Summary/Refresher

Upon her MS diagnosis in 2021, Tysabri was the only treatment for which Lindsey medically qualified. Those infusions kept her MS at bay - every 28 days for 26 infusions. In December 2023, Lindsey tested positive for the JC Virus, an automatic disqualifier for continuing the Tysabri infusions. Although rare and risky, there is a certain type of oral chemotherapy available as a "last course" to try and keep her MS at bay from this point.

Going forward:

Up until November 2023, MRIs showed that lesions were holding steady:  8 lesions on her brain, and 1 on her neck. Lindsey's most recent routine MRI of her brain revealed 3 additional lesions, which unfortunately means that her MS is progressing.

And now, from Lindsey:

I chose Mavenclad, the more aggressive chemo, when it became apparent there was no longer a choice to make.  No choice of treatment route.  No choice of type of medication. There are various contributors to that statement, but what it means is that once insurance approves it (could be up to 4 weeks; cash pay is $41,000 so we're waiting for insurance) I will start Mavenclad.

This is why in the meantime they did a 3-day steroid infusion to bridge the gap until the chemo comes in. This was administered at home on this past Thursday and was removed on Sunday - just in time for me to go to the Valspar [Valspar Championship at Innisbrook].

Mavenclad is a pill a day for 5 days. Then in a month 5 more pills. Then I think in 6 months or a year, another set.  However, as I understand it, the chemo is only approved for the 2 rounds.

In any event, the idea is that my MRIs stay stable and after the effectiveness, which is around 2-3 years (maybe 5 at best) - then I decide at that point what I do.  No projecting allowed in the meantime; it is what it is.

Exactly 90 days after I start the chemo, months 4-6 are the most vulnerable for infection. So I'm going to have to have fairly strict rules during that time ...

... but not stop my life.

I'll travel, just safely.

I'm not turning down any fun stuff, I'll just figure it out. Sanitize more often, etc.

And the MRIs every 6 months will continue.

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Back to Mom/Karen again:

Many, many thanks for everyone's continuing love, care and prayers.  Lindsey has the most awesome village!

Love to all. 🧡