[duskParticipant]

Hello Debgill68

You say the MRI showed no bone damage- which area was surveyed by MRI?  If the pain continues I would go back to your GP / consultant and report this they will decide further investigation MRI if required.

Dusk

 

[duskParticipant]

Hello there Joe

I am impressed by the speed at which treatment was commenced for you.  How was MM discovered for you? Were you given a whole battery of tests e.g. BMB/ cytogenetics  before the diagnosis was confirmed?

It is a very personal decision as the route to go. As you will note from the forum contributors  each will have their own ways of assessing what path to take- with the help of information from their consultant. There are emerging views about the way MM treatments may go in time, but CDT and stem cell transplant for those deemed fit enough and young enough is still the main  English NHS route for longer remission when successful-  as many on this forum will attest.

It is always worth asking questions until you feel confident in the choice you will make.  It is possible to defer the auto transplant depending on whether your consultant thinks the response to CTD allows this. As others have stated here once you make a decision go with it fully as that is the best you can do for yourself.

Good luck.

 

 

[duskParticipant]

Dear Stephen

I would feel unhappy that forum members should ascribe anger in some patients as due to fear. I am angry- but have no fear of the disease (even for BMB the doctor was amazed I did not move/ flinch at all when she went in twice having not got the sample first time- save from muttering ‘bloody hell’ ) or what it means for life expectancy. My response to the diagnosis was not negative but entirely practical and remains thus.

But I remain angry at the way assessments have been undertaken and the way treatment is being viewed / presented. I also am angry that myeloma suffers are said to have options in terms of treatment choices when in reality this is a lie because of NHS funding restrictions. The purpose of a nationally funded NHS is now in question and the 2o+ year life with myeloma have I noted only been reported from th odd US patients. So perhaps I am more questioning as to why?

I note you said some patients lacked 24 hour contact number, maybe their experiences are additionally less positive than yours in general and that the anger stems from feeling this. I have not found the doctors in the same unit to be necessarily alike in their consultations with me.

Dusk

 

 

[duskParticipant]

For information- Scotland’s equivalent of NICE has approved Velcade for initital treatment.

The issues too are more complex than often realised. Most poorer people do not have pensions invested in big Pharma so it only adds to the matter of not making drugs available to all in need and as I said these are political matters.

I  am personally very very worried at what options are available for my own pending treatment. I had fallen for the false notion that I would be given an individalised approach to treatment, allowing all relevant issues to be taken into account. I also belived I would be given real options based on current knowledge, (IMHO The USA and England are not so different save the cost restrictions/ insurance issues), how wrong I was. This is causing severe distress to me personally which I would rather not wish on anyone. When I read posts  on this forum I feel very sad for some and happy for others.

[duskParticipant]

Dear Francis

Although Velcade is used now more frequently as part of the initial treatment regime, in e.g. USA, NICE have not approved it in England for this, although some consultants may be using, e.g. by applying for special dispensation to the Cancer Rssearch Fund. Velcade (and many novel drugs by Pharma) are deemed expensive, so the NHS regime is not yet including it for first line treatment,  (CDT is the standard and has been for long).  It is mostly available to those participating in trials where these exisit.

You need to ask your consultant what regime he is suggesting for you and why- if you feel you want to understand the approach he is taking with you.

As people have noted on this forum although there is talk about individualising treatment for myeloma patients, as each is different, this does not match the reality of experience when treatment is given. After relapse from initial treatment in England novel drugs tend to be used more – aside from there use in trials.

These are political issues. The prime minister says he is waging a war on cancer- but not making available readily all the drugs which could be helpful or which are effectively used in other countries.

 

[duskParticipant]

What should make doctors in the NHS and the public really angry is how these internationally dominant pharmas have restrictive practises for copying their drugs for all to benefit who need them. They are never taxed enough to ensure that their profits do not go to CEO’s and rich shareholders ;- after all the drugs will be trialled on the poor before being approved for use by regulators.

Also England is not making available for front line myeloma drugs which are effective and form the norm in the US and elsewhere in Europe, unless a consultant makes a specific representation for an individual- few do this and trials are the only way to access novel drugs by an large in England. This does not help us myeloma sufferers get the best for us as individuals. Infact it is evident forum members are aware that instead of the options that should underpin treatment for individuals we are rarely, if at all, given these. This is just not right.

[duskParticipant]

Dear AndyG and fellow MM journey forum members

Please do not assume I lack detailed knowledge or understanding of myeloma (or clinical issues). It is not helping me to feel confident about joining the forum and perhaps I will now decline to post after today.

Not all people who look at the site or even contribute will be laymen in regards to what might be the best course of treatment for them personally, some will come for hope / re-assurance because they need this in an uncertain field. We all have different reasons for looking at the site, let alone posting on it.

Dear Jeff605

I fully understand where you are coming from. Please never think wanting to ask more questions of your myeloma team or seeking answers (even if not exactly given clearly) from your consultants somehow makes you the problem.  I feel angry that you should be made to feel like this- this is the one shot at life we will have and we have a right to probe and understand and be fully involved.

Please seek the answers- write down your questions and e-mail them to the consultant /  team nurse if need be.  When you meet at clinic ask again if you have not had a reply earlier. The NHS may be over loaded but I have my own view from experience which suggests things could be much better for all patients than sometimes is experienced by those using it.

 

[duskParticipant]

Hi Jeff605

When I first posted on this site I raised some areas of controversy which did not go down well,  it was even suggested I was not a real MM person (I wish).

Like you I too have noted that posters who regularly post seem to be more content and positive with their assessments, treatment and doctors.  That is great for them and is to be lauded- trust is important for this disease.  But I wonder if people like me, now reluctant to post, are asking the same as you here.

MM has only in the last decade or so had treatments that give promise  with improved outcomes/  survival. I think the truth is that consultants / centres may sometimes come from different perspectives on treatment on what is an ongoing learning curve still for some.  That is why being informed, from reading and understanding ones own particular health  situation, seems to me vital when asking questions or discussing treatment with  the consultant. The difficulty is getting enough relevant information for essentially a disease with a multi-disciplinary perspective., when only one aspect is covered

I think of  centres of excellence as those hospitals with the modern techniques of detection /assessment of MM and who are involved in clinical trials at least, with myeloma specialising haemologists as the oncologists taking the lead. Thye also would have true multi-disciplinary teams or contacts.  Maybe Myeloma UK could list these places, but I do not think it would be allowed to do this.

 

 

• This reply was modified 10 years, 9 months ago by  dusk.

[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.

[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.

 

 

[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.

 

 

 

 

 

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