More No News… March 28th, 2012
I offered to write the blog entry as Jake is feeling quite fatigued from his ipi infusion yesterday. We both thought getting a quick note out now would relieve any anxiety out there and take the stress off Jake to get out another blog entry.
On Monday, Jake had a follow-up appointment with Dr. Kim at Mass. Eye and Ear to take another look at the spot on the retina of his right eye. We are happy to report that absolutely no changes per the doctor and therefore she confirms her previous suspicion that it is just a nevi and not related in any way to the melanoma. Yeah! Next appointment in six months.
On Tuesday, we had a very early appointment, 8:30am, with Dr. Sullivan as the usual prelude to the ipi infusion. We had a bit of difficulty getting Jake’s IV put in at the same time as his bloodwork was drawn but it all worked out in the end after a few extra trips in the elevator to get the right person to do it. Dr. Sullivan thought Jake’s palpable tumor seemed a bit spongy which might or might not be a good sign. We can only wait and see how that goes.
Dr. Sullivan also reviewed the results of the brain MRI from last week. He indicated that the inflammation was reduced since the last scan (just prior to his hospital stay) with most mets appearing to be unchanged (we were not expecting any changes). He was going to check with Jake’s other doctors but at this point, he thinks the Steriod should continue at its current level. Jake appears to be making progress with his eating and recovery which he felt was a positive.
Jake is now scheduled for a neck to knee PET/CT scan on April 18th, followed by a meeting with Dr. Flaherty on April 23rd. This scan is the typical follow up for the 4 dose ipi treatment. Dr. Sullivan indicated that we may see no changes on the scans (or even a bit worse) compared to before treatment as it may be too early for results. If this is the case, we will need to wait another 6 weeks (with no more infusions or specific treatments) for another follow-up scan which puts us into the beginning of June.
As I mentioned at the start, Jake is feeling quite tired but suffering no major side effects from the ipi so we are glad about that. We are giving him lots of time to rest as well as trying to keep his food intake up. Of course, it doesn’t help that we are having typical March weather in Boston this week, so I drove Jake to his appointments rather than walking in the cold, windy air.
So once again, no news is good news. Plans continue for our move to Chester, NH in mid-April.
Happy Anniversary Melanoma! (not!) March 22nd, 2012
Today marks the one-year anniversary of the diagnosis of my malignant melanoma cancer. I was standing in the kitchen of my mother-law’s house in NH, answering the telephone, surprised the call was actually for me. It was the dermatologist’s office advising me that my mole’s biopsy results were not very good, and that I had a deadly form of cancer. That news in turn led to the contents of this blog, and my current health issues. Stubbornness on my part also contributed, as did unexpectedly difficult to cure aggressive brain mets.
I have been doing quite a bit of Physical Therapy to help rebuild my strength and weight (I am down to 170 pounds – 55 pounds below normal).
Tomorrow I have a brain MRI scheduled at MGH Chelsea, to see if I can cut back on my steroid intake. I then head over with Krystyana to the Boston Museum of Science to test out my new Lytro light-field camera at the live gecko exhibit.
My MRI results will be reviewed with me on Tuesday, after which I spend the morning getting my last of four ipilimumbab infusions – so far, no negative or positive results from the ipi (a.k.a. Yervoy) treatments.
We are still working on move coordination for the weekend of April 13th and hope to contact our growing list of volunteers this weekend
with more details.
We also learned today that my melanoma buddy Bill H. just had his melanona upgraded from Stage IIIA to a Stage IIIC/IV today meaning it had metastasized. Our love and support to you and Jodi, Bill. Melanoma is a real bitch.
Still Moving… March 9th, 2012
It was a beautiful day in Boston yesterday, not only because of the summer temperatures, but also because I was emancipated for the day. I got to spend the day getting Spa treatments to help heal my bruised and battered body. The reflexology I had was divine and I’m looking forward to when I can schedule myself for another similar treatment. Sadly, the air temperatures are now dropping again to wintertime norms, but are due to pick up and get warmer next week.
Our moving plans are still on – namely to finish packing the apartment on Friday, April 13, and then use a large U-Haul freight truck rented by Linda’s cousin Jeff in New Hampshire to cart all of our boxes, possessions and furniture up to Chester, New Hampshire. We have the freight elevator in our apartment building reserved from 1 PM to 5 PM on the 14th. Moving stuff around down in the garage where the freight elevator touches down is not the simplest of things, so we would expect to actually start physically moving things around by about noon time. We don’t believe we need to any extra vehicles to help us transport anything as the large U-Haul truck should be sufficient for all of our goods here in Boston, but we will more than likely need help loading the truck in Boston and unloading in Chester New Hampshire. We will also have a friend visiting from Holland joining us who will not have a vehicle of his own. And it’s likely that I will personally be next to useless in the move because my ability to lift things is severely restricted at this time. If you think you might be able to help us with the packing (dismantling Ikea Swedish torture ware) on Friday night and the actual move on Saturday, please send us an e-mail with your contact information. We will know how many people we have signed up on Saturday for the donut run.
On the personal health front, I had my third infusion of ipi two days ago and based on how slowly ipi works, there is no way to tell if the drug is having an impact in my system yet. This is why I have cautioned all friends and family to be aware that no news is good news. Which is also why, this is the first post in the last several weeks that I’ve made. Furthermore I don’t have the ability to be easily type without lots of spelling mistakes so I use dictation software to assist me with the process which makes responding to people’s e-mail very, very challenging and tedious. For example, it took me nearly 4 weeks to clear out my backlog of five weeks of e-mail, and I hesitate to jinx myself by saying that I am now caught up, after my hospital stay four weeks ago. If there were bad news of any sort then Linda could be counted upon to make a posting on the blog and if I was well enough I would do it myself, And failing that Krystyana could make the post it as well.
At the ipi appointment, Dr. Flaherty indicated that he would be like to have another brain MRI done to see if the swelling has gone down enough to reduce the steroid dosage. The MRI should take place in the next week or two but we don’t have a schedule yet. The doctor also noted my newly white eyebrows. He said that was a good sign that the ipi was working because it is affecting pigmentation which is also melanocytes.
I have been getting physical therapy from a visiting nurse several times per week to help strengthen my muscles which are in sore need of it. That has involved graduating from a walker to a cane within the apartment. Linda and Krystyana take turns leading me through my exercises a couple times per day.
We Now Have a Vehicle And a Moving Date January 30th, 2012
We are now proud owners of a new vehicle a 2008 Jeep Liberty – a model of Jeep Cherokee – which we purchased last Friday thanks to the help of our friend Denise Kacavas help companies cut of us and her brother-in-law Jim who runs a dealership – Allen Mello Dodge Jeep – in Nashua, New Hampshire Jim sent a driver down to pick us up in Boston and Marvin – a sales guy at the dealership helped us figure out what vehicle we wanted as we wanted to also get get four-wheel drive and lots of legroom in the back seats for our tall teens.
After we found the vehicle we wanted Jim even bought us lunch. Thank you Denise, Jim and Marvin and everyone else who offered help and advice with our car purchase.
A number of you had offered to help us move from Boston to Chester once we knew the appropriate dates, well, we now have those dates our plan is to now disassemble all of our IKEA furniture on Friday, April 13th, and move all of our stuff out between 1 and 5 PM on Saturday, April 14th we already have the freight elevator in our apartment building reserved for the move-out and are hoping to convince Linda’s father to drive a U-Haul truck to and from Chester (we plan on having a convoy up to Chester (with boxes in all the extra vehicles and furniture parts in the U-Haul truck) For those of you who have already volunteered to assist us please drop us a note if you can join us on either of these dates. Thanks!
Doug & Erin – We will glad accept those empty boxes you offered us yesterday.
In other updates – I am not experiencing any treatment side effects from the ipilimumab (and if they appear it won’t be for another 10 days, but I am still feeling extreme fatigue, a poor appetite and itchy skin from my radiation treatments and very itchy skin from the same. One other life change I am pursuing is the resumption of my course work for my MFA in Photography with the Academy of Art University in San Francisco – I have committed to taking two courses this semester – classes started today.
First infusion of ipilimumab completed! January 25th, 2012
After a brief meeting with my oncologist this afternoon to go over what to look out for with respect to the side effects of ipilimumab – skin rashes and gastric issues – so we could let the hospital know that it’s happening.
The doctor said that the soonest I might experience the rash (the most likely side-effect) would be about two weeks from now.
My newly found cousin Carolynne who is also on ipi as part of a clinical trial says that after her initial four doses she had no side effects. I got to see her today because she had an appointment with my oncologist directly following my appointment, and she and her husband Mark came to visit us in the waiting room of the infusion center
The infusion of the ipi took place in Mass General’s Yawkey Outpatient Center on the 8th floor (one floor below where my oncologist holds his consultations. The infusion center is also where chemotherapy patients get their chemo treatments – each infusion area includes a TV and several chairs for guests, as well a chair designed much like a La-Z-Boy but not nearly as comfortable (for the patient).
This combination can create raucous neighbors as we discovered today. The guy visiting the patient in the infusion area to my right spoke loudly about everything, and seemed to be a know-it-all about every subject. Noise canceling headphones along with a music source are coming with us for the next infusion in three weeks to help drown out adjacent conversations and televisions.
We learned that the ipi infusion process takes over two hours as the nurses first have the hospital pharmacy prepare the ipilimumab infusion (267 ml for me based on height 6’2″ and weight (195 pounds clothed) – which takes about 45 minutes. The infusion is administered via IV (intravenously) over a 90 minute period along with time spent in the waiting room we spent about two and a half hours waiting to complete the first infusion of ipi.
The next excitement comes about on Friday afternoon when we go shopping for a used vehicle to use while we are living in the house in Chester. If anyone has good suggestions on how to not get ripped off by used car salesmen, let us know.
The next medical treatment takes place in the form of a Brain MRI on February 9th – a week before the second infusion of ipi and I may have another set of body scans a few weeks later (between the second and third ipi infusions) which may impact a booked trip home to Bonaire in the middle of March – the results of the scans would be more important than going back to Bonaire for a couple of weeks, I figure.
Treatment Start in Sight January 22nd, 2012
I got word last Wednesday morning from my most excellent oncology nurse Ellen that all hurdles with my insurance company had been surmounted. And after going to the hospital to get blood drawn for reference values, I learned that I would be meeting with my oncologist next Wednesday for a final consult to precede my first injection of ipilimumab, also set for next Wednesday afternoon.
One thing I failed to mention in last week’s downer of a blog post was that one purpose of ipi is to set the brakes free on one’s white blood cells to allow them to better fight infection. Considering many of my existing white blood cells are TIL cells design to target my tumors, the ipilimumab should have a positive impact on slowing the growth of my melanoma. Not looking forward to the itchy skin side effect as I already have very itchy skin from both the radiation treatments I have gone through. My next ipi injection will be three weeks from Wednesday, and I have a Brain MRI scheduled on February 9th to see if my brain tumors are shrinking from the ipi. If shrinkage occurs, I will get to avoid brain surgery to remove a tumor in my right temple (which has been leading to small seizures on the left side of my body) and another tumor located on my cerebellum back of the head at the top of the spinal column. If there is tumor shrinkage due to the ipi – it should manifest itself after the first or second injection I won’t know until after my consult on Wednesday how often I will need to get CT or PET scans. My newly found distant cousin Carolynne has suggested that since we share similar genetics that ipi should work well for me, because it has done so for her. And since it boosts the effectiveness of TIL cells, that’s another variable in the tumor-fighting equation.
One practical impact this latest development has on future plans is that the 12 weeks of treatment will prevent us from moving back to Bonaire in April as we had hoped we coud do as of a few weeks ago. Instead, to conserve resources we will be moving into a house owned by Linda’s family in Chester, NH, not far from where we used to live in Derry, NH before moving to Bonaire in 1997.
Melanoma Sucks January 12th, 2012
This blot post will be more succinct that my prior posts.
I had a PET scan and a brain MRI yesterday, and a meeting with my oncologist today. I learned that my scans showed that the tumors on my liver and lungs and right adrenal gland have resumed growth (in contrast to what my scans in early November showed. as have my brain tumors – post radiation my further treatment will involve a drug approved last March by the FDA, known as Yervoy (ipililimumab) which is administered four times over a twelve week period at a cost of $132,000 (paid by insurance hopefully). So instead of moving back to Bonaire in April I would downsize apartments in Boston to be close to treatment at Mass General Hospital.
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.
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:
- T-Cell (Wikipedia)
- “Imagining a Cure” (The Scientist)
- “Adoptive immunotherapy for metastatic melanoma?”
- “Adoptive T-Cell and Dendritic-Cell (DC) Transfer”
- “Novel Immune System-Based Gene Therapy Induces Strong Responses in Metastatic Melanoma, Sarcoma” (Science Daily)
- “What You Need to Know About Interleukin-2 for Metastatic Melanoma” (About.com)
- Interleukin-2 (Wikipedia)
- Yervoy (ipilimumab) Official Site
- “FDA Approves New Melanoma Treatment Yervoy” (WebMD)
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:
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.