What if the drugs DO work?
Or should I stop taking my meds?
In June 2025 it will be 4 years since I was diagnosed with Multiple Myeloma.
As a 41-year-old female, I was, naturally, a prime candidate for diagnosis with a disease that is most common in men over 65, but here we are.
The first question I asked when I was told I had an incurable cancer was, “Will I ever be able to do a pull-up?” (Not so far, but let's not blame the cancer for that.) The next one was “How long can I expect to live?”. The answer was a cautious 10, maybe 15 years. Knowing what I know now, that sounds like bloody AGES with incurable cancer, especially as the reading I’d done about it told me it was 50/50 I’d get to 5 years. My life plan, such as it was, hadn’t included dying in my mid-50s, but I would take what I could get.
Since then I’ve done a lot more reading. Trust me, I like to know EVERYTHING I can about this stuff. I now know those statistics are based on data from 2017, which is a very long time in cancer years. I also know that the younger you are at diagnosis, the better your survival prognosis, and I know that the earlier you are diagnosed the longer you are likely to live.1 I was diagnosed early, so early that most of my markers pointed to me having a precursor condition called a solitary plasmocytoma. My bone marrow had low levels of cancer cells, and my kidneys were ok, but unfortunately, as well as the lesion in my spine, it was also in my sacrum and right shoulder, meaning my diagnosis was Multiple Myeloma. That diagnosis put me onto a treatment track that included induction chemo, a stem cell transplant and, now, a maintenance drug called Lenalidomide; if they hadn’t been there, they’d have zapped my spine with radiotherapy and told me to come back for a check-up every few months in case it came back.
I REALLY hate Lenalidomide.
There, I said it.
It causes me terrible fatigue, stomach issues and joint aches, and those are just the ones I’m reasonably sure are down to Lenalidomide rather than being a middle-aged lady, or having a stem cell transplant. I took a month off in January 2024, and I actually started to feel GOOD. Then the month finished, and I had to go back on it.
My dose has been halved, which has meant my immune system is taking less of a battering, but hasn’t done much for the other side effects.
So, should I just stop taking it?
Lenalidomide was only approved as a first-line maintenance drug for Myeloma 6 months before I was diagnosed. If I’d been diagnosed a year earlier, then after my stem cell transplant, they’d have put me on a regime imaginatively called “watch and wait”. This basically means I’d have had blood tests every few weeks until I relapsed, and then they’d put me on drugs again.
Myeloma is unpredictable.
I’ve seen relatively young people on watch and wait relapse in under 18 months, but I also personally know someone who has been free of cancer drugs and living their life for 7 years so far without relapsing. Over 8 years without maintenance is considered an exceptional response.2
New treatments and novel therapies have quadrupled life expectancy for Myeloma over the last twenty years. This is amazing, and I am very pleased to think that I could maybe even reach retirement age, whereas 20 years previously, I might already have been dead. However, it does mean that patients are on treatment longer, and the risks and benefits of long-term treatment aren’t as clear-cut.
The Myeloma XI trial, which led to the approval of Lenalidomide as a maintenance therapy, began in 2009 and followed patients for 15 years, so it only officially ended in 2024. The trial's findings for lenalidomide maintenance were that it nearly doubled progression-free survival, with the median time to progression in the lenalidomide group being 5 years and 4 months, compared to 2 years and 8 months in the watch-and-wait group.3
In March, it will be 3 years and 3 months since my stem cell transplant. As these studies that show a clear benefit to maintenance are so recent, there is no conclusive data on how long you should take maintenance drugs before the benefits outweigh the risks. I’ve seen some places suggest that 2 years is enough to give a benefit. In contrast, others (such as the article linked above) say that at 5 years, there is still a statistical survival advantage to maintenance, and others say that it should continue until progression. My treatment plan at the moment is that I’ll keep taking the drugs until progression or until toxicity is an issue, or, I guess, until someone does some research that proves differently.
Ultimately, at this point, it’s my choice. I can keep taking the drugs and resign myself to being cancer Gem, or I can choose to stop, take my risks with the cancer relapse and hope that my energy returns for good.
Whichever I choose, it’s scary. Oh, the dream that I might be able to live a life without monthly blood tests, consultant appointments, side effects and constant reminders that I have cancer, but if I make that choice and relapse in 6 months I’ll never know if that was going to happen anyway, or if I essentially bought it on myself. On the flip side, if I keep taking the drugs, and in 15 years, I’m still progression-free but planning my whole life around my energy levels, I’ll never know if those 15 years could have been different. But what if I stop taking the drugs, and it turns out that in the long term, it makes no difference? After all, a short break and feeling my energy improved could be all in my head, couldn’t it? What if I stop taking it, risk the relapse, and I’m still a permanent Zombie? WHAT THEN? HMM?
If any of you have perfected the ability to see into the future, I’d love some help. I do not believe you can treat cancer with lemon juice and yoga. I’m a BIG fan of medical research, and I will take whatever drug the research tells me I should take, but when there’s a gap in the research like there is here, what do you do?
At the moment, I am leaning towards prioritising my quality of life. The London Marathon is in April, and I’ve arranged to take a treatment break in the hope that my energy levels will bounce back and I will fly round (snort). If they DON’T bounce back, then I think we can safely say that I will go back on the drugs. If they do, and I feel as good as I did when I had a break in 2024…. Well, let's see how brave I feel as a very risk-averse human.
What would you do in this situation?
It’s so hard making decisions like that. I came off my normal drugs in October last year, then caught Covid for the first time while I was going through withdrawal on them, and some long term side effects from them are now gone, which I’m very grateful for. But it definitely set me back for a while, and I’m back on a different drug again now (and probably a higher dose soon) because I was much much worse after I stopped taking them, but in my opinion it was worth the attempt. It must be much harder for you when you *know* you will feel better off the drugs. If you went through cycles of them on and off, would that have anymore benefit as opposed to stopping entirely? It’s a horribly difficult decision to try and make, because you can never know either way. Sending you all the good vibes for flying round the marathon at top speed though! 🥳🩵