August 2024: Myeloma count NORMAL

yet the saddest update of all….

As Richard said in July last year, the Panobinostat has been really effective. For a drug described as his "chemo of last resort" it worked better than any other he had had all along and at his last test his Myeloma disease marker was normal.

But Richard had many related and unrelated health issues. In June 2024 he had another vertebroplasty spine operation. That went well and we were positive it would improve his quality of life. His eyesight issues had also been troubling and on August 12th he was due to have major eye surgery with the aim of saving the much deteriorating sight in one of his eyes caused by long term Glaucoma. We'd had a very, very busy time prepping for that and the likely challenging aftermath of it. We’d had at least one medical appointment every day including 12 hours in hospital for platelet transfusions, and emergency dental treatment on the Friday after his front tooth came out on Thursday night. I joked to friends that I was going to stay under the duvet all weekend so we didn't get struck by lightning or anything before we got him to the op on Monday. Then we got struck by lightning, without even leaving the house.....

We got a massive and very harsh curve ball. Richard became very unwell Sunday night and early hours Monday I called an ambulance. He ended up in the high dependency unit with sepsis, which attacked one leg very badly. We were told he was not well enough to survive the required surgery and he made it very clear that he did not want to have it. I stayed at the hospital all week with him. The antibiotics alone were not enough to clear the infection and stop the spread. He passed away in the early hours of Friday 16th August, with me there with him.

It is one of the characteristics of Myeloma, that Myeloma patients often don’t die of the disease itself, but of infections or the long term side-effects of drugs. So despite the fact that this had been heading down the road at us for ten and a half years, it was still a massive bolt from the blue. He'd just signed up for a Spotify premium account on his new smart sound system intended to keep him occupied after the eye surgery; and we’d just put a deposit down on a new kitchen on the Friday, as something to look forward to after he'd recovered from the eye surgery.

It is a reminder to us all to value the time we have, make sure those we love know that we love them. Oh and probably be a bit more organised than we were for the worst to happen!

Developments in treatments for Myeloma have come on a pace and I do believe that they will find an actual cure within the next 5 years.

Richard’s funeral is at Skipton crematorium at 11am on the 9th September 2024. No flowers please, but any donations to help Myeloma UK fight the disease and support those with it, would be most gratefully received.

Sarah (his shocked and truly devastated wife)

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July 2023 update

Having started the 6th line of treatment, Panobinostat (aka Farydak), in combo with Velcade and Dex, back in February, we're really pleased at how effective this has been and how dramatically it has improved my health. I am no longer getting the intensive bone pain that I was experiencing, I am off morphine (which means I can drink beer again!), and I can sleep more comfortably.

A key quantitative measure of the treatment effectiveness, is from blood test results, where the nasty kappa light chain value has plumetted, from nearly 1000 to 42 (TATLTUAE!) and below.

It seems that when this treatment works, it works well and I may be on it for 18 months or so, which is much better than some of the pessimistic forecasts that I had been given.

Still getting some back pain though, which limits how much time I can spend on my feet or sat upright. Just had an MRI scan on the spine to see if further surgery might help. 

Probably unrelated, but further eyesight problems and the requirement for emergency eye surgery to fix detached retina again have not helped.

Also, that nice Chris Parrish at St. James in Leeds says he might have a suitable clinical trial lined up for me when I need it...

In the longer term we hope that these treatments will get me through until the funky new CAR-T therapies become available, either on a clinical trial, or as standard NHS treatment.

The full history is here if you really want it...

On February 27th 2014 one of my vertebrae collapsed, whilst I was running a training course away from home, but fortunately in the UK. This led to the subsequent diagnosis of Myeloma as the cause of my weakened bone structure. Myeloma is a form of bone marrow cancer, and in my case it is primarily my bones that have been attacked by the cancer.

I had spinal surgery at the beginning of March 2014 which successfully reconstructed the L5 vertebra , a wedge fracture of T11 vertebra was also operated on in October 2014. I am left with a variety of lesions in my bones with weak points in my ribs, shoulder blades, collar bones etc. So no more active sports for me.

The initial Myeloma treatment was done under the Myeloma XI clinical trial, with CTD and then VCD chemotherapy, followed by high dose chemo and a transplant of my own stem cells. The picture above is of the stem cell harvest. All successful and then 2.5 years of remission with the aid of Revlimid as a maintenance treatment. 

At the end of 2017 the Myeloma returned so, at the start of 2018, I enrolled onto the Myeloma XII clinical trial. More chemo, this time with a new drug Ixazomib in the mix with Thalidomide and Dexamethasone. 4-6 x 4-week cycles. Then a second stem cell transplant, meaning another 3-4 week stay in isolation at St. James Hospital in Leeds.  

Unfortunately, the second stem cell transplant didn't really do much for me, I was very sick for 3 weeks in St. James, lost all my hair again, when it came back this time it was really quite curly to start with! Initially results looked promising, but very soon relapsed and so couldn't continue on the trial.

Then went onto 'standard' treatment of Pomalidomide and Dexamethasone, this went well for a couple of years, but started losing effectiveness in the Summer of 2021. We tried adding cyclophosphamide for a few cycles but it didn't really help.  

Next on the chemo hitlist was Daratumumab this helped initially, but by summer of 2022 it was clear that this was no longer working either. 

So, under a special access scheme, we moved on to a new drug called Belantamab Mafodotin, or the more friendly GSK brand name of Blenrep. Thank you GSK for supplying this drug free of charge through this scheme. Like most Blenrep patients, I suffered from side effects that cause problems with the cornea of the eye affecting my eyesight. These should be reversible as I come off the drug, but now (Feb 2023) I still have some problems. I have surrendered my driving licence.

Unfortunately, Blenrep's effectiveness was also short lived, I have had a return of significant bone pain, from November 2022. Some radiotherapy treatment to the vertebrae in the neck has helped a little but the damage is widespread. 

This is the nature of Myeloma, as more lines of treatment are tried, each one tends to have shorter effective duration,

So, having set this Just Giving page up for my initial Myeloma XI treatment, it had an extra 'I' added to make it Myeloma XII. And in March 2020 changed title again to reflect ongoing treatment...

Still open for donations, thanks to everyone for their generous donations that means we've already exceeded the original £10,000 target, but let's keep going...

Richard-Ednay