This past week I visited Dr’s Burt and
Balabonov in Chicago for my 6 month checkup.
My transplant was 5/21 of this year.
My trip was worthwhile. I met Burt in the AM and in his straight to the
point, researcher type communication style said he was sorry he hasn’t helped
me. My walking and coordination is worse
than pretransplant. He said most of his RRMS patients are showing good progress at 6 months. He and I discussed
before treatment in April that in his opinion I was transitioning into
progressive disease and successful outcomes are not as common. He told me he does not recommend further
immunosuppression at this time and believes my MS is "no longer active" meaning it
is now neurodegenerative and beyond the reach of any approved MS medication
designed to mitigate progression.
We got into a debate regarding the use
of Solumedrol (IV steroids) after rATG during the conditioning phase of HSCT. He questioned
why I refused steroids during chemo and told me he will no longer
allow patients to refuse solumedrol. I pushed back and reminded him I took
several "rounds" of solumedrol during the conditioning phase but
after 5-6 days of ceaseless hiccups I was tired and wanted a break. He informed
me the 2 identified reasons for treatment failure are SPMS and fever after
rATG. I had both and while solumedrol did reduce the fever I obviously
shouldn't have been the one to make the decision regarding treatment options
particularly in the fog of chemo I was in. I knew from steroids over the years
they usually cause me hiccups so among the gallons of liquids pouring in to my
body I was confident that was the culprit.
He told me hjs study results from the
phase III MIST are very good and he will publish soon. Burt works with a
Neurologist from Rush University for all of his HSCT patients. I saw him in the
afternoon and he was more positive. He told me I shouldn't expect improvement
for a while longer and that they usually occur between 1-3 yrs post treatment.
I had met Dr. Balabanov before treatment and he was not nearly as emotive as he
was this visit. I got the feeling Burt talked to him between visits and asked
him to be more positive than he was although that could just be my NY cynical
conspiracist predisposition... Burt actually came out into the waiting room (I
was waiting to go back in to complete the memory tests and the famous
"pick up the pegs, drop them on the desk and floor and pick them up to put
them in the hole test)... to make sure I went to see Balabanov that day.
Either way I left Balabonov feeling better than when I went in and at least I have "hope" for several more months. Above all I'm not sorry I did HSCT, still committed to live each day to the best of my ability and will continue to pursue all reasonable options to seek relief.
Before I
traveled to Chicago I completed follow up MRIs for comparison to pretransplant
MRIs. My brain showed one new lesion (6
total) and my C-spine scan showed increased signal intensity. The challenge here is to determine if this
progression occurred during the 6 months between the last MRIs (11/11) and the
HSCT (5/12). There is a good chance the
progression occurred before transplant and my symptoms are a result of the
lesion and signal increase pre HSCT.
Nothing else
to report for now. Work is good, home
life is good and after the incomprehensible events in Connecticut Friday I am ever
thankful I woke up today with our two happy, healthy kids in their beds snug as
bugs in rugs! Thank you God!
