Shaking Up Melanoma Cancer Treatment With TIL   August 26th, 2011

Our few days earlier this week in the Washington, D.C., area – which were centered on my scheduled testing and interview at the National Institutes of Health’s National Cancer Institute (NCI) – have been dizzying. And shaky, as we got to experience an earthquake during the process. It wasn’t a big deal, but it was interesting to go through and observe, including the mandatory building evacuations.

The Mark O. Hatfield Clinical Research Center at NIH, seen after our evacuation after the earthquake

The Mark O. Hatfield Clinical Research Center at NIH, seen after our evacuation after the earthquake

The actual physical tests and examinations performed this past Tuesday at NCI were routine – taking my blood (13 different vials, though), an EKG, chest X-ray, and a urine sample.

Linda and I also spent time with a social worker who explained how treatment at NCI worked: it’s free to the patients, as it is a federally funded research facility, and they will even take care of transportation costs for the patient (but not the spouse or children of the patient) from anywhere in the U.S., as often as necessary. There’s also a small lodging stipend ($50/day) for the patient’s hotel room if the patient is an outpatient.

One of the benefits, in terms of treatment and medical care, of not having to deal with the costs of such care (personally or via insurance companies) is that there’s no wait or delay in waiting for pre-certifications or considerations about the expense of tests that may or may not produce useful results.

That philosophy became evident on Tuesday afternoon (after the hubbub from the earthquake we experienced had settled down), when the new Fellow (a term for a doctor on a long term rotation) assigned to me suggested I could have surgery in the next couple of days to remove my largest tumor to use in harvesting lymphocytes (immune cells) which would later be used to fight my rapidly spreading and growing melanoma.

The mere suggestion that they wanted to operate on me indicated that my acceptance into the so-called TIL (tumor infiltrating lymphocytes) protocol was almost a given at that point. That was a huge relief.

As part of our meeting with our Fellow, we also met with the Attending doctor who has worked at the NCI immunotherapy clinic for the last decade. Fellows rotate out every year in July, while the Attending doctors rotate every month or so, incidentally. They gave me a physical examination, palpating me to see if they could feel any tumors (and they thought they could feel some around my lymphadenectomy site). They also confirmed that the rapidly growing mole that I had on my right thigh, located about 1.5 inches from the old melanoma mole, was a new melanoma, as I had surmised a couple of weeks ago.

One initial idea raised at this meeting had been that they might try a radical surgery to remove both the large 3cm+ tumor found on the scans last month, as well as any other lymph nodes, in the hopes this might eliminate the cancer from my system, but after the examination and the identification of the mole they agreed that survey was not the way my cancer could be dealt with as I likely had some “melanoma channels” throughout which the cancer had spread and continues to do so. No surprise there – I already knew that instinctively based on how aggressive my melanoma has been.

In order to help determine the best course of action, as well as provide data that was incomplete in my records, I was asked if I could come in the following day for a brain MRI and a CT scan of my abdominal and thigh regions. We had fortunately tacked an extra day and a half to our trip when we planned it, so I was able to stay at NCI all day yesterday (Wednesday) for those two scans, which were arranged for me by a uniformed research nurse who is our direct link with any information or support we need on the medical side.

At the end of the day I exchanged e-mail with our Fellow, and she informed me that the CT scan did confirm that all my tumors were continuing to grow (again, no surprise there), but that from a treatment perspective, this was helpful as it provided more potential samples, as well as reference tumors to use to see if the treatment was working once started. However, surgery was not happening this week, as she and the Attending wanted to present my case formally to their colleagues at the weekly Monday staff meeting, and solicit ideas on how to best proceed with my tumor resection and subsequent treatment.

The clinical protocol, which is really a clinical trial, discussed with everyone on Tuesday has several steps.

First is the harvesting of lymphocytes from a tumor. They need at least a 2cm wide tumor to do this, and my largest tumor is quite a bit larger than that at this point. This is an invasive procedure but in the case of my tumors in the lymph nodes is less tricky than removing a tumor from an organ which thankfully my melanoma hasn’t gone there yet.

Next, the labs at NCI extract the lymphocytes and grow them. They use Interleukin-2 (IL2) to help “boost” the cells as they breed them. This process takes a couple of weeks or so, if it is successful.

Once it is confirmed that the lymphocytes are replicating and growing properly, I would get flown down to NCI to be formally admitted into the clinical trial.

For those of you interested in the details, the link to this trial is here. There is also a really good FAQ here.

In case you also are interested, the rather scientific title of the trial is “Prospective Randomized Study of Cell Transfer Therapy for Metastatic Melanoma Using Tumor Infiltrating Lymphocytes Plus IL-2 Following Non-Myeloablative Lymphocyte Depleting Chemo Regimen Alone or in Conjunction With 12Gy Total Body Irradiation (TBI)”.

Once I signed the agreement to participate in the trial, a computer would flip a virtual coin to randomize me into one of the two arms of the trial. The first arm is the basic TIL treatment, while the second arm is the basic TIL treatment with total body irradiation (TBI), namely three days of extreme radiation treatment. As I understand it, the purpose of the trial is to determine whether or not the radiation component increases the cure rate appreciably or not across a wide range of people. The current belief is that it makes a small difference, but this trial will help quantify that difference. That in turn will help determine whether the amount of difference is significant enough to justify the abuse of the body the radiation treatment adds to the process.

If my virtual coin flip put me into the arm with TBI, I would stay as an inpatient for a week at NCI while they extracted stem cells from me. These stem cells would be grown and stored for reinjection after the radiation treatment was over, since the TBI would kill all the cells in my bone marrow, which include cells which generate all of my white blood cells (for fighting infection, among other things).

This initial visit would be shortly followed by another visit to actually perform the core part of the treatment.

First step in the treatment would be to have five days of chemotherapy to kill my immune system and create a vacuum to allow my boosted lymphocytes to both have a more dramatic effect on my melanoma tumors (as well as individual bits of melanoma floating in my system) as well as prevent my body from just reabsorbing the injected lymphocytes without letting them perform their intended function. Note that the chemotherapy would be unlikely to have any effect on the metastatic melanoma in my system.

The chemotherapy side effects would be much the same as for traditional cancer chemotherapy, including full body hair loss, nausea, fatigue, etc.

If I were in the TBI arm of the trial, the chemotherapy would be immediately followed by the full body radiation, which has a pretty nasty set of side effects, some of which overlap with those from the chemotherapy. The radiation side effects can (and likely will) last many months, or even the rest of my life (including infertility – fortunately not something I am concerned with at this point in my life). The radiation would further weaken my immune system in order to make my reintroduced lymphocytes more effective.

Once my immune system was wiped out, the lymphocytes would be administered via an IV, and if I were in the TBI arm, the harvested stem cells would be administered as well to help my bone marrow regenerate to rebuild my immune system.

I would then go on a short course of intensive IL-2 (up to 15 doses, given eight hours apart) to further boost the lymphocytes now in my body, to help them better battle my cancer cells. After that it would be just a matter of time to recover from the nearly two week abuse of my body in order to try and cure the cancer.

The amount of time for recovery from the highly weakened state depends greatly on a number of factors, but the trial documents suggest for the non-TBI arm it should be two to three weeks in the hospital. For the TBI arm, it would be that plus four to six months of recovery to overcome the recurring fatigue, nausea, and other side effects that will undoubtedly arise.

There would also be return visits back to NCI every four to six weeks for scans to see how effective the treatment was. That would go on for a year, with semi-annual visits after that.

The one thing that this arduous treatment offers that so far we had not heard is the possibility of a near total cure. Statistically this has occurred in approximately 50% of the subjects, but that’s a heck of a lot better than the odds with traditional adjuvant treatment for melanoma, which in most cases, if it works, only seems to put off a subsequent recurrence to a later date (albeit potentially a much later date). And that difference – between a cure and a delay – is what will make this TIL treatment – with or without TIB – worth all the sacrifices necessary to get through the treatment.

In closing, I would like to also give special thanks to my new friend Jamie. Jamie blogs as Melanoma Mom ( and has been getting treatment at NCI since March for metastatic melanoma (read her blog for details). She and her husband Jeff are incredibly well-informed about various trials and protocols at NCI, as well as the logistical issues of being an in-patient at NCI. And Jamie is taking part in a rather revolutionary treatment herself starting in about two weeks at NCI. She, Jeff, and their beautiful baby boy, Kai, were kind enough to get together with us on Tuesday night (they live only 20 minutes from NCI). We learned so much from her and Jeff, and are thankful to number them among our friends now.

One simple thing Jamie taught us that I can easily share with you is a toast when you share a drink with others: “To NED!”

NED is an acronym for “No Evidence of Disease”, and that’s Jamie’s goal and my goal for our respective melanomas.

So please hoist your glasses to NED, often and with gusto! I know I certainly will!

My next post will be once my treatment course and schedule solidify just a bit, hopefully early next week.


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This entry was posted on Friday, August 26th, 2011 at 10:09 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.

34 Responses

August 26th, 2011 at 10:17
Cecil Berry Says:

NED it is Jake.

August 26th, 2011 at 10:35
Gail thomas Says:

I agree. NED it is. Thank you so much for keeping us all informed.

August 26th, 2011 at 10:37
Faith Says:

Full-body hair loss, eh? That’s a lot of hair… :) Sounds like things will move quickly once they get the schedule set. Nice…


August 26th, 2011 at 10:38
George & Laura Says:

Hi Jake,
You always seemed to be a person on the leading edge of a new direction. And you’re doing it once again. Next time pick something a little easier.
In six months or so when you get your NED report the whole arduous process you have to go through will seem so trivial.

August 26th, 2011 at 10:43
Tish Says:

Since you’ve insisted on experiencing an earthquake and a hurricane in the same week, Jake, stay dry, please!!

To NED!!!!!

Hugs and love,

August 26th, 2011 at 10:52
Leslie Lindsay Says:

cha cha cha!

August 26th, 2011 at 10:55
Steven Says:




August 26th, 2011 at 10:58
Corky and Sy Says:

NED it is, Jake … our glasses are raised high! Good luck with the trials … our hearts are with you.
Love and Hugs,

August 26th, 2011 at 10:59
Michael Says:

I do hope that everyone who follows your writings recognizes your courage and grit! My prayers are always for you, Linda, and the kids. I am adding your doctors to the list as well that they may continue to be guided to curing you. Bless all of you!!Michael

August 26th, 2011 at 11:09
Barbara Leary Says:

To NED for sure. One note, a Fellow is someone who has completed medical school AND a residency (3 to 5 years of clinical training after medical school after which many physicians go into practice) The Fellowships give additional, specialty training and provide us with the experts in the field of study. Just wanted to add that clarification so you know that you are being seen by someone who has already completed a great deal of training.
Please keep us posted re: anything you might want/need/be able to use while at NIH. Books, food, anything that makes the process more tolerable!

August 26th, 2011 at 11:29
Ford Says:

Your courage and determination are magnificently inspirational. Skaal to NED!

August 26th, 2011 at 11:31
Cynde Says:

To NED! I’ll say it again, Jake, you are my Poseidon of the sea and melanoma…you will kick this my melanoma warrior! Glad you met Jamie. I know there’s a whole community of melanoma warriors out there fighting the battle and it helps to share…

and selfishly, i want you back on bon cooking ducks in the spit :)

Loving healing thoughts coming your way, and rest for the caregivers Linda, Krystyana, and Bas

August 26th, 2011 at 11:35
kelly Says:

Always will be…. To NED !!!

August 26th, 2011 at 11:40
Monica Wirth Says:

Press onward– attack and believe, believe in NED! hugs to all

August 26th, 2011 at 12:03
Ann Phelan Says:

and another to NED

August 26th, 2011 at 12:45
Scott Says:

Drinking to NED! looking forward hearing about your next chapter….fight on brother.


August 26th, 2011 at 13:06
Jean Stefanik Says:

To NED, indeed! All the best thoughts and wishes are headed your way as you continue this journey.

August 26th, 2011 at 13:16
Steve Says:

Here’s NED in your eye!

August 26th, 2011 at 13:30
Denise & Teddy Says:

To Ned, with <3

August 26th, 2011 at 13:40
Carole B Says:

Bottom’s up to NED! So thrilled to see you have been accepted into the trial program, Jake. Your blogs are inspiring. Your positive attitude and outlook will prevail over this damn disease. Hugs, prayers & well-wishes, my Friend. Ayo Carole & Joe

August 26th, 2011 at 14:41
Greta Says:

Praying for you, the family and the docs…always!

Will definitely toast to NED next time we raise a glass here in Texas…and it will be a BIG toast as everything in Texas is supposed to be big! :)

BIG hugs….scratch that….HUGE HUGS to you, Linda, Bas, & Yana!

Greta, Trent & Grant

August 26th, 2011 at 15:14
Liz Says:

To NED…for both of us!!!!

August 26th, 2011 at 15:54
Cynde Says:

How rude of me, congratulations on getting into the NCI program…and to NED again!

August 26th, 2011 at 16:34
Margarite Says:

…… to NED and the time to enjoy good health!

August 26th, 2011 at 16:53
Nathalie Says:

Sending positive thoughts to you and to NED! Your fortitude inspires.
Nathalie, George, and Chris

August 26th, 2011 at 17:37
Kathy Says:

To NED … And I am thrilled that your connection to melanoma mom aka Jamie has worked out …

August 26th, 2011 at 18:34
Lisa Amidei Says:

Will definitely raise a glass to NED!!!! Stay strong Warrior.

August 26th, 2011 at 19:37
Resa & Mark Says:

To NED! Our thoughts & prayers are with you and your family. And “you’ve got mail on BT2”.

August 26th, 2011 at 20:33
Francine Dewhurst Says:

Hugs and Kisses Jake! To NED!!!!

August 27th, 2011 at 13:45
Trent & Cinde W Says:

Sending you lots of love & support form here.

August 27th, 2011 at 18:02
Niki and Bob Says:

I raise my cup to Ned. May that good buddy long be your friend and ours.

August 29th, 2011 at 12:55
Neptune Nick Says:

Hope all goes well with your treatment.

Very familar with the NIH campus in Bethesda as I’ve lived in Montgomery County all my life. It’s about 15 minutes south of where I am. They do very good work there and know you are in great hands.

Hopefully we’ll meet when all goes well and you’re back on Bonaire!

September 23rd, 2011 at 11:44
donkeymarina2 Says:

Dear Jake ,
Keep on fighting and stay strong , you have so many friends who are thinking on you

October 21st, 2011 at 20:59
cancer center Says:

cancer center…

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