Consultant Meeting - January 13th 2026

 

So I am in Addenbrokes again today for my 4-weekly treatment with Elranatamab and the meeting with my excellent, honest and humorous consultant, followed by a couple of hours linked up to a drip getting my 4-weekly infusion of immunoglobulin (and thank you very much to all the blood donors out there!)

The consultant meeting is the point where I can get to ask how things are going, what she recommends, and any other questions that I think of since the last meeting. For example, I am going to be a guineapig for 'creating excercise plans for cancer patients' because my sister Mary is doing what sounds like a really interesting course on how to tailor excercise and activity for people with a cancer diagnosis. You may remember that one of the problems with my blood cancer, myeloma, is that when it is active it causes holes in your bones from the inside out (search for 'lytic lesions). This is no joke, although I was very lucky to have had my cancer caught by a routine health check by our local GP surgery (thank to them too!). But for a lot of people who end up with myeloma their first warning is apparent back problems, including a lot of pain. And some end up with a very serious vertebral fracture or disintegration before anyone finds the real source. The lesions inside their bones have weakened key components so that a sudden strain can cause a fracture. You can also have sudden snappings of ribs and collarbones, and essentially any bone that can be put under strain. 

But because my cancer was caught comparatively early, none of the lesions are critical and I am highly unlikely to have any spontaneous fractures, but I asked the consultant what the limits were for me. Basically, powerlifting is off the menu, but everything else is pretty much allowed. Contact sports would be a bad idea but the last one I did of those was rugby up till about 15 years old, and then only under the extreme compelling of the PE teacher. And I may go to Thailand at some time but will not take up Muay Thai. 

The other main question I asked the consultant was for her view on the latest blood tests that measure my 'paraproteins'. These, you may remember, are the thing that causes the physical problems in myeloma. Myeloma is a cancer of your plasma cells. Affected cells start to produce a functionless 'fake protein' , the paraprotein, and it starts to build up, cause bone problems, thicken your blood, etc etc. At its highest, when I was diagnosed pp levels were 30g per litre of blood. That is a lot, though I have heard of cases where patients were diagnosed with 100g or more per litre. That means one-tenth of their blood was a useless extra cell, and in those cases you can get serious problems cause by blood-thickening. I had to take blood thinners in the first six months of my treatment. 

But from 30g, my levels came down steadily to about 15g after initial chemo and then down to 5g after my stem cell transplant. Since May 25 they have been showing as '2g or less' because the test they were using could not accurately quantify the amount at that level. Which is a good thing. 

But last month's bloods showed a different message that said basically 'no protein band can be detected'. I was naturally curious but cautious about what this could mean because I know that if you have the higher-tariff genetic variant that I have, then your chances of getting into 'complete remission' (no detectable paraprotein) are not high. The consultant explained today that it is a good sign because we have gone below the 'detectability' level of the current test and have to go onto another that can detect down to 0.4g. Unfortunately it is a yes/no test so can't tell you where you are, just somewhere between 0.4 and 2.0. But from next month I will be on the new test and very interested to see how it goes. 

And in the mean time, I am going to have as much fun and adventure as I possibly can. 

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