Multiple Sclerosis

[Nutcake]

I am a somewhat new member, and first, I say " group hug." I have learned much from you all and am so grateful. I have CLL and also Multiple Sclerosis. I was wondering if anyone here was in the same boat?

The best to all,

Dottie

[AussieNeil Partner Administrator]

Hi Dottie,

With CLL being a cancer of the immune system and Multiple Sclerosis an autoimmune disease, some drugs are active against both diseases and may even be approved for the treatment of both conditions (but with different usage/dose protocols). The most notorious of these is Campath/Alemtuzumab, which was developed at Cambridge University (the name derives from Cambridge Pathology). The drug company marketing Campath has switched its focus from CLL treatment to the more lucrative MS market:

en.wikipedia.org/wiki/Alemt...

cam.ac.uk/research/news/dru...

So there's an opportunity for you IF you can get your CLL and MS specialists working together, since the appropriate treatment in your circumstances for one condition may help you with the other. Also, if you have treatment for MS with a CLL drub (like Campath), then you may find yourself eligible for the new non-chemo treatments for your CLL that are only approved for second line treatment, without having to get beaten up by stronger and more toxic immunochemotherapy. Hopefully you'll never need treatment for your CLL. but there's got to be some benefits from having two chronic diseases...

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

Neil is right... and adding Rituxan might be of benefit in treating the CLL.

Lemtrada™ (alemtuzumab) is the trade name used in the MS community and Campath was the name used in CLL. Same monoclonal antibody, but I believe the dosing is different.

The drug company took Campath off the market, and gave it free to CLL patients... they then rebranded for the MS market as Lemtrada and increased the price about 20 times to come in line with other MS drugs...

en.m.wikipedia.org/wiki/Ale...

[Newdawn Administrator]

Hi Dottie,

A group hug sounds good to me!

I don't have personal experience of MS to share with you but wanted to send my best wishes anyway because I can appreciate how co-morbidities can impact and influence treatment options (isn't co-morbidity a dreadful little word!).

I understand you're lucky enough to be on Ibrutinib but have had a very rough time recently with dangerous bleeding caused by the Coumadin( Warfarin). Hope that's fully resolved now and it must have been a terrifying experience for you.

I have a friend and a close relative with MS (different types, one the primary progressive and the other the relapsing/remitting type) and wondered if you've experienced an impact on your MS from having CLL? It does sound like it has influenced treatment options.

I hope someone who can relate to your situation replies but I wanted to send my best wishes to you as so many of us are fighting a two and even three headed beast along with our CLL!

Newdawn

[Nutcake]

Thanks so much for the thoughtful responses. Actually, my hematologist/oncologist was involved with the Campath clinical trials so I am familiar with it. I also understand that the FCR drugs could be helpful, and I think that I was walking a little better with the FC but could not tolerate the R. Interestingly enough, my hematologist/oncologist’s wife has MS, and we both have the same neurologist. It so helps that both docs know each other and both keep up with my treatments. My neurologist has diagnosed me as “post inflammatory” and is pushing to have that included as an MS category. I ended up in a wheelchair last year after falling and breaking my arm, and I lost my ability to walk. I am so fortunate to be on Imbruvica, even though the cost is prohibitive at about $130,000 per year. The CLL has not affected my MS, but I have had three serious hospitalizations in the past year and a

half for different reasons (blood clots, PE, pneumonia, UTI's, sepsis, Coumadin toxicity), and my MS does not like that, so I end up spending time in rehab facilities with extensive PT and OT. My goal is to stay out of the hospital!

[jangregg]

Hi Dottie,

Sorry to hear of your dual diagnosis but kind of feel reassured there is someone else out there. I was diagnosed with CLL in 2013 followed by MS just recently. CLL is on a watch and wait, MS is slow progress both only found out by accident as I do not have any symptoms at present. Do you have any symptoms and were you told the MS would not be treated because of the CLL?

[AussieNeil Partner Administrator]

If you are seeking access to Lemtrada to cure your MS, best talk to your specialist about whether that is recommended for you. You have replied in a community supporting those with a blood cancer (CLL) which happens to have some common treatments to those with MS and we can't give medical advice to those with CLL, let alone those with MS...