TIL Immunotherapy at NCI

[GrouseMan]

Sounds like things are progressing well for you. The platelets will bounce back hopefully rather fast, and you will be able to join your family soon enough for some R&R after the "trial" and tribulations. Hang in there - everyone is rooting for ya!

Best Regards,

GrouseMan

[smalltownmess]

Cheering for you and your cells, Sleen! Keeping you in my prayers, I know great results are coming your way!

Thanks for keeping us informed and letting us be a part of your journey.

[DK37]

Thank you as always for the updates - YOU ARE INDEED A PIONEER!!!
Obviously the #1 goal is your own health but thank you from all of us by being a trailblazer for the entire CRC community!
Positive vibes from the Left Coast for both efficacy and comfort as they being to take those arrows ou!
-DK

[Sleen]

I will take ALL the positive vibes I can get, THANK YOU all. It has been rough. I am still very weak, which I don't quite understand. Patrick will tell you that I have two settings: zero, and eleven (on a scale of 1 to 10, haha) and so maybe this is normal and I just have to be patient.

I spoke with my attending this morning, and he thinks I might be ready to go home on Tuesday! I hope that will be the case.

ANC is climbing. My math-y daughter found a best-fit curve and believes is a power-function; not logarithmic like...somebody told us. Anyway, it's fun to try to predict what tomorrow's ANC will be (absolute neutrophil count). For you math people, the ANC values: lots of zeros, then: 10, 90, 330, 1300, 3460. We're thinking tomorrow should be around 5350, based on her calculations (using Excel). My bones DO alert me that they are "waking up". Having bone pain, and happy to say they are giving me Claritin. Still hurts. Tonight will be the final dose of neup.

I'm growing attached to the staff! I am going to be a big cry-baby when I leave, but I also can't WAIT to get home. This has been an experience like no other, that is for sure.

Celine

[juliej]

ANC is climbing. My math-y daughter found a best-fit curve and believes is a power-function; not logarithmic like...somebody told us. Anyway, it's fun to try to predict what tomorrow's ANC will be (absolute neutrophil count). For you math people, the ANC values: lots of zeros, then: 10, 90, 330, 1300, 3460.

Celine, I think your daughter is right - a power function fits the data better than a logarithmic function. Wow, your ANC's are going up quickly! Yahoo! Hope you get to go home soon! Sending lots of good thoughts your way!

juliej

[DH2Sleen]

Oh, I see Sleen never got around to updating this power function vs. exponential growth function topic... and the fact that Dad out-mathed Daughter on this one.

Math-y daughter predicted power function would yield 5350 for the next day. But Dad knows that the process is exponential, so why did exponential function miss low every day? Because there is a complementary regression going on as the function advances, so the value of "lambda" is not constant. By regressing the value of lambda, Dad predicted that daughter was at least 2000 low in her prediction, and I expected it closer to 9000. My actual calculated value was 8600, but I didn't tell her that. So what was the actual value: 8000 => Dad wins.

Thanks for playing.

[GrouseMan]

From previous PM's I know mom and dad are toots so math-y daughter should have listened or conceded to dad. But - Lets give her lots of cudo's for attempting to solve the problem on her own. Not enough real problem solvers in the world anymore. I think you may end up with another potential engineer in the family headed to da copper country! So how is Sleen doing might we ask? Did she get to come home on Tuesday?

Sorry I didn't join in the fun but I was probably the worlds worse math student at da Tech. Unlike you engineers - Us drug synthesis types seldom use more math than add subtract multiply and divide. Please do keep us posted - We are pulling for you!

GrouseMan

[Sleen]

Hi guys!

Can't remember who I told what, so maybe ask me questions and I can post here. Hoping (!) to get back to the blog. Much excitement surrounding my case keeps me very busy relating various aspects of the story to people who drop by in person or via other (electronic) means. It is a long, long story if I don't leave out all the Catholic-faith-related stuff. Planning to stick to the science for the most part on the blog, but obv. can't wash all faith-related stuff out since it is part of who I am and was instrumental in my ability to cope w/all that occurred. Some days were really, really hard. DH was not able to stay w/me the whole time since we have five kids who needed at least one parent--also, once I became neutropenic, he was adamant that I receive no visitors, not even him. So. That paved the way for the staff to spend even more time w/me, since I was essentially trapped in my own body (due to weakness), in a sense, for so many days.

To help you understand how weak I was...there were days that I would force myself to order "anything" to try to eat...I had a principle of taking my meals in a chair rather than the bed as often as I possibly could. Some days, I'd make it the 3-feet to the chair, sit down, uncover my dinner plate...take two bites and realize, I'm too weak to hold the fork. Stumble back to bed. Not hungry anyway...eating by sheer force of will b/c I strongly believed that was my quickest way to recovery.

I am STILL weak. This is my third full day home. Went out in public for the first time today, since Father's Day, June 21. Barely made it back up my driveway (walking). Teen daughters had to hoist me up--one arm around each girls' neck--for me to make my way back into the house, heaving for air. My strength is coming back, a little each day. I need to discover where my limits are...walking up the driveway is not something I can do alone yet. Driving is out of the question. Cannot pour from a gallon jug, etc. YET. yet. That said, brain functioning great and spirits never better.

Being naturally inquisitive, and with a "flock of white-coats" at my disposal two-to-four times DAILY I was firing off questions and offering my "take" on things almost every time the docs did rounds, once the chemo days were over. My odd mix of skills/experience came in very handy...many was the time I heard, "She's an engineer, she wants to know EVERYTHING." Too right. I still have questions. The more I learn, the more I want to learn. It is all so fascinating, esp. since my cells reacted against K-RAS. That alone made my case unique, but then when they realized that hey...she's not having s/e from the IL-2...what-the-what?...they became MORE CURIOUS about me.

The nurses and docs were all very generous with their time. I sometimes spent HOURS with one of the staff, discussing any number of topics. The fact that Farid Fata was being sentenced during one of my weeks at NIH was an amazing ice-breaker with many of the staff...I was always looking for the latest word on the courtroom action. Got into many a "mom" discussion with the nurses. Talked religion with one, cards with another, art with another, etc. etc. etc. ...anyone and everyone who entered my room knew that if they wanted to talk, this was the place. One guy wanted a math tutor! Another told me all about her wedding plans.

Ahh...thought I'd get to bed before 1:30a and it's already 2:30a...more later. Glad to be home, and glad the fam is back from their week-long trip safely!

Celine

[Sleen]

My first follow-up visit happened Mon/Tues this week. I am now six-weeks "post-cells".

Monday's CT scan showed SHRINKAGE of multiple tumors. We're still doing our own analysis (always get copies of your scans), but here's a section of the IMPRESSIONS from the radiology report:
"Findings consistent with favorable response to the therapy, given the decrease in size and conspicuity of multiple bilateral pulmonary metastases without new pulmonary lesions or evidence of other sites of metastases."

It was a huge and very welcome surprise to get results like this, this early. My attending did warn of the possibility that the chemo I received as part of the protocol could potentially be responsible for these findings, and for that reason they place more credence on the second follow-up, but! Everyone from the attending, to the fellow, to the lab guru were very enthusiastic about the results and used the word "optimistic" repeatedly.

When the attending mentioned the recent chemo potentially causing the results we now see, I said, "Cytoxin for lung tumors?! Really???" Her response: "I have to say the words." So. I am very much looking forward to the next scan, which will happen in five weeks (they were hoping for FOUR weeks, but we couldn't schedule it that soon).

We finally got to meet the lab doctor! He explained his work, and my case in particular. I can only describe the conversation as "amazing", which barely scratches the surface. All the docs were very generous with their time, and very willing to answer our many questions.

My recovery is going well, except that my hemoglobin dropped after they discharged me. So, to remedy that I got two units of packed cells yesterday. I can feel the difference already. Hoping these stay around a while... I've been experiencing almost-daily low-grade fevers, but hoping that is over now (haven't had one in three days). They suspect these are an immune response, but couldn't say to "what" specifically.

Other news: CEA in March was 2.6. Monday it was 0.7.

Next follow-up will be mid-September.
We are so thankful for all that is happening, and for the support you've shown us. Colon Club is an amazing resource!

Celine

[ozziej]

Brilliant!! You are truly a pioneer. Best wishes for the next round.
Cheers from down under
Jan

[Ceebo]

Such great news Celine! Thanks for keeping us updated!

[DK37]

FANTASTIC NEWS Celine!
Thank you for keeping us posted and thank you for being an immunotherapy trial trailblazer (especially in a logistically rough trial like this one) for the rest of us!
Looking forward to future reports! The immunotherapy excitement keeps building!

All the best,
-DK

[smalltownmess]

This is such great news Celine! Glad you're feeling better and hope you are celebrating your wonderful news today!

[lpas]

Fantastic news!!!

[Nik Colon]

Great news!