[mulberryParticipant]

Today is a brilliant news day for those myeloma patients who have recently had, or will have, stem cell transplants. NICE have finally done a deal with the manufacturers of Revlimid (lenalidomide) and the NHS can finally offer it as low dose maintenance after SCT. Sadly it doesn’t apply to those of us who had our SCT some time ago, but it’s good news no one else has to go without it, as statistically it offers such an increase in remission time. Thank you too everyone at Myeloma UK who has fought our corner in this. A good news day indeed!

[user1203Participant]

Thanks Mulberry! My relative is three months post and due her tests to see how it worked. If (fingers crossed) it went ok, I would have thought she would be eligible but let’s see

[dickbParticipant]

As an indicator of what Revlimid can do I started with it as a maintenance drug in 2015 and only now has it stopped working, that is just under 6 years. The side effects I’ve had are stomach cramps and Diarrhea. It is very expensive, over 7000€ for 21 days here in Germany, possibly why it took so long to be approved. Please remember, it might not work for everyone and not everyone will be stable for 5 years.

[jillspikesmumParticipant]

Hi Mulberry, thank you for bringing this to our attention. I had my first SCT in Sept and achieved very good partial remission at 100 days. I have been very anxious about the lack of maintenance drug, and was about to email my Consultant to directly ask him if he would support me importing it from India. Maybe now I don’t have to, hopefully he will offer it to me soon. Can you direct me to where I can read the ruling for myself please?

[mulberryParticipant]

Its now on the main Myeloma UK website, discussion about it between Ellen watters and Shelagh McKinlay. Its also apparently in the Daily Mail & its definately on Graham Jacksons twitter feed, and in the Pharma Times yesterday.

[mulberryParticipant]

I hope the guidelines are stretchable to include patients such as yourself who so recently had SCT, have you contacted your consultant yet? It would be interesting to hear what he or she says.

[docmikeParticipant]

Dear All,
This is very good news but far too late for me but just to put thing s in perspective
I first needed treatment in 2015 and took part in the myeloma X1 trial which was the trial which looked at lenalidamide maintenance after asct ( I came off trial before asct ) By 2016 they were able to publish the data showing maintenance was effective in reducing relapse and indeed by then maintenance therapy was routine elsewhere in the major centres in europe and us . So it has taken four years to get better treatment funded !! the other major finding was that KRD was superior to CTD which remained the standard therapy until recently VTD was not specifically tested but is not used in europe or us
So progress but a hard slog for myeloma uk trying to get NICE to reverse its decisions i suspect .
Michael

• This reply was modified 3 years, 2 months ago by  docmike.

[mulberryParticipant]

Statistically myeloma remains inactive (“remission”) for an average of 30 months after SCT for standard risk patients without maintenance treatment. With lenalidomide maintenance myeloma remains inactive for an average of 60 months (& rising as some of the trial patients are still “in remission”).
Lenalidomide maintenance is not being offered to those of us who had SCT more than 100 days ago but still have stable or inactive disease. This is on the basis that it hasn’t been research tested on such a group of patients. It makes financial sense to NHS, but not clinical sense to me as all other myeloma treatments are given to us irrespective of the time we have had symptoms. Given there are moves to start treating high risk smoldering myeloma, to me post SCT patients seem to be in the same camp.
In the scheme of things there are not many of us patients in this scenario. Those who had SCT before Nov 2017 had the option of joining the trial. Patients who had SCT after Nov 2020 will be offered maintenance. So there are around 4000 of us whose only option to get the drug is to pay for it ourselves.Drastic. However this is an option that some of us have chosen.

[user1203Participant]

Hi mulberry where did you get November 20’from please? My mum had hers mid October and given all 100 day procedures are off due to Covid only have results of it it worked on Friday? Therefore would be horribly harsh to reject her given we didn’t know of it had worked beforehand

[user1203Participant]

Just read everywhere an unable to see the November deadline. We were quite optimistic that she may be offered it and this has completely thrown me

[mulberryParticipant]

Hi user 1203, I truly hope that your mum is offered maintenance. I was told by a consultant that they will have to state on the paperwork how many days post SCT the patient is, and that 100 days is the cut off, so I calculated the date from that. I hope at the moment with appointments being delayed, and the treatment only just approved there is some leeway. For all clinical decisions there is an appeal process if patients feel strongly.
I hope your mum is offered maintenance.

[mulberryParticipant]

I hope it turns out I was scaremongering.

[user1203Participant]

Could I please ask when your consultant told you this? We were not told this on Friday and I would assume consultants would have known by then

[nigelpParticipant]

I was originally diagnosed with solitary plasmacytoma back in 2016.Since then now been told it is multiple solitary plasmacytoma due to many plassmacytomas in differing parts of my body, but mostly head and neck.
It is a strange disease as nothing normally shows on my blood test and my bone marrow is said to be fine.

I have had radiotherapy and chemotherapy, which has previously worked however after my stem cell transplant,in Feb 19, I had a relapse with another tumour plasmacytoma on my neck which occurred in July 20, which inititially worked but reoccurred in the same place.
Now been treated with daratumumab since 291220.Do not know if it is working or how long it takes to show a response. Having a scan next week the swing consultant.
Never spoken to anyone with anyone with multiple solitary plasmacytoma or anyone been treated with daratumumab.Which would be good.
These plasmacytomas cause terrible damage I have had a broken nose,diabetes now on insulin due to one of the plasmacytomas blocking my pancreas.Radiotherapy causing a cataract in my left eye leaving me unable to see out of it.
Which has now been rectified due to a cataract operation.
I was told originally at my original diagnosis it was better than multiple myeloma.I am not sure that was correct.
I recieve all myeloma treatments but it does seem a differing blood cancer, which there does not seem to be a lot of information due to its rareness.
Hoping there is someone with a similar experience to talk to.

[user1203Participant]

Hi Nigel

You may be better posting as a new thread on the treatment page as only people on this one will see your post and it is about lelidomide.
If you go back one page to the treatment page and scroll to the bottom it will let you start a new thread where more people will see it.

I hope things improve for you as it sounds very tough. All the best

[Author]

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