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Hi Helen, How good to hear from you again. I am so sorry that you appear to be relapsing but it does seem the medics still have a variety of drugs still available for you. I wish you all the best with them.
I haven’t actually started my iRD yet. I had a clinic appointment this week gone and my new consultant ( lovely man he is ) said they will ring me within in the next 2 weeks with appt to collect drugs etc. I did get him to agree to 20mgs of Dex instead of 40 as when I was on it at induction it caused so many side effects. I just hope there is no interference from NHS England stopping the ixazomib which happened to Michael it seems.
It seems awful to me that I feel so well (bloods fine) and my only problems is paraproteins. Ah well.
My very best wishes to everyone. Keep up the chat on here.
susie
Hi Helen. It’s good to see your name in the Forum again. I’ve been wondering how you’re getting on as I haven’t seen any posts from you for a while. I’m sorry to hear you’re relapsing again and wish you well with the Interferon, which I’ve never heard mentioned as a Myeloma treatment before.
Can I ask how you got on with Panobinostat? My husband has just been told Carfilzomib is no longer working for him and the general opinion of his consultants seems to be that that’s it as far as treatment’s concerned. Bendamustine and Cyclophosphamide have been mentioned but not with any degree of enthusiasm. He doesn’t qualify for Daratumumab because it’s licensed for 4th-line treatment only and he’s well past that. We’re clutching at straws here but he doesn’t feel ready to give up yet.
Hallo All
I’m a regular follower but rarely contribute because I live in the Netherlands and treatment protocols are different. I was diagnosed in 2010, considered too old for sct, and received Revlimid, also as maintenance, for the next 7 years.My numbers started rising and I went onto Carfilzomib. The effect was remarkable. After 3 months the m-protein went down from around 26 g/l to 3 g/l.but unfortunately my legs and feet swelled up so severely that I had to stop. I have had no treatment for 2 months so I expected my numbers to have risen but at my blood test last week they had again gone done, to 1 g/l. Next appointment in 3 months-it’s great to be free of treatment for a while.
I hope you will be able to take advantage of Carflzomib before too long.
Hello Patsyann (and all),
I think your post regarding your husband’s lines of treatment running out is a) worrying and b) shows (as Micheal Ashton has previously remarked), how far the UK (NICE and NHS England) are behind many other countries treating MM.
So what is the outlook regarding your husband? As I said to Helen, surely ‘they’ just can’t leave her (same issue) or your husband ‘high and dry’? I say this because NICE define MM as ultimately a very serious chronic condition – and when their fairly rigid straight jacket of treatment options run out, I’m not sure they have many answers left??
And incidentally, I’ve never heard of Interferon used as a treatment for MM either. I can’t find a reference to it in Myeloma.uk’s list of approved NHS drugs.
Very best wishes,
Peter
Hi Peter
Sorry for the delay in replying. It’s been a difficult week. My husband was admitted to hospital after a really bad night with new pain which the consultant thinks is new bone damage as his pp levels have been rising again. The Carfilzomib has probably been holding them in check but is no longer really being effective. Revised pain relief has helped a lot and he’s had scans to determine damage. This time last year, when Pomalidomide failed, it was suggested he consider palliative care only and wasn’t expected to survive this long. We asked for a second opinion and have been lucky that Carfilzomib has worked but we’re now back where we were. Bendamustine is a possibility but I think the concern is for side-effects outweighing benefits. We’ve been told Daratumumab isn’t an option for reason mentioned above, and also that it tends to be more effective offered at an earlier stage. It does seem harsh that, because it was only licensed last year, patients who had already had more than the 4 treatments specified should be excluded, especially when other options are limited by that stage. We’re in Scotland so can’t blame NICE or NHS England. I’m not really sure why Ixazomib or Panobinostat don’t seem to be options but it may be because of side-effects or, in the case of Ixazomib, similarity to Carfilzomib. He’s been through a lot in the way of side-effects so it is a consideration after more than 5 years. I have to say that we really can’t fault the level of care from everyone from consultants to nursing staff and what happens next will be his decision. But limited access to trials and drug combinations as well as limits on access to some drugs do seem to mean that you can run out of options rather more quickly than you expect to given some of the optimism about “new treatments coming along all the time”.
Pat
Hello again Pat,
Thank you for your post especially considering your husband’s circumstances. I’m sure that the tremendous difficulties he’s going through are familiar to many patients in the past, and unfortunately will affect many MM sufferers in the future if the current rigidity regarding the availability of novel drugs (and their combinations) continues. As I said in an earlier post, NICE define MM as a chronic and eventually very serious condition – this being irrespective of the individual’s treatment pathways previously chosen. So for them (NICE), it’s almost a ‘self fulfilling prophesy’.
However, there are a few things that have confused me since I was first diagnosed with MM. When I had to start drug treatment, I was on VTD. This lasted 8 cycles, and brought my light chains (flcs) down to single figures. I only have flc MM and no abnormal paraprotein peak. Remission was at this very low level for over a year, but then the flcs started to climb again. So, I got interested in what actually constitutes a ‘relapse’? I read papers from the International Myeloma Working Party (IWP) where the criteria for relapse was ‘kind of’ defined – mainly in terms of results from blood tests. I happened to have 3 consultants at the time (one was leaving, her temporary replacement, and then my final long term Dr). And it quite surprised me that none of them rigidly adopted the formal relapse definitions. They all based their views on their subjective assessments of the numbers and trends as shown by the blood test results. This is probably a good thing, since their criteria for swapping over to a new drug therapy is more ‘relaxed’ than if they adopted the formality of the IWP’s definitions. But I don’t think it’s fool-proof. I know of one MM patient who insisted on being kept on a certain line of treatment, albeit her Dr was about to give up because of increasing PP levels. A little while later her PP levels plateaued out and remained that way for months. Although with her, there was no new bone pain, as in your husband’s case. You say that Carfilzomid is no longer effective? So I’m assuming this isn’t just a ‘blip’ or a ‘laboma’ rogue result? I’m just a little confused/cautious in this whole area, especially since it’s end-of-life considerations we’re talking about. I’ve no idea why Panobinostat (or Ixazomid) aren’t options for you? Panobinostat’ is effective and can be taken on a 16 x cycle of 3 weeks/cycle. The side effects are well publicised… And I would have thought that if your husband can tolerate the drug, then this line of treatment can last for a year, with the hope that new treatments will eventually be available for him. You say that that the final decision is up to him, and that is a very difficult position to be in. And, unfortunately, you are correct – the remaining lines of treatments for patients can be very restrictive, and time runs out too quickly. I do hope there’s still a suitable treatment pathway available for your husband, and please keep us all informed of his progress.
Very best wishes, Peter
Dear ALL
I have received a reply from Rosemary Finley ,Chief exec of myeloma uk regarding myeloma tracker and even more important issues .In her long letter she confirmed IRD is the first novel triplet available for patients at THIRD or FOURTH line funded by cancer drug fund (RUN BY NHS ENGLAND).good news Susie >! currently daratumumab,bortezomib and dexamethasone (DVD)is under appraisal by nice with second meeting soon . BUT she shares our frustration that the effective treatments are licensed but not routinely available . (But its going to be a long battle without fundamental changes in nice and nhs england not least with the present adverse financial situation..my words reading between the lines )
myeloma tracker or its rebranded version should be available now restructuring of staff has taken place
Helen,Interferon was used originally in initial studies on stem cell transplants 15+years ago ? in mm and also in hairy cell leukemia and i think in treating kidney tumours ??? it has significant side effects .. i know but that’s a long story.
Lets hope dvd is allowed to be given at any stage of relapse as well as primary therapy . lenalidamide is likely to granted for maintenance intially after successful first induction but least the concept of maintenance therapy is recognised .
Just hope all goes well for you all in the meantime .
Michael
Hi Michael
Thanks for your very interesting and informative post providing an update on the drug approvals pipeline.
I think that importance of the policy work which Myeloma UK undertakes on behalf of patients cannot be understated. Working with the other blood cancer charities to effectively lobby organisations such as DoH, NICE, NHS is vital.
Hope this helps.
David
Hello Michael
Thank you so much for that update. Very interesting.
I have started my rid so I have to hope it works well. Apparently I stay on it until it stops working. What has surprised me is the Revlimid is being delivered to my home by a
Private pharmacy. The trust apparently saves VAT costs because HMRC says private pharmacies can claim back VAT but hospitals can’t. How unfair is that.
Best wishes to all
susie
Hello Michael (and all),
If I remember correctly Michael, in a previous post you said you were a retired NHS Consultant? Assuming I’ve got this right, then obviously being on the ‘inside’, you will be much more familiar with NHS England and NICE processes than ordinary MM patients, who wouldn’t normally be able to understand these tricky (and often major) constraints that are imposed on us by these two organisations. So thank you for your very useful post and for Myeloma.uk with their ongoing technical and ‘political’ work regarding the application and the use of new drugs. Obviously these kind of interventions are an essential feature of treatment progress. So well done!
Best regards,
Peter
Thank you for the good wishes. We saw the consultant on Wednesday and he’s going to apply for Daratumumab so now we just have to wait and see what happens. Just knowing that there’s the possibility of further treatment has given us a lift. Will keep you posted.
Pat
Hi Pat,
I am so pleased for you that they are going to try Daratumumab for your hubby, I can understand the boost it must have given you both. This disease is the pits isn’t it, although I keep saying to myself I could have something worse.
I’ve just started my 3rd line treatment of iRD, so have a while till I know if it’s working well. So far it doesn’t seem to be affecting me much. Whether that’s good or not remains to be seen.
I wish your hubby all the best.
susie
Hi Susie and everyone
I was a member and regularly posted on here……but…I left because some of the posts went missing….and others only half posted…never understood how half my post posted the other half shot into cyberspace lol….that said it looks and feels those problems have been fixed.
So onwards and upwards is back……onwards and upwards
Tom x
Hi Tom.
Glad to see your “onwards and upwards” back. I was on the Facebook group but found I was compelled to be checking it several times a day so decided to come off it. The death of one of the regular posters was the final straw,
Teresa
I’m another who finds the new site more difficult to navigate than the old one. I do use the Facebook page but also find the notifications of death difficult and would prefer to use a site that dealt more with medical matters and treatment advances than in psychological support, because I’m in the fortunate position of getting that from family and friends.
Perhaps we could refocus this forum onto being more info based, with links to latest worldwide research results into everything that touches on any aspect of myeloma? As I’m in good health and only diagnosed 6 months ago, in spending time trawlling for information- it would save time for others if I put links here, and for me if others did likewise, in sure I’m not the only one trying to learn as much as possible about my foe, myeloma.
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