The Various Fogs of Cancer and Melanoma   May 22nd, 2011

While I wasn’t particularly concerned about the earth being ravaged by earthquakes yesterday as part of the widely publicized rapture, I did find myself relieved that nothing of earth shaking significance happened anywhere. I also find myself pitying the thousands of Rapture believers for whom reality contrasted sharply with their fervent beliefs and expectations in what was going to happen to them. It’s a lesson that those of us who have been diagnosed with cancer can learn from as well. And before you suggest I’m being negative, let me point out there’s a difference between hope and expectation. I hope and wish that I will live a long time. However I limit my expectations to the near-term, as that is all I can judge and evaluate.

Part of the reason for limiting expectations is that cancer in general is the result of a mutation, and this cellular mutation exists and adapts in a very Darwinian fashion. Much as we try to kill the cancer cells, the cancer cells are trying to survive. So, while surgery and treatments may eliminate virtually all of the cancer cells in a body, there’s no proven, consistent way across all patients, to completely eradicate all residual cancer cells in a patient. In some cases, it works out, but the statistics and probability of complete “cure” vs. almost guaranteed relapse vary based on the type of cancer involved. According to “The Biology and Treatment of Cancer”, there are around 200 different kinds of cancer cells identified so far, with most unique enough to require targeted treatment. And it’s not uncommon for cancer cells to mutate further during some chemotherapy treatments and become resistant or immune to those treatments, requiring a new one to be applied or even developed (from “The Emperor of All Maladies”).

I understand from friends who have and have had cancer, as well as from my readings, that the stress and anxiety that surrounds the regular scans they have to see if their cancer has returned is high, because, of course, it could signal having to go through a whole new round of procedures with an uncertain outcome. And for better or worse, after my upcoming treatments are complete, I too will be victim to a (hopefully long) life of uncertainty, especially as my form of melanoma, which I’ve been told is “nodular melanoma” – a very aggressive form, evidenced by the progression from nothing to multiple tumors as large as 2.2cm in my lymph nodes in just four months, is known for a not-insignificant rate of recurrence. Statistically, because I also had cancer cells appear outside the capsule of a lymph node (i.e. extracapsular extension), that also increases the likelihood that I will be revisited by melanoma at some point in the future.

A new friend, who was diagnosed with melanoma about five years ago, but has recently had a relapse with complications, explained to me that he and his wife found that the best way to cope with the impact of the disease on the mind, soul, and body was to live in the moment, and live one’s life – something which he says is not always easy when you are dealing with your own mortality. My piece on priorities a week ago kind of brushed on this idea, but I’m still coming to grips with the idea that I perhaps should not be making substantial long term (multi-year) commitments, which is causing me to reevaluate whether or not I want to continue pursuing my Master of Fine Arts in Photography degree (which will take another 3-4 years of time, nearly full time), or simply charge forth and spend that time in a more intensely productively fashion.

So, my future is a perpetual work in progress, taken a day or a week at a time.

The Fog of Cancer Therapy

In order to be true to the title of this post, namely the various “Fogs” I am experiencing, I would like to share both updates and current perspectives.

Last week I had my first meeting with the clinical oncologist under whose guidance I will be receiving my post-surgical cancer therapy. As I discussed previously, the purpose of the surgical lymphadenectomy (also referred to as a “complete lymph node dissection”) I had two weeks ago was to try and surgically remove the cancer from my lymphatic system before it could spread further, or more realistically, as much of it as possible. Cancer is insidious because it is a cellular mutation, meaning that if even one cancer cell (which is a very tiny, microscopic entity indeed) is left behind, over time it can multiply and spread. Using a macro-level procedure like surgery, while potentially good at removing larger aggregations of cancer cells (usually in the form of tumors), is not great at the cellular level for the simple reason that a surgeon can’t see and distinguish such cells.

That’s where adjuvant therapy comes into play. After surgery is over, additional steps are taking to try and destroy any vestiges of cancer that may still be present. There are two type of post-surgical treatment to be considered – localized and systemic.

In the case of my melanoma, the clinical oncologist suggested that both localized and systemic treatment be applied. The localized treatment would be via radiation, specifically in the area where my lymphadenectomy took place, namely my right groin region. The systemic treatment involves drugs which would be applied regularly to fight any cancer cells that might be left anywhere in my body – in the whole system (hence “systemic”).

The clinical oncologist discussed a number of options with me, including the stock treatment for stage III melanoma patients, namely Interferon-α, a new form of Interferon-α recently approved by the FDA called Sylatron, a late stage drug also recently FDA approved called Yervoy (ipilimumab), and some other experimental options via clinical trials.

Yervoy has the issue that it has not had any studies done yet for Stage III melanoma patients – only late state, Stage IV (for which it was successful as these things go). That meant that, considering the roughly $130,000 price tag for a four-course treatment of Yervoy, insurance would not cover the cost, nor was there necessarily any reason to believe it would even have any effect on Stage III melanoma – it might, but it also might not. The doctor mentioned that there was a clinical trial under way now for Yervoy in Stage III melanoma patients, but that it was a placebo-based trial (meaning that some participants would receive Yervoy, and the others placebos), and the results wouldn’t be known for years (since in Stage III there are no tumors to measure to determine effectiveness – it would be solely based on relapse timelines). Furthermore, Yervoy has potentially serious side effects, including liver disease and even (in very rare cases), death.

My wife Linda and I had discussed the possibility of clinical trials previously – which are basically where someone volunteers to be a subject in an experiment in the hopes the experiment is successful in producing a positive result, as compared to some sort of baseline. That baseline can either be a group of patients in the trial using an established treatment, or alternately, being given a placebo but being told it is the experimental drug. I have a tough enough time leaving things to chance, so the idea of being part of a clinical trial where there was a chance I would get a placebo and no treatment just was not for me (never mind that Linda would have vetoed any such participation as well because of the uncertainty).

Seeing as the Yervoy and other clinical trials currently available were placebo referenced, that ruled those out as options.

I had already known from my research that Interferon, which has been a standard Stage III melanoma treatment for over a decade, would be the most likely option for me, even though its side effects, while not generally harmful, are pretty miserable. Interferon works by boosting the immune system, with the hopes the immune system will then be better able to eradicate melanoma cancer cells on its own.

For many Interferon patients, the primary side effects are fatigue and flu-like symptoms – worse during the initial month of daily 90 minute long IV infusions of the drug, and a bit better during the subsequent 11 months of thrice-weekly self-injections. I’ve learned that it’s not uncommon, due to the impact of these symptoms for people to end their treatment early because they just cannot stand the physical burden any longer. Regular Interferon, because it is in effect a naturally produced protein, is rapidly absorbed in the body, with all traces gone shortly after infusion. So the body has this big spike of Interferon at the time of injection or infusion, and then spends time trying to get back into equilibrium until the next application – so large peaks and troughs.

The recent approval and release of Sylatron appears to provide a more manageable solution to Interferon side effects. Sylatron is still the same type of Interferon as the traditional treatment, but encapsulated in such a way that it hangs out in the body for a much longer time. In very simple terms, you could look at it as similar to getting your aspirin or acetaminophen in a time-release form. This means that the extreme peaks and troughs are no longer present, and the body can better adjust to the sustained use of the Interferon. The flu-like symptoms and fatigue are still there, but not as intense in most people.

Also, because of the persistence of the pegylated Interferon, the dosage and application is less intense as well. Sylatron is applied weekly, and during the first two months, a higher dose is used, after which a lower stable dose is switched to. All of these can also be self administered. The trial in Europe in which Sylatron was used was intended to be a five year treatment, but the average time patients continued with the Sylatron injections was around 14-16 months apparently, but with long term relapse rates which appear to be better (lower) that traditional Interferon, with the added benefit that people were not as sick and, in fact, were able to live mostly normal lives during treatment.

The end result of the first consultation with the doctor was to confirm (as I had previously hoped) that my best course of treatment would be to go with Sylatron as my systemic treatment.

Assuming my insurance company doesn’t set up any roadblocks, I should be able to start my adjuvant therapy in early June after my (damn) drain has been removed, and all my healing from surgery looks good. My next appointment is at the end of the month to try and narrow things down further.

The Fog of Radiation

So, with Sylatron as my systemic treatment determined, the next thing to deal with was my radiation therapy. There has been some literature which has suggested that radiation therapy is not particularly effective for melanoma, but on the flip side, it has also not been shown to be ineffective. What I was advised was that in situations where there was a fair chance of residual cancer cells, such as my extracapsular extension and activity, radiation therapy’s benefits outweighed the risks.

When you’re faced with the potential of relapse at some point down the road, you definitely find yourself more inclined to do anything you can which has a decent chance of postponing when that point will be, and thus I found myself quite willing to go ahead with the treatment.

After a consultation on Friday with the radiologist (who specializes in oncological treatment via radiation), I feel pretty good about the process.

First, let me detail the side effects of localized radiation in my right groin region:

  • It will likely cause sterility, preventing me from fathering any more children. Not a worry – I’m quite happy with the two I have fathered naturally (Krystyana and Sebastian), and my two “adopted” children, Aisha and Chip.
  • During treatment it will cause a light burn and sensitivity on the skin’s surface in the irradiated region. This can be treated with creams.
  • I may permanently lose some pubic hair. May look strange, but other than nurses, doctors, and my wife, and myself, no one is likely to see that, and if they do, it would create an interesting point of discussion.
  • I may end up with darker skin in the same area as treatment. Hmm. Let me think – skin discoloration or leaving cancer cells behind in my body to grow and wreak more havoc? Yeah. I’ll go with skin discoloration.
  • May increase incidence of lymphedema – swelling in my leg due to excess accrual of lymphatic liquids. This can be a real hassle, but the doctor pointed out that there are trained massage therapists who specialized in lymphedema therapy, and the use of compression stockings (I’m wearing one now) can mitigate the problem somewhat. I can certainly work with regular massages (although Linda had to ruin the warm and fuzziness of massages by pointing out that they could be painful, like a deep tissue massage can be).
  • Could undue any healing that is still going on. This is a real potential problem, but with a practical solution, namely not starting my radiation therapy until later in the summer.

Ultimately, the decision that both doctors seemed to agree on (with my concurrence) was to have me start on the Sylatron treatment for the initial two months of high dose injections, then get baseline and diagnostic scans performed, dry out from Sylatron for a couple of weeks, and then start my radiation therapy. The therapy will involve 4-6 weeks of daily (weekday) 20 minute radiation treatments at Mass General Hospital, meaning I would be tied to being in Boston during that time – no travel possible so that I wouldn’t miss any treatments.

During the initial set up in preparation for my treatments, the radiology department would create a special mold for me to lie on for best exposure to the radiation source and then create a 3-D mapping of the region to be irradiated. And I get some tattoos on my body as an added bonus. The tattoos will be used as orientation and reference points for the radiation treatment to ensure that radiation positioning is exact.

The radiation treatment would be performed via Intensity-Modulated Radiation Therapy (IMRT), which is a very modern computer-controlled radiation delivery system which can control the intensity and angle of the radiation in a way to ensure the target area is getting all that it is supposed to while minimizing the amount of radiation in surrounding tissues and organs. I was also amazed to learn that the IMRT mapping involves Voxels – volumetric pixels (something some of my fellow graphics geeks may be familiar with), as a way to represent the radiation values and accumulation in a three dimensional space (a little more on this can be found here). Very cool technology.

The Fog of Frustration and Pain Medication

So now, here I sit, under a fog of frustration and pain medicine as I wait for my body to heal. I’ve figured out that I’ve been something of an invalid in terms of mobility for most of the last seven weeks, and I am sick and tired of it.

I’m used to doing things for myself, and it’s difficult for me to ask others to do otherwise simple things for me because I can’t without hurting myself in the process. Stupid things, like putting on socks, for example.

I also hate not being able to go out without causing myself grief. I had to miss a recently departed friend’s Celebration of Life yesterday, and would have loved to have gone out for dim sum in Boston’s Chinatown this morning. But no go with my current infirmity. I had hopes to get to New York City next weekend to see a friend perform at Carnegie Hall, but I’m guessing that’s not going to happen for me either. Very frustrating! It’s like being in a virtual jail – no tangible bars, but restrictive nonetheless.

The healing of my surgical area and graft site are progressing well enough, but I have a lot of pain and discomfort from swelling and from the area where the drain tube exits my body, and as a result have been on doctor-prescribed rest and pain medication. Add to that that I have to sleep on my back (because of the drain) on a bed that feels too soft, and the result is back pain (goes away when I get up) and not more than about six hours of fitful sleep during the night. I may well start having to nap during the day to catch up, a practice I never really adopted. Now may be the time.

The other frustration is that until my drain is removed, I cannot start my Sylatron treatment, and my drain won’t get removed until the amount coming out is less than 30cc per day (I’m at around 200cc right now, down from close to 500cc a week ago, so some progress is being made). And until I start my Sylatron treatment, I won’t have a clear idea of when my radiation treatments might start (although the best guess is mid-August or so).

Fortunately, while not being mobile, I am able to sit in my comfy office chair for decent periods of time, and work on my computer and some consulting client commitments as well.

And I can slowly shuffle around my kitchen for short periods of time, which resulted in a suitable substitute for my dim sum cravings this morning, crispy pork belly with compote of cranberries and cherries, depicted below:

Crispy pork belly with a cherry and cranberry compote

Crispy pork belly with a cherry and cranberry compote

The one thing, however, above all others that helps me overcome my frustration with being infirm is the support of my family, especially Linda, without whom I would not be able to manage at all, and without whom I would be an absolutely nut job now (or, as my kids might suggest, more of a nut job).

The Fog of Future Treatments

Okay, so may this isn’t a fog, really, but one of the things that has become known about cancers is that they occur because of gene mutations in the chromosomes of damaged cells. The most successful cancer treatments so far, across all cancers, have been ones that target specific mutations that exist in the cancer cells but no other normal cells in the body.

In melanoma treatment, there’s been a pretty amazing amount of work in such mutation specific research in just the least half-decade or so, the result being that there are a number of new treatments under development to address the various mutations (a great, but highly technical paper on this subject by several authors, including my own oncologist, can be found here).

What this means is that if the genetic mutation of the cancer is known, and that mutation is one for which a treatment is being developed (and tested), the greater the likelihood of effective treatment. And such targeted treatments are also potentially likely to have fewer side effects because they don’t have a systemic impact on anything other than affected cells.

In my case, just over a week ago, I had requested that cancer cells from my recent lymphadenectomy be genetically typed by the hospital’s lab. That process will take up to a month. The results won’t make a difference in my current treatment plan as the only clinical trials being done on mutation-specific drugs are only for late stage melanoma patients.

However, the really good thing about getting my cancer classified now is that if I do have a relapse some years down the road, it will vastly speed the decision on how to treat the relapse. With the speed and breadth of melanoma research at present, the likelihood is very high that there will be a number of targeted treatments available – even three or four years from now – that would help me fight a relapse, should that occur (although the hope is that won’t be the case).

In Conclusion: The Fog of Boston

Keeping with my fog theme, I would like to close by saying that the fog we have witnessed from our 37th floor apartment (36th actually, as there is no numbered 13th floor in the building) here in Boston has been spectacular this last week, with visibility so low at times that we could not see the street below us or the lights of the nearby Zakim bridge outside our windows. Back on Bonaire, the weather is never really cool enough to create fog, so this has been a remarkable climate contrast for us.

Not sure when my next post will be, but I’m guessing it will be after my doctors appointments on May 31st with an update on what’s going on with healing, drains, and treatment. Until then, please hang in there – that’s what I’ll be doing too.

 

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This entry was posted on Sunday, May 22nd, 2011 at 13:18 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

15 Responses

May 22nd, 2011 at 16:41
Ann Phelan Says:

Be well Jake..love your mindfullness..appreciate each day that lovely fog rolls in..nature, beauty..peace ..

May 22nd, 2011 at 17:08
George & Laura Says:

For someone who’s suspects himself to be in a drug-induced ga-ga state you did a superb job on this installment of Jake’s Take. It answered several things about cancer I had wondered about. You certainly appear A-OK in a mentally and physically stressful situation.
Have you explored “alternative medicine” for management of your pain/discomfort/compromised immune system? Some people experience relief from acupuncture, Healing Touch,Yoga,etc. They are not supposed to interfere with conventional treatment.
I hope the on-line Reporter is able to keep you up-to-date on Bonaire. The new one goes up tomorrow.
Love to you and the family

May 23rd, 2011 at 01:03
Dara Says:

…one of many holding up a torch of hope as a beacon to help you navigate through the fog.

May 23rd, 2011 at 02:52
Cynde Says:

Jake,

It was SOOOOOO good to see you today! I truly do love you all so much, and I wish it could have been for longer. You put on a good front (or that percocet is just REALLY good) in regard to not being in pain. Other than those staples, and the drain tube, and the stocking, you looked just like yourself ;-)

Love to you, Linda and the kids…..

[NOTE: Subliminal words…coooooffffeeeee]

SMOOOOOCH and a HUGGG!

May 23rd, 2011 at 09:07
Susan Feldman Says:

Jake, maybe a sleep number bed would be good? We have one and though I’m not as enthused as Geoffrey about it, it is nice to be able to set the firmness, and adjust to what works for you on any given day.

Despite your professed fogginess, the detail of your research and your writing clarity is better than most of us can hope for on our best days. :) They say it’s best to be an informed patient – may we all be as good at it as you are. My thoughts are with you all.

May 23rd, 2011 at 12:50
Liz Says:

My dear friend and his wonderful family,

I understand your fog. If it helps at ALL, I can tell you that I have had to experience much if not all of what you have regarding treatment options. The only difference is my surgical options, which are a few, will be decided AFTER all my chemo and radiation is done.

Ok, radiation first. I was told about all that I could expect, and they were all the same. What I have experienced now going into my 4th week is slight skin discoloration, I also have some pinpoint ink tattoos for accuracy in placement of beams. Pubic hair – gone. Hard to tell about the fatigue, because receiving chemo at same time. Fortunately, no real “skin burn” or such. Maybe a little irritation, but I’m thinking as we have lived in Bonaire the last 8 years, tropical skin sun exposure helped, or maybe I just got lucky. The small irritation I did have the creams helped a lot, clearing up everything in a week. Oh, one symptom I was told about later, and didn’t experience until this past week was bladder urgency and a bit of spasm. This is because radiation is in the pelvic region. It is not touching my bladder at all. Just something you might want to ask about.

Chemo. I will be honest, the worst, though they will be making adjustments for my second round, which is in 2-3 more weeks. My side effects took place starting 2 weeks after starting chemo. ALSO REALIZE listen to every thing your body tells you. Don’t hesitate to call your MDs, I ended up near death last week with Neutropenic Sepsis with a 100.5 temp. I had to receive 2 pints packed RBCs and a pint of platelets, along with meds to build up my immune system. I only had .15% of my immune cells still working, which is bad, but I made it through and feel 100% better. Now the doctors are saying to me they don’t want that to happen again, so they will adjust chemo. I’m happy.

Jake, like you I take one day at a time, but I have chosen to “live” with cancer. I know that in the long run, this is what will probably get me, but I would rather LIVE for now. Prioritization is the key, I made a list of the top 10 and those are what I concentrate on for now.

Keep strong my friend, I know for a fact it is not easy, but look at the faces of those most closest to you, and know it it worth it.

Hugs.

Liz

May 23rd, 2011 at 20:12
Jake Richter Says:

My brain fog has been lifting. I decided to switch to a combination acetaminophen and ibuprofen this morning and it appears to be working.

Liz – I am in total admiration of you. What you are going through physically right now is so many orders of magnitude more dramatic and intense than what I am dealing with at the present, yet you are there for me, sharing your experiences and providing incredible personal and useful insights and advice. You have my undying gratitude and support.

With much love, and many hugs,

Jake

May 24th, 2011 at 06:09
Jarmila Richter Says:

Jake,

I am glad that you are trying to get the all the information and insight into your situation. It’s not always what you would really hope for, but still much better than live in doubts. And above the facts, the hope for your full recovery prevails for all of us.
I admire what your friends are writing. They are caring and brave. My hat down to Liz.

Holding your hand,
love, mom.

May 24th, 2011 at 06:38
Howard Sobel Says:

Great detailed article Jake. Should help others with making rational thoughts when chaos seems everywhere in your life. Keep blogging and cookin. Great combo. I am not surprised you are doing this blog. When we needed articles for the WIndows Journal we turned to the guru on Windows graphics drivers and you came through for the Dev community then with no compensation freely sharing your passion for programming, ideas and helping others.

May 24th, 2011 at 11:00
Willie Wonka Says:

Thanks for sharing this with all of us, Jake. I know you have the Hope and the Spirit needed to beat this disease. One the very best sources for Cancer education and info is http://www.CancerQuest.Org It was just selected to be the primary source for cancer info to the National Museum of Health being built in Atlanta. I hope it can help you find all the answers to your questions about Cancer. If you do not see the answer, write the director, Gregg Orloff, and ask him directly. We’re sending you Love,Light and healing energy to help you get through this. You have the right attitude to win this fight !

May 24th, 2011 at 11:56
Margreth Says:

Just a big hug and lots of love

May 25th, 2011 at 11:36
Abby Says:

Loving the blog, Jake. To Linda regarding her editing: well done :-)

May 25th, 2011 at 17:33
Margarite Says:

Napping is nothing but good. Highly recommended by Dr. Margarite!
Hugs!

May 28th, 2011 at 14:43
Jean Says:

Hi Jake,
I just heard about your diagnosis… and I applaud your tenacity and determination to check out all of the possible treatments and their likely effects. And sharing that insight. Balancing a positive with a realistic attitude can be a challenge, but it helped me to have a “take – charge” attitude.

As a Stage II Melanoma survivor of 14 years (back then I was given 50/50 chance of 1 year), I can echo the “deal with it one day at a time, one hour at a time, one minute at a time” advice. Continue to lean on your friends and family, and spend time doing what you feel is important and let the other stuff “slide”… knowing it’s OK.

All the best, Jean

August 12th, 2011 at 22:47
Yoga Says:

Yoga…

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