was anaemic to start with and over 50% bone marrow lost to tumour, we have light chain disease but your light chains were 3500 to start and mine only 800, we both responded to induction chemo, down to 0 in 4 months then stem cell collection, you produced low numbers mine were high. At this stage there is no saying what will happen to either of us because we do not know what our disease is going to do in the future. So we can not compare our selves, we only continue hand in hand on the journey.
Here is where I wonder about the individualisation of treatment.
We are at the cutting edge of changes in treatment, is there a difference in outcome if you delay treatment? By a few months, or years.
Is it ethical to ask patients to consider the watch and wait?
Is more aggressive disease identifiable?
Does less aggressive disease turn aggressive?
Over how long a period?

[HelenParticipant]

The site won't let me finish my previous post?
So I will continue here.
Is the disease still as much of a mystery to medics as it appears in the literature?
I do hope you get some answers at the conference Dai and I look forward to hearing how you get on with it.
Helen

[DaiCroParticipant]

Hi Helen,

The thing, for me at least, is that we do have choices and options in the direction and management of our Multiple Myeloma. But… these choices and options, the ones that will dictate our medical/clinical paths through MM, arise when we are at our most ignorant, our most vulnerable… and inevitably, our most frightened.

In those circumstances it is virtually impossible for most ordinary layman to take stock, consider all available options and then make informed choices.

This site is full of people… patients and carers, who can offer the benefits of case histories and personal experience… there are a plethora of blogs for the differing treatments, processes and procedures which have come and gone and have disappeared into the archive somewhere.

What we need is a comprehensive list of sections (including grief and counselling therapy etc.,) where these experiences, processes and procedures can be stored and accessed…

I need a longer, more dedicated thread to get my point across… but it would be a pity… a crying shame… if all our experiences, advices and blogs were lost for the sake of site organisation.

It would be much easier to advise and direct new patients if we could point them towards the 'Stickie' sections containing our collective experience and then just talk them through it…

Another time… I know what I mean.:-(

Dai.

[HelenParticipant]

Hi Dai
Yes I agree with you but have never really thought through the whole process until now, when i have reached the goal of sct and now enter the watch and wait section.
When you first get the diagnosis, the shock and the treatment options are presented to you in such a hurry and you have no real idea how to make choices, we are as you say at our most vulnerable. I know my personal choice was ' do whatever is needed to get rid of this thing as fast as possible' and I really trust my medical team who said treatment was the only option, a crucial point for me was that my anaemia would only worsen over the next few months and I would lose fitness which would make recovery from sct more difficult.
In searching the literature I am not aware of much info on patient perspectives in this disease at all, nor how each case informs another. There doesn't seem to be any recent assessment of how the disease presents in 21st century patients (this disease has been 'known' since 1850 and melphalan for treating it since 1950) also wonder if there is a 'protectionist' attitude towards us mm sufferers that 'if we know less about some of the horrors of the disease we will stay more positive'. I'm afraid I need to know all about it!
What does surprise me is that so few of us seem to have all the info on exactly what sort of mm we have and how the different sorts require different supportive therapy.
The conference you are to attend might answer some questions but I worry that we as patients do not really know what information we need so that we are armed to make the right decisions.
The phrase currently being used in the nhs is' no decision about me without me' and so far we can't even have our blood results emailed to us so that we can ask questions about informed decision making.
Does this make sense or am I rambling? Maybe I'm trying to brain storm and have forgotten how!:-)
Helen

[cajjerParticipant]

Hello Dai & Helen
I don?t post on here very often but I do feel that your recent correspondence is very important and should not be allowed to drift to the bottom of the pile. I?m sure that there are many out there who could and should add details of their own experiences, as you will see I have followed a route that has given me by default more individual treatment.
I was diagnosed in January 2007 after several months of severe back pain, I was told at that time that my prognosis was 3 months, I was started on CDT immediately, I was told that they wouldn?t be able to tell if the treatment was working for about 2-3 months, results were available earlier than this which showed that the treatment was working, after another 2-3 months I was told that I was I was in remission.
I was then booked in at another hospital for an STC, it appeared to be the only course to take, I was not happy with this however and as I asked more questions about the procedure I was informed that this was the way forward , I was a problem and on my notes I was described as being very negative, I challenged the consultant over this who told me that I had asked to many questions, I told him that unless I had the details of what going to happen it was difficult to be either positive or negative, I am naturally a positive person.
The STC failed as I was allergic to the chemo that had been used (4 weeks in hospital much of the time in intensive care). The consultant told me to make an appointment with my original consultant who would put me on Velcade, in the meantime he would forward all the details relating to my treatment to him.
When I saw him he had not been contacted and I had to relay all the information by word of mouth, after further blood tests which showed that I was still close to remission and rather than put me on Velcade I should continue with Thalidomide whilst considering the next step, this returned me to being in remission and there the blood tests show I have stayed apart from the odd scary test for 4 years. In fact I now take a reduced dose of Thalidomide due to PN in both legs.
In addition I have a serious respiratory condition which I am informed by a consultant at The Royal Brompton Hospital is due to Thalidomide, not accepted by Haematologists but appears to be accepted in most other quarters.
I hope that this doesn?t ramble too much

Charles Jude

[eveParticipant]

Hi Everyone
I will not bore you with general details except to say,husband started on ctd,now on velcade and looks if he will not be offered sct.

My point on this,is we were told he had Myeloma told about Myeloma trials and felt we had no options,asked if we had any questions,how can you ask questions if you do not know what to ask.!!!!

Since then I have taken it on myself to find out every thing I can,not easy when you are a full time carer to a very sick person as Slim was in the early days.Septic pneumonia 22 days in hospital,with me doing a lot of the care myself in hospital.

Hind sight is a wonderful thing,would I change any of the past.Answer YES.

1.I should have asked about different Myeloma,s did not even know what one he had and no one bothered to inform me!!!!

2With Slims medical history of family who died of DVT he should have had injections from start,this was not done until he came out of ITU and did not respond well so CAT scan done only to find Massive lung damage and lots of blood clots.

3 Now in Limbo,on 3 cycle of Velcade,told light chains are stable,do not know if Velcade is working and will not Know until bone marrow is taken end of October.

4 So 12 to14 weeks will have passed,without knowing if Velcade is working,
asked about PET scan,answer will not tell them what is going on in bones,had MRI scan,no change,but there should be change!!!

So we carry on not knowing if Velcade is working,not knowing what questions to ask,Hind sight is a wonderful thing,in stead we are suppose to trust them.Well sorry as an outsider looking in,I find the whole process wanting.

I also think there is some thing on my husbands File,that says watch out for the wife!!!! Eve

[DaiCroParticipant]

Hi Eve,

I don't need reminding of how ignorant I am regarding the processes and procedures of MM, however much I read or research… at the end of the day I can only refer to my own experience and information that I have gleaned along the way.

What I don't understand… and personally find unacceptable… is the parameters and limitations that they seem to be working to with Slim. You have said:

[b]3. Now in Limbo, on 3 cycle of Velcade, told light chains are stable, do not know if Velcade is working and will not know until bone marrow is taken end of October.

4. So 12 to14 weeks will have passed, without knowing if Velcade is working… asked about PET scan, answer will not tell them what is going on in bones, had MRI scan, no change… but there should be change!!![/b]

Initially I also had to wait… until the consult pre-Cycle 3… when they gave me the first measured results (from 246 Kappa light chains to 13). My 'Freelight' test was taken (via my normal blood tests at the end of Cycle 2) – I am told they take 1/2 weeks to come back. Why did Slim not have this test? (As well as, not instead of his bone marrow).

In the same 14 week period I had 4 'Freelight' blood tests. My consultant swears by these tests as accurate measurements of Kappa light chains in Bence-Jones related light chain myeloma – the same myeloma category as Slim's.

I do understand that there seems to be some sort of aberration in the activity in Slim's bone marrow… but still… surey he should be having 'Freelight' tests as standard. I'd love to hear your medics reply as to why they are being denied him (or if they have been carried out (I wouldn't be surprised if they have) why have you and Slim not been given the results?

I'm frustrated for you… and this is one of those times where I wish Slim was being treated at the City Hospital in Nottingham.

I understand that you are reasonably mobile… and forgive me for putting my oar in… but it might be a consideration to find another area with a specialist Haematology unit .

I did… and it saved my life.

Dai.

[eveParticipant]

Hi Dai
Have done it again haven,t I,Dai i am not talking about your ignorance far from it i look to you for advice support and anything else you can throw my way to help me understand this dreadful MM,and what is available, so very very sorry,its my ignorance of every thing,that,s in front of us.
So accept my apology .Eve

[DaiCroParticipant]

Whoa lovely lady…

I wasn't referring to you in any way, shape or form poppet, I was stating my ignorance because I am increasingly aware that the more I get to know about MM and all its processes and procedures, the more I realise that I am just scratching around on the surface.

Looking back at my post it was a clumsy introduction and I realise that you could quite easily interpret it as a personal slight against you. 'I don't need reminding' was a personal statement of my own position, pure and simple – you and anything you have said to me didn't enter the equation.

So it is you who should be accepting my apology, which I offer wholeheartedly and unconditionally, I am so sorry that I have made you feel guilty or negative at a time when you need every ounce of positivity and love that you can get.

So here is my apology:

🙂 SORRY EVE 🙂

And here is my love:
😎 😀 XXX 😀 😎

Dai.

[PerkymiteParticipant]

Hey come you two, I was enjoying the dialoge do not get upity now LOL 😀

Kindest reagrds – vasbyte

David

[mhnevillParticipant]

Hi Dai

Agsin you rsise a very important point and one which is very worth our debating – and maybe an article in "Myeloma News". I read an interesting post this morning from Pat – Myeloma Beacon blog, where he poses the first part of a discussion on individualised treatment plans, something very dear to my heart.

You are so right though when you point out that we don't know, as the patients, what kind of MM we are dealing with and have to get our blood results by waving the Myeloma Diary under the Consultant's nose each visit.

From all I have read, I am sure there are some patients for whom less tratment, rather than more at the beginning, is better. I have decided to take that risk for myself. I did manage to have a part discussion about this with my Consultant this last visit. I asked if we could set a ceilling for my PP before we would consider treatment, so that I don't feel I have to go into battle each visit. She, no doubt rightly, said it was trend rather than numbers that were important, but apart from agreeing to go onto Zometa instead of Bonefos tablets (and I was surprised I hadn't been asked about this before) I feel a bit easier in my own mind – and got a three month interval before my next appointment instead of the usual two!

One of the things Pat says in the Blog (sorry I am no good at giving URLs) was that given the pleriferation of new treatments, it means only those Consultants at the very cutting edge can be in the forefront in decision making.

Dai, I would be very worried if there were any real truth in the case you make, that if a patient doesn't follow a set path it would lead to difficulties later. Certainly something we ought to be challenging – How??
You also, personally, are one of the people I think of, when i wonder if SCT is always the very best option. Is the pain always worth the gain? I guess it does come back to personal prognosis, something which we don't seem hot on. But then we read of folk, like Jude, who were high risk, and even in spite of a failed SCT, are still here to tell the tale so does prognosis always help.

I'm sure we are all grateful for advances in treatment, but how can we make the very best use of those advances. It's why I'm very grateful for those willing to go on Trials – I'd be up for a Trial on "less is more" in all senses. When I read of what people die of with MM, not to put too fine a point on it, it is usually from failure of other organs or infections so it seems to me that we should put in as much effort in preventing this organ damage and these infections. I'm not totally convinced that high doses of chemo are the only way. Perhaps they'll write that on my tombstone!!!

Let's hope we can all be here many years down the line to compare notes again, but in the meantime, I'm with Dai, lets see if we can get some logic (understandable by the lay person – i.e. the patient!) into the treatment of this horrible disease.

Sorry to have rambled on so long, but before I finish, just to say to Eve that I agree that Slim should be getting some better treatment.

It is a shame we don't have the big patient/Consutant Conferences that they do in USA, where these questions could be put. Maybe that is what you have got into, Dai? All power to your elbow, as they say.

Greetings to all my friends on this great site.

Mavis x

[eveParticipant]

Hi Everyone
Once more in to the breach,and hoping to clarify and expand this discussion.

The hospital i go to has a specialised haematology dept that is taking part in Myeloma Trials which Slim is on.
When on trials you have to follow the pathway,but you can come off trials any time,and you can be removed of trials if they think you are no longer suitable.
In many ways as you go down this pathway it is also a learning curve for the trial team,decisions,are made as a team,not by one person,if your file goes into a meeting on a Friday for EG: good or bad results,they have a meeting and decide the action to be taken.

This is not the problem,I do not think if i lived in another part of the country,it would be better for Slim.

It,s the hospital that is so poor,the standard and condition of it has a lot to be desired ,the whole cancer unit and one ward connected to it and staff are second to none you cannot fault the dedication of the staff.

One its the amount of cancer patients it serves to many for such a small unit,leaves the staff always doing catch up.

Other departments in the hospital for example pharmacy leave a lot to be desired no matter were you are, but specially cancer patients wait hours for drugs,because they are cancer drugs you cannot go and collect them yourself,nurses are wasted having to go and collect them and having to take the wrath of patients who are kept waiting for hours.

If you end up in hospital with an illness that stems from treatment you are not treated as cancer patient A&E first then general ward,this is were the treatment goes wrong,no co-operation,no understanding of Myeloma,hospitals not clean i could go on but i am sure you get the picture.
So you have a good cancer unit a good ITU,and the rest is c-r-a-p.this is why you have cancer patients dying because of lack of care resulting in infections ,DVT.NP to name a few.
As for choice of Treatment for Myeloma,I do not think,there is much choice,I consider the consultants hands are tied ,by NICE,and there best options for patients are the Trials,and are lucky to be on them.
The lack of knowledge about treatment stems from not having time to keep patient informed ,I consider to that extent I am lucky because I do ask questions,and get answers,only sometimes I do not know what to ask. EG: Sharon said about having PET scan done instead of bone marrow taken,all new to me?

I do realise Slim differ,s slightly as now his condition kappa light chain myeloma does not show true readings of his condition,he still has usual test done,but after having 6 cycles of CTD the Myeloma had gone up to 80% in marrow,although kappa light chains were starting to show remission.IT surprised the consultant as well, hence VCD 8 cycles bone marrow taken after 4 cycles.
I do feel Jo,s sword of D-amocles is hanging over us.
It has got to the point do I want to know ?
In one hand Slim is looking better,but considering the condition he was in,he should be looking better,people still blank him because they do not recognise him.14 weeks is a long time to wait,to know if the treatment works,most people can tell from pp or kappa light chains.we cannot.
Hide sight is a wonderful thing,I wish I had it now so I could stop any pit falls we make.We only have each other to learn from and hope there is someone ahead of you that can help you along the way. Love Eve.

[brochoParticipant]

Good morning everyone a very interesting topic this not sure I can add much except to relay my own experience . From the initial consultation at UCH I have felt they are at the forefront of any new treatments With referwence to their hands being tied by NICE guidelines I have never felt that was the case.When I asked about the Velcade rules on the number of times it can be used I was told there are always ways and means to get what I as the patient need This has been made clear to me from the beginning in that they have to work through the process but if it doesnt meet my individual needs then another approach will be found As for being made aware of pp numbers from blood tests I have always been content to know they are too faint to quantify or on the up This is because UCH take a whole person approach to monitoring my illness The first question at clinic is to ask me whats new , as in any new pains or symptoms Where warranted new symptoms are investigated with bmb or mri scans Before any new form of treatment is begun they hold a multi disciplinary meeting , where all team members have equal input T he results of these meetings are discussed with me and I put any questions and my point of view So all in all I feel very lucky to be having treatment at UCH and their approach suits me as I know they will always come up with something and I dont have the worry that they will say sorry but you have reached the end of the road unless ALL possibilities have been tried Sorry if I sound a bit smug love Bridget x

[HelenParticipant]

Bridget I feel I get the same sort of response where I am and am fully consulted too, but I can also see where there are holes in the system, as you say Eve the places are so busy with far too many patients and nurses very pushed for time, as for pharmacy….. I sat in the very crowded waiting room after my sct thinking I was more likely to pick up an infection there than if i'd gone to tesco for my prescription.
A word about trials, testing new medications takes a very long time and the way people respond is so individual. It can take as long as 10 years for full approval of new treatments after the initial trials and only recently have the thalidomide derivatives been in use for 'new' patients on trials so no one knows what the long(?) term effects will be. Mm is also a disease which is immune system based, it presents in many different and confusing ways, and a drug that works on you one week can stop working the next and you have to move to the next drug. I can't see how the medics can do anything different other than give us assurances that the pace of treatment and the sort of treatment is the best of what is currently available at the time, bearing in mind our ages and severity of the disease.

Helen

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