[mulberryParticipant]

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 There isn’t an easy solution as Celgene have withdrawn their application for it to be used in UK as maintenance “to do more paperwork” despite its adoption as the international treatment protocol.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

[mulberryParticipant]

So sorry to read about your short remission time? How are you Sue? What treatment route are you taking?
Jane

[mulberryParticipant]

I understand that some of Natco s manufacturing plants comply with US/EU standards, but that others don’t. How can I find out?

Sue, in hindsight did you need to see a MM consultant in India or could you have obtained the lenalidomide by post? I understand that it is legal to import 3 months supply of drugs for personal use. I’m concerned about traveling as far as India not long after SCT.

Did you have any of the drug analysed in UK? I believe the Terrence Higgins Trust analysed 6 samples of a generic HIV drug from 6 Indian pharmacies and found all were genuine, but this still feels quite an issue for me.

Brian, are you contemplating going down this route?

Jane

[mulberryParticipant]

Was your UK haematologist happy to treat you/test you while you are on lenalidomide from India. Presumably this is a generic version – how did you satisfy yourself about the quality and effectiveness compared with the celgene product?
I am starting treatment with lenalidomide (VRD) under copayments scheme but it look as if I will have to pay VAT. If this is true I fear the financial burden will just be too great for me (apart from the qualms of paying VAT on a life preserving drug).
How did you choose the hospital and haematologist in India?
Hope all is going well for you
Jane

[Author]

Posts