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
Hi Marie
I had a nasty rash when I started to take lenalidomide as part of my triplet induction combination. That was very itchy and raised and quite alarming. I had to leave a longer gap between cycles but was OK to continue the drug at the same dosage and didnt get any further rashes. You havent specified which drugs your step father is on, but I’m presuming that one is an IMID, either Thalidomide or Lenalidomide (Revlimid)?
I suggest that he or your mother contacts his myeloma nurse to discuss this rash, its important for the team to know whats going on, especially when they are not seeing patients as much due to covid. Hopefully the rash will calm down with time and the creams suggested, but as it is getting worse, do ring again.
I’m sorry you have this worry.
Although the chances of MGUS developing into myeloma are only 1% per year, rising amongst older people, but still to just 5% a year, it is a worry hanging over your head. And the reason for knowing is to have occasional blood tests to check that there is no evidence of a rise in paraproteins. Personally I would press for repeat tests just in case you have a variation called MGRS, monoclonal gammopathy of renal significance. It’s still unlikely, but I would want to rule it out. With these blood disorders we have to become advocates for ourselves and it takes a bit of getting used to. I hope your kidney issues resolve.
Good luck with the trial Mike, I wish you every success with it. Thanks for posting, I think it’s important for all of us to keep the road ahead in sight, and to do what we can to make sure all patients have access to as many treatments as possible. I don’t think it’s always appreciated (by patients or by NICE) how well patients can feel despite having X number of lines of treatment.
Wonderment, are you having any success yet?
Your experience sort of reflects mine a bit. I started having tests in March, was diagnosed in May but didn’t actually start treatment until the very end of August, by which time my myeloma had moved from stage 1 to stage 2 and I was extremely anxious. However in hindsight as my paraproteins were yoyoing around (which is unusual, probably due to taking curcumin) I wish I had had confidence to wait. Having said that I was seeing a consultant by then. If you are not, I’d make a fuss. Lots of us learn to self advocate pretty quickly (or our partners do on our behalf).
I too have registered on healthtree.org which is a patient created database created last year to help myeloma patients to find others with similar types and presentation of myeloma and to help researchers with a ready pool of patient data. In this database there are a number of people who were diagnosed in their 20s almost 30 years ago, and still going.
These people were diagnosed before the major breakthrough treatments of thalidomide/velcade and bortezomib were available, which truly have been game changers in terms of life expectancy.
Added to this there are significant newer treatments available now, and plenty of ongoing research so there are likely to be new routes of treatment available such as CAR-t cell therapy, BiTE etc by the time you might need them. Myeloma is not yet curable in the UK, and allogenic transplantation is too risky for most myeloma patients as the mortality risk sharply increases with age, but it has provided seemingly unending remissions for some younger patients. Survival statistics seem to be up in the air at the moment, patients having maintenance after autologous stem cell transplants for example are living so long that survival benefit statistics are not yet available. Researchers who used to use overall survival as an end point in studies are now using progression free survival as patients are living longer.
Much more research is needed into the chromosomal changes that cause myeloma, but it’s already known that young people even in the days before current treatments, have lived much longer than middle aged people, who not surprisingly have tended to live longer than elderly patients who are more likely to have comorbidities.
A myeloma diagnosis is profoundly shocking at any age, and even more so for a young adult. However the diagnosis has also helped me to appreciate the important things in life and to grasp all opportunities (leastways before Covid), and I hope that it does the same for you.
If you are interested in the scientific side of myeloma I find an online group called Smartpatients (which has a myeloma subgroup) has some very interesting threads. Welcome to this group we all find ourselves unwilling participants in.
Dolly dream, it’s good to hear your husband is better during his week off meds. I found I needed to stick to a regime of half sachet of laxido a night every day I’m taking lenalidomide, if I miss a dose it takes days to get rid of the constipation.
Hi millie12
I can’t give you first hand experience but lots of people using myeloma Facebook groups seem to be doing very well with daratumumab, velcade and dex as a second line treatment. I’d personally not want to miss out the opportunity to have daratumumab at some stage. It is a monoclonal antibody which attaches to a specific protein on the surface of myeloma cells enabling your immune system to recognise the cell as myeloma and to get rid of it. This is a different mechanism to the drugs you (& I ) had before. I’d check out if you don’t have it as second line whether you will miss out altogether. Lenalidomide on the other hand, seems to be given at a variety of different stages, so if you can keep one of the drugs back for use later that would come into my decision making. The biggest side effect problem with DVD seems to be the potential for a severe reaction during or after the first infusion which is why it is done in hospital. Like every myeloma drug, there are potential serious side effects with DVD, but some people appear to be living very well with it, and their myeloma levels quickly responded to the treatment.
Hi Jillspikesmum
When I had my SCT last year normal afternoon and evening visiting times applied, although i would have been too tired to have evening visitors.
My visitors were restricted to my husband and one or two visits from my adult son and daughter. It was important to me to have my husband around for the melphalan and then return of the cells, and was nice to have some company for the first week after SCT. However after this, when at the most neutropenic (usually for a few days between days 7 and 12) I wouldn’t have cared less, I felt quite guilty that he was visiting and I just needed to sleep. I didn’t feel dramatically ill, just so tired. I welcomed having clean clothes and snacks being brought in, but I wasn’t much company. I hope your SCT goes well, for me it wasn’t nearly as bad as I feared, and someone in my support group recently sailed through without any diarrhoea or sickness whatsoever. We have to be warned about possible side effects, but most of us get through with fairly minor ones. But do take pads in case of diarrhoea!!
It’s not uncommon to need a nap during the day during early treatment, although your husband’s does sound excessive, if he is managing to sleep at night. (I needed sleeping tablets to sleep for the first 6 months after diagnosis, without which I would have slept on and off all day). It’s worth mentioning this to his myeloma nurse, if in any doubt always mention odd changes.
I have always felt more tired towards the end of 28 day cycles, and most energetic at the end of my week off medication.
If you can persuade your husband to go for a walk I suspect it would be good for you both. Keeping physically active is definitely a good thing with myeloma.
Although I didn’t have pain when I was diagnosed (I didn’t/don’t have bone lesions), one of my friends who has myeloma was in a wheelchair & in a lot of pain for 6 months after she was diagnosed. For the past 15 years she has regained her mobility, and has been able to lead a full and active life, walking, digging her allotment, driving long distances, frequently going on holiday. Perhaps not climbing, but certainly active.
Now I’m in remission I’d scarcely know that I have myeloma.
Hope your husband is soon feeling better.
I found a link on the main part of the website, have you found it yet?
Hi Worksopian and wonderment
Hopefully you’ll start feeling better rather than worse worksopian, although we get told of a long list of side effects, most of us only have one or two minor side effects,and a few have none at all. For me the most significant thing was that my life was taken over by hospital visits and travel to & from. The hospital teams are brilliant at sorting side effects quickly.
Wonderment, many people with myeloma do not start treatment instantly, some can be on ‘watch and wait’ for a long time, months or years. This is because it’s not a curable disease and unless the myeloma is causing damage to organs (is associated with high calcium, kidney damage, significant anaemia and/or bone damage) there is no evidence that immediate intervention is beneficial, and it can help drs to know how quickly a particular myeloma progresses. (This can vary enormously between patients)
This is a very stressful period, between myeloma being mentioned and actual diagnosis. I hope you have answers soon.
