I've been remiss in providing updates of any kind, most especially as they relate to Deana. There's been a lot going on and it has been concerning and a bit difficult to grapple with.
It had been my hope that we would be blessed with a progression free survival. Unfortunately, that does not appear to be the plan for Team BTHO MM.
My sister Darrie, who serves as our Assistant Team Captain, wrote the most recent caring bridge update, which I will condense here and then try to add the latest in terms that make sense. (We haven't been terrific about updating caring bridge of late, but here's the link if you want to register for updates -- http://www.caringbridge.org/visit/deanachiusano)
Deana and Darrie saw Dr Agha on Monday, January 27th and it was decided that Deana would have two more rounds of the aggressive treatments and he would then re-evaluate. In addition the plan was to also continue to give her IVIG once a month during the cold/flu season as Deana can't seem to shake the cold she has even while on antibiotics.
Dr Agha's plan is to get the numbers to a place where he is happy (he didn't share what his magic number is) and then use a different drug, Pomalyst, as maintenance since Deana's body got used to the other regimen. He had already gotten Pomalyst approved with the insurance company since Deana was not responding to the treatments and was ready to switch paths but had decided to hold off until she started maintenance again.
And that was that...until last week, when on February 3rd, Deana's hemoglobin dropped to something in the 7 range, which is clearly not good. (And her IgA went up again...) She received two units of blood that day. If memory serves, this may the first blood transfusion since her SCT in November 2011, so this rattled us.
On February 3rd, Dr. Agha decided to cease chemo for the moment while he worked to get things under control -- yes, that is a technical term. Deana responded well to the transfusion, and as of this Monday, her hemoglobin was back up at a respectable 10.8.
Somewhere in the midst of all of this, (these are the times it would be great to be geographically closer to the my sisters), Dr. Agha and Deana decided to switch the drug regimen now, rather than wait. Thus, this week, Deana began taking Pomalyst.
Pomalyst is a fairly new drug in the MM battle. I'm incredibly thankful for the work of the Multiple Myeloma Research Foundation -- www.themmrf.org, which was critical in developing this drug and getting it to patients as quickly as possible.
There's more to say about Pomalyst, the MMRF, and those who are at the front line of advancing a cure. I'm going to save that, though, for a future post.
