[duskParticipant]

Fortunately I have had no trouble getting my results- except once when a one nurse said they could not be given – but another  I asked soon afterwards happily printed them out.

What I have discovered is some doctors/ hospitals use a clause n the Data Protection Legislation that relates to subject access (i.e. your records) to decide whether they are too sensitive to allow you to see them. in some cases this might be because some people could be psychologically affected.

I do not think by law without a formal DPA request the consulant /hospital is obliged to give you printout of results. I have been fortunate (and persistent).

I think everything hinges on hospital / departmental policy. I get copies of letters to GP so I get important results from this too.

Dusk

[duskParticipant]

Dear Fiona

I hope today is a better day for you.  I have to admit I thought the end was near with my responses to initial chemo with many hospital admissions in a short space of time.  The last – I was too worn out to care if I lived or died (but for my personal responsibilities to others).  But I came through- I think for now. In spite of many gaps in my chemo treatment, as a result, I was lucky that my insistence on what I sought for initial treatment (and got because of second opinion) proved to be the right thing for my disease to get under control with the treatment.

So going with your own instincts, ( and research with knowledge of your own situation/ health), rather than just taking the opinion of one doctor who will have their own way of seeing MM, is important.  All treatment is a risk in MM; none of us have a crystal ball to know the outcome beforehand, not even the doctor.

I hope that you and Philip can think about how you want to proceed and why and get the support to do this.

Best wishes

Dusk

[duskParticipant]

Dear fiona

You have brought up ‘the elephant in the room’ with rt MM. I will rarely post because I find the optimistic stories of the few rather difficult in view of my own situation and experiences. Dealing with a disease for which treatments are mere guesswork and uncertainty is enough to cope with on a day to day basis.

I feel for you and Philip and greater numbers of MM who barely have a remission before their disease takes off again, you are not a minority- it is a disease whose twists and turns are just unpredictable. A few do very well – especially the much younger MM patients, many others not so well.

Being in remission and drug free is what we all want but i suspect few manage. But we must hang on in there.

 

[duskParticipant]

Very apt post Fiona. People who use the ‘carer’ label do not often see things as more complex and interactive, as many personal situations / family life is not so formally compartmentalised to fixed roles. For some of us the fight to remain normal remains strong.  The state social services system is so unrealistic in putting people into defined categories- due to carer’s allowance (for those able to get it).

I also do not like the word carer. My forth admission into hospital recently, in less than as many months, for a rather long stay had nurses asking me whether I wanted care assistants to help me bath- over my dead body was my reply- I will do it in my own time and pace!!!

[duskParticipant]

Dear Eve

I know you have felt very sceptical about me because I do not divulge personal information in the rare times I post. That is my right to keep a low profile in a public place.

But I wanted to respond to this post. Medical opinions in emergency situations in local hospitals are not always exact, with mostly junior doctors and agency nurses around  at weekends.

What happened to Slim may not have been avoidable even with vascular surgeon input earlier ( I have some experience of this with someone). So it is to be lauded that Slim is a fighter and you can shout out loud and you had a good medical input in the end. That is all we can all hope fo in the current system.

As for DNR’s these are difficult decisions and each of us different. Slim depends on you and you care very well for him. Many have no one and struggle alone and serious decline may not be ‘doeable’ for them. Inherently I believe doctors , the courts and those who make life / death decisions should not be allowed to do this. Ultimately it must be t he previously expressed or value wishes of the patient, or current wishes that count- as you say it his his life.

May the rest of the journey be peaceful and less of a trauma for yourself and Slim.

Dusk

[duskParticipant]

Sorry to hear of your relapse, it is always a shock when you go through ‘the mill’ and feel things will improve. But MM is just totally unpredictable, even for those of us who feel well for a time. Everyone keeps telling me how well I look and how positive, but I think that is my get on with life personality and fight the system if yo have to- it does give you energy!!

I would like to know more about your dental stuff as I am having to make a decision about this, after expert assessment. Unhapp with what has been proposed and my own dentist ( and hygienist I see 2x yearly)is not in clear agreement. Post me privately if you feel it is better.

 

Dusk

[duskParticipant]

One wishes to relay congratulations and best wishes to Professor Morgan, whose contribution to the understanding and treatment of myeloma has benefited the UK with the positions he has held. Of course being in USA does not mean the research does not benefit others elsewhere.

 

But in my initial post I raised an issue, not liked, (which from long experience I am fully aware of) regarding ‘careers’ of those whose clinicians treat us; people often seek to move upwards, onwards etc. We are left without their expertise as patients. Of course there are new, others who come along and take up the gaps left. But as with the turn over of GP’s I find meaningful continuity and consistency of care is declining.  Some posts show this here as they seek second opinions when unhappy with their situation.

But with myeloma we need expertise of a broad  high level to be able to make our decisions on what is not a fun journey- even if, for many, more doable than for others.

I hope that Myeloma UK can gain someone of equivalent standing to Professor Morgan to take it forward in the UK.

 

[duskParticipant]

Hi Sal

The CVP regime is one that showed up well in phase 1/2 trials it seems. But it is clearly not a standard regime as is CTD.

As with most combinations of drugs for treatment there are no hard and fast rules and the consultant may make decisions based on a range of factors. In some places only two drug regimes are given (not usually in the UK) and in otyers a three drug tregime. I do not think anyone really knows which works better entirely as the trials to assess this have not as far as I am aware been undertaken.

Dusk

 

[duskParticipant]

Hi Jeff

This ‘cluster’ of incidences of myeloma in a small area is interesting.  But the geographical picture would be quite complex to unravel and so far no definitive links between jobs / work and the development of myeloma have been established. Some work points to radiation exposure and radiation is all around us at low levels as well as used quite frequently for clinical purpose.

Malignancies are often about the interaction in particular individuals between their genes and the environment (what you are exposed to and ingest). Very few people are static all their lives and live in one place. Cancers can take around 20 years from a ‘change in genes’ to develop into a detectable growth- of course this differe from individual to individual.   So although your observation is interesting it might be a co-incidental finding. I would raise it with your consultants and see what they say.

Dusk.

[duskParticipant]

@Mothas / Fiona

You have hit it on the nail- the most clued up and patient focused clinicians will not follow rules, they will do what is in the patients interests and ‘tweak’ the treatment to make this possible. Unfortunately the road  to my to my diagnosis and treatment was initially littered with people who in the end I did not feel confident with.

Being on a trial should not be a requisite. If the department can make a case and uses particular drugs already e.g. in ongoing trials, access no doubt is easier to these for other patients. UCH has a large number of myeloma patients and is highly regarded, so would wish to take the correct perspective for its patients to keep a high reputation and develop its own expertise even further.

It is really about the attitude of the consultant and their extent of expertise that matters. I have long known this- having sought out doctors that other doctors would rather send their own families to, if they have any choice.  It often costs money because you have to go private. The difference when you get these experts can be comforting. It is time people shared information about the best doctors- they stopped producing the Good Doctor Guide which is a shame. It would drive up standards and competition. I do not hold up the NHS as a ‘holy cow’ not to be criticised, just as a system of care access which others should aspire to.

[duskParticipant]

Dr Mike, I think your assessment is very pertinent. A doctor with myeloma blogging on the American website equivalent to this actually raises yet more questions about treatments as he finds doors closing to prolong his life with further treatment.

I take both your views, as I do have a relevant background to do really intensive detailed research. I have taken action to get what I felt would best help me and have started my treatment. It is not a standard combination but one from research has shown good responses with potential for further investigation. It will not suit everyone, but I am not at all concerned, as I had a very clear idea of why I wanted what I wanted. I was lucky that I found a myeloma clinician who listened and understood and to whose care I was able to transfer. From being paralysed I have moved forward. I have now no regrets and am very happy, if one can be with the severity of issues I face.

I think haematologists can be more proactive for patients whose existing health profile may need more  sensitive / flexible approaches to reduce additional risks from treatment. With myeloma there is a balance that ‘one size fits all’ / NICE approaches do not deal with. No front line combination or treatment guarantees remission long term in a disease which shows such great heterogeniety in the population who get MM  and also ongoing mutations to make plasma cells resistent. It is a lottery. But the NHS is worth its weight in gold for most of us- when you find the person who works well for you.

[duskParticipant]

Hi Carol

I am happy for you that you are growing  from strength to strength post SCT and wish you a very long remission.

I am interested in the fact that some people e.g. like yourself and Tom who is going through second SCT have been ‘selling up’ or ‘downshifting’. Moving home is very demanding of physical and mental energy / time. I too am thinking of the same but do not have a ‘partner’ so cannot see how I will manage with my state of health now.

I had estate agent valuation as soon as I realised what I needed to plan. But the work involved is huge if I am to get the best price.

Any tips on this?

Best wishes

Dusk

[duskParticipant]

I think personally I have several issues with the way this topic is being viewed on the forum.

Firstly I do appreciate how fortunate we are to have the NHS- indeed I am not being political when I say that you can judge a society by the way it treats those in need who are without resources. The NHS is a gold standard for healthcare access for all.  But that does not mean there are no regional differences as to the delivery of care and experiences of those that seek medical help. It is a fact that some lottery exists, though we often are not aware of this.   I will leave you to think about this as my aim is not to preach.

Secondly although it costs pharma lots of money to take promising drugs to the market and yes many, (not all as I know from personal experience of people in big pharma),  people who work at the scientific level are committed to finding ‘cures’.  The truth of how pharma actually progress research and market drugs is rather complex and I will not go into it here. But those who are in trials, whether they know it or not, (and in some parts of the world big pharma is not necessarily behaving well), are not an elite. I do not see the point of promoting more and more drugs which will not be used routinely by the likes of the NHS because NICE decides they are too costly and the current system works for most people. That does not mean it is right for all people and sometimes the guidelines are rather rigid for clinicians to be able to offer the individualised approach to myeloma sufferers.

CDT is a good combination, long used in the UK.  But with expensive novel drugs increasingly used globally as front line for MM, and shown to very effective, the picture of whether it is entirely the only combination of front line MM treatment that should be offered in England is another matter entirely. This should be a clinical judgement and not a cost judgement. That is my point.

As to the fact the NHS cannot afford everything. This is where I will be political – rescuing failing banks  or allowing large corporations to avoid payment of the correct tax is not what I accept.  Tax revenues which support the welfare of society are significantly depleted by this. That does not start to take into account a whole lot of behaviours of politicians which the majority public do not support in terms of the public purse / expenditure. So when we are told by NICE that some drug for MM can only be for relapse/ refractory MM essentially because of cost (has happened with other cancers in England) then I do feel very angry indeed.  Having MM (or any difficult cancer) is bad enough without this.  Some of us will not live to get the state pension we have paid into- I do not think denying us drugs is fair as the money saved in paying out pensions.

Finally I know that no one really knows what drug combination / treatment regime will work best and optimally ( e.g. remission / QOL) for any single individual and that is the guesswork. But there is also something called intelligent guesswork based on evolving science / medical science. Because it is teams that discuss the treatment regimes for MM patients they need be able to use current intelligence optimally.  The argument is not about Velcade vs standard therapy, it is about allowing clinicians to research and make the best decisions based on each individuals needs.

Dusk

 

 

• This reply was modified 10 years, 8 months ago by  dusk.

[duskParticipant]

Dear Eve

I do read the Myeloma Beacon and yes have read Arnie’s post. I prefer the Beacon as it is very informative indeed.

I think your notion of  ‘coming out of the closet’ differs from mine and you might not take me seriously but I can assure you most do in the realm I operate in.  Some people, like myself, do not seek to focus on their personal picture- that I can do well enough with clinicians and friends/family.

I do not seek the re-assurance of others  but am concerned as to how human beings fail orther human beings- in our case the drug company shareholders/ directors, the government, NICE and, to be blunt, sometimes our consultants.  Focus on personal wealth and security of ones own position blinds most of us to the cruelties that make resources the excuse for inaction when action is perfectly possible for thooise determined to act.

I do realise the complexities of myeloma- more than you might imagine as you are very clued up I see. I am in a very different place to many posters I have looked at on this forum.  As to vitamin C these things go in and out of scientific fashion and I take the view that one should do what feels right for you- no doctor will pursuade me otherwise.  If someone wants to try out an ‘alternative’ treatment and their clinician says no it is up to the patient to take responsibility for going against the clinician’s view. Although I take a much more ‘measured’ approach to unclear therapies for untreatable serious illnesses, I can understand how desperate and vulnerable people become that they will try anything when the odds are stacked against them. I however fear their being ‘duped’.

You are a strong woman Eve, a credit to your husband and family.  I too am strong in many ways, but even strong people have their weak points/ moments. I want the best for everyone, knowing there is no single answer for everyone who has MM and how cytogenetics and clonality, with drug resistance of certain plasma cell clones, creates a unique picture in terms of treatment outcomes. That is a huge challenge for the clinician- who really needs to be a scientist too.

The challenge remains for treatment. Any one of us can only seek what seems possible for our needs / situation and should be alllowed this.

[duskParticipant]

Dear Eve

You are right to ask questions as you have done. I do not think it a good future for humanity when society starts putting a price on human life. The question is why is there research and money put into drugs and trials when people are going to be denied them based on cost or age etc.

I am so glad for you that your strong stance has helped Slim to buy some time and perhaps improve the time he has to a better level- this is no less than he or anyone deserves.

Now you might understand why I am so questioning of the health system which uses the high cost of the cutting edge novel drugs to deny their use more freely in a disease like cancer- it should be a clinical decision with each patient, not a NICE one, to use any regulatory approved drug. I also do not accept doctors always know best, they do get things wrong.    You have shown that sometimes another doctor can take a more helpful approach even in a disease whose roller coster journey we are all acutely aware of.

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