[DaiCroParticipant]

I followed the CDT course as my frontline treatment and it worked wonders for me. I started treatment with my Kappa Light Chains at 3,500 and they were down to 'negligible' after 2 Cycles… I was declared in 'full remission' after my fourth and final Cycle.

There are a few here that will recall my dilemma at the time as I examined my choices (we are supposed to have choices, although I don't often recall them being put forward as such). I wanted to look at the possibility of leaving my SCT until the CDT remission showed signs of relapse but there was so much opposition from the medics that it became a non-choice. Janet just wanted the best for me and she was swayed by the certainty proffered by my then consultant… so down the immediate course of preparation for the SCT we went.

As it happened my Hickman Line became infected and leaked… which led to two things… firstly we had to wait 4 days for a surgeon to take out the line and replace it with another in the same procedure and secondly, that delay led to me missing my stem cell harvest… a) because the effect of my GSCF injections had worn off and b) there was no room in the harvesting schedule and c) It was getting very close to Xmas and we had literally run out of time to start the SCT without it carrying on over the Xmas period… which I understood was not a good idea as the wards would be down to skeleton staff and that staff would be made up of part-time/agency staff.. All of which meant that my harvest and transplant was cancelled until after the holidays… where we would begin the whole process again.

Which we did… and to cut a long story short I finally got in for my SCT in March 2010… at which time I was still in full remission… giving me 6 months in total from my CDT with no end in sight.

I don't know just how long my remission would have lasted but it could well have been another 6 months… or more… we will never know.

The reason for telling you this is because I believe it is important for us all to understand the thinking behind the development of our treatments.

Namely:

[b]Frontline:[/b] Initial treatment… with the aim of bringing the MM under control to the point where preparation for a Stem Cell Transplant (SCT) can begin.

[b]SCT:[/b The procedure meant to give us our best chance of 'long term' remission.

[b]Velcade:[/b] Inserted here, not as a 'stand alone' treatment but as a preparation for a second SCT for those who have sufficient cells in store. Because NICE (the UK funding body) have approved Velcade at this point it will still be given to all… regardless of qualification for a 2nd SCT and regardless of the fact that a. n. other course of treatment might be better for the individual concerned. I see Velcade as a bit of a terrier… set upon the MM to bring it to heel… and because it can be a tad wild it often leads to small injuries to the patient (by way of long term side-effects):-|

[b]Revlimid & Dexamethasone: [/b] A 'stand alone' treatment… a 'therapy' rather than a 'chemotherapy'… R&D suppresses the MM, allowing the patient a chance for a decent quality of life for as long as the suppression works. Because R&D is a relatively new treatment the median for survival is changing all the time as long term data becomes available… at the present it is approximately 30 months.8-)

[b]And then:[/b] Whatever is available in trials (currently Bendamustine and Pomalomide (sp.)) or a mixture of previously successful treatments… including the kitchen sync.

I was told at the time that if I decided to go with the CDT and postpone the preparation for my SCT that there would be no guarantees that funding would be available… possibly, probably even… but no guarantees.:-(

So much for MM being an 'individual' disease.

Humour me… if I had taken up the mantle of choice and I had chosen:

CDT (until relapse) – SCT – Rev & Dex – Velcade – Whatever… it might have proven very good for [b]me[/b]… as an [b]individual[/b]. But there is no room for manoeuvre in the NICE programme… or if there is room it is not looked kindly upon and so it is not offered as a 'choice'.:-|

To be fair I imagine that the present succession has been thought out and agreed as the best progression… but it is a bit 'supermarket medicine' for me… based on funding criteria and does not allow for that which might be best for the individual.:-/

Just thinking aloud.;-)

Dai.

[eveParticipant]

Dai

We know there is not any choice,
One because at the start no one tells you your options,it is only after a sharp learning curve,it becomes apparent there just might have been better options,but when the word Cancer is mentioned ,with no cure,your just grateful for any treatment.:-/

Most of the European Countries start on Velcade,Looking back at Slims CTD he did 6 cycles only to be told the Myeloma had gone up to 80% in bone marrow,yes they were surprised,yes they changed his treatment to Velcade .
Did they treat him as an individual?? the answer is no.I have to ask myself if Slim had been a private patient would he have been given Velcade to begin with???and the answer is yes

So money and nice have a lot to answer for.NHS have guide lines and consultants are paid by the NHS,If you live in France or Spain for example Velcade is first line.Who said are NHS is the best????

I am trying to think of the name of the lady who was a radiographer who had Cancer and raised over 2 million for Cancer Research and was refused drugs worth a few pounds to give her more time.Her husband and daughter are carrying on her work,but what has not been said is in the early years there was a known fact that people who were exposed to imaging had a great % of getting Cancer.So duty of care did not mean a thing to the men in grey suits,and they have the power of life and death.Love Eve

[EvaParticipant]

Hi Dai,
Eva here. I can see what massive thought you've given to our options. Thank you for that.I really dislike writing emails or letters – I will try to answer this one – but if you'd like to have a chat, I'll have more to say about options. Feel free to email me on evayouren@lineone.net and we can exchange phone numbers if you wish. I can do free calls at any time during the day or night.
I have a similar dilemma to you: I really really wish I had hung around to see how long my first remission from CDT would be. I guess I got panicked into the transplant. In some ways it was my fault; I hadn't done the research at that stage and just wanted to be 'told' what to do. I am no longer that person.
I think it's true that NHS doctors are following a kind of 'flow chart'for treatment. There is some leeway though – if you have severe PN you might be put straight onto Revlimid rather than Velcade – if you've had a blood clot from a high dose of Rev you might be taken off that family of drugs altogether. This has happened to a friend of mine recently. There has been no attempt to reduce the dose or take more care with avoiding clots, and my friend is running our of treatments. Deviating from that flow chart often reduces rather than enlarging our options, so I can't get too excited about it.

For lots of complex reasons( don't necessarily want to write about them), I've had to go private. I'd kind of forgotten I had medical insurance. I took it out because I have two sons, and I had visions of them being helicoptered somewhere distant after a serious accident. It didn't happen, but the payments continued via direct debit.

I absolutely had to have a second opinion after my first relapse. So I spoke to someone on the phone in London at an Oncology Centre in Wimbledon.
It was Prof Ray Powles – someone who has worked within the NHS most of his life. He has great affection and respect for the NHS and used to be at the Royal Marsden. Once retired, he's gone private, and helps to look after a marvellous facility there with lots of staff from all over the world. If feels like attending a meeting of the United Nations, but without the squabbling.
I live in the Highlands of Scotland and because my husband's an author, we have a base in Edinburgh, though we don't live there at the moment. I don't wish to be treated in Edinburgh( Again, I don't think I should go into it in this email). My consultant in the Highlands is lovely and well-informed. However,I've done the maths. With the population density here, there aren't that many myeloma patients, and especially one like me, who has become oligo-secretory and is possibly on the way to non-secretory, and who expects full disclosure and discussion of blood test results etc. So, Prof Powles sees me about once every three months and he liaises with the guy at Raigmore, in the Highlands. I get my zometa here once, a month. The local GP surgery does a blood test once a week and it's sent off to the Highland guy, and every few weeks, a vial is sent off to London. Yeah, I know it's complicated. I think most of my treatment is covered by insurance, with some bits still NHS.
Prof Powles is lovely and we can talk properly. It suits me that he's a polymath and doesn't mince words. I don't know how much longer I can fly to London though: it's exhausting, expensive, and we stay with friends who are probably traumatised by observing the side-effects of my chemo. We can't afford a place in London.
I've read that the NHS has with second worst survival rates for most cancers in the EU.( Poland worst). When I've tried to find out why this is in spite of our huge expenditure – I've been offered the idea that we have late diagnosis, so worse results. I doubt that's the full picture.
In the future, treatment will be more individual for MM, but it'll take time for that to filter through. There is no Utopia anywhere. People in the States can lose their homes and they can have huge co-pays for treatments that are free here. Those who have top insurance there can have great choices, but even then, they sometimes have to hire attorneys to fight their battles.
In the future, treatment will be more nuanced, sometimes with a number of drugs at a time, and with gene testing and other tests to see what we are likely to be responsive to. But will we still be here?
I wish you the best, and I'd love to have a chat. Again, thanks for raising these issues.
Eva

[tomParticipant]

Hi Dai

Well you have had some good thinking out loud time my Friend as for my treatment I think it was a great shock and i told him "You dont want me to decide what treatment I want are you?" when he gave me lots of leaflets/books :-/ where i was told that he and his team would decide the best road for me so I followed his lead and have to say its worked for me (now looking for some wood to touch?)

I aint that thick but am sure i wouldn't know what would be the best option for me? did I have more than way i could have gone?? I dont know all I can remember was saying that I wanted to hit it hard and fast before it gets a good hold of me:-D

Keep on thinking out loud dai as it makes me think more of "Should I"

Tom "Onwards and Upwards"

[wendyduffieldParticipant]

Hi Dai and Eva
Dai thanks for starting this very interesting post and Eva for your very interesting comments.
There is definitely a pathway from which there appears to be little scope for deviation. When I raised the issue of whether the SCT was the best option for me given the trend in the States against, my consultant nearly had a fit! She said it was the gold standard treatment and she would be negligent if she didnt give it to me. Well I have had it and am 7 months post transplant and in remission for the time being. I was initially on the myeloma XI trial and randomised to thalidomide but had to come off the trial after 1.5 cycles because it didnt agree with me, partly due to skin rash and partly due to severe neuropathy (not just peripheral). So guess what was offered to me off trial? Yep Velcade, known to have PN as a side effect. When I asked why I was being given Velcade they said that I might not get PN as a side effect with Velcade – I might react differently as it was a different drug. That I suppose was possible. I asked what else I could have and they said nothing else, just this and not revlimid because they wanted to keep that option open for further down the line. So I had two cycles of PAD (Velcade, Dex and Doxorubicin) and that brought my light chains down to normal range and my bone marrow to less than 10% and also gave me neuropathy!
Just after my SCT I was recommended to have a mini allo transplant so I guess that is possibly thinking outside the box by my very pro transplant consultant. I made the decision to have it but ultimately a match couldnt be found. At that time I found out that I had a chromosomal abnormality called mono 13 which meant a poorer outcome and may mean I could relapse more quickly. Because of this, I asked if I could have revlimid as maintenance therapy but was told no as no defintite evidence that it prolonged remission (I think there is) and also to keep it in reserve otherwise running out of options but clearly the main reason is because there is no funding.
When I was first diagnosed, I asked what was the best treatment for me but my consultant couldnt give me a striaght answer. I now realise why. Because its not about whats best for an individual its about what is available through NICE or dependent on whether I went on the trial. To be fair to her,she wouldnt be able to predict what treatment would work either as everyone responds differently and has different side effects.
So I am not at the stage of first relapse yet and I hope I wont be for a long time but have already experienced the effects of the funding criteria.
Eva, y0u dont say what treatment you are on since you relapsed and whether your Prof is recommending a second transplant, I would be interested to know.

Take care all
Wendy

[EvaParticipant]

Hi Wendy,
My Prof is the first guy who did an autologous transplant in the UK. He was very keen to give me a second one. I had my first one in Edinbugh. I said 'ok' but let's try some other stuff first. He accepted that, especially as I had to get the myeloma down first anyway.
My first transplant lasted two years in CR then six months in a grey area because I was becoming oligo-secretory. My Edinburgh doc wouldn't send freelite test off to Birmingham and was waiting for my paraproteins to climb much higher.He said I wasn't oligo-secretory. Definition of that is someone who's a low-secretor, and therefore a bit difficult to monitor. Somehow all my instincts told me this was wrong. I kept thinking, what if I'm now secreting only a tiny fraction of what I did before, and am in real danger? I complained about bone pain to Edin Doc – he suggested tennis elbow and wrote letters to other consultants( including the Highland ones and my local Gps saying there was no way I had myeloma in the humerus (arm). I suspected I did. As the pains increased I got more and more scared – also scared to speak to other docs as they had instructions about my arm which made me look a bit bad or mad or hypochondriac or something….. Edi. doc also cancelled my zometa when Highland hospital wanted to give it to me, saying I didn't need it. Again, my bones and instincts were telling me I did need it – had never had it.
Anyway my arm shattered one early morning in May last year.It happened by itself, not as a result of a knock. Pain was worse than childbirth. I was in my Highland place. Very little pain relief as paramedics couldn't locate vein for cannula. I was screaming in agony and taken to Raigmore Hospital in a helicopter. Eventually they operated on me and surgeon said he'd scooped lots of myeloma cells out of my arm. I could have avoided it all and had a pre-emptive op if I'd been less frightened to ask for help as a result of my Edin Doc's stand. I've now got four metal plates in arm and have lost quite a bit of mobility.
Anyway, that's why I needed a second opinion. It was verified that, indeed, I had become a very low secretor, and that the freelite tests I was begging for were essential. In London I had lots of tests, including PET scans I'd been refused before and a BMB with sedation. It was discovered I had over 70% myeloma involvement in all my marrow and needed immediate treatment.
My four day stay in London turned into an eight week stay. The Prof agreed I could go back on CDT without the C ( don't know why that bit was left out). I really wanted to know if it might just work.It did. Went into CR after eight months. Am now on consolidation treatment with just Thal. Now there's a nice push and pull with the Prof about how soon I'll have the transplant – but we respect each other and we talk straight, so I'm no longer stressed about medical consultations. Prof has a lovely assistant who answers my questions on phone if I get anxious about something. The hospital in the Highlands are informed and kept up to date in case of emergencies. I do miss living in Edinburgh though as husband and I don't drive!
So, now you've got an idea of where I am treatment wise at the moment. The Edin doc is a myeloma expert. I forgive his mistakes, but not his certainties. We all make mistakes, and myeloma is so individual.
Eva

[wendyduffieldParticipant]

Hi Eva
What a horrendous time you have had before your relapse was properly diagnosed. Glad it is all on track now but I am horrified by the lack of care from your edinburgh doc, you are more forgiving than I would be,just as well you had private medical insurance

Wendy

[Author]

Posts