On the Brink of Melanoma Treatment with TIL   September 12th, 2011

Life is like a whirlwind, at least mine is right now. You get swept up when you’re not exactly expecting it, and you hope you get put down safely and soon.

My previous blog post left things hanging a bit, and I apologize for that. Those of you who get e-mail notifications from me already know, but I got a call last Wednesday afternoon that my cells were already ready. That was just one week after the tumors used to grow those cells were surgically removed from my body. Needless to say, we were stunned by both the good news and the speed with which it arrived (picture mental and physical “happy dances”).

With my surgery wounds pretty much healed now, I am scheduled to depart for Bethesda again tomorrow, and while at the National Cancer Institute (NCI) on Wednesday, I will repeat all the scans and tests I had done in late August – all because those tests fell one day outside the three week window prior to signing onto the protocol. The tests being run include blood tests, an EKG, a chest X-ray, a brain MRI, and a nearly complete CT scan. The next morning I spend about three to four hours getting a “feeder apheresis”, where blood will be extracted from me on one side of my body, materials filtered out to help further feed my grown immune cells (hence “feeder”), and what’s left being put back in on the other side of my body.

The protocol signing (called a “consent”) takes place on Thursday afternoon, at which point some computer is going to determine, randomly, whether my Tumor Infiltrating Lymphocyte (TIL) treatment will include intense total body irradiation (TBI) or not.

If I get randomized into the TBI arm of the protocol, I will be checked in as an in-patient the NCI clinic on Thursday night (while Linda flies back to Boston), and stay there for eight days. Starting at 7pm on Friday, I would get an injection of a drug to boost my stem cell production, and this would continue for the next seven days, twice daily, at 7am and 7pm. During that subsequent week I would also meet with the radiologist, a dentist (because the radiation might impact my dental health), and other specialists. On the following Friday I would go through a stem cell apheresis, to remove a large amount of stem cells in my blood stream. Those would be used later in the treatment to regenerate all my bone marrow cells, all of which the radiation treatment would kill.

Once I leave Bethesda, either this coming Thursday night or at the end of the following week, I will only be in Boston a week or so before returning to NCI to finally start my actual treatment. A description of how that treatment would start is in the blog of my friend, and my hero, Jamie (Melanoma Mom), who is undergoing the same chemotherapy right now that I will soon be going through myself. Jamie isn’t having total body radiation, but is going through a very similar treatment otherwise. Jamie – be strong! We love you and will see you in a couple of days!

Background of TIL
One of the things that kept me off-line quite a bit last week was reading a book that the research nurse for my protocol had recommended. Written about 20 years ago, “The Transformed Cell”, by Dr. Steven Rosenberg, provides an in-depth view of how immunotherapy as a cancer treatment got its launch at NCI. Dr. Rosenberg is “the man” in the world of immunotherapy, as well as the principal investigator in the clinical research study that I am participating in (and I was fortunate enough to meet him the morning after my surgery, albeit briefly).

What fascinated me about the book was Dr. Rosenberg’s detailed explanation about his motivations and his experiments in trying to show that immunotherapy could in fact work to eradicate cancer in a patient. One of the many procedures he helped developed is the transduction of lymphocytes, or in simpler terms, programming white blood cells using gene splicing.

Rosenberg is very forthright about his failures in his book, and the emotional burden of finding himself unable to help many of his initial patients – yet knowing that he was very close to a solution. His book ends (and since this is historical, I’m not giving a lot away) with the cure of a woman using T-lymphocytes which had a gene for TNF (Tumor Necrosis Factor) transduced (injected) into them to make them even better at killing the particular cancer cells the lymphocytes were targeting.

Now, keep in mind, this was 20 years ago. The techniques developed in NCI’s labs then have led to on-going evolution and revolution in immunotherapy around the world, and from all that I have read, Dr. Rosenberg and his team continue to push the envelope. I was pleased to have my new dermatologist in Boston (who specializes in “pigmented lesions”, including melanoma) tell me that Dr. Rosenberg is the Father of Immunotherapy. I am quite sure I couldn’t be in better hands than his, and am very happy I got into his clinical study.

And I’m also excited about my visit to NCI this week, because I’ve been offered a visit and tour of the lab where they grow the cells for TIL (including mine). Apparently this is something offered to every patient, but I’m looking forward to geeking out a bit in my discussions with the lab technicians and specialists.

Other Tumor Factoids
I neglected to mention in my last blog post that during my stay at NCI, I learned a couple of interesting things about cancers from the doctors and nurses there that some of you might be interested in:

– Cancer tumors tend to be quite firm and solid, although that’s not always the case. For some reason I had a perception of tumors being soft and squishy most of the time. However, since they are generally quite firm it explains why doctors will palpate your lymph node regions and abdomen to see if they can feel any solid masses.

– Cancer tumors can be variously colors, although apparently black or dark are more common colorations for tumors.

– There are over 200 different types of cancers, each treated in its own particular way.

Enjoying Life’s Moments
As the above might indicate, I have no idea what my actual schedule is going to be beyond Thursday, until I’ve been randomized. I have already bemoaned the loss of control I feel in terms of planning – something that is really tough on anal retentive and control freaks, like myself. Some of you may recall the Robin Williams movie, “Dead Poet’s Society”, where he taught his students to seize the day (“carpe diem” in Latin). Well, I have been trying to adjust to my lack of control as best I can, and my Latin mottos now include “carpe opportunitas” (seizing opportunities and advantages) and “carpe momentum” (seizing the moment).

One such moment seized was yesterday, as we finally had wonderful weather in the Boston area again, and had learned last week that the annual King Richard’s Renaissance Faire was being held south of us. We set forth to enjoy some hours at the Faire, with one of the major goals being the devouring of large turkey legs. We accomplished that mission handily.

A rare shot - Krystyana, Linda, and Bas all together. Here, getting ready to eat the fare at the Faire.

A rare shot - Krystyana, Linda, and Bas all together. Here, getting ready to eat the fare at the Faire.

Enjoying a massive smoked turkey leg at King Richard's Faire

Enjoying a massive smoked turkey leg at King Richard's Faire

Much to Bas’ consternation, I bought myself a pair of giant butterfly wings which I wore throughout the entire Faire to entertain myself and others with. Bas was convinced my sole purpose in wearing said wings was to embarrass him (he remains firm in this belief, even after numerous explanations to the contrary). At a Renaissance Fair, being partly dressed as a mythical fairy raised nary an eyebrow though. Now, if I wore the wings to Whole Foods or Quincy Market with Bas in tow, that would be a different matter entirely.

Be that as it may, it was a very nice way to spend the better part of a day with my loved ones, and my wings lifted me even higher.

Me with my butterfly wings at King Richard's Faire

Me with my butterfly wings at King Richard's Faire

 

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This entry was posted on Monday, September 12th, 2011 at 18:44 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

17 Responses

September 12th, 2011 at 19:05
Martyn Day Says:

Hey Jake,

I’m late to the news on your health situation. Saddened to hear you have a challenge. All I can say is I admire your attitude and as usual excellent explanations of the technical ins and outs of what you are going to go through. Keep strong and carpe rememdium.

big hug,

Martyn

September 12th, 2011 at 19:06
Jenna Says:

I adore the butterfly wings and I think wearing them during certain trips to NCI is not only appropriate but mandatory. :-)

September 12th, 2011 at 19:07
Janis Says:

Keep wearing those wings and good luck Thur.

September 12th, 2011 at 19:07
LaDonna Says:

Love the wings, Jake! I am dancing the happy dance of joy here….KNOWING that this is the beginning of your journey to NED! I love you! Give Linda and the kids hugs! And tell Bas it’s Martin and I that are on this earth to embarrass him!

Hugs!

LaDonna

September 12th, 2011 at 19:07
Wallace Says:

Best of luck to you. My son also thinks that I sometimes dress to embarrass him. In my case, he is right though. ;)

September 12th, 2011 at 19:41
kelly Says:

You continue to be “Jake” :-) !!! Bas has my sympathy , I love it !!! Roll on my friend.

September 12th, 2011 at 20:29
Kathy Says:

I had to steady myself first, to read this, but I am so glad to find you so positive, under the most extreme of all extremes. All the positive energy in the universe that is mine, is yours. Love to you and your beautiful family. Btw, I understand Bas, but love the wings. Gossamer, weren’t they?

September 12th, 2011 at 21:39
hannah Says:

Thinking the best that can be for you! My thoughts are with you.. And I like the butterfly wings.. Bas has to “get with the program”, parents can be silly too!

Hugs from here,
hannah

September 12th, 2011 at 23:06
dara Says:

Jake, my friend, thanks for the belly laugh, complete with a snort!!! Carpe Momentum, indeed! More power to the winged warrior – that’s a statement. I love that your creative eye captured the moment in shadow and light :-) I am trusting that the magic of TIL will metamorphose those tumors into healthy tissue, leaving you free to fly to greater heights on your butterfly wings!!! Keeping you all everpresent in my thoughts.

September 13th, 2011 at 05:44
Karin Says:

Keep enjoying “your moments”! Good luck next week, I will be thinking of you!

September 13th, 2011 at 10:40
Cynde Says:

Jake,

I truly appreciate the time you take to detail your journey to NED. I learn something new with each blog. I’m also glad you have your sense of adventure, spirit, and humor. Love love love the wings. I have to laugh at Bas’ reaction. Were you wearing them when you took the fam photo? He has an odd look on his face….I can only imagine the sight of you in large butterfly wings. I tend to agree with Jenna, take them to NCI and wear them there…

to NED!

Hugs and love,

Cynde

September 13th, 2011 at 11:05
Cecil Berry Says:

To NED Jake.

Interesting take on MSNBC this morning.

http://www.msnbc.msn.com/id/44498065/ns/health-the_new_york_times/

Same thing different cancer.

September 13th, 2011 at 11:16
Barbara Leary Says:

I love the opening sentence “You get swept up when you’re not exactly expecting it, and you hope you get put down safely and soon” and I’m praying for a safe and thorough response to treatment.
Looking forward to NED!

September 13th, 2011 at 19:29
Liz Says:

So happy all is heading in the right direction!!! NED, NED, NED…thank you for that…it is my new mantra…

Next time you go to Whole Foods, and Bas is in tow…wear the wings! Being unexpected and spontaenous is a wonderful thing, enjoy!!!

September 13th, 2011 at 20:29
Stephanie Says:

Hey, isn’t one of the pleasures of parenting teenagers that you get to embarrass them in public. They are soooo much fun at that age. I say that because my sister just visted with her 17 year old, aka The Little Emperor.

By the way, as a foodie, are the turkey legs oversalted? I just drink at these things, and then try to navigate the port-o-potties in a costume.

I made whole wheat foccaccia on labor day. I know, I know. But sometimes I sin against the low carb.

I wish you the best results on your clinical trials.

September 14th, 2011 at 18:54
William Says:

Jake – a great blog and a great attitude for the TIL. As a fellow TIL-ee (I’m inpatient now at MD Anderson for the second part of the TIL protocol) I firmly believe a sense of humor, a bit of awe mixed with a good dash of not taking yourself – or all of this – too seriously, can help get you through this. The TIL is some serious Star Trek kind of science fiction come true and I’m excited you are a part of it. Keep up the blog – it is therapy for you, for me and I’m sure a for whole lot of others.

September 16th, 2011 at 15:36
elaine sculley Says:

love ur sense of humor. soon as i saw the pic of u with ur wings on i knew ur guardian angel is with u at all times. i agree that bas did have a look on his face. big hugs coming to u and ur family.

f@#$%^k to ur cancer cells

NED rules

prayers up