Archive: March, 2013
It is my honor as one of TJ’s treating physicians at Moffitt Cancer Center, to have been asked by him to contribute to his “Patient #1” blog. I have been at Moffitt Cancer Center since 2006, first as a surgical oncology fellow in training and now as a faculty member specializing in surgery and immunology. During my training, I had witnessed, first-hand, the limitations of traditional chemotherapy as a treatment for cancer. While there is no question that chemotherapy has its place as a viable treatment option, the short list of problems with chemotherapy is:
- Chemotherapy is essentially a type of poison that indiscriminately kills dividing cells whether they are normal or abnormal, and this leads to side effects can be extremely difficult to handle,
- the treatment is generally only effective during the time the chemotherapy stays in the body, and thus chemotherapy typically requires repeated treatments to maintain a response, and
- even if cancer initially responds, the cancer cells all too often develop resistance to chemotherapy that was previously effective.
Despite these problems, chemotherapy can definitely lead to long-term benefit or even cures for some types of cancer, but unfortunately the cure rates for metastatic melanoma (ie melanoma that has spread from the spot of origin) are quite low. This has led to the development of alternatives to chemotherapy. One promising treatment is immunotherapy; a treatment that harnesses the body’s immune cells to attack the cancer as it would bacteria and viruses.
One of the ‘holy grails’ of cancer immunotherapy is to develop an anti-cancer vaccine, just as we have vaccines for diseases such as measles, mumps and rubella. Vaccines have a great track record against infectious diseases, as they have been used to eradicate smallpox off the face of the Earth, and a similar effort is underway for polio. It is much more difficult to use vaccines to fight off cancer, because unlike bacteria and viruses, cancer cells originally developed from our normal cells and still ‘look’ a lot like normal tissue to our immune system. Thus, cancer cells are not typically treated like an ‘invader’ by our immune system, even after vaccination. While cancer vaccines can be used to boost anti-tumor immune cells that can be detected in the circulation, they are either not numerous or powerful enough to cure most patients with melanoma. Ironically, it seems that cancer vaccines have the opposite problem as chemotherapy; while chemotherapy kills too much (ie both normal and abnormal cells), most of the cancer vaccines that have been used to date unfortunately do not kill enough.
When I started writing about this battle with melanoma, it was to update concerned family and friends. We had a mailing list and a Facebook page, and after my first surgery, I took over the main task of letting everyone know how I was doing and what was next. Some posts made people laugh, others were a little more emotional, but most of them seemed to resonate with that small group. Soon the circle started adding layers of friends, and the number of people being reached grew.
I realized what I wrote was touching people; quite a few emails or messages began with a variation of “Hi T.J., you don’t know me but…” My brother Jason got me in touch with the right people at Philly.com and they agreed to share this story online. My first reaction was “Damn, that’s pretty cool.” The second was more along the lines of “Um, what did I get myself into – I need to come up with something to write every week, for a much bigger audience that doesn’t have some kind of vested interest in my recovery. All while undergoing treatments, and living in a rented house in Indian Rocks Beach, FL. Am I crazy??”
After a couple posts, though, I got the feel of how to connect with people who don’t know me personally, but know someone who has gone through a similar medical challenge. I also realized I had a forum to do something I told my Mom during my first hospital stay, back in August – when this was all over, I wanted to help others. Right now, the only things I can really do are lead by example, and continue to remain upbeat and positive.
I just finished reading a “blogger’s guide” on the Internet by Jeff Goins on what makes a great blog post, and am about to break just about every one of his rules. Sometimes, when real life meets cancer, the results don’t fit into a tidy 500-word post with a defined beginning, middle, and end, like your high school English outline. Sometimes, life gives you the full range of emotions in a small window. Sometimes, you just get the good, the bad, and the ugly all at the same time.
First, the bad – I hate hearing good news first and then being totally deflated by the other foot dropping. It is part of the reason I am glad Dr. Weber is very direct and blunt in his assessments of my progress - someone told us once that he was “a brilliant doctor, but his ‘bedside manner’ was not very empathetic.” That was just fine with me – give me the worst of it to process, so that whatever good news there may be can be hopeful and not lost in the shadows of the bad stuff. That is how I converse with most people when talking about my current condition; ergo, that is how I write about it, too.
This weekend’s “bad” was sandwiched around a whole bunch of “good” things, Josie’s birthday party being the featured activity. The Sunday lunchtime party was a huge success by all accounts; she had a blast, we had 80-some people in the park across the street from our house, and things just sort of fell into place, even with a couple of logistical issues during setup. Sort of like a wedding, there are little things you plan meticulously for that sometimes don’t go as planned, but are almost never noticed by guests. So, what was so “bad” about a St. Patrick’s Day party for a three year old?
The last few blog posts weren’t exactly full of positive energy. When I signed up to do this blog – and even before, when I was posting to Facebook – I wanted to keep a few things consistent. The blog should be relevant to what is going on in my treatment. The blog should keep a conversational tone; the last thing anyone wants to read is a monologue on what my life is, so I have tried to keep this how I would talk and describe things to a friend on the phone or hanging out on our sofa. And the blog should accurately reflect how I feel – the ups, the downs, the doubts and uncertainties, all of it.
The last week or two can generally be classified as “down”; aside from the disappointing TIL results, we just learned about one family friend’s battle with cancer that was lost, and another who is clinging to the hope of a miracle while his melanoma progressed severely enough that hospice is now involved. Hearing of others’ setbacks has an immediate negative reaction in most cases, especially ones that hit so close to home. The second feeling, though, is the one that usually overrides that negativity – more resolve. Dammit, there are enough people struggling and losing this battle; I NEED to be the one who shows that cancer isn’t a death sentence.
Speaking of the battles of “strangers” - it’s funny how someone you never met can influence your life and how you handle things. I have heard sentiments like that from some of you, and hope these posts have touched at least a handful of readers in some small way. Not coincidentally, someone in a similar situation as mine had that effect on my battle and these entries.
OK, so Plan A didn’t have the super, dramatic, life-saving cure we all hoped it would. Disappointing? Of course. End of the world? Definitely not. So after a long weekend of thinking, where does that leave me?
First, it leaves us thinking about Plan B. The most likely path we will go down now is another clinical trial that involves the PD-1 Antibody. Once we confirm, and I understand a little better what I am getting into, I will give more details on both the trial and PD-1. The suggested trial divides up subjects into two-thirds getting PD-1 antibodies, and one-third getting traditional chemotherapy.
This isn’t my first choice for treatment, but then again, my first choice didn’t work so well. I continue to have reservations about chemotherapy. The more I read and understand, the worse it sounds as anyone’s treatment, much less my next best option. We summarily dismissed the chemotherapy route after the first oncologist gave it to us in September. The thinking then – and now – is there is something better. The more I know, the stronger I feel that chemotherapy is NOT the way to go for anyone who wants a sustainable response. More to come on Plan B and chemo in future posts as we decide our course of action.
Lest we thought just waiting for scans were the only March activity, melanoma or something related to this treatment decided to add another mystery obstacle – on Josie’s third birthday, of course. Back in December at the end of our quick Disney trip, I had some funky white-ish growth on my right tonsil. It was pretty nasty looking; I’ll save you details, but a very foreign-looking, superball-sized mass appeared, nearly overnight, inside the back of my mouth. After treating with Nystatin for a day, the thing fell off – unfortunately, right down my throat, so no biopsy was possible. Several doctors and dental professionals concluded it was likely thrush, as I was on antibiotics at the time and neglected my probiotic pills and yogurt just before and during Disney.
Well, guess what – it wasn’t thrush. It came back, starting the weekend before these final scans (10 days ago) and growing bigger. By the time we left Tampa, it was necessary for the mass, and the entire tonsil, to be removed. Back in Broward County on Wednesday, I had my right tonsil removed, along with our unidentified growth.
A full biopsy will be done on the mass, and a piece was saved should Moffitt want to do their own research. The two most likely scenarios, now that normal viral and bacterial causes have been ruled out, are: a tumor in my cervical lymph nodes is causing something to get pushed out via the tonsil, or the Yervoy is causing a swelling reaction. I am certainly hoping for the latter, but concerned it is the former, since the first occurrence was six weeks after a Yervoy dose. Actually, I am really hoping guys in dark suites come knocking on my door, whisk me away to some secret government medical facility, and study how alien DNA got into my throat, but short of that, an inflamed tonsil will do. If you don’t hear from me for a week or so though, you know what REALLY happened…
The last post was done quickly and somewhat efficiently to get the news of the scans out before you all headed home for the weekend – I know have a more captive audience when I can steal 10 minutes of your employer’s time than when competing against family time. I left out a lot of details and some things that took some time to digest and process; plus I had to figure out a way to tie in the March 1st part no matter what the outcome was. I wasn’t leaving out that slice of perspective. Below are more thoughts from the weekend, starting before the scans:
After a full afternoon of tests on Thursday, we unwound listening to some island music at a beach bar across from our hotel – they are having a tropical music fest there all weekend. Josie was in heaven, dragging my dad, Jen or I out to the sand dance floor for nearly every song. It was a nice “escape” from everything for a few hours; regardless of how Friday turned out, it was fun (sort of) dancing with an almost-three-year-old to Floridian singer/songwriter Sunny Jim White and Jersey boy John Frinzi. Usually when I see these guys perform it is one big party. While that was true for most of the crowd last night, the Sharpe family got a bunch of nice, low-key moments together – thanks Jim and John.
No matter how you slice it, the results felt disappointing – I’m sure that was evident in the tone of the post, as quite a few people have emailed encouragement. For one of the few times in the last six months, it got me down. I was so sure that I was going to ace this and we would see stabilization or tumor shrinkage across the board. So despite the scans being preliminary, and there being several good signs mixed in there, nothing about Friday felt like a success (except for getting the port out). This weekend was the first time I felt vulnerable. This weekend was the first time doubt entered my mind and stayed longer than I would let it.
OK the news everyone is waiting for – I got the port out today. Whew.
Oh yea, that other thing. Results were “confusing” to one of the world’s leading melanoma specialists. I am glad I still have the ability to baffle even the brightest among us. Regardless, we didn’t get positive news. Bad news first – three of the five tumors grew in size; there have been several new tumors identified. The initial radiologists summary was this: “Overall progression of cancer compared to prior examination, though some lesions are stable.”
That leads us to the good news. The biggest of the five tumors shrank minimally, as did one other tumor. The existing tumor growth was much less than if left untreated – none grew more than 10 percent in 2+ months since my last scans. Typically cancer cells double every three months, so the advancement has at least been minimal. The confusing part was kind of good too – while the initial feeling we got was very negative, it was just preliminary findings. And even that was preliminary; the cutaneous department meets once a week to review cases (with a specialized radiologist) so the picture is still cloudy. Cloudy plus negative certainly isn’t the report we were hoping for, but hey, weathermen are off all the time.