The last three weeks have not been particularly enjoyable, filled with uncertainty, angst, and a modicum of hope that what I was facing was just a minor hiccup in my treatment.

It all started on Monday, November 14th, when my doctor at the National Cancer Institute (NCI) called to tell me that their radiologist had been unable to load some of the images from my brain MRI the prior week when I was at NCI for my monthly evaluation and consult.

Unfortunately, the news wasn’t very good. Turns out that in contrast to what we were told during the consultation, the brain MRI was not clean, but that there were five “mets” (short for metastatic tumors) in my brain – the largest being 6mm (the size of a small pea) across and on my cerebellum. The other four mets were quite a bit smaller, with two each on opposite sides of my brain.

I was also informed that since I now had brain tumors (under the assumption they had formed after my TIL treatment on October 7th) I could no longer be part of the protocol (no brain tumors allowed in the protocol), meaning no more free monthly evaluations at NCI (which made the costs of CT scans and MRIs completely free to me – no insurance involved. I was therefore being remanded back to the care of my oncologist at Massachusetts General Hospital (MGH).

While we really like my oncologist at MGH, the news was a real blow – a stunning reminder that with melanoma, nothing is predictable, and that there appears to be no simple, straightforward path one can rely on in treatment, even with TIL. I would have thought my initial reaction would have been depression, but in fact it was sheer anger at this stupid melanoma and its inability to stay put and let itself be exterminated by my TIL treatment.

We made contact with my oncologist at MGH (it turns out that the immunotherapy group at NCI regularly consults with him as an expert in the field of melanoma treatment) to figure out what to do next. After reviewing our notes we were thinking that the brain tumors could have formed in the three weeks before my TIL treatment started which gave us hope that the TIL treatment might be shrinking the brain tumors in which case I could be readmitted to care at NCI. In meeting with the brain-radiation oncology specialist at MGH the following morning, we came to an agreement that I would get a brain MRI in about three weeks to see if the tumors had shrunk. If they had, I would be remanded back to NCI. If they were unchanged, we would monitor with a later brain MRI. If the tumors had increased we would go ahead with whole brain radiation.

That MRI took place last night, and this morning Linda and I met with the radiation oncologist. Turns out there was a fourth option we hadn’t considered, namely tiny little hemorrhages (bleeds) at the location of the previously found tumors, along with “new small regions of hemorrhage and in areas of previously uninvolved brain” (from the doctor’s notes), suggesting that there were tumors that were too small to be seen in the MRIs, but having an impact nonetheless. This apparently is not uncommon with melanoma mets in the brain.

Also, there was certainly no shrinkage in the previously detected tumors, and there might have been minuscule growth (which appears to be within the margin of error the MRI machine, so that’s not entirely definite either).

These factors, especially the hemorrhages, pretty much necessitate the whole brain radiation, which will stop any active bleeding (the MRI can’t distinguish between active and non-bleeding hemorrhages), as well as kill all the cancer cells in the tumors and elsewhere in my brain. That means I will likely (very high probability) be free of melanoma and bleeding in my brain after the whole brain radiation. There will be another brain MRI sometime in February to confirm.

Note too that the whole brain radiation apparently has no impact on TIL cells outside the brain, and it’s unclear if it has a negative impact on the TIL cells in the brain. Seeing as TIL cells are white blood cells, it’s unlikely, but unknown.

As a result, I started a 13 day course of whole brain radiation today at dose of 2.5Gy per day (takes all of 30 seconds for the two exposures needed, but about five minutes for set-up and tear-down). I had to get a form fitted mask made to ensure my head would be perfectly aligned to avoid irradiation of non-brain parts (eyes, nose, etc.)

The custom face mask made using my face - the mesh allows for easy breathing

The custom face mask made using my face - the mesh allows for easy breathing

 

I will need to go into the radiation oncology facility at MGH every week day through December 15th for this radiation treatment. While the treatment is quick, if the Linac device I am scheduled for (there are three there, and I’m assigned to a particular one for the duration of my treatment) is backed up with other patients, I may have to wait up to an hour for my radiation treatment.

Me with my custom mask on, getting ready for my first dose of whole brain radiation

Me with my custom mask on, getting ready for my first dose of whole brain radiation

The side effects of this treatment are likely to include hair-loss – Hah! – I have that one covered! (see photo below). In my case it will mean that my hair will take some months longer to grow back. The other likely side effect is fatigue, which would be layered on top of my existing fatigue, which has not been significant so far. The radiation oncology doctor indicated that some of his patients are prescribed Ritalin to help overcome radiation induced fatigue.

Jake Self-Portrait - November 16, 2012

Jake Self-Portrait - November 16, 2012

Still missing from the above is a discussion with my melanoma oncologist about what to do about follow-up body scans to see how the TIL treatment is working, since NCI won’t be providing these any more (meaning, by the way, that our planned trip to Bethesda next week no longer exist). Another discussion that will need to take place is whether it’s a good idea for me to have some other sort of systemic treatment, like ipilimumab (Yervoy). Those discussions should take place in the next six weeks.

For those of you wondering, our trip to Bonaire at the end of the year, necessitated by the requirements of our special medical insurance for U.S. citizens who are foreign residents, is not affected by the radiation treatment. I’m hoping the fatigue won’t interfere with the enjoyment of the trip back home.

So, while these dramatic changes are frustrating, the fact there is a plan that will deal well with my brain mets in place gives me hope that we can move back to Bonaire full-time in April 2012, with my taking occasional trips to Boston for appointments while finding a guest bedroom to crash in with family and friends during my visits.

Some other miscellaneous notes that might be of interest to those of you following things more closely:

Dry Mouth Update – My dry mouth continues to improve. Sleeping with the dry mouth is no longer a real issue. If things get too dry I use a dry mouth mouthwash to un-dry my mouth. I can now taste and enjoy a pretty wide range of flavors (within the bounds of my neutropenic diet). Exceptions are spicy (chili pepper spice, like cayenne) foods, and foods with high acidity. White wines are unpalatable at present because of this, and red wines are drinkable but not as enjoyable yet as they were before my treatment. I don’t suffer a lack of appetite, although my shrunken stomach has physical limits as to what will fit inside.

A New Richter Cousin – One of the nicest unexpected side benefits of my melanoma treatment has been the discovery of a heretofore unknown Richter cousin. I first met Carolynne at the PET scan waiting room at MGH early this past August, and we got to talking about our respective melanoma occurrences and spread and the fact we both had the rarer NRAS gene mutation instead of the more common BRAF mutation. When I came back from my injection with the radioactive isotope, she and her husband Mark were gone. But a month or so later Carolynne had found this blog and sent me a message to explain her maiden name was Richter. With my father’s help, we found that our family tree shares an ancestor from the mid-1800s, and that her next generation ancestor after that was the brother of my similar generation ancestor. Look at the picture below and judge for yourself. The photo comes from when Carolynne and Mark came to visit us for a few hours of social and melanoma chat about a week ago. Definitely a major highlight of November for me.

Richter Cousins

Richter Cousins

Weight and Girth – My weight post-treatment has been holding steady at around 200 pounds. Sadly, a lot of that weight loss is muscle tissue, and not the roll of chubbiness around my mid-section (though that has decreased too). I have not weighed that little since late junior high school or early high school, when I was also a number of inches shorter than I am now. My waist is down to around 32″, the same as that of my 14-year old son Bas.

Neutropenic Diet – I am presently more than half-way through the three months that I need to be on my neutropenic diet, which ends on January 6th. I will be looking forward to my first medium-rare bone-in rib-eye after that date, with a green salad. Both are things I am not allowed to eat at present. I’m also planning for Bobbe Jan’s ribs and fries on January 6th, my last evening home on Bonaire before flying back to Boston. Yum.

That’s it for now. More when notable stuff happens, and apologies for not posting sooner, but we didn’t want to increase the amount of anxiety in our families and friends until we knew what was happening.

 

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.

 

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.