I hope that you have some answers soon. If you do have myeloma, try not to despair. I wish that I had realised that I would feel much better after treatment, I had misunderstood that because this is an incurable cancer, that I was on a one way downward spiral, but that is far from the case. I’m three years post diagnosis and feeling 99% fit and well (slight lack of stamina is currently my only symptom). Someone I know was in a wheelchair for six months after duagnisis, but 16 YEARS later goes on walking holidays and single handedly looks after an allotment!
I hope that you get good news after your bone marrow biopsy tomorrow.
If not, do not despair.
We all know the all pervading fear that diagnosis brings, but this state doesn’t last forever.
Try not to Google, much of the information is totally out of date. It is much better to get accurate information from Myeloma UK, both the leaflets and telephone service are world class.
Myeloma treatment is a fast moving, exciting world and there is realistic hope that many people being diagnosed now will live with myeloma as a chronic, treatable disease for many years. Already in USA, 14% of patients have lived with it for 20 years plus, and there are plenty of treatments in the pipeline.
Fingers crossed for you, let us know how you get on tomorrow.
Rosary, how are you getting access to Revlimid maintenance? My consultant (& Myeloma UK) have said that NICE have specified that only patients able to start within 100 days of SCT can have NHS lenalidomide maintenance treatment, on the (pretext) that it hasn’t been trialled for use in patients with inactive or stable disease.
I’m happy to continue to buy (Cipla) also through Nirav Sangoi, (I feel that the Indian drug is extending my life just as much as my consultant is and I now feel some loyalty to Nirav), but I’m interested if some consultants are finding ways to treat the group of patients who had SCTs after the maintenance trial closed and the NICE change of policy a few months ago.
Sachbarnes the prices quoted by Rosary and Yorkshirelad are in line with my experience too.
The patent for Revlimid lenalidomide is now held by Bristol Myers Squibb. The patent has different expiry dates in different parts of the world, in the USA I believe that it is March 2022, later in UK countries. Some Indian pharmaceutical companies are already producing generic lenalidomide, eg Cipla, Dr Readys, Natco. These companies have agreements with Bristol Myers to supply a limited market in USA from March 2022.
In the meantime they sell their biosimilar generic drugs to the Indian subcontinent and elsewhere. Unlike to USA it is legal for UK patients to import prescription drugs for ones own use or for a close family member.
However if you do not have a UK prescription, you need to buy through an intermediary who can obtain a prescription from an Indian hospital (which in the case of a diagnosis of myeloma is easily done)
I chose to have lenalidomide during induction rather than thalidomide because research has demonstrated that lenalidomide is 8% more effective, and it is more easily tolerated (a kinder drug). At the time I co paid for this, using NHS for Velcade and dex, and cancer treatment services, but paying for Revlimid. I think this is only possible in the bigger, regional or research hospitals. For the past 2 years I’ve been buying Indian lenalidomide as maintenance. In hindsight I could have used Indian lenalidomide all the way through for induction too. It felt a risky procedure when I took the first steps, but I was reassured by mass spectrometry of the generic drug, & by familiar minor side effects, that it was indeed lenalidomide that I was taking.
Some UK consultants have been supportive of patients decision to import the drug, others have not been happy to treat patients who want to go down this route. It is worth a discussion with your father’s consultant.
I would have had no access to lenalidomide maintenance after stem cell transplantation, which more recently diagnosed patients do, so the benefits were clear cut for me. But I’ve always been pleased with my decision not to have induction thalidomide as I did get a Complete Response after SCT, and I haven’t been left with peripheral neuropathy etc.
If you want details of my contact on India, please PM me.
Hi
I will post later, literally on my way out. Welcome to the forum, even though you would prefer not to need to be here.
Jane
Sorry that you have had replies to your query. You may need either legal advice about this, or at least professional opinion from your doctor.
As you say NHS treatments are in general very good, and most people in UK rely on them completely without private health cover, as I do. However with expensive to treat conditions such as myeloma, there are advantages to the patient if they have private health cover. All NHS treatments have to go through the NICE cost benefit assessment before being approved, which precludes newer and more effective drugs being prescribed. I believe it takes on average 12-14 years for a myeloma drug to go from FDA approval to use on NHS. A patient with the best private health cover scheme potentially has access to it 12 years earlier. With the number of new drugs FDA approved over very recent years that potentially gives you an armoury only available to most of us by entering Uk clinical trials.
I wouldn’t give up your private health cover without discussing whether it still has a value for you with someone able to give expert advice.
I had my second vaccine 2 weeks ago, again no side effects, not even a sore arm. Worried about whether the vaccine will therefore have had no effect, I asked my consultant about having an antibody test. He said that it is expected that all myeloma patients who have had the vaccines will have a certain level of antibodies. However the level of antibodies required to protect us against infection is not yet known, so having an antibody test at the moment could well give myeloma patients a false sense of security. This information is not likely to become available for a few months.
I have been using Dr Best high absorption curcumin with bioperine, 1000mg tablets for almost 3 years. This is the brand used by the’Margarets Corner’ blogger who has been living with smouldering myeloma for 18 years, and was used by Dienneke Fergusson whose myeloma treatment was written up in British Medical Journal. In the UK this is expensive, the cheapest place I have found it is (online) Dolphin Fitness £63. However if you know someone in USA who could buy it for you, it is around £31 from Amazon.com.
It appears to be significant to get a curcumin described as C3 complex, curcumin, demethoxycurcumin & bisdemethoxycurcumin.
If you use a different brand (which may be just as effective), check mg of curcumin in tablets, some contain very little, whereas the brand I use contains 1000mg. I then take 8 of these a day, using the Margaret’s Corner protocol which I recommend you read. It can be found online as a blog and now also on Facebook. Don’t embark on 8 a day straight away, but gradually build up over a period of weeks, this is detailed in the blog.
I dont know whether curcumin is effective against all Myelomas, probably not, given not all patients respond to any myeloma treatment. However I know that it initially brought my paraproteins down from 43g/l to 30g/l when I was on no other treatment. It has certainly halted the progression of osteoarthritis I had prior to myeloma diagnosis and the autoimmune thyroid disease (Hashimotos) that I was diagnosed with alongside myeloma, so for me the anti inflammatory effect seems significant.
My consultant is aware of my taking curcumin.
Personally I didn’t have any side effects from zometa but I know a few people who have. Apparently it can avoid side effects as you describe if the infusion is given more slowly, nurses can adjust the rate.
The Multiple Myeloma Research Foundation MMRF are hosting a free webinar on 10 April, open to all MM patients and carers. One section of this is specifically about Car-T cell therapy which you may find useful. If you look on the MMRF website you should find a link to the application to join the webinar before the event.
Hi Sue
I’ve been following a US CAR-T cell therapy patient on Smartpatients myeloma group since July 2020. (Evolve trial) The thread, ‘Car-t trial, process & patient experience’ now includes other patients positive & negative experiences. Sea Capt, who started the thread is now intending to return to work, and feels “great”, very inspiring to me. I really recommend joining Smart Patients. I hope things go as well for you Sue.
I’m on lenalidomide maintenance and had mine, part way through cycle. I’ve seen some US sites recommending one vaccine over another (& they haven’t got Astra zeneka) but the advice I had was to have whatever was offered. I suspect that the evidence isn’t there yet about whether one works better for myeloma patients than the others.
Hi Susieundies, this is a most stressful cancer and really not easy to deal with during periods of active treatment. If you are fortunate (like me) it all will be worthwhile and you will have a long period or long periods of good health to come. When I was at your stage I honestly couldn’t anticipate feeling as well as I do now.
The things that I found helpful were membership of a local support group, which has WhatsApp contact during these covid times, complementary therapies such as massage & reflexology from a cancer centre, counselling also from the cancer centre (can be by phone) and most helpful of all, yoga for cancer patients (now done by zoom).
It is perfectly reasonable to feel highly anxious at the moment, other people with myeloma will understand how you are feeling. For me it helped to find ways of regaining some control. If you haven’t already, ring Ellen the myeloma nurse at Myeloma UK. I found her very helpful.
Take care, and have hope that this phase will pass. Hugs to you.
Welcome to the unwelcome world of myeloma Will, and to this forum. You are in the most capable hands at the Royal Marsden, with internationally respected myeloma specialists such as Martin Kaiser.
As well as myeloma support groups on Facebook, and local groups affiliated to Myeloma UK, there are a number of online resources you may find helpful:
Healthtree, a database and myeloma education site (in USA but has international members)One idea is to match patients with others with similar Myelomas so you may find that helpful since yours is a pretty unusual presentation.
All4cure, another database and info hub set up by haemo oncologist who has myeloma himself.
Dr Brian Durie YouTube info sessions on myeloma (MMRF)
Smart patients myeloma, information forum for patients (rather than ‘support’)
Myeloma is an endurance event, like a steeplechase rather than a sprint. It is perfectly possible to live well with the disease,for years, but as yet the reasons are not clear why some of us can do so whilst others have a multitude of difficulties.
It is good that you are having “the works” thrown at your myeloma with velcade, thalidomide, Dex and daratumumab. Research suggests you have good odds of doing well, most of us here will not yet have had daratumumab as that has only recently been approved in UK.
Jane
I had the Astra zeneka vaccine 3 weeks ago. I had no side effects at all, not even a sore arm. My healthy husband had it last week and had flu type symptoms for 36 hours. I have read that it is a sign of a healthy immune system if we do have side effects, but I can’t do anything about my response. The information I’ve seen from Myeloma UK and drs is to have the vaccine.
