Thursday, 7 September 2017


I've never felt so good. I've never felt so strong. Nothing can stop us now
Nothing Can Stop Us Now - Saint Etienne

Checkup ... KFLC = 550 ... Hb = 10.6 ... κ/λ = 81 ...

So this weeks instalment is thus:

My light chains have opted to split the difference - 2 more tests both giving results almost precisely in between the previous high and last month's dramatic drop. What that means is not obvious. The hospital Dr sends my GP a letter after each appointment, and I receive a copy. Last month he described me as a "difficult case", which I think means it is unclear how we proceed, rather than that I am a pain in the arse.

I'm not quite triggering any single 'reason to treat' criterion. My κ/λ ratio, which had soared well over the 100 threshold, is back down. And I'm not reporting any symptoms. Indeed, I've just been on a walking holiday in the Spanish Picos de Europa mountains, so I must be in reasonable shape. I did find myself puffing on the uphills, and that may reflect the most significant bad omen for now, which is my relentless anaemia.

My haemoglobin level is moving from normal-for-me (which would not be normal for you), downwards to not-good-for-anyone. If it continues to fall, it will become a reason to treat in its own right. Being consistently significantly anaemic is not much fun. (That's the boundary of my Saint Etienne infused positivity. That and achy hips.)

So, we wait on more and frequent blood tests, and another MRI. Back in the MRI machine, for a whole body scan. The outcome of which can be compared to the one I had last December. This really is the full English breakfast of scans - neck clamp, head clamp, weights and sandbags everywhere. Contrast dye injection, prolonged breath holding, the lot. And so so noisy. Still, better this time without the blocked-nose-sore-throat cold, which made the previous experience that much worse.

I was also booked in for a bone marrow biopsy but the consultant decided that having a BoMB right now is not really worth it. (I can save my anticipation for the ones that will almost certainly be required for the clinical trial I will likely find myself on at some point soon enough.) In itself, cancelling that appointment is something of a result.

In other news, I've been heartened to read several articles about a new treatment called "CAR T-cell therapy". It involves the patient's own immune cells being harvested, modified to attack the cancer cells, and then re-infused. There have been encouraging trials on myeloma patients, and the process has just been licensed to treat one type of leukaemia. It is quite possibly going to become a functional cure for some (many?) people. (Putting the Car-T before the hearse?) I just need to hang on long enough. In that context, my endlessly dithery disease is exactly the right kind to have. Long may the dithering continue.


Annette said...

My husband, who was diagnosed with Myeloma 3 years and had a successful stem cell transplant 6 months later has recently been diagnosed with Myelodysplasia and within a month it has progressed to Acute Myeloid Leukaemia. This is apparently a result of the chemo involved in his stem cell transplant and it is rare that this happens. It's devastating, since his myeloma is in complete remission, but while he could have hoped for several years with the myeloma diagnosis, his life expectancy for him with aggressive AML may only be months. This was suspected because his blood count results were trending downwards and was confirmed by a bone marrow biopsy. We're glad it was picked up early since he is being treated with monthly injections of Azacitidine, which has a reasonable chance of prolonging his life for an extra few months. He's 72.

I haven't found much on google about AML as a secondary blood cancer to Myeloma and it is apparently rare that this happens. The medical staff treating him were pretty upset that their treatment caused an even more aggressive blood cancer.

However, and especially since you are a lot younger, it is most unlikely that this could happen to you (and I certainly don't want to cause additional worry) I'd suggest your medical staff keep a very careful eye on falling blood counts and perhaps question the decision to postpone the BMB. Apparently Myelodysplasia can be relatively benign and not cause too many problems, but as we unfortunately know only too well it can transition to AML and that's one to avoid at all costs.

Alex Bicknell said...

Dear Annette

I'm so sorry to read this. Sadly, your husband is not the only person I have heard of developing AML as a consequence of chemotherapy. It's a really tough risk we have to take as part of our treatment. I hope the treatment he is on now keeps it in check for a very very long time.

I'm only really postponing my BoMB - the clinical trial I am expecting to join soon will require one. So my consultant is really just avoiding me having to have 2 in quick succession. And the whole body MRI should show up how much crud - whether myelodysplastic or myelomic or leukaemic - there is in my bone marrow.

I hadn't really considered that my current symptoms could be a product of MDS or AML rather than just the MM. But of course that is a possibility. I hope not!

Thanks for your concern - and sending strength to you both from me.

Annette said...

Thanks Alex, at least we're pretty old. As far as the Myeloma is concerned I feel much sorrier for younger people like you coping so bravely with all this worry and uncertainty while your kids are little.

Ranting at Brexit has been a good distraction over the last few months.

Good luck with the trial

Anonymous said...

I am early days, just coming out of SCT at day +30. Even though I expect to feel better soon, I like to keep one eye on the road ahead. When I do relapse, hopefully several years away, I think I will want to use a technology other than Chemo poison. Just looking at some of the more innovative trials on the go at the moment in the UK e.g,
- CAR-T AUTO2 Trial might be something for the future.
- Early access treatment with daratumumab
- MUK eleven (Reolysin trial)

It will be interesting to see how these things progress, just a bit worried some might have a 'hype cycle' associated with them, so we will have to see.

Alex Bicknell said...

With a bit of luck, we can inch towards these novel therapies just slowly enough to be on the right side of the curve - picking up the new treatments as they are proven.

Access to daratumumab and Car-T is, as far as I'm aware, only available - in the UK - for people who've already had more treatment than I have. I'm hoping to go on MUK twelve for now.

The obvious caveat - the big poison - is melphalan for SCT. My understanding, to date, is that it continues to buy most time (for those for whom it works) and therefore is a necessary evil as we tread water, waiting for better treatments to come.

Each journey is unique - and we should aspire to make them as smooth as we can. Good luck to you.

Anonymous said...

Just on the melphalan front it does like there may be some new developments on the horizon.
"Poseida Developing CAR T-cells to Replace Risky Stem Cell Transplant Pre-treatments"

Alex Bicknell said...

Wow. Thanks for that link. I hadn’t considered Car-T as sct conditioning. But the concept makes sense. Whether it will be on stream in time for me, and whether I’ll be robust enough for it, since I’ll certainly have had 2 scts already by then, who knows.

My way of looking at it is that each round of treatment buys me 4 or 5 years. At any point my chances of making it that long are a bit over half. So it’s reasonable to hope I’ll be here in 5 yrs, or even 10. And if I am, then no less reasonable to hope for 15 and 20. Given the pace of change in treatment, it’s quite likely that, somewhere in that time, a treatment will be developed that contains myeloma for good.

As things stand, my bet would be that the breakthrough will be car-t - or a derivative of it.

Let’s see if we can both make it that far.