[eveParticipant]

Hi Peter

I try to look for positive than negative ,We have all been were Dusk is angry and confused,I think your story Peter is a an excellent example,over 10 years,not great remissions and bone damage and you are still here.

Information and hope is what this forum is about,but there also has to be space for people who need to air there feelings,if they are genuine they still need help. I think it is very important.
With any open forum you will get confrontation in some form,but I think the knowledge gained out ways this,your story is a good example,it gives hope,but there has to be a place for people who are not doing so well,there story might be negative because of there situation ,but any information might just give them some hope. Eve.

[andygParticipant]

Welcome to the horrible world of myeloma Dusk.
As someone who has not been on “great” myeloma journey I’m going to through my thoughts in the ring.
First at diagnosis aged 53 I was told myeloma is a very treatable but incurable disease. I was started on the usual CDT with the view of SCT a few months later.
Now to cut a longish story short I’m still alive 27 months later having been through all the frontline treatments where none of them worked for me. So I’ve never got to SCT. The only regime that dampened down my myeloma was RCD ( Revlimid ) and I was on that for 22 cycles before it was deemed to have started to fail. All though Revlimid is now widely used when I started on it it was rarely prescribed. They are now trying me on Pomalidomide though that has been put on hold due to me having a recent hospital stay. Pomalidomide is not on the NICE list as yet so my consultant had to apply for it through the Cancer Drug Fund. At a cost to the NHS of nearly £11000 every 4 weeks! Which is about £3000 more than Revlimid cost.
New drugs don’t necessarily mean better drugs. There have been lots on this forum who have got to SCT using CDT as their frontline treatment with only 6 cycles and gone on to long drug free remissions. Others get there with the help of Velcade after CDT didn’t quite manage it.
Everyone’s journey with this horrible disease is different.
America is a different health system to ours and is driven by money. Got insurance and you COULD be ok got no insurance tough! It’s not all bad in America but personally I prefer our system.
The benefits of SCT v drugs is a debate that is going on right now and who knows which way that debate will end. No one is forced to have a SCT though at the moment it is still recognised as the standard treatment.
Post Code “lottery” is something I haven’t come across regarding the treatment of myeloma. Though just because I haven’t come across it doesn’t mean it doesn’t exist!
My final thought is use the front line drugs first and keep the newer novel drugs for later when you’ll need them because no matter which drug you have, SCT or no SCT, you will relapse your myeloma will mutate and you’ll need the newer drugs then. You want as many drugs as possible in front of you not behind you. Then hopefully you may get to see myeloma down graded to a chronic disease.
I’ve been a member of this forum since 2011 and although there have been similar journeys no two journeys have been identical.

Every day is a gift
Make sure you use them

Andy xx

[petesilverParticipant]

Well put Andy, you said it as it is, the problem with MM is that no two people are the same, treatment for one does not always work for someone else, for me I have had nothing but good treatment some works some don’t.

As I have said before there is an element of trial an error in the treatment of MM and I don’t think we can get away from that but I am sure the haematologists do their best with what drugs are available to them.

I hope all you current treatment goes well.

Peter

[VickiParticipant]

Hi all

Apart from all of the other detail, eve, one of the messages that I did pick up was that slim is no longer being treated. I’m sorry to hear this as he has gone through so. Ugh, as have you in another sort of way. Wishing you both all the best.

Our experiences have been very positive and we have both been very grateful,for all of the support we have had from the nurses here on the forum, you cyber friends and the medical and nursing and consultant teams at the hospital. Myeloma is such a scary condition that can creep up unnoticed. It must be hard for those diagnosed so we all go through times of anger, frustration and the unjustness of it…..but we go on and damn well grab life by the neck! And try to enjoy it.

Best wishes to all…..it’s a hard road 🙂

Vicki and Colin x

[VickiParticipant]

Andy

Hope you are feeling better after your stay in hospital…..soon to be back not the drugs to keep the mm at bay? Your thoughts in mm are always thoughtful,and sensible, and boy have you gone through the mill. A beacon for us all…..hope you have the holidays plan as you need more beer and sun to have a go at the pps!

Peter as a long remissioner…..is that a word. We look to you as that hope and light at the end of what can be a b dark tunnel!

Vicki and Colin x

[KimanayaParticipant]

Hi all, I currently live in Houston, Tx and have been reading this post with interest. I worked in the NHS for ten years prior to moving here so understand NICE well. My husband is the Myeloma patient and is treated at MD Anderson, a renowned hospital for cancer treatment. It is true that new drugs are available here but there are many hidden costs. My husband achieved VGPR with Revlimid, first line treatment. When he started to show an increase in para proteins, he was placed on Carfilzomib which bought him down some and then has just been through STC. I have lost count of how much money we owe in medical bills, I could paper a room! Expected cost of STC is over $250,000. People regularly go bankrupt here for having a medical condition through no fault of their own. The cost of drugs is astronomical! There are other problems too, vacation time is standard two weeks paid, any other time I have needed to take off to care for my husband has been unpaid, this soon adds up. STC has been unsuccessful, we are waiting to see what the next step will be. The only thing I know is that it will be costly with all our out of pocket costs. Just a view from the other side of the pond!
My family is all in the UK and we are hoping to move back there next year, We need our support network to be closer and as the years go on, I miss the UK more and more. I never thought I would miss the NHS as much as I do! Good luck to you all on this crappy journey we have been given!
Kim

[CarolsymonsParticipant]

Kim

I agree with you. In my experience the NHS has been nothing but AMAZING! I have dual citizenship (Australian and British) but do not believe that Australia’s Medicare system would have provided me with the care I have had here in London. Actually, in Australia people are almost forced to take out private health insurance or pay an extra Medicare levy in their taxes. The public hospital system which is Medicare, is nowhere near as good as your NHS.

Carol

[dickbParticipant]

I think too many take the NHS for granted and have too high a level of expectation from it. It was always meant to be health care free at source but so many forget it has to be paid for somehow. As some on this site have bemoaned NICE and the restriction on available drugs, your post Kim should help remind them that things elsewhere are not always better and just how lucky they are not to be in the US or other countries that have purely an insurance based health system.

As I’ve said before about the system in Germany, the care is fantastic, the administration seems to be very poor, my wife has to pay a health care premium out of her wages for the family and if she wasn’t working, I’d be stuffed. So those NHS doubters perhaps ought to join one of us out of the UK and then they might start to realise just what a great service they are receiving without additional cost.

[petesilverParticipant]

In respect of Kimanaya’s  posting it almost put all this argument to bed could any of us afford to cost of living in the US, it puts the treatment most people receive from the NHS is good ,if not you are at liberty to change hospitals.

 

[HelenParticipant]

Hi all
I wonder how, if we do not yet have a mechanism or way of deciding what drug works best for which type of myeloma, there could be any other way than the one we have now?
I know that NICE’s ‘one size Fits all’ in the first instance with CDT until proved ineffective is unwieldy but as Andy has said, it suits some people and they can get years of treatment free high quality life afterwards.
Before NICE and specialist haematology it was my experience that patients got what the consultant preferred, often not backed up by any recent challengeable research, at least this way the new research is put into the public domain relatively quickly, and we do have the cancer drug fund to resort to if we shout hard enough.
Saying that, this is a costly disease to treat and as a taxpayer NICE has a duty to save my money if the evidence for a drug is only going to work on a very small number who are impossible to identify yet.
I took the RCD trial route with SCT and maintenance Revlimid to follow and only got 15 months from it. It’s early days since I finished the Velcade, but it was a much fiercer drug to deal with physically and I would have preferred the RCD/CDT route again had it been possible.
Dusk …you do not say what treatment you think you should have had. Why is this?
Love to all
Helen

[VickiParticipant]

Hi all

I’ve caught up with this thread and there seems to have been a lot of high feeling at the start. Treatment and choices is always something that will need to be made by nhs and of course what we make as part of the journey. In our circumstances I’d like every penny to be spent of treatment and cure for myeloma, and find it now. However there isn’t enough money to go around. Hard but true. I’d settle for someone saying treatment makes this condition treatable for life, with a good quality of life. It’s the uncertainty and worry about what if that I find difficult as the supporter! Colin will have different views to me I expect as he is the one with the condition and the t12 fracture!

Sometimes it feels dark and lonely and other times positive. One thing that is common, no two people are the same so treatment and outcomes remain so. What ifs will never give us the real answer. The only thing to hope for is a cure but our consultant tells us they are a long way off…..so next best is good maintenance. I am trying not to put posts on this forum as I don’t sleep after as I start worrying in detail

I realise we need to hear warts and all sometimes but also some light relief is also good for us all. Dai had such a lovely way of describing things….even the cdiff! Let’s help each other rather than increase the load, but with a hint of realism

Best to all

Vicki and Colin x

[andygParticipant]

Hi all
Vicki – your right there does seem to be a shortage of light hearted posts of late. We all seem to have dug into our own little MM trenches and battling away the best we can. With little sunshine to talk off.
I blame the drugs for taking the edge off my beer taste and just when I get it back that bloody Revlimid decides it’s done with me and I have to move on to Pomalidomide. A new routine and new drug for me to get used to! Well I can tell you my beer tastes fine now 😉 just wish I could keep out of hospital long enough to get to the pub.
Anyway had my tea round the pub tonight managed a pint too, lovely, had my Dex earlier today yep started cycle 3 today lets hope I get through without the now customary stay in hospital.
Off to the lakes shortly hmmm better hide the thermometer 😉
Helen – I hope your not over doing it at work.
Will you be going to the Newcastle info day? It’d be good to catch up and have a good old natter. Steph and I will be going as this year it doesn’t clash with our trip to Greece that is already pencilled in.

All the best everyone.

Every day is a gift
Enhanced at time with alcohol – cheers

Andy xx

[VickiParticipant]

Hi Andy and steph,

Glad to hear you’re getting the chance to travel, even with the hospital interruptions! I didn’t mean to sound like I was saying we need to lighten up….it’s a v serious subject! It’s just that sometimes it scary and we all need someone to throw a lifeline in here and there 🙂

Glad you got to the pub for tea and some beer. That’s the one thing Colin hadn’t gone off….in fact he seems able to drink most things again now. We have some friends who are well into real ale….we went to the Falmouth beer festival with them….except I don’t like beer so my first words to the real ale experts was….do the do wine here! 🙂

Have you finished your house renovations? We’ve finished ours and it’s nice to have the house to ourselves again….no builders

We hope your next phase of treatment proves effective Andy, you deserve it! Interesting article in the myeloma newsletter about a research discovery in terms of clonal/ cell grouping that talks about some common trends that might assist with tailoring treatments to individual needs and reduce the situation of myeloma cells becoming resistant to treatment. I think I’ve got this summary right, that’s the way I read it anyway.

Keep well all

Vicki and Colin x

[docmikeParticipant]

Hi All,
I have watched this post with interest for the last few weeks and I think all of you have made valid points which are not necesarily contradictory . Dusks initial post is about his concern about what drugs are available in the nhs to treat his myeloma, not about the care that the nhs delivers and should be viewed as legitimate universal concern not a negative post .Albeit it does seem he has had some bad experiences so far which have added to his concern and may have coloured his view .
As you see I am doctor(qualified in 1971 and treated patients with leukemia in my first house job in the dark ages when that was the most feared diagnosis) and I have had smouldering myeloma for over 5 years(lucky me so far ). Until I had a normal MRI it looked as though I would go on ctd as BMPCs were about 30% in 2008 ;5 years later I Think I would now be offered ctd/crd trial with bortezemib if non responsive? is that progress?
Obviously I regularly review the myeloma research and have been encouraged by the relative explosion of new therapies being developed for myeloma . Indeed I think the potential for developing a cure or very long term control has become a realistic prospect . However my own personal view (and i am not a haematolgist and could be wrong) is that the first line treatment is critical in that it should aim to acheive the deepest response which could translate into the longest remission by which time even better treatment will be available .Generally speaking the newer agents seem to have less side effects according to the studies reported so far .
In an ideal world if my myeloma kicked ofF (awaiting blood results at present ) i would like to receive carfilzomib and pomalidomide …… in your dreams Michael!!!!
I think nice(what a misnomer!!)is presently deliberating about the availabilty of bortezimib as a first line agent for all.This could be a decision to reflect where we are in the therapeutic league .More trials for first line agents will be required.
I hope thats not too negative a view but realistic .
Mike

[CarolsymonsParticipant]

Hi Mike

Even in Australia Velcade is now available as an up front treatment, but here in the UK we are still limited to the old regime of CDT..cyclophosphamide, dexamethasone and thalidomide. In my case, while CDT worked to bring down my paraprotein I never achieved a normal light chain ratio. Would that have been different with Velcade…who knows? Also my paraprotein returned after only 3 weeks off CDT…again would Velcade have made a difference? All of the research seems to indicate it may have. I am now 8 weeks post transplant and still left wondering if I made the right decision to go o transplant, but again here in the UK, it almost seems that once you are on the myeloma train you stay on the prescribed tracks….CDT followed by SCT, even though many American specialists are not recommending this course of action. All I can hope for now is that having finally achieved a normal light chain ratio and again no paraprotein detectable 4 weeks after transplant, I maintain these results.
Fingers and toes crossed!

Carol

[Author]

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