By early 2022 I had survived a remarkable 10 years with the rare and incurable blood cancer Myeloma, and amongst other life events, I had welcomed the granddaughter I thought I would never see, into our family. But, I had used and exhausted all the available licensed drugs that had kept me alive, literally, against the odds, so my bio markers were rising and my brittle bones, ribs in particular, were fracturing with the slightest cough or movement (10 fractures in 2 years). In February 2023 I managed to join a trial for a new class of drug to tackle Myeloma and after a rollercoaster year of multiple debilitating side-effects, the worst of which left me unable to walk, I emerged with my first ever complete remission after 11 years of continuous treatment. A minor miracle? Not a cure, but I'll definitely take it. 

What has enabled me, and other patients, to survive longer than the stats in 2012 suggested we would, has been the accelerated development of an incredible number of new drugs (more than for any other cancer). The Pharma companies take enormous credit for this but so too do the powerful patient advocacy groups such as Myeloma UK (the only dedicated Myeloma charity in the UK), who fund research, trials (like mine) and ensure the lengthy process of 'bench to bedside' for new drugs is foreshortened as much as possible, by making sure the patient voice is heard. 

That is why I am so passionate about fundraising for Myeloma UK. They are literally helping to save the lives of patients like me.

This year 40 of my family and friends are cycling a challenging 300 miles from Pisa, through the hills of Tuscany to Rome. 

Please sponsor us to help save the lives of Myeloma patients and help us find a cure.

Cycle to Paris, then Cycle to Rome

In 2020, after founding and taking part in 4 amazing London to Paris Cycling Events, raising over £1 million for Myeloma UK, I wanted to repeat the experience on an even more beautiful route with an equally iconic City finish, to celebrate reaching 60. An age I never thought I'd reach in 2012 when I received the devastating diagnosis of the incurable blood cancer Myeloma.

Then something unusual happened.

But after an aborted '10 year survival edition' in 2022, the event is reborn in September 2023 as 'my 1st ever remission after 11 years of continuous treatment' event (well actually all 3 reasons, and some). The challenging 300 mile, 4 day route will take 40 of my family & friends from the Tower of Pisa, through the hills of Tuscany, to Siena, Chianchiano, San Martino and on to Rome, via the Vatican City with a gladiatorial finish at the Colosseum. 

I should point out all the riders pay the full cost of their trips and 100% of your sponsorship donations will go directly to Myeloma UK (= zero cost of fundraising). Myeloma UK is a very well run charity, it has led directly to the extension of quality lives of patients like me through its work in research, trials and patient advocacy, leading to the accelerated development and availability of an incredible range of new drugs in the past 10-15 years. Without these drugs I, and many of my fellow patients, would undoubtedly not be here to tell the tale, so you can see why I am so passionate about helping to fund their activities, and why I am so grateful that my incredible team have come together to support me.

More Background For The Keen Readers

If I've still got you (apologies for my verbosity) .......When I was diagnosed with this incurable cancer in 2012, I learned that 25% of patients last less than 2 years, only 45% make it to 5 years and 19% survive 10 years. These were shocking statistics for me, Linda and the boys. And in 2012, after the first 3 existing drugs/chemo failed, things were looking grim, but in 2013 I was prescribed a newly developed drug which kept my Myeloma under control for 3 years until 2016, although nowhere near remission. There were plenty of scrapes along the way, permanent blindness in one eye, radiotherapy on my spine, fractured sacrum etc but because I was stupid enough to go skiing when I had flu and caught pneumonia in 2012, I was diagnosed before I suffered the catastrophic vertebrae or kidney damage that is so common in newly diagnosed Myeloma patients. But as all of you know, during this time I became fit enough to take up road cycling and this has become my salvation and the focus for my fundraising activities 

By the time that drug stopped working in 2016, several others had been developed and made available, and again I was the lucky recipient of two of them in delicious and effective cocktail, which kept me stable again, until 2019. But then my biomarkers started to rise and my bones turned to Kikat, with a collapsed vertebrae and two broken ribs in quick succession. This is the pattern for most patients, temporary respite until the cancer mutates and overtakes the ability of the drugs to work. And then a new and more effective drug or combo is required. As described above, by 2022 I had used every available drug, in every combination, I had 8 further fractures (ribs, arm, leg) and my bio markers were rising again. The outlook was grim, even for this raving optimist. I even told Linda this could be our last wedding anniversary.

But the trial drug, which continues to batter my bones and joints and facilitates viral infections too numerous to list, has resulted in clearing the Myeloma from my blood and, as far as can be measured, from my bone marrow. It's classed as a Complete Remission, my first! Now that's a result after 11 years of continuous treatment and around 100,000 additional tablets, to date. It's not a cure, but I'm happy to embrace this minor miracle.   

The Myeloma will probably come back and the trial hasn't been running long enough to know the probabilities yet. But in the meantime, I am now a very lucky 11 year survivor, and the only reason I am still alive is the advancement in research and development of new drugs over the past 10 years (I am living proof) and this is where Myeloma UK comes in. They are the only UK organisation dealing exclusively with Myeloma, funding research into new drugs, running trials that facilitate early access and acting as a powerful patient advocate to bring together Pharma companies, the Government/NHS and NICE to accelerate licensing, approval and thus their availability.

One of these pipeline drugs may even be close to a cure. I remain unfailingly optimistic that I may one day be the recipient of one of these cures but without a powerful patient advocate like Myeloma UK funding research and fighting our corner, time will run out for me and many other Myeloma patients. #Curearoundthecorner

I’ve been so lucky to be an outlier in survival terms, and grateful that I have managed to have a great quality of life and I hope that my good fortune to be able to cycle and fundraise can be translated into help and hope for all my fellow patients and all those to come.

We would all really appreciate anything you can donate to help my team reach their targets for Italy.

Thank You. Bob & Family & All His Friends