Day 9 – Immune System Returning   October 15th, 2011

My hopes for a start to the recovery of my immune system have been fulfilled. Yesterday my white blood cell count was hovering between zero and 50 lymphocytes (4000-6000 is normal), and this morning I was at 130, and by evening up to 330.

I may or may not have any countable neutrophils, but with the WBC lymphocyte count increasing, I will start having them soon – tomorrow or Monday for sure. The neutrophils tend to be in proportion (70% or so) to the white blood cells (lymphocytes), but not necessarily when the numbers are small.

In order to be discharged I need to have three days in a row where my neutrophils number 1000 or more, or one day where they are 5000. And my platelet count needs to be steady above 20. I may be out as soon as Wednesday, but it could also be next Saturday, depending on how things go.

While I had a couple requisite naps, my energy levels were definitely a bit better today, and I even got to go outside (with sterile mask on) to enjoy a bit of the sunshine. Haven’t experienced any part of the outdoors in over two weeks at this point. I was pretty wiped out after both my slow walks with the girls (hence the naps).

After my afternoon blood work, I ended up with another 6 unites of platelets, as I was back down to 17,000 (from 23,000 this morning). And I was given magnesium via IV to compensate for a small deficiency earlier in the day.

I still am maintaining a mostly mild fever (99.0-100.6F/37.2-38.1C), which appears to not be unusual for someone who went through the TIL/TBI treatment (and is even considered a likely sign that the TIL are hard at work).

Several of you had asked question about broths and food in general with respect to my mouth dryness and soreness. I am finding I am having an easier time with warm liquids than with room temperature or cold. And thinner liquids create less of a mucous issue than creamy or thick ones. So clear broths with added material (meat protein, maybe some noodles) work pretty well as does warm tea (room temperature tea is not bearable). Solids outside the broths are not very good at this point because they get stuck in my mouth and require lots of water and gagging to get them down.

Linda had me try a thin butternut squash soup today, and I managed to get a fair bit down, but it was still too thick to do again in the next couple of days. We also experimented with apple juice. I couldn’t stand the bitterness and acidity of cold apple juice when I tried it this morning, but after Linda heated it up in a microwave, and it became more more palatable. Go figure.

The respiration department here at NIH also dropped off a new toy which might make sleep easier – it’s a vaporizer that uses oxygen to mist sterile water into a tube and attached mask. It’s very loud, but I have high hopes for it working tonight now that I understand how it works (although I think I look a little alien with the mask on). Would be great to maintain moisture in my mouth and nasal passages while I sleep.

I will leave you all with a webcam capture of the latest evolution of my Mr. Clean look. And no, no plans for any earrings (sorry Dara) :-)

Going for the Mr. Clean look, sans earring

Going for the Mr. Clean look, sans earring

 

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

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

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

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!

 

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

 

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!

 

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 (http://melanomamom.blogspot.com) 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.