[dmhorsfordParticipant]

Hi,

My dad was diagnosed in March 2020, unfortunately it seems he has a high risk form of the disease and has just started his 4th treatment line. His Drs are concerned this treatment may also be failing, despite only being on it for 2.5 weeks, because his light chains are going up. He had been told there is just one more treatment option available but of course this is may not work and even if it does if may not work for long (side note, his longest remission period has been 9 months). In the medium term we are hoping he will be accepted on an appropriate trial, but in the immediate future we are hoping he will be able to access treatment on compassionate grounds/early access.

We would like to know if anyone is in a similar situation who has been prescribed treatment on compassionate grounds and what this treatment is, please? We’re your Drs proactive in helping you gaining access to this treatment or did you have to fight for it?

If there is anyone on a clinical trial with a similar Myeloma history we would like to know which trial this is and any feedback people are willing to share, please.

As a family we are keen to explore all options as soon as possible.

Thank you in advance

Dawn

[thejollynorthernerParticipant]

Hi
I was diagnosed in June 2022.
Placed in VTD for 5 months. Plenty of sides effects but after the treatment I was in and still am in remission. I had another 2 months of VTD which ended in March this year and am now receiving Zometa infusions monthly.
To be truthful all through my treatment I was bever really I informed what was happening and what the purpose of the drugs were.
But it worked.

Good luck

TJN

[kh0305Moderator]

Hi Dawn,
I’m sorry to read about your dad. It must be very disheartening for you all to not get the results you’re hoping for with each treatment. Unfortunately there’s not really much advice I can offer as Dad responded well to his first line treatment (ctd) plus SCT, with a remission period of 7 years, but since his relapse in Dec 2020 we’ve been unsuccessfully going through the treatments – Dvd, Ird and about to start 4th line Isa-Pd. If this one doesn’t work we will be in a similar position. Our consultant has been reasonably helpful when pushed but I wouldn’t say overly proactive its more when we start to ask particular questions about trials, courses of treatment, side effects etc but it does feel like hard work at times.
Sorry not to be able to help more and i will keep everything crossed this next treatment works for your dad x

[mulberryParticipant]

It may be worth looking up all the current trials on the myeloma UK trials finder, then contacting any that look potentially feasible to discuss whether your father would be eligible, if he is willing to try trials. There is a considerable difference between stage 3 trials, which stand a good chance of benefiting the individual patient, and stage 1 and 2 trials, but all successful treatments have gone through the trials process, and even some of the unsuccessful ones have worked well for some patients.

[Author]

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