Thursday, October 10, 2013

Good news, everyone!

In the immortal words of Futurama's Professor Hubert Farnsworth, who I am growing to look like more every day, "Good news, everyone!"

Since my last post I've gotten some encouraging results from a PET/CT scan, and I've passed three dates of note on the calendar.

First, the PET/CT, which was done as I was finishing the fourth round of R-EPCH in early September.  A PET/CT is how doctors keep track of the progress being made by DLBCL patients (remember, thanks to Richter's Transformation some of my CLL became Diffuse Large B Cell Lymphoma). 

My first PET/CT in April, at diagnosis, was scary. It showed massive tumors, "too numerous to count," which lit up like a Christmas tree. When I say "lit up," I mean that the standard uptake value (SUV) of the radioactive glucose solution they put in my bloodstream was positive for aggressive lymphoma. (Oh how I wish I lived in a world where the only thing SUV meant to me was "sport utility vehicle") 

The SUV of the tumors ranged from a high of 26.20 down to 14.03. By comparison, "background" SUV -- that of noncancerous normal tissues, is 2.5 in the liver and 1.5 to 2.0 in the mediastinal blood pool. Both are often used as comparison tools. According to one research paper:
a SUV ≥ 13 in the most intense lesion is highly indicative of aggressive histology, while
a SUV ≤ 6 is much more compatible with indolent lymphoma, unless the clinical course indicates otherwise
My September scan showed a marked reduction in swollen lymph nodes, with few remaining. And the SUV of the node under my left arm, for example, dropped from 17.2 in April to 1.1 in September. The largest nodal mass in my abdomen showed an SUV drop from 18.8 to 1.8 (and a drop in size from 25 x 25 cm in April to 13.4 x 9.2).

In other words, my SUV was now at background levels. My oncologist, Dr. Droll, said, "If there were still high-grade lymphoma, it wouldn't look like this. . . . These things light up like CLL would light up."

Needless to say, Marilyn and I were quite happy with the report, which was better than we dared to hope.

Does that mean I'm lymphoma-free, back to plain old CLL, which is, I hate to say it, by comparison a "good" cancer, or at least much better-behaved?

Well, maybe. I have learned that a CR ("complete response") in DLBCL is very much like a CR in CLL: there may still be some cancer cells lurking around that still may cause a relapse, not all of which are detectable on even the most sophisticated test. As with CLL, clinical symptoms are the bottom line, and only time will tell if I relapse.

I still have some swollen nodes and an enlarged spleen. Maybe they're all filled with CLL, and maybe there are just a few really nasty lymphoma cells that have survived and are lurking in there somewhere.

Does my response to the chemo mean that I can put off having a transplant? Possibly. But there is still wisdom in considering the transplant option. CLL doesn't get better the longer you have it, and neither, I presume, does DLBCL. (As one lymphoma expert pointed out to me, the CLL could always transform again.) At the age of 57 I am still young enough to tolerate a transplant -- I have tolerated the chemo quite well -- but I won't be a picture of youth and vigor forever. 

Further, to get me to this point I have undergone some heavy-duty chemo that I can't responsibly use again, even as transplant conditioning. Adriamycin is a drug that does wonders against lymphoma, and it is a component of both R-EPOCH and R-CHOP. It has also been implicated in congestive heart failure if you do too much of it, and if I were to do any more past Round 6 of R-EPCH, I would be doing too much.

Speaking of chemo, it is the standard of care for DLBCL to go the distance, all six rounds, of R-EPCH, even if the PET/CT after the fourth shows no evidence of lymphoma. The theory is that the more chemo, the more undetectable stuff you kill, the better off you are. So I have now completed Round 5 and I'm scheduled to go back to the hospital for the final round next week. 

We've spent more than 40 days in the hospital this year -- I say "we" because Marilyn comes with me and sleeps in a fold-out chair next to me; hospitals really need double beds. The chemo is given over five days, with a visit to the doctor's office for a Neulasta shot on the sixth. 

The hospital staff -- the chemo nurses of Six South at Banner Baywood Medical Center in Mesa, AZ -- have been great; I spent my birthday in there during the last round, and they surprised me with a round of "Happy Birthday" and a gift. Food service even provided a small cake.

The birthday is one of the calendar dates I mentioned at the start of this post. Another is the September 3 anniversary of my CLL diagnosis -- my tenth anniversary, as it turns out. No singing, no cake, just an "ugh" in recognition of the event.

The last date of note was October 1, the opening of the Health Insurance Marketplace. Thanks to President Obama and the Democrats, I will be able to purchase health insurance that covers a transplant. My current health plan specifically prohibits it, and because of my preexisting conditions, no one else would insure me -- until now, when preexisting conditions cannot be held against you.

So, bottom line, the Affordable Care Act is potentially a matter of life and death for me. Thank you, Mr. President. May we, as a nation, always listen to the better angels of our nature. 


Satender said...

Good news finally!!

I was waiting for your post for a month. will pray that you knock out all the bad cells and achieve CR.

God bless you.

Anonymous said...

So pleased to read your informative and well wriiten post and learn that all seems to be headed in the right direction.

Thanks for the update. We're all cheering for you and sending positive vibes your way.

Be well,

Anonymous said...

Amazing and wonderful. Both the news and you, David. I really hope you get to the point where you have nothing further to add to this blog. You'd learn to deal with the boredom, I'm sure.


Anonymous said...

David, What a wonderful relief to read this!! Congratulations to both you and M. I hope there is a bit of time to just relax and then to plan the next step. Continued thoughts for your good health!


Anonymous said...

Doing cartwheels down here in South Carolina. Happy to hear your good news.

Anonymous said...

Great to hear Sloopy is hanging on!

Another Option?

Engineered T Cells for Lymphoma at NIH

I've written about a new technology called "CAR T-cells" for CLL. CAR is short for "chimeric antigen receptor." In short, it is a new method of harnessing the power of your own immune system by reprogramming it to go after the cancer. Please see my prior posts for more complete description and amazingly cool video.

While it may sound like science fiction, it made quite a splash two years ago in the scientific literature and is now getting out to a bunch of universities. If I am not missing anyone, I think 10 separate academic programs currently have CAR T-cell programs going and Novartis has made a big push into the field as well.

Most of the programs out there have gone after CLL or Acute Lymphoblastic Leukemia (really super bad type of blood cancer). I wanted to highlight one program however that is taking the program and going after lymphoma. It is currently run out of the NIH.

I am honestly not sure how the current "government shutdown" is affecting clinical trial accrual for these studies but I think they are currently accruing patients with relapsed / refractory DLBCL and possibly even follicular lymphoma.

With NIH studies, you pay your way to the first visit, but if you get accepted into the trial, they cover all you subsequent travel expenses etc.

If I had relapsed DLBCL or multiply recurrent indolent lymphoma, I would be on the first plane to NIH for these studies. I thought I should call your attention to them. For more information about the study click here

Posted by JAG at 9:30 PM

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Anonymous said...

So great to hear! Best wishes to you.

Anonymous said...

Great news!!!

Just curious...have you successfully enrolled in an insurance plan for 1/1/14...the news suggests that this has been hard to accomplish.

Anonymous said...

Hi David,
I send you all my prayers from ─░stanbul.I believe in miracles of God and I feel you'll be healty soon.

Andrew Alley said...

Daivd, Thanks for the great news, I have been following up with your thread. Great to listen some positive news from you.

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Anonymous said...

How about an update ????

Anonymous said...

hi David , not heard from you for a while , hope all is ok and DLBCL still in remission . Take care

Anonymous said...

How about an update ????

Anonymous said...

Not heard from you for a while david , really hope all is ok , always followed your journey since i was dx with cll 2010 and really helped me at times .
Besy regards