Sunday, December 16, 2012

6 Month Review in Chicago


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  He told me he does not recommend further immunosuppression at this time and believes my MS is "no longer active" meaning it is now neurodegenerative and beyond the reach of any approved MS medication designed to mitigate progression.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!