Lots of news, lots to think about

Dear family and friends,

I am going to skip over Monday night's dinner (maybe I'll get to it another time), saying only that I enjoyed having Toby and Elliott as home-style guests, and a good time was had by all in spite of a "Who's Afraid of Virginia Woolf" moment or two between me and Merwin.

Onward to Tuesday! So much happened during our 3+-hour visit to Mt. Sinai with Dr.Mascarehas that I will not be able to cover it all.

The good news: I can, it seems, get into the CEP-701 trial at Mt. Sinai. Amy, the nurse practitioner in charge of the program, gave me the multi-page consent form to read carefully so that I can give my informed consent. I am aware that the drug (like the Pegasus and thalidomide I have tried in the past) may do more harm than good, but I am up for trying: I like the line in the consent form about a follow up in a year after the trial ends. I like that notion of "a year after."

It's not quite a done deal, but I think I am close to acceptance. We MPD-ers react so differently to drugs: HU does not bother me as it does other people; neither does it help me as much as it helps others. Some flourish on Pegasus. I hope CEP-701 will delay the more serious outcomes of the end-game.

The very good news we heard yesterday was that my blood showed no blasts this time. This is a feature that can fluctuate. Three weeks ago, with 6% blasts in my blood, things looked quite bad. The extra HU could have improved this, or it could just be a normal fluctuation. In any case, no blasts is good news for now. More good news, I don't have to go off my current chemo (HU). Dr. M had thoought I would have to be off of it for 3 weeks, and that might have been dificult, in terms of keeping the blood levels in a good place. But now it seems I can be on HU as well as on CEP-701. It'll take some time, though, till I get started on the trial.

The prednisone will be tapered very gradually: it gives me a mood lift and extra energy, big puffy chipmunk cheeks, weight gain--none of which is terrible of course, but also perhaps this hip problem I have been having: prednisone can cause deterioration of hip joints. At Mt Sinai I had an xray yesterday, which will give Dr.M some information.

Dr. M is an absolute gem: careful and cautious. We never had the impression that he was in a hurry to be elsewhere. He talked to us both at length, nothing chatty, just about the condition and his thoughts about it from his experience with it.

So we left there in a high and enjoyed the bus ride south on 5th Ave. I went to see a photo exhibit in the NYPL, recommended by my dear friend Vaughan, a wonderful photographer herself. Photos by 3 women, who had died in advanced old age in 2009, were in the 3rd floor Gallery. A lovely exhibit.

After I returned to the apartment, we went to my favorite, Szechuan Gourmet on W. 39th, shared 2 appetizers and a main dish, and enjoyed the ambiance (so to speak). Michael, the host, now knows me as do the wait-people, and it is fun to go there on every level: around the corner, delicious food.

Home to sleep!

More about the trial in future days,

Love to all,
Bernice

Oh, in case you want to know what I meant in the first ¶. I was a little snippy with Merwin, but we resolved it all (agreeing to disagree) after Toby and Elliott left.