I just got the call from the Fellow at the National Cancer Institute confirming that they want me to be part of their program. I was also told that my surgery to remove one or more tumors for harvesting lymphocytes is scheduled for Wednesday. Apparently the surgery is not a very invasive (and pervasive) surgery, so I would only have to spend one night in the hospital, if that.

So we’ll be flying down early tomorrow morning (getting flights was a bear because of all the catch-up the airlines need to do after this past weekend’s crazy number of flight cancellations), and returning to Boston on Thursday evening.

I’ll try to post more once I finish my round of meetings tomorrow afternoon at the clinic.

 

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.

 

As you might recall from the prior blog entry, we have been in an anxious waiting period to see if the National Cancer Institute (NCI) at the National Institutes of Health (NIH) would even agree to see me for their Adoptive Cell Transfer (ACT) research program for metastatic melanoma.

I am pleased to report that NCI contacted me last night and today confirmed that I have an appointment to come in for a full battery of testing and screening in about 10 days. We’ll be in the Bethesda, Maryland area (just outside of Washington, D.C.) for several days, working in a bit of rest and relaxation before and after the testing, which I have been told is quite intense.

The testing will determine whether I am a good subject (biologically speaking) for their research protocol. I have been told by the staff at Mass General that I should hear back about my acceptance (or not) a week or so after the testing has been completed, so by the end of August or beginning of September.

If NCI were to go ahead with me as a subject, the soonest I could be scheduled for any invasive procedure (e.g. surgery or biopsy) would be four weeks after my last dose of Sylatron, because that’s how long they have determined it takes to completely leave my system. With that in mind, I did not take my final (eighth) induction-level Sylatron dose last night, meaning that I will be “clean”  on September 1st.

I don’t know that I will have anything more to report until after my screening, but I am relieved to at least have gotten my foot in the door at NCI for now, and will hope the screening shows I am ideal for their program.

In the meantime, I expect my energy levels to slowly start coming back, along with my appetite, as the Sylatron works its way out of my system. That should mean I can enjoy some nice meals with friends in the DC area when I am there. Woo hoo!

By the way, by odd coincidence, shortly after I finished my blog entry on Wednesday discussing ACT, I came across news that the same sort of process had been using to successfully tackle incurable leukemia, which is an indication of how powerful this process can be when it works. Details are here from CBS News.

 

Riding the Melanoma Roller Coaster   August 10th, 2011

It’s only Wednesday, but each day since the week started has been filled with dramatic ups and downs of a roller coaster, at least in terms of options and prospects for the on-going treatment of my melanoma.

When I started the week, based on a meeting with my oncologist last week, I was under the assumption that the 3cm melanoma tumor that recent CT scans found in my right groin region would be surgically removed, and possibly some questionable lymph nodes in my left groin region as well, to be determined by the PET scan I had last week.

My 'get out of jail' card should I have been detained for being radioactive after my PET scan last week

My 'get out of jail' card should I have been detained for being radioactive after my PET scan last week

However, yesterday morning I met with my oncological surgeon, and he advised against surgery because the results were not likely to make an impact against the spread of my cancer, but carried a high risk of tissue morbidity. Translated into English, that means that surgery would only increase the amount of lymphedema that I have in my right leg, and would likely give me lymphedema in my left leg, without any real benefit in terms of dealing with my cancer.

He did, however, confirm that the enlarged lymph nodes in my left groin were 80-90% likely to be melanoma after reviewing my PET scan (which also did not reveal any new areas of concern beyond those identified in the CT scan).

By the surgeon’s estimation, the spread of melanoma to my left groin qualified as metastasis, (albeit relatively minor in the grand scheme of things), as it meant the melanoma had spread to another part of my body from the original site in my right groin, probably via the blood stream (and maybe the lymphatic system). While cancer staging at this point is perhaps a bit subjective, I appear to have progressed to Stage IV melanoma (albeit Stage IV-A), meaning I now officially have metastatic melanoma.

The surgeon, after consultation with my oncologist, indicated my best option at this point would probably be systemic treatment, likely to be Interleukin 2 (“IL2”) and/or ipilimumab (also known as “ipi” or “Yervoy”), but that would ultimately need to be discussed with the oncologist in greater detail.

While the idea of not being able to rid my body of obvious signs of cancer was a disappointment, I must admit I felt extreme relief at the idea of not having to go through surgery again, and dealing with the painful aftermath of a catheter and the pain and annoyance of drains and bed rest and recuperation.

So, imagine my surprise this morning when I met with my oncologist and he proposed a course of treatment that might well include exactly the same surgery the surgeon advised against.

There was a big difference in intent however, namely that the removed tumors in the proposed surgery would be used to cultivate t-cells (immune system cells) which had been shown to be effective at fighting my melanoma to some small extent. These immune cells would be bred to create a much greater number of t-cells, and also boosted to make them more effective in order to create a highly tailor immunotherapy treatment specific to my exact melanoma mutation. This is considered a gene-based therapy, tailored to the individual the original cells came from.

This treatment, while still deemed experimental, has had a much higher success rate in dealing with metastatic melanoma than any other sort of systemic treatment, including IL2 and ipi – on the order of 42-60% prevention of near-term recurrence. The systemic treatments have success rates in only the single or low double digits individually, and slightly better if applied in series.

But there’s a catch.

The special treatment therapy, which is known as either Adoptive Immunotherapy or Adoptive Cell Transfer, is only performed by a small number of facilities in the U.S., and is not covered by insurance because of its experimental status, which means that the facilities themselves foot the bill, which in turn makes them highly selective. The most advanced facility for this special protocol is at the National Cancer Institute (NCI) in Bethesda, Maryland, under the guidance of Dr. Steven Rosenberg, and the program is highly selective, looking for a number of biological factors in candidate patients.

My oncologist believes I meet the desired profile (including being relatively young, in good health (not affected by the metastatic melanoma, that is), having metastatic melanoma, and having resectable (removable) melanoma tumors that are at least 4cm in the aggregate (combined)).

So, right now the hospital is contacting the NCI to submit me as a candidate for this protocol. I am told I may hear back as early as next week as to whether or not I pass the initial hurdle as a potential subject. If I pass that first level of screening, I understand I would need to fly down to Maryland to get a new set of scans as well as some tests, and if the clinical team finds my situation meets their admittance requirements, I would be scheduled for surgery at NCI.

Once my existing cancerous nodes were removed, the researchers at NCI would attempt to grow a batch of modified t-cells which would then be put into storage for use if (or more likely when) my aggressive melanoma showed up again on a future scan. In the meantime, I would continue on some sort of systemic drug treatment for my melanoma in the hopes that it would prevent recurrence. That drug treatment could still include the Sylatron I am currently on, or be IL2 or ipi (or some others as well).

If the NCI does accept me, one of the other benefits is that it will cover all the costs of my testing, surgery, and t-cell manufacture, and insurance would therefore not be involved (although it would be involved for my on-going systemic treatment at Mass General Hospital after the surgery).

If the NCI doesn’t accept me as a subject for their protocol, my oncologist and I will discuss more advanced systemic treatment, which may well start with a course of IL2. The 3cm+ tumor I have would be used as a reference to determine the effectiveness of such treatment. Clinical trials for drug combinations to combat melanoma would be a further option.

As far as my existing systemic treatment goes, I have been told to take my last induction-level dose of Sylatron tomorrow as scheduled. Considering how weary that high dosage has been making me, I will be glad to have it over.

For now, all I can do now is wait and see what the NCI says and not make any fixed plans or set any expectations more than a day or two out, since anytime I try, things change. While I may hear back next week about my initial acceptance or rejection, there’s no guarantee it will happen that quickly.

Personally, I hope the NCI accepts me. Even though further surgery intimidates me, the potential of the Adoptive Cell Transfer protocol to provide me with a future cure (at least as much of a cure as is possible with metastatic melanoma) is very appealing, for obvious reasons.

For the medical geeks among you, here are some links on the Adoptive Cell Transfer Therapy and the system drugs listed above:

 

This was originally meant to be a blog entry about my upcoming radiation treatment, and the tattoos I now have (three small dots) to align the linear accelerator beam, among other things.

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

However, at the same time as I was getting set up to start radiation treatment for the end of August, I also had a set of CT scans performed to see if my cancer had metastasized (spread) elsewhere in my body. I got word Friday evening that some areas of concern were found in my scans, but that I would need to wait until Monday (today) to learn the specifics.

Needless to say, there was a lot of stress floating around our apartment, as we feared the worst from the scans.

However, in today’s meeting with the oncologist, we learned that what the scans showed was that my inguinal (groin) lymph nodes are enlarged. In particular, deep under where I already had about 20 lymph nodes removed in my right groin, there is a lymph node that is over 3cm in size (well over an inch), and a number of smaller lymph nodes nearby are larger than they should be as well.

In my left groin region are several lymph nodes that are in the 1.5cm range.

The CT scan cannot tell if any of these lymph nodes are cancerous, but 3cm is huge, and the probability that it is cancerous is almost certain.

The good news is that there was no sign of abnormal growth anywhere other than my lymph nodes, which my doctor says he still considers a regional manifestation, and not distant metastases. That means, for what it’s worth, that I’m still technically Stage IIIC, and not Stage IV.

The actual details of what happens next are still to be worked out once my oncological surgeon returns from vacation next week (I meet with him next Tuesday morning), but I am now scheduled for a PET scan on Wednesday, and the results of that scan will help determine what action should be taken with respect to the swollen lymph nodes in my left groin, such as getting a biopsy or simply removing them outright.

The much larger lymph node in the right groin, however, will definitely need to be surgically removed, along with the other enlarged lymph nodes in the vicinity of that one. The thinking is that I will only have one surgery to deal with nodes on both sides of my groin, and that will require a bit of planning and decision making next week.

So, instead of starting radiation treatment at the end of August, I will likely be recovering from yet another surgery, with lots of mandatory bed rest, and hopefully no drains (or only short-lived ones). I will then get my planned radiation treatment once my wounds have had time to heal for a couple of months.

That in turn throws a hoped for trip to the San Francisco area in late October into disarray, as well as plans we had to return to Bonaire for a short visit this fall.

In terms of my adjuvant treatment, the current thought is that I have not been on Sylatron long enough for it to necessarily have made a real difference yet, so I will likely be sticking with the Sylatron immunotherapy treatment for the foreseeable future (although probably suspended in the time around my surgery). At present, my Sylatron symptoms are the same as before – minimal appetite and significant fatigue. My white blood cell counts are still not great, so we’ll have to see if I take my next dose on Thursday or not.

I keep hoping that I will have some stability in my life, but every time I think I’m getting there, a new twist arises to completely change things. I am grateful the latest problem is “only” more cancer in my lymph nodes as opposed to cancer in my organs, but I would have been a lot happier if there were no new signs of cancer at all. It’s certainly a bumpy ride on the melanoma train.

I’ll post my next blog entry after my meeting with my surgeon next Tuesday. Maybe I will even add a video blog at that time (I am too emotionally drained right now to do a video blog with this post – sorry).

 

It is now the fifth day since my lymphadenectomy surgery this past Monday, and I am back, sitting at my desk, in front of my computer, spending time on my typical breadth of activities. However, the activities I am performing are not all the same that I would have been involved in prior to my malignant melanoma diagnosis nearly eight weeks ago.

I find that when faced with a situation like the one I am presently in – namely a serious threat to my mortality, certain things have become more important, and others have almost dropped off the radar entirely.

For example, I have developed a sophisticated server-based e-mail filtering system, which, based on a blend of destination e-mail address (I have a virtually unlimited number of e-mail addresses that route to me), subjects, and sender information, will sort incoming e-mail to one or more of several e-mail queues. One of those queues or mailboxes – the low-priority one consisting mainly of newsletters, corporate mail blasts, and e-mails from people who still use older degraded addresses to reach me – has over 100,000 e-mails waiting in it at present. And while I’ve been planning for weeks to try to plow through all that mail, I simply can’t get myself to spend the time to clear the several months’ worth of messages which have accumulated there, as if the messages were truly important, the senders would find other ways to contact me. It no longer seems important to spend my now much more precious time dealing with things like those low priority e-mail messages.

I am also a big fan of the comic strips in newspapers – something unavailable to me in the few newspapers we get on Bonaire. One of the hidden blessings of moving to an apartment in the U.S. for my treatments was the daily newspaper delivery I could arrange (with the Boston Globe), primarily for the comic strip (and for some local news and events information). But even so, I can no longer justify the time to read comic strips that I never quite enjoyed with in the hopes they get better or more intelligible (with apologies to the fans of the Zippy and Sylvia comic strips). The reality is they won’t get more interesting no matter how many of them I read, so I really don’t need to waste my time bothering with those particular strips.

I also no longer spend a lot of time on random web surfing. When I do track stories or topics they tend to be more focused (keywords like “melanoma”, “extracapsular activity”, “cloquet”, “metastasis”, “yervoy”, “ipilimumab”, and “interferon” have been recent top search terms for me).

On the flip side, writing has always been a passion of mine, as has photography, so I am devoting more time to writing (as evidenced in this blog at present) and the continued evolution of my daily photo blog at http://www.BitsAreCheap.com.

While my home life has always been unusual in that both I and my wife work at home and our kids are home schooled, I am also trying to be more adaptable to the requests my children and wife have of me, as other than my health, they are my top priority. For example, yesterday Bas (my son) and I finished Portal II on the Xbox 360 in co-op mode, something he has wanted to do for a while. And we’ve also been playing a bit more World of Warcraft together (with my daughter Krystyana as well) in the last few weeks.

Modesty

Among the shifting priorities I have been facing and have adjusted to is “modesty”. While I have never been a truly shy person, this past week has shown me that modesty is no longer important in the grand scheme of things. I’ve lost count of how many people I have stripped down to nothing for this week (or flipped up my gown for while at the hospital – including the young and serious female intern who inquired about testicular swelling and wanted to perform a visual inspection). In addition to “show”, there has also been “tell”, where I have discussed my most personal physical details and issues with whichever nurse, doctor, or doctor-in-training who asked.

In fact, with nurses from the Visiting Nurses Association now coming by the apartment to check on me and my post-operative recovery, I find myself “dropping trou” (which, according to the Urban Dictionary means “To lower one’s pants (trousers) down to one’s ankles, often in a sudden, impulsive manner, thus exposing one’s nether regions”) almost without being asked. I think this is a subconscious move on my part to seek vindication that my surgery was worth the effort and that I am recovering properly. And frankly, with mortality on the line, showing one’s dangly bits to a medical professional is hardly a matter of huge import anymore. From a sociological perspective, it is fascinating to see how quickly our attitudes change when our situations change. My wife Linda tells me that this is a point that women determine and arrive at a lot earlier than men, since things like childbirth result in broad exposure of one’s nether regions, never mind excruciating pain – pain which could expose one’s soul to the world.

That said, I would not be surprised if misplaced modesty among others might result in delayed diagnosis and treatment solely because the patient was too embarrassed to explain or show a personal problem to a medical professional. My advice for any of you in a potentially embarrassing situation is to bare all – literally and figuratively. When it’s your health (and future) on the line, embarrassment is inconsequential and unimportant. Survival is what counts.

A corollary to this is that it’s okay to be emotional and cry, even as a male in our society. And yes, it’s also okay to tell another male that you love him (or to tell another woman who is not your spouse or other relative that you love her too). And let’s not forget hugs – we all need to get hugs, and give hugs. Sharing our emotions is what binds us together as human beings. That’s something I am relearning right now, and it has been both a freeing and grounding experience at the same time.

Don’t Use Illness as an Excuse for Inaction

As human beings, we also procrastinate and try to avoid things which are unpleasant, and we may confuse such actions with the cognitive setting of priorities. I would suggest that just because one is dealing with heavy issues, it’s not a reason to just blow off everything you don’t want to do. Maintaining a decent level dedication to your commitments, and making your time count towards things that have meaning are both good priorities. It’s too easy to simply wave off everything and do nothing, and I would suspect that would only lead to a downward slide toward depression because in the process you lose things that give you self-worth as well.

Mind you, it may not be easy to stay focused on what needs to get done, but I believe it’s vital to have goals at all times, and to pursue them, because in turn that keeps one’s spirit strong.

In Other Words…

I realize in re-reading the above that I am probably not really doing as good a job explaining myself as I should, but let me try to summarize this way: When faced with dramatic challenges in life, focus on the things that are most important to your mental and physical well-being, and never forget your loved ones – family and friends (and pets). Make the time you spend on anything you do mean something, at least to yourself. And don’t dwell on only the negative – that can never end well.

And Now, For Something Completely Different – My Status

So, with my day’s ration of philosophy and observation out of the way, let me share some updates in my health situation.

As I wrote a couple of days ago, my surgery went well. Although the swelling in my right thigh is still sizable, my overall pain level is slowly decreasing. And it made my heart glad this morning when the nurse who came to visit expressed amazement that I was up and about. She couldn’t believe I had only had surgery on Monday.

More troubling, however, have been two other things. The first was on Wednesday when my drain (pictured in the previous blog entry) had stopped showing any new liquid. Wednesday night I ended up experiencing significant swelling (including the aforementioned testicular swelling the intern had asked me about) and got a bit panicked. I ended up calling the nursing association as well as my doctor, with the result being a request that I come into the doctor’s office the following morning to have the situation looked at. I neglected to ask how such a problem would be resolved and had visions that they would have to cut me back open to unclog the part of the drain (about 8 inches worth) left inside me – this resulted in a pretty terrible stressful night of fitful sleep.

On Thursday morning, the doctor’s P.A. (physician’s assistant) was able, via a process called “milking” (of the plastic tube of the drain, in case your mind was in the gutter), get the drain working again, and I’ve now been happily draining hundreds of centiliters of lymph fluid again, with swelling in other areas vastly reduced (much to my relief!). At the same time I was also informed that there were several other ways to try to unclog drains, none of which required a brand new surgery. If only I had thought to ask I could have saved myself a lot of worry. Note to self: Ask all the questions up front whenever possible.

The second troubling item was that I also learned during the visit to the doctor’s office that my pathology report from Monday’s surgery had arrived. We were all surprised they were completed so soon.

I apparently had a total of 20 lymph nodes removed during my lymphadenectomy last week, according the excerpt shown above. Two of those nodes were “Cloquet’s”, meaning (as I understand it) that these were deep nodes, generally located closer to the organs in the abdomen. These were clear of cancer, which I took to be a mildly good sign, in that the cancer had not yet gotten closer to other organs, although my cursory literature search suggests that using Cloquet’s nodes as indicators of likely (or unlikely) metastasis of organs is not clearly established.

Of the other 18 lymph nodes removed from my body and analyzed, five (5) were found to contain metastatic melanoma, meaning the cancer has definitely been spreading. More worrisome was that the largest chunk of melanoma which had metastasized into the lymph nodes was 2.2 cm (nearly an inch) long in its largest dimension (the report provide no indication of the three dimensional measurements of the tumor), and that there was “extracapsular extension”. Extracapsular extension, as I understand it, refers to some of the cancer being located in tissue outside (external or “extra”) the lymph nodes. The member of the doctor’s staff we asked about this indicated that extracapsular extension was an indicator of an increased chance of reoccurrence of melanoma in people in whom the cancer had gone into remission.

The result of the pathology now changes my cancer staging from a Stage III B (it was borderline III A/B) to a Stage III C because of the additional lymph node metastasis. See http://www.aimatmelanoma.org/aim-for-answers/stages-of-melanoma/stage-iii-melanoma.html.

Another result of the pathology, one which I am willing to look at as a good thing, is that it has now resulted in an effort to discuss adjuvant treatment and clinical trials for new anti-melanoma drugs with me next early week instead of at the end of May as originally scheduled. I figure the sooner we can start on treatments, the better my long term prognosis.

While I had hoped for better news, I take solace in the fact that I have exchanged messages with and heard of a number of folks with similar staging who have been successfully treated for their melanoma. And getting my treatments started sooner rather than later only improves my chances, I think.

At this point I think my next update here in my blog will be the middle of next week, after my initial consultation and its ramifications have sunk in.

 

Foul Humors   May 11th, 2011

Maybe it’s no coincidence that the last fiction book I read was Ken Follett’s “World Without End”, which I started the day of my sentinel lymph node biopsy on April 1st. What now, in retrospect, seems poignant about the book was one of the main character’s struggles during medieval Britain with the common accepted wisdom of medical procedures. One of the procedures frequently advocated by the monks and men of knowledge in the book was bleeding the patient to drain the foul humors believed to be causing illness. For the most part, modern medicine has disposed of that practice, but I find it curious to be sitting here, writing today’s blog post, with a plastic tube attached inside my body, connected to a small plastic container clipped to my shirt where my “foul humors” are now collecting.

The drain installed in my body to drain off fluid build-up

The drain installed in my body to drain off fluid build-up

Okay, so I know it’s not really “foul humors”, but instead a way to provide a release for excess fluid build-up in my body now that part of my lymphatic system has been removed, but still – there’s an interesting sort of historical analogy here, as cancer treatment is still a rather inexact science (at least for many types of cancer, include the melanoma I have been diagnosed with).

As I wrote in my previous posting, I was scheduled for a lymphadenectomy this past Monday – a surgical procedure which is intended to remove potentially cancerous lymph nodes before the cancer can metastasize in other parts of the body.

At Mass General Hospital the morning of my surgery

At Mass General Hospital the morning of my surgery

I arrived by foot at nearby Massachusetts General Hospital (MGH) just before 6am on Monday, May 9th, with my family in tow. It didn’t take long for me to get processed through the surgical pre-operative routine and get parked outside Operating Room 3 (and MGH apparently has 50 operating rooms). By 8am or so, I was already under the proverbial knife in OR3, wielded by MGH’s chief oncological surgeon and melanoma surgical specialist, Dr. Kenneth Tanabe.

At 10:30am my wife Linda received a call from Dr. Tanabe explaining that the surgery went well, and there were no blatant signs that anything was amiss with the lymph nodes they removed. I personally did not regain full consciousness until sometime around 12:30pm, in the recovery unit, where I stayed until they found me a bed for the night in Ellison 7 – one of the wings where patients stay and are taken care of while staying at the hospital. I didn’t get moved from recovery to my room until about 4pm – it took a while to find me a free space.

I did discover a few things during my recovery that I had not expected. The first was that during surgery I had had a catheter administered to keep my bladder drained. I had never had a catheter before, and the ramifications were rather distressing – urinating hurt like the dickens due to a roughed up urethra, and, as I later discovered, my bladder lost its usual elasticity for a while, resulting in extreme abdominal pain later that night. That has fortunately resolved itself now.

The other thing I learned was that I had been lucky with the two prior excisions in that my post-operative wound pain was pretty minor. That was definitely not the case this time around, as my lymphadenectomy had resulted in the internal bruising (or possibly even some cutting) of muscle tissue in the area where my lymph nodes were removed). The consequence of this is significant pain anytime my abdominal or groin region tenses up, which in turn is caused by coughing, throat clearing, nose blowing, sneezing, attempting to lift my right leg, and transitioning between horizontal, sitting, and standing positions. Once I am sitting, lying down, or standing, the pain ends up going away. The unfortunate aspect of this is that I am having to utilize pain medication at present, which is not something I’m particularly fond of, as it makes my thinking a bit fuzzy (and, let me tell you, writing this blog entry coherently while on pain meds is a wee bit of a challenge).

Anyhow, shortly after I arrived in my room, my wife and children, and my “little sister” LaDonna – all of whom had been waiting for me in the Gray waiting area at MGH since 12:30pm, were summoned, and kept me company for a while.

Me in my hospital bed later in the day after my surgery

Me in my hospital bed later in the day after my surgery

I was in good spirits when they arrived, but pain was definitely a source of discomfort. LaDonna ended up leaving around 5pm because she needed to catch a train back to Maine, and my family left shortly thereafter to grab some dinner. It is definitely convenient living only a 5-7 minute walk away from the hospital, as Linda ultimately ended up making three trips to the hospital on Monday.

My nurse Natalie got me on my feet while Linda and the kids were away – it was painful getting up on my feet, but liberating in a way as well, since I could walk (shuffle) with only a modicum of pain once I was vertical.

Linda came back to visit for a bit after dinner, and then I had the rest of the night to myself – and my roommate Jack, numerous nurses, and non-stop sound and light. How anyone is supposed to get any rest and relaxation in a hospital I don’t know. Between the taking of vitals every four hours, the sounds of coughing from a roommate with pneumonia, constant alert tones and announcements, and my own bladder and pain management issues, I managed all of about three hours of fitful sleep.

When the chief resident came in the next morning to tell me that I was free to be released because I had managed to walk around the prior night, I felt greatly relieved – it was an emancipation of sorts. I didn’t think I would have been able to manage another day in the hospital (and not just due to the lack of restfulness, but also because of the unsuitable food – no real viable low-carb options – everything had starches and sugar, which would only serve to make me feel worse physically).

The process of getting back to our apartment was a bit of a conundrum. We had originally discussed the idea of having a taxi take me back, but I couldn’t see how it would possibly work considering how difficult it was for me to transition between sitting and standing, never mind that taxis don’t have a lot of leg room. So I opted for the more practical but tedious approach of shuffling my way back to our apartment on foot. A walk that would normally take about five minutes took closer to thirty minutes due to my slower and more meticulous pace. But the end result is that I am now safely back home, and after a pretty decent night’s sleep (7 hours with only one interruption), I am feeling “not too bad”. My right thigh is definitely swollen and tingly, but I have a nurse from the visiting nurses’ association (VNA) arriving shortly to remove my bandages and help me with wound care and other recovery advice.

So, what comes next?

I should have biopsy results from the removed lymph nodes by the beginning of next week.

The drain will stay attached until the bulb has collected only about 30cc of fluid for any given day (yesterday it was nearly 300cc for the whole day, and started off mostly blood, whereas now it is clearing up as the fluid collected has transitioned to lymph). The predication is that this will take a few weeks to achieve, so I will need to deal with the drain in some way until then.

And, I have my first round of clinical oncology meetings on May 31st to see what faces me next in terms of adjuvant treatments – immunotherapy with Interferon, most likely. That gives me about three weeks to learn all I can about cancer cellular biology and melanoma treatment possibilities so I can better understand my options.

 

When I was first told I had malignant melanoma, one of the leading questions bouncing around my dazed brain was “why me?” And when questions like that start invading one’s consciousness, the answers are rarely satisfactory, and are, in fact, frequently disturbing.

You feel guilt for having somehow contracted a deadly disease, but can’t figure out how you might have contracted it – was it that sunburn in Costa Rica in September 2008? Or too much time spent at high altitude in airplanes? Maybe something we ate at some point? Or too much wine? Or not enough? Could it be our low carb lifestyle? Or did that actually prevent the melanoma from cropping up earlier?

You wonder what you could have done differently so that the diagnosis had come back clean instead of laden with cancer. You wonder if you could have acted sooner to somehow head it off at the pass. You worry that since you got the disease, your loved ones might be susceptible to a similar diagnosis. And, if you’re a person of faith, you might view your diagnosis as some sort of spiritual test.

And this series of “why me?” and “what if?” questions can drive you crazy, stress you out, and depress you – none of which will help one overcome the disease, and could make it even worse, if the theories of mental attitude affecting physical wellness are to be believed (and I do believe them).

After dwelling on these thoughts for a while, and doing some research, which confirmed that even the really smart medical people really don’t know exactly why some people get melanoma and others don’t, I came to the conclusion that the reason I ended up with cancer boiled down to chaos theory, or, in other words, “shit happens” (with apologies to my kids for using the “s” word).

As I have been learning, cancer is the result of cell mutation, which, in simple terms, results in particular cells growing out of control either because they have mutated in a way that accelerates cellular reproduction (mutated oncogenes) or disables the cellular controls that prevent such rapid reproduction (mutated anti-oncogenes). Dr. Siddhartha Mukherjee, author of “The Emperor of All Maladies: A Biography of Cancer” equates these mutations to the controls of a vehicle: the accelerator pedal being pressed all the way down (the mutated oncogenes) or the brake pedal failing (the mutated anti-oncogenes).

In the case of melanoma, the type of cell that has gone nuts – at least initially – is a melanocyte, a pigmented skin cell, hence the classification of melanoma as a skin cancer and warnings by folks like the World Health Organization warning about sun exposure being the cause of skin cancers including melanoma.

However, according to a friend in the field of cancer treatment research (thanks David S.), the mutation can come from any of a number of causes, including, but not limited to, sun exposure, chemicals, or simply the build up of random errors that occur during normal cell division. So, in other words, we’re back to “shit happens”.

In a way, the idea that my cancer was a random, unpredictable occurrence is a bit of a relief, as it allows me to not have to worry about the past, and instead focus on the future.

And that future involves surgery next Monday, and then some sort of treatment – most likely immunotherapy – starting at some point in June.

The surgery I am having on Monday morning is called a “lymphadenectomy”, and involves the removal of all of the lymph nodes in the area where my sentinel lymph node was removed, namely in the region of my right groin. More specifically, I’m having an inguinal lymphadenectomy, “inguinal” referring to the groin and lowest lateral regions of the abdomen (per Merriam-Webster’s dictionary). The surgery will take between two and three hours, and will result in several incisions ranging from the middle/upper part of my right thigh up to my lower abdomen – probably an area about 12-18 inches high in total.

The reason for the lymphadenectomy is that it is believed to be a way to surgically treat cancer which has spread to the lymph nodes but has not metastasized beyond them. The lymph nodes appear to act as a dam of sorts to the cancer cells, collecting and preventing them from easily spreading in the rest of the body, but at some point they can get overwhelmed and then the cancer cells will spread to invade organs and other parts of the body. So, by removing the affected lymph nodes surgically, the hope is that it will also remove the cancerous cells (see, e.g., WebMD). There will be a biopsy performed on all the lymph nodes removed during the surgery to determine how wide spread (if at all) the cancer was in my lymphatic system.

As a bit of background, the lymphatic system is part of a body’s immune system, including the fighting of bacteria, viruses, and even cancerous cells. The clear fluid carried in the lymphatic system is called “lymph”, and lymph nodes act as a filter against foreign materials. There is a good overview of what the lymphatic system is and does here. A diagram from that link showing the lymphatic system and the lymph nodes can be seen below:

(From http://penile-cancer.ca/pc/lymphadenectomy.htm)

Of course, no externally induced physical changes to a biological organism can be made without some sort of side effects, and for lymphadenectomies, the side effects will likely include swelling from the build-up of lymph, now that the lymphatic system has been disrupted by the removal of all the lymph nodes in a given region. This swelling may or may not be temporary, and is called lymphedema. Dealing with the swelling and lymphedema in a leg would require the use of a pressure stocking. Also, during the recovery period after the lymphadenectomy, until the body has adjusted to the lack of particular lymph nodes, will also require the use of a drain to remove excess fluid build-up. The drain I was shown during my initial appointment to discuss the lymphadenectomy was about the size and shape of a hand grenade.

I expect to be kept in the hospital for a couple of days – probably getting released on Wednesday, and already have a follow-up appointment scheduled at the end of the month, followed by meetings with the clinical staff at the hospital to determine my adjuvant treatment, which will likely involve immunotherapy. Unlike chemotherapy, which involves using cellular toxins to try and kill cancer cells in the body, immunotherapy tries to boost the body’s immune system to help attack any cancer cells remaining in the body after surgical removal of cancerous bits (lymph nodes in my case).

On a separate note, the skin graft on my wide excision has, for the most part, failed to bond. Blood formed under part of the skin graft and prevented it from grafting properly. The downside to this diagnosis is that it will take longer for the excision to heal, and I will have a noticeable scar on my right thigh, but both of those items are, in my view, not significant in comparison to the greater challenges I face in fighting my cancer.