Ah Roger, lenalidomide is available on NHS as ongoing treatment for those for whom a stem cell transplant is not suitable . Hopefully you will be on it for years!
The woman whose case was reported in the BMJ is Dienneke Ferguson. I believe she takes 8g of Curcurmin with bioperine daily.
Lenalidomide is available on the NHS as 3rd line treatment, & now as 2nd line treatment- but not as maintenance, even though the UK myeloma X1 trial demonstrated that it improved remission times for those patients who have had SCT. For standard risk patients, remission is an average of 58 months rather than 30 months without maintenance. Overall survival is improved too.
Nirav’s charges are clear, €60 per consignment including prescription,postage and packaging. Packages are sent by DHL fully trackable, and arrive within 3 to 4 days of being sent. He keeps me fully informed during the transaction.
The lenalidomide is sent in the manufacturers packaging. I have had one sample tested using gas spectrometry, I have the test details available if anyone wants them. The analysts confirmed that the sample contains lenalidomide and was a biosimilar version of Revlimid. I have been able to detect lenalidomide in the subsequent medication as I’ve had the same minor side effects as I had when using Revlimid. (Constipation, leg cramps, lethargy at the end of cycles, anaemia) I’m sure Nirav would be happy to answer any questions you have, I’ve found him helpful and straightforward.
I hope your treatment is going well. Keep positive that you’ll be a lot better in a years time- I wish I’d known that!
The real benefit of your private health cover will be immediate access to lenalidomide maintenance after SCT, those of us on NHS have to wait to find out whether this treatment will be approved for us in October 2020! That and not having to spend hours waiting for consultations!
For those who are lucky, SCT is not as bad as we are prepared for- have plenty of ice during the melphalan infusion to stop mouth mucositis, and you may, like me, get away with only a few (3) days of real discomfort.
Importing myeloma (or other cancer drugs) for your own use, or that of a family member, is legal in the UK but not in some other countries. We can import up to 3 months supply at any time.
You may be required to pay an import tax of 30% although this does not always happen in practice.
UK consultants are wary of issuing prescriptions for lenalidomide, although some will let patients co pay (just pay for the one drug, otherwise remaining within NHS) Revlimid through this route costs approx £4000 per cycle. If you do not have a UK prescription an Indian consultant will provide one without you needing to see him/her or visit India. It appears our diagnosis is sufficient.
I read in the international press about an Australian man who is importing curative Hep C drugs into Australia from India. (Headlines such as Indian buyers club) I contacted him and he put me in touch with Nirav Sangoi nirai.dialhealth@gmail.com
Nirav arranges medical tourism as well as acting as intermediary for foreigners buying treatment drugs in India. He obtains prescriptions for me from a hospital then obtains the drug through that hospital pharmacy, according to the paperwork supplied.
I have now bought 7 months supply of lenalidomide in total from him, in 3 consignments. The costs vary a bit depending on the quantity bought and exchange rate, but around £120 per cycle. I have been happy with all the transactions in all respects. I have some minor side effects from the lenalidomide, but none attributable to the source, and they don’t stop me from continuing this maintenance. If and when NICE approve lenalidomide maintenance for patients post SCT my consultant says I will be eligible for NHS funded treatment.
I found it quite daunting to go down this route initially, but for me it has been the right thing as I believe it is extending my current remission phase.
I hope this is helpful.
Jane
I am importing lenalidomide from India as maintenance, with my consultants blessing, following SCT in February, I’m now on cycle 5. I am importing through a contact I made who supplies Hep C drugs from India internationally. I have had a sample tested in a university lab, but have been unable to find a lab willing to test multiple samples from myeloma patients generally. This seems to be because labs,even university labs, depend on funding from pharma companies. I have details of the necessary test if anyone needs it. In terms of the Indian lenalidomide, disappointingly I am having the same side effects as I had to a lower dose of lenalidomide as induction therapy, so really look forward to my week off during the 28 day cycles. However I am relieved to be having maintenance, especially since the NICE time table for considering lenalidomide maintenance isn’t until Oct 2020. There are a number of UK myeloma patients getting lenalidomide from India using the same source. However the attitude of myeloma consultants towards this approach seems to vary widely, from some who advice patients ” off the record” to consider buying from India, to those who refuse to treat patients who obtain any drugs outside the NHS. I am happy to share contact details of who I am importing the drug through. If you have a prescription from your consultant it is not necessary to go through a middle person. I have a list of Indian pharmacies who will export Natco Lenalid directly, and the name of one which will supply Dr Reddys Lenangio. Both of these pharmaceutical companies supply generic drugs to the UK market and are poising themselves to take advantage of the myeloma market once lenalidomide comes out of patent. There may be others, but these are the only two I’ve researched.
I have been using curcumin with bioperine (Dr best 1000mg) for just over a year now. I follow the protocol outlined in a blog produced by someone who has had smouldering myeloma for many years, Margaret’s Corner. I take 8g per day (all at once).
Of course I can’t say for certain what effect it has had on me, but it did reduce my paraproteins prior to me starting induction therapy and my disease is now inactive (probably more accurate to say that than ‘in remission’) and I feel fraudulently well, able to get on with life.
If you are thinking about taking curcumin, do talk to your consultant. Some go along with this, others aren’t keen, but they do need to know what medications we are using.
Some curcumin supplements contain more of the active ingredients than others. If you find cheap supplements, check very carefully, you may not be getting much curcumin.
Hi Zoe, your situation sounds very similar to mine last year. I’d been to donate blood but was told I should see my GP as I was very anaemic. I had blood tests which revealed a number of issues so the GP ordered an electrophoresis test. This came back showing a monoclonal spike and low beta 2 microglobulin. The GP was pretty convinced I had myeloma but I still had various tests in the haematology dept before I was formally diagnosed.
A year later I feel really well. I had 4 months of induction therapy followed 6 weeks later by a stem cell transplant which led to a complete response, ie paraproteins are not currently detectable. 3 months afterwards I went to Greece on holiday, and I am now feeling better than I could have dreamt of last year. The diagnosis is shocking to the core, but with current research and new treatments there had never been a better time to have myeloma. I have myeloma, but myeloma does not have me.
Don’t despair, nor panic that treatment has to start immediately. For some of us myeloma progresses relatively slowly and unless it’s causing bone or infection problems it isn’t necessarily risky to monitor it for a while.
After diagnosis I asked for a second opinion with a myeloma specialist and subsequently transferred to his hospital. This was available on NHS.
I hope you have answers soon.
Having read a few posts from young people with myeloma, unfortunately I suspect that your son is dealing with his diagnosis in a very typical way. Have you had any contact with the myeloma UK team, it may help to telephone Ellen Watters, the nurse?
If you have not done so, you may well find meeting other people with myeloma very helpful (in a non clinical setting) such as at a support group if you have one locally, or at a Myeloma UK info day.
I was diagnosed 11 months ago, have been through the profound shock and disbelief of diagnosis (my only symptom was anaemia), my induction treatment, stem cell transplant and am now waiting to find out if I am in remission. Despite not knowing my myeloma status, I feel physically better than I have for some years, I feel psychologically in a good place. It has taken some months but the reverberating life shock I experienced, and the total preoccupation with myeloma has dissipated and I am looking forward to doing things that have nothing whatsoever to do with myeloma (as well as a few that have). There will be light at the end of this terrifying diagnosis tunnel for almost all of us diagnosed with myeloma. With best wishes, Jane.
So far there are only 100 myeloma patients signed up, the more there are the better informed decision makers will be. The questionnaire is not difficult or time consuming to complete.
I’m another who finds the new site more difficult to navigate than the old one. I do use the Facebook page but also find the notifications of death difficult and would prefer to use a site that dealt more with medical matters and treatment advances than in psychological support, because I’m in the fortunate position of getting that from family and friends.
Perhaps we could refocus this forum onto being more info based, with links to latest worldwide research results into everything that touches on any aspect of myeloma? As I’m in good health and only diagnosed 6 months ago, in spending time trawlling for information- it would save time for others if I put links here, and for me if others did likewise, in sure I’m not the only one trying to learn as much as possible about my foe, myeloma.
Hi Rosie, I can’t add anything about making the decision about stem cell transplant as I haven’t yet had mine (although for me aged 60 and without the significant physical problems encountered by your MIL it has been an easy decision and if I’m accepted I’ll have a stem cell transplant early in the New Year. You have asked about maintenance several times. Unfortunately for us newly diagnosed myeloma patients maintenance is not available on NHS. There are alot of patients on maintenance but this is because they started on it either because they were on a trial to see if lenalidomide worked as maintenance. It does, and is standard treatment in the USA, and various other countries. It has been subject of a Health Assessment Technical Appraisal by NICE who need to approve all NHS treatments but the NHS won’t let them publish as they can’t agree a funding formula with the pharmaceutical company (Celgene). So there is an impasse that we patients are caught in the middle of. Lenalidomide isn’t risk free as maintenance, and doesn’t work for all, but on average extends progression free survival for 28 months- who wouldn’t want that ? There isn’t an easy solution as Celgene have withdrawn their application for it to be used in UK as maintenance “to do more paperwork” despite its adoption as the international treatment protocol.
It is possible to self fund lenalidomide whilst receiving all other treatments and drugs on NHS but it is extremely expensive, we need it for at least 2 years. The only other alternative I’ve come across is to import a generic version of the drug from India who do not have patenting regulations. This is legal in the UK but there is no help at the moment to minimise risks eg ensure quality of drug ( although the drugs companies involved do supply a lot of generic drugs in UK USA etc ) or info re routes to obtain it ( specialist pharmacies is one way, not sure if they can be obtained directly from the pharmaceutical companies). I know some UK patients have traveled to India but this isn’t necessary.
I’m sorry that at the moment your MIL can’t gain any pleasure in anticipating your baby’s birth, perhaps it reminds her of what an active grandmother she was before. I hope it’s easier for her once the baby is here. In my situation my greatest unhappiness at diagnosis was that any grandchildren I may have ( as my children aren’t getting on with it!!) will grow up without a grandmother, and I would never meet them. I must say I’m feeling in a better place now, and feel less constrained by time frames- perhaps I will meet grandchildren one day.
If your MIL is not taking antidepressants, she should talk to her doctors about these. Many myeloma patients really benefit from antidepressants. Also I was helped by meeting other people with myeloma at a fairly local support group and at a myeloma uk info day. Meeting others for me changed the perspective somewhat and felt empowering, albeit it is a club none of us wanted to join.
I hope you and your husband enjoy welcoming your new member of the family into the world, and that the arrival helps your mother in law out of the dark place she’s in at the moment. X
So sorry to read about your short remission time? How are you Sue? What treatment route are you taking?
Jane
