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Day -2 – About Halfway There October 4th, 2011
One year ago yesterday, Linda and I were in Roses, Spain, having the best meal experience of our lives under the personal care of Chef Ferran Adria and his now closed (but still worshiped) el Bulli Restaurant.
It was a lunch event like none other, involving over 35 course, meeting four new foodie-friends-for-life, and it took a mere seven and a half hours (and ended early only because our prescheduled taxi service was getting impatient). And the wine pairings were out of the world – perfect when sipped with a bite of the paired food. Though, Ali (one of our new friends) and I did more than sip our way through a fabulous Alvaros Palacios 2004 Priorat.
As I sit here tonight at the National Cancer Institute in Bethesda, Maryland, working my way through dinner – consisting of peanut butter, jelly, and cream cheese in a low carb tortilla, and needing frequent enough sips of water moisten each bite enough to prevent me from choking on the dryness (since I have virtually no useful salivia production left at the moment), I can’t help but wonder at what a bizarre but still amazing year it’s been. Those of you who know me know I enjoy exploring cuisine and culture – from eating guinea pig in a hole in the wall in Quito, Ecuador, and street food in Fiji and Kowloon, to enjoying the cuisine of top chefs in New York, Hong Kong, and Boston. And yes, even enjoying fried butter at the state fair.
I see my salivary problems (and I have been told that those will be accompanied by loss or change of taste) will last for some time (in addition to the three months of neutropenia). But in adversity, there’s challenge, and being a devout experimenter in the kitchen, I am sure I can come up with some foods that will overcome my limitations and provide both enjoyment and education, once I’m physically able to spend time concocting. The time spent recuperating will also give me a chance to figure out how I might want to change my approach to cuisine (which in the past was to treat it as a visual as well as olfactory art form) in use in the fine art food photography I had started work on last year.
I lead in with the above as a sort of precursor that I’m doing about the same as last night and don’t have much more to say.
I am now totally neutropenic – with nary any neutrophils left to count in my blood. Other symptoms from yesterday persist: Dry mouth, swollen jaw, slight tiredness, and – how to politely put this – intestines that are a bit more aqueous than they should be. But all those are under control.
Considering I just went through another two rounds of total body irradiation (TBI) today, that’s not bad at all. No sirree. I’ve been informed that I’m not the first to have charged through the first six days into the treatment so well, and that folks here remember two other prior patients similarly bypassing the most common and debilitating side effects. The usual trend tends appears to be towards a lot more unwellness early on and then staying that way for the course of treatment and beyond.
So please cross fingers and knock on wood for me some more that I can buck the side effect trends further after tomorrow’s final two doses of radiation. The side-effects induced by those two final treatments will not immediately appear, and might take a few days to manifest. Again, all I can do is wait and see what happen, and hope for the best combination of events (and ask the same of you).
For a recap, Day -1 (tomorrow) is the last day of radiation. Day 0 is, well, THE DAY. It’s when I get my billions of TIL cells injected into my system. I have a carefully thought out music playlist created (with some help from my friends) that I will play to help encourage them to hunt and kill all those nasty growing melanoma cells in my body. I hope to publish that on Thursday before I start IL-2 later in the day, as I understand that once IL-2 starts I won’t be in shape to do much of anything at all for five days.
To N.E.D.!
P.S. Any plans to give blood yet? If not, please think about it.
Tags: Alavaro Palacios 2004 Priorat, blood, cancer, el Bulli, Ferran Adria, Jake, melanoma, NCI, NIH, radiation, TBI, TIL, treatment
Glowing Opportunities in Melanoma TIL Treatment September 16th, 2011
I write to you tonight from my private (for now) room at the National Cancer Institute (NCI) in Bethesda, Maryland. For those of you who follow this blog closely, you will understand that this means that when I signed the agreement to participate in the Melanoma TIL (Tumor Invading Lymphocytes) clinical trial here yesterday, I was randomized into the arm of the trial which adds Total Body Irradiation (TBI) to the base TIL treatment.
This is actually a good thing – even with the nasty side effects – because the use of TBI, based on anecdotal evidence, appears to contribute handily to improving the response to the TIL treatment. And, as it was confirmed this morning that the melanoma has now started to spread to my liver and my lungs (small tumors were spotted on the CT scan on Wednesday), I am pushing for every bit of help the TIL treatment can get in killing my melanoma. So TBI is most welcome as a part of my treatment.
The emblem of the surgical unit of the National Cancer Institute
A short while ago I received my first set of injections of a medication called G-CSF a.k.a. filgrastim a.k.a. Neupogen. The purpose of this medication is to stimulate the growth and release of stem cells into the bloodstream. The careful readers among you may notice that I referred to “injections” in the plural. As it turns out they can only inject a maximum of 2mL of filgrastim per injection site, and my dose is 2.8mL, so they split the dose in two, shot into opposite sides of my belly. I apparently will be getting two shots every 12 hours (at 7am and 7pm), instead of one larger one, for the next five days. Eek.
I guess I shouldn’t be surprised by having to be poked twice as often, as needles have been a big part of my week here in Bethesda. In counting the number of times I have been punctured in the last three days, I get to twelve. Only nine of those were successful. This includes the two belly injections tonight, two sets of drawn blood, three IVs, and two related to my leukapheresis. The puncture wounds on my arms alone make me look like a junky. But that should have changed with the small surgery I had this afternoon to install a double-lumen Hickman catheter (more on that later).
The feeder apheresis, also know as a leukapheresis, was pretty interesting. As described in my prior blog post, the idea was to remove blood flowing through one arm, filter it for the desired blood component, and put the remaining blood components back into my body in the other arm. And that’s pretty much how it worked yesterday morning. All in all, 15 liters of my blood (which is about 3-4 times my total blood volume) was run through the apheresis machine to produce almost a liter of mostly white blood cells. The process ran nearly four hours, and after the initial installations of the intake and outtake needles, was pretty painless.
My white blood cells after the leukapheresis
The filtering process is actually a centrifuge which forces the components of my blood into separate layers, one of which is the white blood cell layer. It’s next to the red blood cell layer, which is why the above bag of white blood cells is reddish in color. The white blood cells will be further separated out in a lab, and then fed to the TIL cells being grown for me, since those cells will appreciate a “homey” environment (namely from my body).
Next Wednesday morning, all the stem cells being released into my body will be collected via a stem cell apheresis, but this time I won’t need to be punctured again. That’s because this afternoon I had a dual-lumen (two port) Hickman catheter installed into my jugular vein.
Diagram of a dual-lumen Hickman catheter
The doctor installing the catheter indicated it was 23cm (almost 10 inches) long. It starts in the middle right part of my chest, loops up over my right clavicle, and down again into the vein. At the end of the catheter (the part inside my body) are two openings about 1.5 cm apart, at right angles from each other. The catheter itself has two independent channels (lumen), one connected to each of the openings.
On the end of the catheter sticking out of my body are two ports which can take IVs, but more importantly, can also be used for my stem cell apheresis so I don’t have to be poked again for that (or future apheresis or any IVs other than for CT or MRI contrast injections).
The catheter is pretty uncomfortable tonight – a little bit of pain, plus a feeling like I bruised my neck muscle, but the doctor (and the nurses here) said I would get used to it in a couple of days. Good thing, since I need to continue to keep it in for at least three months.
I also had a dietician come visit me today to discuss my dietary needs and restrictions once I start my actual treatment of chemotherapy followed by the radiation and IL-2. And, even more importantly, the months after treatment where I will be recovering from the effects of the radiation. About half-way through my treatment, I will achieve a point where I am “neutropenic” – having little or no white blood cells with which to fight off any infections or illness, and that will require being extremely careful about what foods I eat (and whose hands I shake).
However, even as my white blood cells come back after the reintroduction of my stem cells, I’ve been told that I will need to maintain a neutropenic diet for about three months after treatment to avoid complications. This cuts a lot of fun and interesting food out of consideration for consumption, so perhaps I should take solace in the fact that I won’t have much of an appetite, as well reduced taste sensation, during my recovery.
An overview of the “can and cannot eat” items in a neutropenic diet can be found here.
After I return back to Boston on Friday or Saturday, I can only count on being there for between five and twelve days, and I’m betting on the lower end of that range based on how fast things have gone at NCI. Then I’ll be back in Bethesda, starting my treatment, and hopefully moving my way through the final step towards NED – No Evidence of Disease!
Tags: apheresis, cancer, Hickman catheter, Jake, leukepheresis, lymphocytes, melanoma, NCI, TIL
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.
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
Tags: cancer, Dr. Steven Rosenberg, gene therapy, immunotherapy, Jake, King Richard's Faire, lymphocytes, melanoma, National Cancer Institute, NIH, TIL, treatment
Another Day, Another Cancer Surgery August 31st, 2011
Today marked my third surgery of the year.
The first surgery, almost exactly five months ago, was to confirm whether I actually had cancer (it did).
The second surgery, about four months ago, was to try and confirm whether the cancer had spread (it had), as well as try to remove it surgically (didn’t work).
Today’s surgery was not about verifying or fixing anything, however. It was to remove cancer tumors from my body and use them to create a cellular therapy, using my own cells to fight the metastatic melanoma growing in my body. This was explained a couple of blog entries ago.
What I did not discuss in that blog entry last week, because I didn’t know, was that the firm lumps immediately below my lymphadenectomy scar (surgery #2) were not scar tissue as we had believed, but instead were new, growing melanoma tumors. Three tumors, as best as we could tell via touch. That determination was confirmed via the CT scan I had taken last week while I was here at the National Cancer Institute’s (NCI) Clinical Center.
The impact of this new determination resulted in a change in my surgery today. Originally the thought had been that the 3cm+ tumor in my right iliac region, spotted during a CT scan a month ago, would be the tumor removed for harvesting immune cells. But now that tumor, along with other smaller ones in my groin lymph nodes, remains within me, to be used as references to determine whether my upcoming treatment has been successful.
So instead, this morning, around 10:30am, surgeons removed a chunk of biological material almost the size of a baseball from my upper thigh, consisting of the aforementioned three tumors and surrounding tissue which was of questionable state and use (like old scar tissue). They also removed the new melanoma mole that had been forming (which had achieved a respectable 6mm in diameter after only six weeks) near the original mole site.
The size of the extracted mass was intimidating when I learned about it. I have been told there may be a permanent “dent” in my thigh once healing completes.
But what’s really important is that the folks here at NCI now have sufficient amounts of my melanoma to try and harvest the immune cells they need to help treat and hopefully cure me of my cancer.
The next step is that we need to wait a couple of weeks to see if they were able to harvest the necessary lymphocyte cells from my tumors.
I am going with the assumption they will be successful with that step, in part because that’s the assumption here at NCI as well (though no guarantees, of course).
Once enough cells have been grown, I will come back to Bethesda, sign the agreement for the treatment, and then be randomized into either the normal TIL treatment or the one with radiation, as I discussed last week.
In the meantime, I will have a couple of weeks during which the wounds from today’s surgery can continue healing up (I haven’t seen them yet, but will soon enough). I am already able to walk around (albeit slowly), with only a small bit of pain from the surgical areas.
I will be released tomorrow so I can fly back to Boston with Linda in the evening. I must admit that the prospect of the flight is a bit unnerving, though, because I was only able to secure a window seat on the flight back (Hurricane Irene related flight cancellations resulted in very heavily booked flights all this week). I hope I’m able to work a deal with someone (either the airline or another passenger) for a left-hand side of the plane aisle seat so I can stretch out my right leg.
But even if I can’t negotiate a better seat, I’ll manage – it’s a small thing in the grand scheme of things. The really important thing is that I’ve taken another step – a very critical one – on the path to NED (No Evidence of Disease).
Please note I probably won’t post another blog entry until I have heard back from NCI about my TIL cell harvest results, which may be in the next two to three weeks. Until then: To NED!
Tags: cancer, Jake, lymphocytes, melanoma, metastatic, National Cancer Institute, NCI, NIH, surgery, TIL