maj11 29/01/18
Last reply 4 months ago
scared of immunosuppressants…

Hi there,
I’m in the final stages of diagnosis for MS, but from the tests it’s looking near certain that, that’s what it is. I was looking at some pamphlets for DMT’s today that I took from the neuro’s office, as well as reading online.
I don’t want to upset/scare anyone with this post but it does pertain to my fear over the fact that they all seem to increase chances for certain cancers, specifically skin cancer (not so worried about basal and squamous, but very afraid of melanoma). I am already at high risk for melanoma and I will not take my chances…especially because along with this very likely MS, I also developed ‘halo nevi’ a condition where my body attacks my moles (these two autoimmunities occurred in conjunction with one another, it seems). My derma said that this is a ‘good sign’ as my immune system is hyper vigilant…ha ha ha…this was before the whole ‘MS’ thing came to light. I fear that if I made it less vigilant…the moles would turn.
Worst of all, somebody I follow online with MS has developed stage 4 melanoma…she says that she feels it is because of her medications over the years. I feel deep, deep sorrow for her.
I know this is a sad post and the last thing I want to do it upset any of you. I also know that medication is a touchy topic. I would have taken it no problem, if it weren’t for the increased skin cancer risk. I would have lived with cold and flu symptoms every day of my life if it meant I might be slowing the MS…but the anxiety over the skin cancer side-effect would be too much for me.
I feel so down and deflated by these revelations.
Any thoughts and/or advice would be much appreciated.
Thanks so much.

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stumbler
5 months ago

@maj11 , unfortunately, life involves us making all types of decisions, all of which involve risk of some form. However, we are able to mitigate a lot of these risks and therefore make them acceptable.

Having MS is no different. There is a risk that the condition can progress and cause life-impacting disabilities. So, do you therefore discount a treatment that can mitigate this risk?

I understand your concerns about skin cancer, especially as you are susceptible to this condition. But, you mitigate this risk by being observant and taking the necessary treatment options. I believe that Melanoma are the most successfully treated cancers, if identified at an early stage.

It’s all about calculating the risk/reward ratios. All MS treatments involve an amount of risk, but these are known risks and can be mitigated with monitoring.

I hope this helps put the situation into some form of perspective for you.


daybyday
5 months ago

If you’re aware of and will monitor the moles, and have doctors involved in your care plans, this can be something you can manage. I have generally had a pretty vigilant immune system myself, so much so that I have MS, and two other autoimmune/inflammatory things, in addition to at least one ridiculous allergy.

Now, I’m only about three months on treatment and have been feeling and doing well. The winter dry air has been my biggest foe so far. But, as above, the notion is that this is a decision you’ll have to make for your own care.

My mother has MS and has never been on DMT, though they were introduced after her diagnosis. My mother has had exacerbations and symptoms through the years, but her last documented flare was in the late 90s. I was diagnosed last year after years of symptomatic flares but no health insurance. My brain took up quite the collection of lesions in the meantime, so I made the decision (in conjunction with my doctor) to go on Ocrevus to hopefully reduce the chances of new ones. These are very personal decisions, but there are also lots of things you can do to both prepare yourself for adjustments and to remain vigilant.

Be well.


cameron
5 months ago

I see you’re in Australia, where screening for skin cancers is already pretty thorough and routine (so OZ friends tell me) so presumably they’d be super-vigilant with you. Before you discount treatment altogether, it sounds as though you need both a neuro and a cancer specialist to talk it through. You think you already know the cost-benefit, but this may not be the case.


nutshell88
5 months ago

This post os so polite i salute you your concern about how upset we may get.
I personaly refused taking MS treatments I was daignosed age 17 in 2005. And done a corneal transplant last year things are going so regular with me for aome reason MS hardly ever cause any relapses it caused atrophy in my brain and loads of lesions but I’m not considering it as a big issue because it never stopped me doing simple or hard things I claimed edinburgh mountain in 2015. Its not that bad and I repeat thats a personal case.
As for your other condisions im so sorry you have them at once.
I worry MS treatments cause kidny liver failure and more it effects eye sight in some cases and cause hair falling andlots more side effects
Not pushing you away from the treatments loads of people are on them and they feel way better. Just wanted you to think deeper about all cases might cause cancer in different places not just skin but whener you choose my wishes are with you that you hopefully make the right decision.


nutshell88
5 months ago

Worst thing about MS is worrying aboout it truly triggures symptoms or more signs


maj11
5 months ago

Thanks so much guys, all of your comments have truly helped me to gain perspective and to feel less alone. Thanks for taking the time- appreciate it. I think I will talk to my neurologist and find a skin cancer specialist too, and together we can formulate a plan of sorts.
Thanks again.


cameron
5 months ago

And let us know how you get on. xx


mcnair924
4 months ago

I’m with you I still haven’t started treatment yet because I’m so afraid. My anxiety holds me back. I started seeing a therapist and I think I’m finally going to start treatment. I do so many things that involve my dominant arm/hand and I’m losing strength in my entire right side and I started occupational therapy physical therapy vision therapy regular therapy etc and the weakness is still there and I don’t want it to get worse. Everything I love to do involves my hand/ arm so I will now take the risk of the treatment. The way my therapist put it is there’s a certain percentage chance that you could get cancer but you 100% have me. Good luck with your decision and remember you are not alone


petlamb
4 months ago

@maj11

Just wanted to wish you well. Keep strong.

Like @mcnair924 comment her therapist made – “there’s a certain percentage chance you could get cancer but you 100% have me”. Looks like she is in safe hands.

Good luck on your decision. xx

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