Update: some progress?

I saw Dr Porter yesterday. He was pleased that my nodes are remarkably smaller. If my marrow could start to produce normal cells I would still be eligible for the CAR trial.  They are looking more deeply into whether I really match the two unrelated donors they found on the initial search. Dr. Porter wants to do another cycle of the high dose methlyprednisolone which was scheduled for week after next. He said that if my response does not include the marrow recovering, they wouldn't want to wait too long before doing the transplant. I thinks this means of course they would clear the marrow as much as possible with the pre-transplant conditioning. 

Who knows, I could have a transplant by the spring, yikes! Dr.  Porter did note that I seemed to be requiring transfusions a little less often with platelet counts that stayed above 20K for up to 4-5 days after the last transfusion.

HDMP impressive result so far!

Here I am on a quiet Sunday afternoon watching Atlanta tear up the Seahawks in NFL playoffs, and am getting bored so thought I would summarize the past week during which I received Rituxan the first day and high dose methylprednisolone (steroid) daily for 5 days, as per planned protocol. I tolerated the steroid pretty well, some insomnia, big appetite, felt like in a fog much of the time, was hard to work some days.
Also on prophylactic antibiotics no other issues. Did need RBC and platelet transfusions on Thursday and Friday.

So look at the dramatic change in lymph node size, over just this week!

Before:

Today:

Amazing huh, now to get weekly Rituxan X 3 more and then next phase....

Odds and ends - HDMP-Rituxan going well, still fighting wrong priorities in my head

So I  got both the high dose methylprednisolone and rituximab on Monday and to get HDMP daily the rest of week. No real new side effects except steroid munchies, euphoria mixed with some irritability, and insomnia (staying up later and waking earlier but getting 6 hours solid sleep with the help of Benadryl the first night and then lorazepam last night). I know it may be wishful thinking but the nodes in axilla seem smaller and the huge one in left neck seems less tense...dare I hope?

For those who are inclined to read deeply in the med literature, here is link to a study on the above protocol,

RITUXIMAB IN COMBINATION WITH HIGH DOSE METHYLPREDNISOLONE FOR THE TREATMENT OF CHRONIC LYMPHOCYTIC LEUKEMIA(Topline: study found 96% overall response rate, 33 months median progression free survival and is particularly good for those with myelosuppression, that would be me!)

With the euphoria I had two episodes the last two days of rampant self-indulgence. On Monday I was on train playing with laptop and remembered to look up Princeton hockey game we had been talking about going to, was to be this coming Saturday. Upon reminding Cynthia, she reminded me of my commitment to see dying friend and/or her going to see nephew post-op, Damn I lost my "others " focus so soon. After Alabama trounced Notre Dame for national championship I thought to spend upwards of $30 on a champ ball hat, but with my usual self-indulgence in control I almost hit purchase submit button, but then I remembered the need to fight for gun control here in our insane society so that money would be better spent as contribution.to one of the groups ramping up thats fight....

But on another note one of my co-workers has launched a pay it forward project within our company to sign up folks for the bone marrow donors registry. She has asked me to the poster boy ("old man" seems better) and had me write the introductory blurb to the mailings See below, what do y'all think?

I have had chronic lymphocytic leukemia (most common adult leukemia) since 1997, and have been treated with both chemotherapy and monoclonal antibodies 5 separate times as my disease went in and out of remission. All these potent drugs that kill leukemia cells have put me back in remission for sometimes years, sometimes months, but have also wreaked havoc on my normal bone marrow’s ability to make healthy red and white blood cells and platelets. I have needed transfusions of both platelets and red blood cells on almost a weekly basis for over a year. I am currently on my 6th treatment protocol; it is too early to know how it is working. There are few options left except for drugs in development in clinical trials so my doctor and I are beginning to think it is time to consider a bone marrow or stem cell transplant. As I have no available related donors, I will need to turn to the donor registry to find a well matched donor to have a chance at a cure, or at least to have a chance to enjoy at least a few more years of life...
Change the type of leukemia or blood disorder and the details in the above and you could be hearing from one of thousands of others who may need transplants for disease cure or control, we all need your help!

Do not ask for whom the bell tolls, does it toll for thee...

...or perhaps a friend or family member who is actually worse off or closer to death or disability than you.

In just over the last several days, I learned of medical conditions of a very close friend from my teen years and a teenager on my wife's side of family, both horrendous.

The teen has a genetic condition whereby he gets tumors in his spine near the brain, with the potential for paralysis and worse. His most recent scans showed multiple tumors and he is headed to surgery next week, with some risk of post-op paralysis. Here I had to choke back the tears when I heard, this kid is not yet 16 and has his whole life's potential jeopardized with this condition....and I in my self-centered fears have had a pretty good life to 63, and there is no comparing the horrors.

And my best friend when growing up from mid-teen until I moved to New Jersey in late high school. We lived 3 doors apart, had birthdays the same week, loved sports, went to many a Washington Senators and Redskins game, played Little League together, had Wash Post paper routes at the same time, and so forth. Had reconnected the last few years thanks to our common sports interest and the Internet. He was recently diagnosed with pancreatic cancer stage 4 and has only a bit of time left, with hospice involved....

Again, when such suffering of others comes into my sphere of conciousness, I feel so helpless and get angry at my self-centered fears about my own condition...Need to remember that there is soooo much suffering on this planet, and that my Quaker/Buddhist compassion should be there for others more than myself....

That said, prayers for all of us are heartily welcomed.....