It’s Not Cancer? Phew, That’s OK Then. 

I

By Dominic Shadbolt (theMSguide.com) 

This is a follow-up to an article recently published on the MS Research Blog that you can read here.

Like much of life, people like the simple binary explanations. A is bad and B is good. Multiple Sclerosis has been tarred by this need for simplification. Cancer kills, MS doesn’t is the rough equivalent. Now the requirement for understanding the seriousness has been simplified into a life and death scenario it is much simpler to understand meaning one can get one with other things. 

Having had Lemtrada (alemtuzumab) for my MS in May I was often faced with explaining to people why I had dropped out of sight for a bit. As a shorthand, I took to saying that I had had chemotherapy. Whilst entirely true, for that is what it is, I received baffling responses. Many from people who ought to know better and the general reaction was them pausing and exclaiming, ‘so sorry to hear that’ and,  ‘oh no, are you ok?’ etc. 

This is extraordinary because after 28y of having MS most people I know know that I have MS. Nonetheless, not a single person I tried this on imagined that it was anything to do with MS. Not even two cousins who are consultants in the NHS! To a person, they all leapt to the conclusion that I had had chemo for cancer and because cancer is a Bad Thing that meant there was a good possibility that my life was under threat.  When I explained it was for MS a universal emotional decompression ensued and normal service was resumed. After all, it is only MS and it can’t be ‘proper’ chemo and everyone knows that MS doesn’t kill you.

This is anecdotal proof of my theory that, to the majority of people, MS is simply not a serious illness. Cancer is serious, MS isn’t. 

Until MS, a chronic, progressively disabling, and incurable neurological illness is perceived as something serious then there are still significant changes in social attitudes required. 

As well as focusing on research for a cure I believe that the charitable bodies in the field of MS need to lead this attitude change. MS is serious and should be perceived as such by everyone involved. Patients, clinicians, and charities. 

Alemtuzumab is a monoclonal antibody. It started out life as Campath-1 used to treat chronic lymphocytic leukaemia. Although, its potential for treating auto-immune diseases like MS was also identified early on. After being bought and sold by a few different drug companies it is marketed under the name Lemtrada for MS.

Disclaimer: The opinions expressed here are those of the author and nobody else.

Follow Dominic on Twitter @themsguide

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23 comments

  • Totally agree that people do not understand the seriousness of MS. In my case, I have had family members who were killed by MS, many years before their natural lifespan, so the idea that it’s not a life-threatening illness is just wrong.

    • I totally agree with you Rachel. I worked as a ward sister until I had to take ill health retirement at 48 due to my MS progressing. I nursed numerous patients with MS who had urosepsis, aspiration pneumonia, infected pressure ulcers etc had it not been for MS these patients would not have developed these conditions. Some ultimately died. So yes MS in my opinion is a life threatening illness.

    • This is why we preach hit effectively and early the years lost.to ineffective therapy is brain loss

  • Had the same fun and reactions trying to explain it after hsct dom, even to people with cancers recieving chemo next to me in the day unit. MS certainly does kill but that wouldnt look so good on the charities websites.

  • I read yesterday that Tim Kerridge’s dad died of MS at 45 – 10 years after diagnosis. I’m sure there are some MSers who wheel or hobble themselves into their 70s, but this idea of a near normal lifespan or MS having minimal impact is a fallacy. It’s MNSD light / slow. EDSS 10 (death by MS) is the giveaway!

    • The issues raised in this thread are important, but five days into my 73rd year I have to push back at the notion that a wheelchair is just a point on a canvas of hopelessness.

      In MS life-expectancy terms I’m unusual, being late-onset and male. I’ve already made it to my prospect lifespan at birth and have a good chance of coming close to my current LE. For women the prospects are different because the population-median LE is higher and onset comes earlier. What my experience does allow me to say is that together with physical therapy, mobility devices need to be integrated more thoroughly into the algorithms, protocols and funding of MS care.

      I don’t have detailed time-to-disability data at hand, but we know that because of treatment conservatism, newly diagnosed pwMS in their 20s and 30s are still being prescribed so-called first-line DMTs whose indifferent performance is well established. Barring major discoveries in neuron repair, in 40 years or so thousands of these pwMS will reach their 60s and 70s needing personal wheeled transport. Many will die not directly from the CNS injury caused by MS but from infections their bodies are too depleted to fight or lung complications resulting from muscle weakness in the trunk. The better equipped they are to conserve strength through mobility and activity, the less painful and dispiriting their final weeks and months will be.

      Wheelchairs empower. Motorized wheelchairs and scooters empower further. The better they are, the more they do so. Just as neurologists in growing numbers are embracing early and aggressive DMT therapy, so the MS establishment ought to wholeheartedly champion the provision of improved mobility devices for those whom DMTs have not saved from significant disability. Factors to be overcome include vanity, stigma, lack of awareness and funding inertia.

      As for the EDSS, the mere presence of death on it is a standing rebuke to its logic. The range of disability becomes steadily compressed beginning at about 7.5 or 8 on the scale. Between wheelchair and “bed-bound” are several unregistered gradations at least as significant as those made explicit at the opposite end. Finely sliced distinctions of the latter figure often as endpoints in MS-related studies. It’s time to retire this outdated tool in favour of something that can accurately measure the abilities of older pwMS, the better to design treatment that recovers what can be salvaged and compensates more fully for what can’t. How wonderful if the recently diagnosed turn out to be the last generation significantly disabled by this affliction — but they must not be written off as headed for an end that is irremediably bleak.

  • I understand the annoyance with “people” and their need for quick and simple ways of understanding things they’d rather not have to think about, but let’s be honest here, most of US were “people” before MS showed us real complexity and the error of our ways. If we did not have MS, we would likely respond to someone’s revelation of having chemo, just like all those “people”. Remember, YOU were the one who chose the shorthand of chemo, getting wrapped around the axle because they came to the equally shorthand conclusion of cancer, seems a bit unfair. If I didn’t know that chemo was used in MS, and you said chemo to me, I too would have gone to cancer, because MS certainly doesn’t keep one from getting other things. Most people understand that cancer, untreated right now, is equivalent to imminent death, so being relieved that you aren’t in danger of dying tomorrow, seems reasonable. As you say your friends know you’ve had MS for 28 years, so in their minds it’s not exactly a sentence of imminent death is it? If I were your friend, I’d likely be relieved too. Which wouldn’t necessarily mean I don’t know your MS is serious, just that there is such a thing as prioritizing.

    • I’m not annoyed. It is an observation, not a judgement

      The point of the article is to draw attention to the fact that when it is ‘just MS’ it is no longer perceived as serious. And it should be taken seriously.

  • In my experience, most people know MS is serious. The problem is that they also know it’s “incurable,” which can lead some to surmise that the prognosis is unremittingly grim. Cancer, by contrast, is seen as serious but “curable” in some instances, for some people. This may be why they’re surprised at hearing “chemotherapy,” a term associated with “curable” cancer, in the context of “incurable” MS.

    While it’s accurate to say that alemtuzumab is chemotherapy, I’d avoid the term in favour of something like “immune therapy.” If pressed I’d call it “a serious drug for a serious disease,” which ought to take care of anyone who doubts that in terms of its toll on the body, MS can be as bad as some cancers and worse than many.

    • Not a big fan of labeling the mabs as chemotherapy. They are much more targeted than the sledge hammers (and their associated side effects!) people generally think of when chemotherapy is mentioned.

      Immune therapy is a much better term, I agree. I’ll occasionally go as far as explaining what ocrelizumab does, especially when it comes to vaccination.

      • Anon 7:54pm – I am not sure you can say OCR is not a sledgehammer. I guess a better descriptor would be jackhammer since it is constantly (and if you believe unnecessarily) beating down CD-19 B cells. My trip to the intensive care unit during an OCR infusion was not a minor reaction!

        CLAD and ALM are also sledge hammers, as they may “target” a specific cell, but they kill a lot more in the process. All of my lymphocytes are now permanently depleted and non-existent, not just a targeted few.

        Side effects from DMTs are on pair with cancer treatments. I can list 10+ major issues I am now dealing with as a result on being on OCR and CLAD.

        Plus I had and beat cancer, and now have MS, so I speak from experience, and I have no issue with the “chemo”description for certain MS drugs as long as the statement is immediately followed by “for MS”. Then you get the opportunity to educate someone about the seriousness of MS without giving the impression you will die tomorrow (even though one of the top causes of death in MS is chocking or falling, which I do every day)

        I have a Oncologist Hematologist that would beg to differ with your MS drugs are just a light immunotherapy treatment. Maybe for most individuals; however, some of us are the unlucky ones to get the rare 1% side effects of the high efficacy DMTs.

        Get experiment and post Dominic!

        • I never said they are light immunotherapy. Alemtuzumab is anything but light, the anti cd20s probably aren’t either (sorry to hear about your experience as personally, I luckily never had any obvious reaction to ocrelizumab aside of minor malaise, mainly headaches, which could also come from the co-medication).

          But I will stick to mabs being categorically different from the agents outlined on https://en.wikipedia.org/wiki/Chemotherapy#Types and frankly, most modern cancer drugs bear little resemblance to those, either.

          • If you look at the name alemTUzumab, riTUximab, ofaTUmumab they have origins in Cancer but nataLIzumab has an immune LI origin. Cladribine has origin in Cancer, HSCT also.

          • Fair enough.

            Although I have my doubts on the stringency of the naming schemes when I look at riTUximab vs ocreLIzumab vs ofaTUmumab all acting as anti cd20. (my suspicion is that Roche named it ocreLIzumab because they knew it would be sold for higher pricing than RTX in that case and possibly get a better image while at it).

            The fact that it is largely repurposed cancer agents stands, I agree.

          • Roche probably developed ocrelizumab specifically for MS as the patent of rituximab would expire before/ or shortly after the phase III trials would finish. Roche have another anti CD20 antibody used in Cancer.

          • I would also add that acase can be made that ocrelizumab is a better therapeutic than rituximab

    • Chemotherapy is entirely accurate. My point is that I was experimenting with how people reacted when they assumed that it must mean cancer.

      Whether or not chemo is the most accurate way of describing it is merely semantics.

      The societal reaction of assumed hasten death or not is what I am commenting on.

  • I have been dx with cancer and my GP, as part of her ‘ongoing interest in my care’ has sent me a detailed questionnaire about it and once she has received it back she will be phoning me to discuss any concerns I may have surrounding managing the dx/treatment and living with the disease.
    Having read through it most of the potential problems I may be experiencing have already been triggered by ms, you know the usual stuff – employment, finances, relationships, treatment concerns, the future etc. Everything that I already have/am struggling with due to ms is now of interest to the GP since cancer got involved.
    To make a point I may copy the form before I fill it in and complete one for ms and one for cancer because so far having ms doesn’t seem to matter, no box ticking required.

  • Dom,

    Thanks for your post. Another MS v cancer angle is age:

    Cancer Research: “Age-specific incidence rates rise steeply from around age 55-59. The highest rates are in the 85 to 89 age group for females and males. Incidence rates are significantly higher in females than males in the younger age groups and significantly lower in females than males in the older age groups.”

    Thankfully, most cancers are diagnosed in middle age and upwards. MS, of course, strikes at the prime of life (20s and 30s).

    The survival rates for most cancers have improved over the last 30-40 years. Many of my friends have experienced breast cancer, picked up by screening, and have received treatment and told “all clear, get on with your life”. MSers don’t get that option.

    I find the descriptor auto-immune the worst. Most auto-immune diseases aren’t life threatening and only affect one part of the body eg vitiligo and the skin. MS stands out given the vast range of functions which can be affected (bladder, mobility, cognition, vision…).

    I hope your Alemtuzumab does the job.

  • The lack of awareness of MS from the general public exists, some will react as it as worse as a terminal disease, some perceive it a much milder disease compared to cancers. I mean people have different interests, values, knowledge so I understand the differences how they perceive MS.

    What confuses me is neuros trying to tell newly diagnosed pwMS that MS is “Boring” “not the same to what we see it 20 years ago”, at the same time they would turn around to say MS progression cannot be stopped and relapses is not the real MS – if that is the case, how and why is MS boring?

    • Anon,

      “What confuses me is neuros trying to tell newly diagnosed pwMS that MS is “Boring” “not the same to what we see it 20 years ago”, at the same time they would turn around to say MS progression cannot be stopped and relapses is not the real MS – if that is the case, how and why is MS boring?”

      You’ve hit the nail on the head. The holy grail when I was diagnosed was to suppress relapses. As soon as treatments became available to deal effectively with relapses, we are told that relapses aren’t the real MS. So smouldering MS is the problem and causes progression/ disability. But treatments are only available if your progressive MS is “active” . If it’s inactive (?surely that’s a good thing) there are no treatments and progression / disability accrual continues! The “experts” don’t really have a clue. We are just lab rats – they try treatments on us and then see if they can explain the disease. Surely, a better approach would have been to research what the mechanisms of the disease are ie fully understand the disease and then develop treatments to target these mechanisms. A lot of us have put our hands up for receiving chemo type drugs and are now finding out that these drugs don’t get into the CNS to target the real MS!

  • I have been mulling this over for some time and trying to articulate how I feel.
    None of us knows what MS has in store for us. I was lucky that I was not diagnosed until I was 62 (and probably not had it more than a few years before). I knew two people on my estate with the same Forename and a similar age who had worked with me who had died from a brain tumour and non smoker lung cancer. So MS did not seem so bad! Also had known someone who had had it for over 20 years (so before all the DMTs). Also had access to an exercise group where I met more people living happy lives including those approaching their 80s. Again the class contained others with conditions where the prognosis is quite grim.
    So if it is not cancer what are the differences and peculiarities? One thing I notice the NHS is quite good at for some complaints is actually letting you know what to expect in your treatment. If you break your femur there is a pathway. Similarly if you are diagnosed with cancer you have a pathway with decision points. This appears to be absent after a diagnosis with MS. There are so many unknowns and imponderables. Our knowledge is very restricted and limited chances to make rational decisions.
    How would we like to be treated? We are a very small part of the 1 in 6 quoted by the Neurological Alliance. While the DMTs are welcome they aren’t as revolutionary and clearly beneficial as antibiotics and vaccinations. Is there another similar disease where the process is clearer or better?

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