[cwebsterParticipant]

Hi,

I'm the regional chair for the RCPath (http://www.rcpath.org/) and the ACB (http://www.acb.org.uk/) for the West Midlands. I'm a consultant biochemist and my laboratory provides services and laboratory tests in the area of Multiple Myeloma.

I'm in the process of organising a meeting on the "Multi Disciplinary Approach to Multiple Myeloma" the outline of the days is below.

We are scientists and clinicians from a wide variety of backgrounds that work together to provide services. Whilst not generally serving patients directly I believe it is vital that we get the views of patients on the services we provide. I'm therefore looking for a volunteer to come to our meeting and give us the patient perspective on the laboratory side of MM. If you're interested, drop me a line at craig.webster@heartofengland.nhs.uk

Best Wishes
Craig

Craig Webster
Consultant Clinical Scientist
Birmingham Heartlands Hospital
Birmingham
B95SS

Association for Clinical Biochemistry West Midlands Region
Wednesday 9th November 2011

Event Suite, thinktank Science Museum, Millennium Point, Birmingham B4 7XG

Joint Scientific Meeting with the Royal College of Pathologists

10.00        Registration & Coffee
10.40        Introduction and welcome.

Morning session ? Robert Gaddie Award and RCPath President?s Lecture
Chair:         Dr Clare Ford

10.45        Grade A Trainee Presentations for the Robert Gaddie Award
11.45        Multidisciplinary Approach to provision of pathology services Professor Archie Prentice (President RCPath)
12.30        Lunch

Afternoon session ? Multidisciplinary Approach to Multiple Myeloma
Chair:        Craig Webster

13.30        Multiple Myeloma ? A Patient Perspective (speaker tba)

14.10        Shared Care Pathways and the Diagnosis of MM and MGUS (awaiting speaker confirmation)

14.50        Tests for polyclonal and monoclonal immunoglobulins in the diagnosis and management of myeloma Professor Mark Drayson

15.20        Tea

15.40        Myeloma – New test for an old disease and new application of an old test S Anandram, Stephen Harding, Supratik Basu

16.10        Molecular Techniques and Their Uses in Multiple Myeloma (speaker tba)
16.40        Close

[eveParticipant]

Hi Craig
It is nice to think someone actually wants to know what we think!!!:-P
There are some wonderful people on here ,Like Dai who moved from Wales to Nottingham for better treatment,he is not posting at this moment,which is unusual.Could not get in to your RCP Path email address to check you,thought I would let you know!!!.
I cannot help you,but either way we it would be nice if we could have some in put,from the boffins,!!!!
kind Regards Eve

[cwebsterParticipant]

Hi,

Great, thanks for the comments. I hope someone is able to give an opinion.

You can check any registered health professional at hpcheck.org.uk my record is:

http://www.hpcheck.org/search-results/search-details/?searchOption=1&search=webster&profession=CS&start=1&ID=02409

Best Wishes
Craig

[DaiCroParticipant]

Why Eve…

If I had a suspicious nature I'd say that behind the flattery you were trying to volunteer me for a job… a specific job that entails putting across the Myeloma patient's perspective on the provision of laboratory services and laboratory tests… not to a Myeloma InfoDay, where you are surrounded and supported by like minds… but to the: Association for Clinical Biochemistry West Midlands Region in a joint scientific meeting with the Royal College of Pathologists no less.

No pressure then…

Of course, one of the bees in my particular bonnet is the lack of individual markers that would allow a more flexible response to the individualisation of doses and cycles in treatments… which would mean having more laboratory testing to determine levels in the individual patient etcetera… which might have relevance.

Sounds interesting anyway.

Dai.

[MinParticipant]

Hello Craig
I would like to see more regular testing to prevent some patients embarking and continuing on drug therapies that are not working but they are being continued just in case!
the present culture of one size fits all is obviously not the way. there are too many types of MM for everyone respond to the drugs that nice tell us we are allowed.
I think a more focused approach of knowing that a particular type ie. SFLC responds well to X drug rather than suck it and see. Could provide longer remissions sooner. Currently many people commence a drug to find out that they do not respond well to it. The money and more importantly time wasted is not in keeping with budget constraints.
What about DNA focused blood tests to pin point the medication that will respond better.
What about chromosome 13? What part does that play in in blood tests?
I welcome you with open arms and hope for a little more input occasionaly please as you and your profession are key to outcomes for MM people
Thanks
Min

[PerkymiteParticipant]

There were several, technically minded, persons who used to post quite frequently, I have not seen them for some time. If they are still following the site this would be a golden opportunity for them and urged them to respond if they can.

Personally, it is out of my league I think.

Kindest regards ? Vasbyte

David

[brochoParticipant]

This such a great idea to ask for our input on technical services .I am not up to it though mores the pity , the number of catnips I need during the day at the moment would be bound to see me fall asleep mid sentence !! I hope someone more able can do it love Bridget aka Nodding Nelly

[DaiCroParticipant]

Min has hit the nail on the head IMHO. We are subjected to a 'one size fits all' and, thanks to NICE, we also have to have certain treatments in a certain order – for instance:

When I started treatment the order of play was:

CDT – SCT – Velcade – Revlimid

+ various experimental treatments at differing stages of development (Bendamustine etcetera) which may be made available as frontline treatments, or as part of a clinical tria,l followed by the kitchen sink or anything else they can think to throw at it.

[b]Now we are told incessantly that Multiple Myeloma is a very individual disease to which each person will react differently. The same applies to treatments, with each person reacting differently to the different drugs and components.[/b]

If this is true (and we have no reason to doubt this… because it is borne out by clinical evidence and patient experience) then why do we receive the 'one size fits all' treatments, in the order decreed by NICE?

For an individual to receive an individual treatment plan – based on individual factors.. the individuals general health and other characteristics… it would take a lot more time with the consultant, lead nurse etc plus the patients needs, wants and requirements.

I.e. following my CTD, and the excellent response I got from the treatment, I achieved full remission… with no signs of the disease whatsoever… I wanted to wait until the very first signs of the return of myeloma calls until I started the process of Stem Cell Harvest and the ensuing SCT. Under NICE guidelines I could not be guaranteed funding for the harvest and SCT if I waited. The same goes for downline treatments.

Say the consultant and the patient both agreed that it might be desirable and even beneficial to start the next treatment with CDT… because the first round of treatment was so excellent… leaving Velcade and Revlimid etc', for further down the road. Again NICE cannot guarantee that the funding for Velcade and Revlimid will be available if it is not used in the order prescribed…

So let's take Velcade… the drug can be made to measure for the patient… taking into consideration different tests carried out after the first infusion… this way forward will need more time with the consultant, access to the laboratory and lab technicians, including the interim reports which define the next amount of Velcade to be given that maximises the benefits to the patient while keeping the side-effects to a minimum… this would make the response to the patient far more individual… but has time, resource and financial implications.

[b]'One-size fits all', and a prescriptive list of treatments, does not make for an individual response to myeloma… so therefore the mantra of 'this disease is very individual'… becomes a statement of truth but not, unfortunately, a statement of intent.[/b]

Dai.

[eveParticipant]

Hi Craig
Do you see what i mean about Dai,i hope you have signed him up.sorry no pressure Dai!!!!:-P .I think he would be ideal!!!

To Dai,boffins are no different to me and you,i have a good friend who use to be a boffin,and on a social level you would not have known it,
no pressure Dai.Eve

[cwebsterParticipant]

Hi,

No takers for this "gig" so far! No we aren't any different to any other people, and we need to see whats really wanted from the people who ultimately use our services.

We may do research into particular areas of disease but get so compartmentalised it can be different to see the bigger picture. One of the major research drivers is to find diagnostic tools and tests that can aid in personalising medicine. For example HER2 testing and Herceptin treatment. In fact the whole health economic system benefits from this type of approach as the treatments have higher efficacy.

Other people have responded regarding things like getting results emailed directly to the patient etc. Again these are very important issues, which I think the professionals need to address, take for example this conversation on a biochemistry email group just today: https://www.jiscmail.ac.uk/cgi-bin/webadmin?A1=ind1108&L=ACB-CLIN-CHEM-GEN#28 (patient who wants his own blood back) these exchanges illustrate differing views on the role of the patient in our processes.

I think we are at a tipping point in this area and input would be gratefully received.

Best Wishes
Craig

[eveParticipant]

Hi Craig
The Problem is Craig,you need someone who has been through the whole system of varies drugs,with all the problems that go with it,these people do not plan that far a head.As you may understand they do not know what will be happening by November so no one can offer you a guarantee!!!!.Even carers like Min who are very well informed,have there hands full being 24 hour carers.Give people time to think about this,someone will step up,as you have hit on to something very important to us.
It is a sad time at the moment,we have lost,and are loosing people,and no good news is coming through,so keep posting and then it will stay in the forefront of the topic.
In the mean time i will bully Dai,cannot bully Min (police).regards Eve

[MinParticipant]

Hi Craig,
I am just a carer of a MM sufferer who in 2 short years has undergone CDT therapy followed by a stem cell transplant and more recently a relapse with velcade and revlamid therapies.
Not being the patient I don't feel qualified, but i think there are a good many people who would love to hear more and have more input and indeed information regarding blood testing and results.
Perhaps we could nominate Mr Eric Lowe or some one else from the 'office' who could represent the patients and carers and ask a variety of questions on our behalf.
You have to understand that those people who are currently undergoing treatment cannot make plans as far ahead as November !
Because with the best will in the world they simply do not know if they will be well or undergoing a treatment which makes them feel like sh***
A newly diagnosed person would probably be getting ready to undergo a transplant in Nov.
One of the many questions I would have wanted to ask at the outset was-:
Can I have a permanent print out of blood results. Having got these in the early days, I had not got a clue as to how to interpret them, what all the letters were short for, and more importantly what 'normal ' was in relation to those results.
I might have like to see a chart that was easily understandable as hearing from a Dr that Light chains were over 5 thousand meant absolutely nothing at all to the uninitiated.
Furthermore I would have like to see a chart that showed what if any progress was being made by certain drugs and which of those drugs was producing the lowered figures.
That is not to say I have no confidence in the Dr it is simply a record of events. Consultations are over in the blinking of an eye and generally I will remember parts of the consultation and my husband will remember something else but between us we get sidetracked and lose site of the bigger picture which if presented in an easily (layman's terms) presented format would make all the difference as all Haemo patients are always awaiting blood results. Like Dracula!
Maybe a questionnaire of the most popular or frequently asked questions could be presented to your meeting with the minutes that appertain to those questions being printed on here?
Regards MIn

[DaiCroParticipant]

[i][b]'You have to understand that those people who are currently undergoing treatment cannot make plans as far ahead as November! Because with the best will in the world they simply do not know if they will be well or undergoing a treatment which makes them feel like sh**[/i]* '[/b]

Min has hit the nail on the head in my case.

Which is my situation exactly… at the moment, if my treatment goes to full length, as advised by my consultant, then I shall be finished by mid-November. It may be that I will feel well enough to attend and contribute but I know that if I have a bad last cycle (mine are hit and miss… my fourth was very easy, my fifth (the present one) has been awful… under the same conditions and at the same strength of toxicity etc., I would be very interested in contributing but there is no way I could commit up until the date itself.

I appreciate that physical attendance is important but perhaps a collection of wish lists or case histories with personal evidence of processes and procedures that the patient would have found helpful (perhaps with some guidelines from your group) could be used either as a back-up or as an alternative.

Dai.

[cwebsterParticipant]

Hi,

Sorry for the delay in reply. No problem to wait until closer to the meeting. Were fully flexible.

Hope all goes well for you all

Cheers
Craig

Craig Webster
Consultant Clinical Scientist
Birmingham Heartlands Hospital
Birmingham
B95SS

[eveParticipant]

Hi Craig
Can I suggest you look under Treatment (up date on cycle 5 of Velcade )!!!
It might give you some in site to the problems,we have it is mainly the last 6 postings.
I was trying to find someone who,has Bence Jones kappa Light Chain,who like My husband had 6cycles of CTD who was considered to be going into remission.bloods good kappa chains good,but because he is on MX1 trials,bone marrow taken,found to have 80% mm in marrow?????
Now starting 8 cycles of Velcade.
Because of lack of info not knowing were,why or how test are done,I have had to resort to try to find someone,with same results,!!!!!
I want information,and as good as the team are they do not have the time to explain things.Regard Eve

[Author]

Posts