Hi Paul, I suspect the panel are suggesting an allogenic stem cell transplant using donor cells, possibly from a member of your family who is a close match to you, or from an unrelated donor- you may have heard of the Anthony Nolan trust? It set up a donor bank for stem cells, I think there are 2 now in existence.
This type of transplant is not usually offered to myeloma patients because for the majority of us (as older patients) it has a high risk of death. However it can be an option with younger patients such as yourself. Not all allogeneic stem cell transplants produce a cure for myeloma, and there is a risk of graft versus host disease, but some patients have remained in remission indefinitely, so are functionally cured.
I would want to see an experienced myeloma transplant consultant before making this decision, but I’m guessing that will be available to you as transplants are only done at the major hospitals.
Let us know what you decide to do, and how you get on.
I have experienced these stabbing leg cramps towards the end of lenalidomide maintenance cycles. I was prescribed quinine sulphate, which worked (but can have serious side effects so may not be for everyone). After a few months I realised that the quinine capsules contained E171 colouring which is banned in much of Europe as it damages the gut microbiome, so I stopped taking it whilst looking for a replacement. Actually the severe leg cramps haven’t returned over the past two cycles without any medication.
If they come back I’ll discuss amitriptyline with my Dr as a possible treatment.
If your husband is young-for-myeloma, and has high risk features in his myeloma diagnosis, he may be being offered tandem stem cell transplants. Ie two within months of each other. This has been found to keep myeloma at bay for the longest time for this group of patients. You cannot really compare how you feel during induction therapy (what you husband is going through now) with how you feel during SCT. As patients and loved ones we are told everything that can go wrong during SCT, and it would be unethical not to, but in reality few people get lots of complications, few people get no complications and most of us get a few. Whilst in hospital I only felt poorly for 3 days, and felt fine by day 37. I wasn’t in remission before SCT, but was by day 60, and am still there now. My neutrophils and white blood cell counts have been low since SCT so some collateral damage, but do I say it was worth it? Definitely. Would I have done tandem transplants if they’d been advised? Yes I would.
I now have complete faith in my consultant, so if he advised a course of action I’d be likely to agree, but it does take time to develop that degree of trust.
Just for information, it is legal to import lenalidomide, or any other medicine, into the UK, as long as it is a 3 month supply, or less, and is for your own use, or that of a close family member. An import tax is payable, but is inconsistently requested. A UK prescription can be used, but is not necessary in India if you have a copy of a letter from your hospital which confirms your diagnosis (such as the ones sent to your GP).
As you say this can differ, in several respects.
For me, with some kidney damage, I had an extra day between chemo (melphalan) and the return of my stern cells.
I had visited a friend during her SCT who had been violently and continuously sick from day 1 for over two weeks and went home feeling poorly.
For me the process was much more benign. Days 1&2 I felt ok, it’s a bit weird being in hospital, being woken up several times a night, so a bit tired, but perfectly well.
Day 3 diarrhoea kicked in but still felt well
Days 3 to 8 felt reasonably well, just tired and could only eat what I fancied.
Days 9,10 & 11 waves of nausea, but little actual sickness, just needed to sleep most of the time. Could still eat, but had to eat as soon as I felt hungry or I was sick.
Day 12 by lunchtime could feel myself getting better hour by hour and knew I was over it, an elating feeling.
Someone in my support group wasn’t sick once and had no diarrhoea at all.
It really isn’t possible who will react in which way- I’ve always been such quite easily so expected a lot of sickness, but didn’t (until after discharge which resulted in being readmitted for a few days, but even then I didn’t feel really poorly)
However you feel, you will be well looked after, the staff in the units used for SCT are wonderful.
The protocol used in the myeloma XI trial, which was the study that highlighted the benefit of lenalidomide maintenance to Myeloma patients after SCT, was/is 21 days then a 7 day break. Ask the Dr who advised taking it without a break why, there may be a reason in your case.
There are not yet many patients in this treatment as the NHS in England, Wales and NI haven’t approved it (due to cost) & Scotland only approved it a few days ago. Patients with private health insurance, deep pockets, or prepared to source it from overseas are the only ones currently on this treatment.
I hope you get on with it well, in certainly relieved to be on it. (21/28 cycle)
It’s heartening that NHS Scotland have agreed to prescribe lenalidomide maintenance after SCT. Not helpful for those who have already been through the process, but at least no other Scot will be left without it. It’s a great pity patients in England, Wales and NI can’t also receive it.
(Scotland has also approved KRd as second line treatment, good for Scotland and well done for Myeloma UK championing our cause)
I hope that you recover quickly from your SCT. Statistically average remission times are 30 months for standard risk patients, 60 months if you can get access to lenalidomide maintenance. This is currently being considered by NICE and although they agree on the medical evidence, for financial reasons they have issued a draft “no”. Myeloma UK are working hard to change their mind before the final appraisal later this month. Trying lenalidomide maintenance would definitely help you at this point.
Some people have very long remissions with or without maintenance, but of course some have much shorter times. I know that people have posted of 8 year remissions without maintenance, but that is statistically unlikely, as is a very short one of just a few months.
It is a good sign if you go into full remission, which usually takes up to 100 days but can happen within the first year. As with all things myeloma there are patients who have never gone into remission but have long periods of stable disease after SCT lasting years. It all means it’s difficult to extrapolate useful predictions from other people’s experience, but it’s also important never to give up hope.
The average age of diagnosis of myeloma is around 70, with diagnosis peaking in the 80s. So in myeloma terms your friend is on the young side.
SCT suitability is assessed according to overall health. Most people under 70 and many people under 75 are offered SCT in the UK as it statistically offers the best chance of a long remission.
Although we have to be told of all the things that can happen during the process, and of all the things that can go wrong, most people have only a few side effects, very very few have lots of complications. One person in my support group who is in the same age group as your friend had her first SCT this year, didn’t have ANY side effects (apart from loosing her hair), and she is now in remission. I think it’s rare to sail through without even diarrhoea or nausea, but most of us who are offered a second one, willingly go through the process again. For me in my early 60s it was much easier than I had envisaged, it kicked me into remission within weeks of receiving the transplanted cells. On the down side my neutrophils never recovered to pre SCT levels, but that has had no consequences for me so far. (18 months in).
On the NHS in the UK we do not have access to all the latest drugs medically available. If your friend chooses not to have a SCT, there will also be consequences later down the line. He or she is likely to be offered lenalidomide in place of SCT, but the myeloma is statistically likely to relapse more quickly.
I think the balance of risks with SCT is fairly fine if your friend is already in remission and has private health insurance cover that will cover all drug costs. There would be a clear advantage for SCT if NICE agree to offer lenalidomide maintenance after SCT as statistically this virtually doubles remission times and increases overall survival times. Unfortunately for us although they agreed with the science, they couldn’t agree the finance, and have issued a draft “no”, the matter is scheduled for later this month.
I hope this helps.
I hope the monoclonal antibody approach is the key for your myeloma. When it’s known that 2 drug combos work better than single drugs, (& 3 better than 2, and in the USA major myeloma centres are now inducting with 4 drug combos) it seems positively archaic, and counter to clinical evidence, for UK to be giving single drug therapies. And as we are all being told in relation to Covid, dexamethasone is such an inexpensive drug. I hope it works well for you Sue, and you don’t have to face these treatment dilemmas again for a long time.
Mulberry (Jane)
Hi Sue
I feel that I owe you my current remission, and the peace of mind I have knowing that I am on the most appropriate treatment for my myeloma. I hope I can help you in return.
Your predicament shows that the current NICE regulations are just far too rigid to humanely deal with an individual disease such as myeloma.
As you know it is legal to import up to 3 months supplies of medicines for your own use (or for close family member) so UK patients do not need to travel overseas (unlike US patients for example). In India prescriptions can be issued on the strength of copies of letters noting diagnosis.
I (& some other UK myeloma patients) have been buying lenalidomide through Nirav Sangoi (nirav.dialhealth@gmail.com)
He does this sort of thing & arranging health tourism for Western patients, as his business. I have always found him fair, reliable and trustworthy.
I don’t think he can obtain a daratumumab generic yet, but I’m sure Dex is another matter. In terms of myeloma drugs he can obtain generic versions of thalidomide, lenalidomide and pomalidomide.
I think you need to discuss the arrangement with your myeloma consultant. As co pay is done in the UK, it is theoretically possible to provide one of your own drugs (ie the Dex) and receive the rest of your treatment on NHS. A year ago some haematologists who were not happy to do this now are, certainly in respect of lenalidomide maintenance. If your consultant was able to monitor you whilst taking Indian lenalidomide before, hopefully this won’t be an issue for you. For others reading the thread, you may need to change haematologists to find one who can operate a co pay system. This seems easier in the larger hospitals. It is vital that your treating haematologist knows exactly what you are taking, so his or her awareness is fundamentally important.
I hope this, and the Dex, works.
So pleased to hear that you were accepted on a trial Mike, and to hear that some trials are going ahead despite Covid. Here’s hoping it beats your myeloma back down into submission.
What have your side effects been so far?
Best wishes
Jane
If you pm me I will send you details of the gas spectrometry tests that can compare generic drugs with the originals.
My family and I contacted tens of uk drugs labs trying to find one prepared to do the tests on an on going basis (for a small group of UK myeloma patients acting collaboratively, so we were prepared to pay commercial prices if needs be). However we had absolutely no success. The companies that gave reasons admitted that they rely on pharmaceutical companies for work, so couldn’t be seen comparing one company’s products against another.
In the end through word of mouth and personal favour I managed to find someone able to do it. The lab wouldn’t do it commercially though, didn’t charge, and would not do it as an ongoing piece of work . I can give you the results I was given, but cannot help with identifying a lab for you. You may have better luck than me, or more chemists in your social circle!
Actually once I’d started taking the generic lenalidomide I was reassured by having the same minor side effects I’d had from revlimid, and I no longer feel the need for ongoing testing. (There is a UK study by Oxford university that showed 4% of drugs in a major UK hospital pharmacy were not what they purport to be, so to my mind there is no such thing as a risk free drug).
Now NICE have issued a draft “no” to lenalidomide maintenance, but have accepted the validity of the research data that shows Len maintenance improves standard remission times after SCT from 30 months to 60 months, we patients know what risk we are taking NOT having Len maintenance. These Indian companies have produced generic drugs which will be sold in the UK and other countries once Revlimid comes out of patent.These companies already produce other drugs we are prescribed.
I felt nervous, but between a rock and a hard place when I first imported generic lenalidomide. Now it feels no more risky than any other aspect of having myeloma, and I am very very thankful that I found Nirav and for the Indian pharmaceutical industry.
I’m sorry to read of your mum’s reaction to her myeloma drugs. I presume that you haven’t had a reply because her reaction has been much more extreme than most of us experience, and given we are not medically trained, it’s difficult for us to give useful advice.
I hope that your mum’s health has improved since your post. If you are still worried, I would ring her myeloma nurse and / or the myeloma UK nurse.
It’s not uncommon for patients to have a reaction to lenalidomide initially, this usually gets better after the first cycle- but not a reaction as severe as your mother’s.
Hi Rosary
If you are still having a problem getting in contact with Nirav Sangoi, please PM me. I have contact with him through WhatsApp, I could ask him to contact you, if this helps.
Jane
