[jillspikesmumParticipant]

I am now 60. I was diagnosed 2 yrs ago, but took ages (4 different lines of treatment) to get to point where SCT ( Sept 2020) was considered possible, because my Myloma was ‘aggressive’Completed the 100 day recovery, and told over phone by Consultant on 23rd Dec that I have achieved an unexpected “very good partial remission”. My concern is I am now on no meds other than 30 mg Oxycodone or Oxeltra pain killer, and monthly Bisphosphonates, soon to move to 3 monthly, and calcium tablets daily. Is this normal? Why am I not on any maintenance drug, like Lenalidomide? Is it because it’s too expensive. Should I be thinking about sourcing it abroad like others I have read have done so? So confused and feel completely cut loose and alone. I think I have faith in my Consultant, but I feel he’s not very approachable. Any help would be appreciated.

[gcoulterParticipant]

Hi

Firstly that’s great news about your SCT.
I’m guessing that post SCT you are now on a watch and wait and if they see any significant rises in your paraproteins then they will intervene.
I believe this is the usual approach after a first SCT. Don’t give you any meds unless they have to and avoid your body becoming resistant to them too early.
That is what happened my wife after her SCT. Second time round they intervened earlier to ensure her pps didn’t get too high. First time they also don’t know how long your remission will last so why put you on maintenance if you could be drug free for a few years.
If your SCT hadn’t have been so successful then you might be on maintenance.
Enjoy the (relatively) drug free life, and I hope it lasts for a long time.

Don’t forget you can always ring the Myeloma helpline, they obviously can’t discuss your particular case but might be able to give you some insights. They’ve also more time to do this than your medical team.

Good luck

Graham

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

[mulberryParticipant]

Congratulations on getting such a positive result from your SCT. As you may have seen the Myeloma XI trial, conducted with 1972 UK patients over many UK hospitals categorically has demonstrated that UK patients who have SCT benefit from lenalidomide maintenance. Professor Graham Jackson and many other leading myeloma specialists have confirmed this. This is now standard of care in many other countries. Sadly for UK patients, against expert advice, the NHS/NICE in England and Wales refused to approve post SCT lenalidomide maintenance (Oct 2020). Without it a standard risk myeloma patient has an average of 30 months before their myeloma is active again. With lenalidomide maintenance the average is around 60 months- still rising since the study was published as some of the trial participants are still in remission 9 years on…..I haven’t got the statistics for higher risk patients to hand, but the benefit is still statistically significant.
It is not true that maintenance is unnecessary. It is expensive and NICE has decided not to fund it. However it is available in Scotland on NHS and all patients with private health cover are offered it. It is possible to copay for one drug but still to be treated within NHS, however the cost to a patient for lenalidomide is around £4000 a cycle which is prohibitive for virtually all of us. I have been legally importing lenalidomide from India for the past 20 months, after SCT in Feb 2019. My consultant and GP are aware of this and I receive standard treatment as if the drug was prescribed. Currently I remain in Complete Response.
I use an intermediary to obtain a prescription from an Indian hospital and to collect and send on the lenalidomide. I have had two samples analysed by mass spectrometry, both were found to be biosimilars containing the right proportions of lenalidomide.
There is a risk taking drugs manufactured in facilities which are not regulated by UK drugs agencies, and there was a scandal when an Indian pharmaceutical company was caught falsifying some records. That company was Sun Pharmaceuticals. Despite this most of the aciclovir I have been given by NHS has been manufactured by one of their subsidiaries, Ranbaxy. The NHS prescribe many generic drugs, and many of these are supplied by Indian pharmaceutical companies ….just look at your packets!
There are a number of UK patients that I’ve had contact with who are importing lenalidomide from india. Some are importing straight from Indian pharmacies or through acquaintances, others using the intermediary I use.
It is legal to import 3 months supply for your own use or for a close family member. The cost including shipping is about £120 per cycle. If you want to discuss this further, feel free to PM me. I hope this is helpful.

[mulberryParticipant]

On reflection Jillspikesmum if you are refractory to lenalidomide (Revlimid) this may not be the answer for you.
If you are not being treated by a consultant at one of the major myeloma centres ( where SCTs take place) it may be useful to get an option either from Tony Blau (a haemo oncologist who has myeloma himself, who has a web based myeloma patient data and information programme (free) called All4cure) or Brian Durie of Myeloma Crowd/ Healthtree. These are both organisations set up in America, but both have international following and outlook.

[jillspikesmumParticipant]

Thank you Mulberry for your very full and useful response. You have clearly made yourself better informed than I have – I feel a bit embarrassed that I just put blind faith in my Consultant. I guess I’m going to have to pluck up the courage to ask him if I am on ‘watch and wait’ and what his thoughts are about my sourcing Lenalidomide independently. I’ve read on here that some Consultants refuse to treat/support people who have gone independent. I was very anxious about the 100 day phone call, which was very brief, and tried to ask as many questions as I could. I am concerned though that when asked about maintenance drugs, my Consultant didn’t even mention the benefits of Lenalidomide. Thanks once again, you’ve confirmed what I suspected was the situation. Im still very new to this Forum, and don’t know how I would go about private messaging you, I’ll have to experiment!
‘

[jillspikesmumParticipant]

Hi Graham, thank you Somy hope for taking the time to reply. It’s reassuring to read that initially your wife wasn’t out on any meds post SCT – maybe my Consultant is going to do the watch and wait approach (He said I was to have a blood test in 10 weeks time), but it would have been helpful if he had explained this. The feeling of being abandoned is quite hard to deal with after all the close attention after the last 2 years. My Consultant always discussed my “light chains” which were at 22,000 when first diagnosed, I wonder if this is the same as paraprotiens? Maybe I need to ring the helpline,

[mulberryParticipant]

Graham Jackson is a UK, but world renowned, professor of medicine who specialises in myeloma and had led on various Uk myeloma trials as well as managing myeloma patients in a clinical setting. (Although he is retiring from this). He works with Myeloma UK and I think is on the board of directors.

10 January 2021 he tweeted:
“The data for revlimid [lenalidomide] maintenance is overwhelming, 4 large scale phase 3 studies, a meta analysis, and several population/real world data including a great population study from Canada. Revlimid maintenance is standard of care.”

If patients are not offered maintenance after SCT they could ask their dr whether the doctor personally would want to take Revlimid (lenalidomide) maintenance. Who doesn’t want to statistically improve their overall survival, to live longer, after all that’s why we went into treatment in the first place?

[pippyParticipant]

Thanks everyone, this is the info I was searching this forum for.

[markjholdenParticipant]

Pippy

I’ve had two SCTs and I wasn’t given any maintenance drugs. I’m not sure if you mean lower dose chemotherapy or the standard penicillin, anti fungal and anti viral drugs that we all get?
I’m sorry not to be better informed.
I wasn’t so lucky with the transplants as I didn’t really get any significant remission and was back on chemotherapy within 18 months of both. They have assured me that having a donor STC that is 100% it improves the response to further treatment.

I think you are right in that they tend to react to the blood results and then treat it.

Best wishes to you both

Mark

[mulberryParticipant]

Brilliant news today, NHS/NICE have agreed to a draft agreement to prescribe low dose lenalidomide maintenance for mm patients after SCT. It seems it will be offered to all patients who respond to SCT in the future, and I hope to all patients who had SCT during the past few months.

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