Last reply 3 years ago
Newbie here RRMS diagnosed 1996

Hi everyone
I’m Bron and came across this forum. I’ve only read a couple of posts so far but I think it’s a great community.
I was diagnosed in 1997 with mild symptoms (my dad also has MS so he spotted what was going on). I’ve been fairly lucky so far with several severe debilitating relapses with almost full recovery between. I ‘did’ DMT for around 5 year before deciding to start a family. I tried to go back into it but the side effects were worse after giving birth.
I was diagnosed with a rare cancer (salivary gland) in Jan 2014 – it has been removed and I’ve had extremely harsh radiotherapy treatment. Of course, my MS has relapsed and I am struggling to regain my health and fitness for the first time.
I am really fearful of trying a different DMT because my neuro wrote that there could be theoretical evidence (though no clinical evidence) of a possible link between DMT and malignancies.
I wonder what other people might have heard about this??

One positive that my MS has given me ….. I was already used to living with an unpredictable illness and unknown future, which applies to every single human. I think my MS diagnosis and knowledge has really helped me to handle a cancer diagnosis …. Silver linings possibly.


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3 years ago

Hi, @bmowe1 and welcome.

I’m surprised that your Neuro is not prescribing DMDs based on “theoretical” evidence. Is that from the NICE guidelines, I wonder?

It’s just that whenever I mention something different, I get told that I can’t have it because there’s only anecdotal evidence!

It’s almost a case of the Neuros want things both ways.

Anyone can suffer a malignancy, as you know, but what is known, is that you have MS and it is a progressive degenerative condition! Surely, it must be your decision as to how you want to manage your MS.

But, I do admire your attitude. 😉

3 years ago

Hi @bron, welcome to the forum. That’s very interesting, although slightly scary – re the link between malignancies and DMD’s. Did your neuro explain why or give you any more info on this? I too, have had cancer, but breast cancer, in 2010 but haven’t started on any DMD’s yet as my MS hasn’t given me any real problems after my first relapse, until the past few years. Actually I will be discussing possible DMD’s soon with my neuro, so that’s another question to add to my list! And I totally get what you’re saying about the unpredictability of life after a cancer diagnosis and life with MS. They’re both something that will never truly ‘go away’ and are always ‘lurking’, whether it’s physically or psychologically and emotionally.

Anyway, take care of yourself. X

3 years ago

Here is the link between cancers and DMD-

Most cancers start as regular cells dividing to make new cells (happens every day and is normal) but something goes haywire and the cells don’t recognize the point they should stop dividing.

So they divide rapidly and also mutate (change, make errors in replication) because they are out of control.

One of our immune system’s responsibilities is to ‘seek & destroy’ cells that are behaving badly. These cells are called Natural Killer cells.

Anytime we suppress the immune system you will to some extent suppress Natural Killer cell activity. So you immune system is not as ‘vigilant’ in noticing cells that would normally been removed by your body’s own natural detection system.

This being said, even non-immune suppressed people get cancer. So we all have the predisposition for this because we are human and our bodies can miss these signs.

An MS patient might (stress might) be at increased risk of missing ‘cells behaving badly) while on DMT. This is one reason I favor Lemtrada- you are only immune suppressed for about 2-3 months overall the treatments you receive- vs. being chronically immune suppressed with other treatments.

However, this should be taken in context that MS will almost always cause permanent damage if left untreated.

So it comes down to- which do you fear more? A possible slightly higher rate of cancer risk, or a definite disability with pain, muscle spasms, cognitive loss, difficulty walking, swallowing, hearing, urinating, and doing normal daily things?

MS won’t quit its assault on our brain, so I won’t quit fighting it for every speck of ME that belongs to me- not to MS.

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