[carolwParticipant]

Hello everyone

Husband diagnosed with high risk, velcade resistant MM ,actually he had plasma cell leukaemia, in 2017. VT PACE and an auto SCT got him into remission for 18 months. revlimid/dex followed for 12 months but barely worked then he got on a clinical trial (not the arm we wanted) and had daratumumab, pomalidomide and dex – we have found out today it has not worked. We are now told the only option is panobinostat or palliative care. The consultant was not very encouraging about panobinostat because of the side effects so my husband is veering towards palliative care.

Can anyone suggest any other treatment or point me towards anything/anyone that might help – second opinion a good idea? the consultant would not consider carfilzomib which i heard would be used in the USA at this stage but is not approved by NICE.

To add to our troubles he fractured 3 vertebrae just before Christmas and I am destroying myself thinking that he should have been on zometa to protect his bones – he was never offered this treatment.

My thanks Carol

[mulberryParticipant]

Hello Carol, what an awful situation to be in.

If I was faced with this I would seek advice from Brian Durie of the International Myeloma Foundation. Other possible sources of information (but which may need your husband to upload all of his medical history) are Healthtree (Myeloma Crowd) and Tony Blau at All4Cure. (He is a haematologist with myeloma).Both of these are myeloma patient databases which aim to help identify treatments which have been successful in patients with similar myelomas.

I know another patient who is in a similar predicament to your husband has just started Blenrep as compassionate use although it’s not NICE approved yet. His consultant had to go through a few hoops for this, but GSK the pharma company are supplying it, I believe without charge. Myeloma UK may know more about getting drugs under this scheme so that you could then ask the doctor to pursue this, and myeloma UK should also know if there are any suitable trials underway yet.

Please do let me know how you & your husband get on. Thinking of you
Jane

[carolwParticipant]

Dar Jane

I was overwhelmed by your response, you are beyond kind to get back so quickly and with such helpful advice. I will pursue all those avenues you suggest and my husband, Neil, is keen too which is good. I just need to stay strong for him and our daughters.

I am finding it so hard to read all the patient stories from the USA that say how treatments not available in the UK, have transformed their lives. It seems so cruel.

I will let you know how we get on.

My kindest regards
Carol

[mulberryParticipant]

Hi Carol
It’s true that some myeloma patients in the USA get more opportunities for more personalized treatment regimes and more lines of treatment than we in the UK, but this is totally dependent on them having the best health insurance plans. Those patients without health insurance or on the basic plans often cannot access the treatments we have on NHS due to untenable financial burdens, or their insurance company refusing their claim. To my mind the NHS is somewhere in the middle.
There is an Individual Funding Request system in the UK. It is a lot of work for our doctors, and the success rate is pretty low, but it’s there for patients in not straightforward situations (as I would argue high risk myeloma is) & is another approach you could take if you can identify a drug which your husband would like to try.
Never give up hope. Remember it was a patients wife who first thought of using Thalidomide as treatment for myeloma, not a doctor! (Thank you Beth Jacobsen)
Jane

[Author]

Posts