[duskParticipant]

I have recently been confirmed with myeloma and cannot say the journey to this has been one giving me confidence in its assessment and treatment. It is very clear that what is offered in the UK is restricted with the cutting edge work / treatment affiliated only to trials- thanks to NHS restrictions on useful drugs in rare cancers.

I have to say I started reading the posts  on this forum as soon as I suspected myeloma (before the doctors confirmed it) and realise just how courageously many here are taking what is given without question. I realise how hard it is to question ‘experts’ especially when they avoid or do not know.

 

But with the press picking up that rare cancer sufferers are often denied drugs which could prolong life and knowing myeloma is a minefield making careers now for some in this field it strikes me how hard it is for all of us, when we ‘know the score’, to fight for what we need in a system that is rationed and subject to post code lottery.

 

I am strong mentally but the changes to my body have made me aware of my frailty at a still relatively youngish age. I do not feel we should fight knowing we are often diagnosed late and the treatment as well as the disease is a lottery at present. What do others think- you are all so brave in the way you are discussing what is happening and will happen?

 

[MicheleParticipant]

I’m sorry you’ve obviously had and are having a bad experience with the NHS, but I can assure you that that’s not always the case.

Fortunately, I was diagnozed very quickly thanks to a brilliant doctor who referred me within 24 hours to a specialist who arranged bloods, x-rays and bmb the same day and I was told I had MM 5 hours later.
My treatment started the next day and I had a team of nurses “slot in” around me so that I had contacts at all times. I’ve never been afraid to ask my specialist questions or “tailor” my treatment to suit me rather than regimented.
I was told that there were many drugs in the armory for the future and that all doors would be open with no restrictions.
6 rounds of CTD and a SCT later, (not on any trials) I’m 2 years from SCT and in a very good drug=free remission.
All this was FREE, for which I’m very grateful.

When I do relapse, I’ve every confidence that my next treatment will go smoothly with no question of NHS restrictions with drugs. I’ll also be able to have a say in what options are available next.

You don’t say where you’ve been treated but it makes me appreciate how good cancer services are in Dorset.

[petesilverParticipant]

I wholeheartedly agree with Michele, I also could not have had better treatment from the NHS and when I needed treatment it was there, which is why I am still here after 10 years.

 

[HelenParticipant]

As Pete and Michelle have so eloquently put it, I can only agree with them. Where are you being so badly treated? Myeloma is treated with a very small armoury of drugs which are available, and show they work for some ..not all …for some time. I believe that the great majority of us get the best of what is available at this moment in time. Do remember that myeloma as yet is incurable and only treatable…. The treatments available now are proven to have some value but none of them are given willy nilly as they carry such awful side effects and we often develop early resistance.
Helen

[FrancesParticipant]

What are these drugs we are being denied? Who are the doctors who are just ‘making careers’ out of treating myeloma? Certainly I’ve had nothing but care and attention from my doctors since I was diagnosed. I was assured from the start that there’d be no ‘post-code lottery’ in my treatment. As Helen says, all new drugs must be tested or they will do more harm than good. Please, myeloma is scary enough without looking for other things to be scared of. Suggesting that we are just taking what is being given us ‘without question’ is unkind – it’s very clear that the people who use this forum aren’t fools.

[eveParticipant]

Can I join in this post,as a few on here realise what my husbands position is at present .

I think more could be done by GP to get a quicker result,and yes I know it is rare plus back ache could be a number of things!!!!,but a simple blood or urine test should be done as routine!!

The facts concerning treatment,NICE has 3 treatments on Board outside trials.
CDT CDR CDV,before you can try another treatment without trials you have to do those 3 treatments.

Trials offer treatment to new drugs often being used in America already!!!

You can try for drugs on compassionate ground!!

The Myeloma Experts are based at some of the Top Cancer Hospitals in the UK,but the smaller hospitals like ours have Kings in London .So treatment on trials is the same as Kings.!!!

My husband has been told they cannot treat him any more! But it was his consultant who asked us would we like a second opinion at The Royal Marsden,which we are taking up.

Would we do anything different,I do not know
Would he live any longer

The only lottery is the person who has the Myeloma,no one can tell you why 25 percent die within a year to eighteen months,the rest survival rate is between 5 years gradually a small percentage will last 10 years and beyond.

Dusk some choose not to have treatment,there choice
Trying to survive is natural,and I personally would not have missed out on these last three years.
As for the press,they tend to be the biggest scare mongrels I know .
As you have just been diagnosed a warm welcome to the roller coaster with all it’s highs and lows,we have lost some very good cyber friends on this journey,who deserve some recognition for paving the way,going on trials and helping others who come after them,and putting up with people who are voyagers in this Myeloma Bubble

So yes we are a great bunch of people,friendly give advice and help as much as we can,so again welcome to the forum,learn all you can.Eve

[duskParticipant]

Sorry but I did not suggest that forum members, or indeed myeloma sufferers were fools.   How much trust one has in a system depends on ones personal experiences.  I feel very strongly ( Eve has indicated this to be an issue too) that GP’s and other clinicians involved in ones assessment / care need to do blood / urine tests on patients like myself who present with an apparently  common symptom when they are not often in the GP surgery with problems. This is why we are diagnosed late and die (that will include me). I do not fear death nor think about it nor am I depressed with the diagnosis.

Nor did I suggest all myeloma clinicians make careers. But it is very evident that haemaologists have grown to specialise in a very rare disease myeloma over the last decade or so because of the drugs and clinical trials. In fact one of the telling posts on this forum was someone asking whether trials had become more important than the patient.  That happens only when careers are being made in this rather special area due to the biology of the disease and drugs getting more effective and targetted. There is nothing wrong in that, but that does not put us as individuals first always.

As to the post code lottery, well something is very amiss if I am being told something different by a myeloma specialist to some patients on this forum. So please think before you judge. Your experiences might be good but mind have left me dismayed. Death I can face. Not being given the drug regimes that other countries who are lead players in this area are using in their guidance ( on treatment stratification for different risk categories) is not good.

NICE has always been difficult (a friend with breast cancer had a drug in France not approved ny NICE here- she had a longer life than most others in the UK with her treatments). Clinicians should not have to make a case for choosing a drug for a particular patient. That is my view.

I do not seek to say more about my disease or self  because for me that is not necessary in my journey.  I am glad all of you who have replied have had such a great one- may it continue for you all.

 

 

 

 

 

[eveParticipant]

Hi. Dusk

Well I would not call my husbands journey great,far from it,I also do not think being late diagnosed determines how long you will live,it just means that you have far more damage to your bone structure,it’s getting the Myeloma under control that is the hard one and that depends on what type of Myeloma you have and how aggressive it is.!!!

I accept what you say in terms of other countries,they seem to have access to new drugs quicker than we do,trials on Pomilidomyde stared in Spain and France some time ago,and are only just starting here.plus of course drugs coming from America.
I think money does come into question,plus NICE seem to not be answerable to anyone,consultants can leave themselves open to being sued if they do not follow NICE guidelines,this was questioned in parliament about 6 months ago.

I can understand how you feel,specially as you are just starting your roller coaster ride,but Myeloma UK are working hard at marketing Myeloma,and the people who have Myeloma want to help as much as possible.

The research and dater from trials,may give people a chance who come after many on here,I was the person who asked has research become more important than the patient,I think it is a fair question???,we need to see individual patients BMB results treated individual against treatment that is most suitable to the person,not treated as NICE see fit.
A good example is patients who become high risk the future is very bleak for them,because as soon as treatment stops the Myeloma comes back,so research should be looking at controlling the Myeloma rather than looking for remission,possibly by the means of maintenance ,at the moment Revilimid is the main maintenance drug,some people last for years,others do not.

Dusk just remember you have the right to be treated any were in this country.
I would have liked to know more about you and what type of Myeloma you have plus were you are being treated,I wish Dai was alive,he could have told you about moving from Wales to Nottingham,If Eva comes on she could tell you she lives in Scotland but is treated in London,people come from France to be treated at the Marsden,so if your treatment is lacking name and shame them,I do not think my own hospital is one of the best,but I do think the treatment we receive is the same as many of the top hospitals,but they do not have possible the best equipment for testing.funding is the problem.Many wards have benefactors so have more money,but this is usually in top hospitals.

So please understand many on here have been having treatment for years,and having good results,some are still having treatment and having poor results,many choose not to have treatment,many can not have any more treatment,plus we loose some of are cyber friends,we all know what the future holds it’s how we get there that’s important.

I refuse to worry about tomorrow and spoil today so what ever time my husband has left we will make the most of that time,and I refuse to give up hope because this is what this site is about.wishing you a good journey Eve

[FrancesParticipant]

Dusk – my reply to your post came out sounding crosser than I meant it to. I wasn’t trying to denigrate your experiences of treatment – which have obviously been poor, just to say that mine, so far, have been nothing but good. And that I feel that the only way to put up with this nasty condition is to look on whatever positive side you can find. I hope you have a better time to come

[duskParticipant]

Although I agree sometimes media headlines can be misleading, often there is particular study or research which underpins some trends reported. In an age when it is being daily noted the funding of the NHS is unsustainable I do not ignore trends- as I have not been a great user of health services until now.

I  think this article  is very relevant to myeloma- as it is age that is used as cut off  for some treatments (from earlier studies of risk / progession/ survival in myeloma of an age cut off for treatments often applied):

http://www.theguardian.com/society/2014/jan/24/older-cancer-patients-not-treated

The studies comparing the newer effective drug combinations in induction therapy and long term maintenance  have not yet been compared with stem cell transplantation following induction therapy – in terms of PFS or OS it seems. There is a view from the USA that stem cell translanation may not confer an advantage with newer drugs.  So if age restrictions are still going on (more here in UK and for those without private insurance in the USA possibly) then this needs to be re-assessed.

I do not think the separation of myeloma into younger and older groups (even on the forum) is helpful in todays age. Many work long after retirement and have families when much older (I know of 50 year olds starting families).  I do not finnd this segregation of the old and young on the forum gives a good message.

 

 

[CarolsymonsParticipant]

I agree that the NHS treatment is very regimented with no individualisation as in America. I do not even know if cytogenetics (FISH test) have been conducted in my case so am I low or high risk? Nobody has told me. It seems that unless you chase up a trial, everyone gets CTD…which I do not see used for first line treatment in America. Even in Australia where there are so few patients, Velcade is in the initial treatment. Here with the NHS it seems to me that to get Velcade you must take and fail 6 cycles of CTD. Then there’s the delayed transplant dilemma. I am in hospital now having received my stem cells back 2 days ago, but have I chosen the best path for my myeloma? Honestly I do not know! I believe that Dusk has made some valid points in his post.

Having said all of that, I am grateful for the treatment I have received here in London, especially when I see the extreme difficulty some Americans have in raising funds for their treatment when they have no medical insurance. The NHS, whatever its faults, is truly an amazing service.

Carol

[eveParticipant]

Dusk if you are a Myeloma person,please think about putting you name plus picture,and explaining your story,because that,s what this site is about,helping people!!!!

Stop trying to scare people,this Myeloma is scare enough,specially for people who do not prefer to know a lot about it,it’s there choice,educate yourself by all means learn as much as you can,it will hold you in good stead.

As for age,well older people seem to respond better than younger people to Myeloma!!!
As for an under 50 would love to be in it,so I could swear and shout and not be told off!!!lol,but I do not think that is what it is about,it’s for younger people with different issues,how to help children,job issues,plus what effect the Myeloma is having on family life,it’s not a bad thing.

You need to stop and think what you are saying,so if you are genuine ,come out of the closet.Eve

[duskParticipant]

I’ m 100% a myeloma diagnosed person and I do not aim to scare people- but I believe information is power.

I am relieved personally that clinicians now tell you ‘as it is’ rather than hide things from you as they once did.  I know that getting my life planning in order is vital right now. I would not want to leave a mess for others to deal with- I do have a strong sense of responsibility to others too.

I realise some may not want to know details or question and that is their choice and right. This forum does not require people to know or give their details- it should not be the pre-requistite to share ones experience, as we do not mostly know each other except in terms of myeloma.

I am not going to come out – yet- because I could be ‘recognised’ , not necessarily by other people on this forum unless I have from my past someone who also myeloma and is a member who recognises me.  There are things about me which could be ‘recognised’ and that is not what I want right now.

I have an aim to write my ‘story’ before and after myeloma, which is rather upsetting even for a strong person like me, because it speaks volumes and possibly explains how I came to have myeoma- but this depends on many things including my wellness being there and needs me to be more detached than at present. I am working on that.

So sorry Eve I cannot ‘come out’ on the internet- because other people around me are vulnerable. I have maximum information about my myeloma picture, unlike many as I note from Carol Symons. But that does not mean I am not telling others what I have. I tell everyone I know or meet, because looking well does not mean one is well and sometimes one needs help.  Some friends have been great- keeping more contact with me, others seem to not even ask how I feel, for fear upsetting me perhaps, or maybe fear for themselves (many of my friends have had pre-mlignant conditions or cancer previously).  So please forgive me if I cannot do what you ask.

[ellenModerator]

 

Hello everyone. I thought I would step in as this discussion is becoming a bit heated. There is nothing wrong with lively productive discussion, but can I please remind you all to be mindful of each others feelings. Posters and viewers of these forums are likely to be patients, family members or loved ones, some of whom may be in a difficult place emotionally, so reprimands and accusations are not helpful

 

Can I gently remind you that there are forum guidelines and the registration terms of the discussion board state:

 

“We reserve the right to delete messages containing strong language, defamatory or abusive comments, commercial or advertising content, or any other content we find unsuitable or inappropriate.”

 

To clarify a few points:

 

Younger patients:

Whilst the majority of people with myeloma are over 65, the under 50 section came about in response to users of the forum who had particular issues such as telling young children, coping with work and finances etc.

 

Access to treatment:

Haematologists in the UK are guided by national guidelines on the diagnosis and management of myeloma. We are all very fortunate to be able to receive free treatment on the NHS but the cost implications means that the NHS must be mindful of what drugs, and in what sequence, it can make available to patients free of charge.

 

In addition to drugs approved by NICE (National Institute for Health and Care Excellence), a number of drugs for myeloma are also available through the Cancer Drugs Fund in all areas of England. For more information please contact my colleague Kate on kate.morgan@myeloma.org.uk

 

Myeloma is much more treatable than it ever has been and with the introduction of new drugs, hopefully patient outcomes will improve further.

 

Early Diagnosis:

Myeloma UK knows how important it is to raise awareness of myeloma, especially amongst GPs and we have, in the last couple of years run a campaign “Take 2” specifically to help raise awareness of myeloma with GPs. To date, over 4,000 copies of the myeloma diagnosis pathway have been sent to GPs across the UK. If anyone would like a copy of our diagnosis pathway to take to your GP, then please do let me know.

 

We are also producing a video for GPs about diagnosing myeloma and will be publishing a report about the impact of late diagnosis on patients and their families.

Thank you

Ellen

(Myeloma Information Nurse Specialist, Myeloma UK)

• This reply was modified 10 years, 3 months ago by  ellen. Reason: Add sig

[petesilverParticipant]

Thank you Ellen for your posting think it put everything I into perspective, I think most hospitals do their best with in the constraints of what Nice put out, but unfortunately money always comes into it somewhere, people keep going on about the America and how the drugs are always available but what they don’t realise isd the large sums of money they have to pay.

Still I think this posting has had a negative effect on this forum, as most of the posting are of a good or positive nature and long may that continue.

 

 

 

 

 

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