[ottoParticipant]

Hi, would be so nice to hear from anyone..

I was diagnosed with myeloma in 2018 age 44, with 12/15% found in my bone marrow. I had treatment followed by SCT (with complications). I was fortunate as my employer offered health insurance and was prescribed Thalidomide as a maintenance January 2019. Now having paid for my own insurance for two years (was made redundant), taking Thalidomide for three, do I come off it? My premium is tipping just that too much now.

My specialist originally said at least two years he would like to see me on Thalidomide. My insurance is now so high, I dont think I can afford anymore and I’m struggling to decided if I pay the ridiculous amount or risk coming off. I have been in remission for three years but on the Thalidomide.

Wondering if anyone els has come off and what happened next. My original levels was so low, were I had originally been diagnosed with MGUS a year before Myeloma, but not knowing what rate it transformed, its a worry.

Also if it did return, what treatments are on NHS!!

[kh0305Moderator]

Hi Otto,
I’m one of the forum volunteers and my dad was diagnosed with MM back in 2013.

I’m afraid I can’t offer any insight into whether or not you should come off the maintenance treatment or not but would definitely discuss the pros and cons with your medical team.

In terms of NHS, dad has always been treated on the NHS and after his SCT he was on lenalidomide as maintenance which he continued taking until his relapse in 2020. He is currently undergoing treatment for the relapse, started with DVd (daratamumab, velcade, dexa) which didn’t work for him and is now on ixazomib, lenalidomide and dexamethasone. I don’t know what maintenance he will be on following this.
Hope this is helpful. x

[courtneymyelomaukModerator]

Dear Otto,

I’m sorry to hear of the difficulties you are having with insurance and the cost of thalidomide.

If you would like to discuss this you would be welcome to call the Myeloma UK Infoline on 0800 980 3332. Whilst the team are not able to give medical advice, they may be able to assist with understanding your options and how to discuss this with your medical team to ensure you have all the information to make the decision.

The Infoline number is 0800 980 3332 and is operational 9am – 5pm Monday to Friday.

Courtney – Myeloma UK

[mulberryParticipant]

Hi Otto
Your other option is to import generic Thalidomide. This is legal in UK (although not into USA)- you can import 3 months supply for your own use or that of a family member.
I am one of a number of myeloma patients who have been importing Indian generic lenalidomide for the past 3 years (ie after its efficacy had been established but before NICE protocol changed to allow our doctors to prescribe). My consultant and GP are aware. This costs me c £120 per month, as opposed to £4000 for Revlimid lenalidomide.
I had some batches tested initially and minor side effects convince me that the drug is genuine. If you want further info, PM me. I am aware that my contact can supply Thalidomide, and I have identified a reputable Indian pharmacy that can supply too, although I haven’t gone down this route myself.

[ottoParticipant]

Thank you all for your comments. This really helps.

[mulberryParticipant]

I have been discussing with my consultant the relative merits and risks of continuing maintenance in the long term. I’ve now been on lenalidomide maintenance for 3 1/2 years, albeit on a lower dose than standard (5mg rather than 10mg because of low WBC counts).
Trials have shown a risk of further cancers after lenalidomide maintenance. (I don’t think any studies have been done into thalidomide maintenance as it’s not usually given).
However theyeloma XI trial (of 2042 patients) showed a very significant lengthening of ‘remission ‘ from an average of 28 months with no maintenance to 50 months with lenalidomide maintenance. Although the full effect on overall survival is still not known ( for the brilliant reason that so many patients in all arms of the trial are still alive) it’s now clear that those receiving maintenance are more likely to be in the survivors group, so the research team are now concluding that there are overall survival benefits.
There are patients who probably don’t need maintenance, after all there are a few UK patients who were diagnosed two decades ago, long before the current drug options. However until minimal residual disease is measured in clinical practice, our doctors cannot know what our relative benefits or risks of continuing long term maintenance are. Minimal Residual Disease , MRD, is the tiny number of myeloma cells that remain in the bone marrow, even in patients who appear to have had a Complete Response, so have no paraproteins and normal light chains. MRD tests look for less than 1 myeloma cell in 100,000 bone marrow cells. Although this seems a tiny measurement, it seems to be significant- if we are minimal residual disease positive, it’s a stepping stone towards relapse.
I am told that there are no definitive answers yet, but Myeloma XI trial (which closed to patients in 2017) will go on giving us and our doctors statistics and information which will benefit us for years to come.

[ottoParticipant]

Hey Mulberry,

Same, I met up with my consultant the other day. He would like me to continue but happy if I decided to come off. He is confident that if I relapsed, the NHS now has some great drugs, not much different to private now.

I have been taking 50mg Thalidomide for nearing 4 years now. Im on a 21 day cycle with a week off and tolerating well. Only side effects is my toes are a bit numb and tiredness, but I take in the evening to help with that. Im going to the menopause now too which doesn’t help.

I dont believe there is much in way of studies on Thalidomide long term effects. I guess the way I see it, is because I have myeloma, im going to be at risk of other cancers anyway.

I don’t think maintenance was available on NHS when I was first diagnosed, and that it is now means it must be making a difference which is great; like you have mentioned, there is more data now. We just gotta hang on in there for more great drugs available for us.

Until I am confident and very sure about coming off, I think im going to continue with the Thalidomide for as long as I can, even if I do feel like my body shouldn’t have all these toxins anymore.

I do feel I need to talk through more, so might give the team a call. Always good to talk…

Thanks again for all the information you have shared, its very helpful.

All the best
Kim

[mulberryParticipant]

Hi Kim,
You could ask your consultant if having MRD testing is a possibility. If you are MRD negative, (so no trace of myeloma in your bone marrow), it may be relatively safe- or absolutely safe- to come off maintenance. If you are MRD positive, you may prefer to remain on maintenance.
Jane

[ottoParticipant]

Great thanks Jane.
Ill find out from him. Its a minefield right!
Kim

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