Eight is an auspicious number in some cultures. I really wish I could say the same was the case for this thread. What follows is, I dare say, not going to cheer anybody up reading this.
I do ask myself sometimes why I share this story publicly. Many would would keep such things private. “Won’t you lose customers?” Mostly, my intention is to provide a window into what it is like to suffer from cancer, and maybe there is someone out there who either suffers from the same thing or has a close friend or family member with the disease, and anything I can do to further an understanding or make a connection seems worth doing.
I just want to say too that writing about my personal situation here on this blog is for me a good way sometimes of distilling down or obtaining clarity in regards to what I ought to ‘do’ about all this. So, this sharing has within it a certain self-serving aspect as well. Also this blog provides a record of my thoughts and maybe my wife and son will want to read it one day. Just to see what I was thinking at a given juncture.
In the previous post I mentioned that I had received 5 radiation treatments on my right knee and glute. That took place in the second week of December. Those treatments led to a decrease in pain in my knee and glute, but not a complete elimination of that pain. As time went on, I found my knee started to feel worse again. I continued my immunotherapy infusions with Erbitux on a bi-weekly basis as it seemed to be doing its job. Other aspects of my current condition, namely neuropathy in my hands and lower arms, a stiff neck, decreased saliva, occasional trouble swallowing, acne outbreaks, blood in my nose, etc., continued unchanged. In fact, the knee pain was sufficiently bad that it took my mind off of the other unpleasantnesses, so it had a benefit of sorts.
It came time once again to have a PET scan; this time it took place down in Springfield in the middle of this month (January 2019). The scan took place the day before I was to see my oncologist at Cooley-Dickinson Hospital. Apprehensive about whether the scan results would be available just a day after the scan, I queried the nurse who had called to tell me the appointment time, and she assured me it was not going to be any problem.
On the following day I was at Cooley Dickinson and, following the usual blood draw, I made my way to the examination room. The oncologist came into the room and, after the usual exchange of pleasantries, we began talking about my health situation. Now, if you can imagine, I was sitting there, as the Brits like to say, on tenterhooks, nervously waiting to find out the scan results. Then I gathered that my oncologist was unaware that I had even had a scan. The internal data tracking of my appointments and procedures had not apparently been updated to reflect the scan. This was not the first time that this particular hospital has given me a strong impression of being disorganized. And, my oncologist’s clued-out expression was not the first time I got the sense that I was far from being foremost in his thoughts.
After I told the oncologist that I had in fact been scanned the day before, he turned to the computer to look at my file to see what the results of the scan were. Sure enough, the results had not been uploaded yet. My oncologist left the room for a while and had his assistant contact the sub-contractor which does the scans, and when he came back he said he should have the results in the afternoon, and said he would call me later on in the afternoon to let me know. I checked to be sure he had my cell number before exiting his office. It was an important call for me and I didn’t want to miss it for any reason.
I went on to have my usual Erbitux infusion later that morning, and then headed back home, where I retired to the couch with the phone nearby, waiting nervously for the call.
No call came though. That was distressing. One can imagine what may have happened: that either no results came in and he decided not to call, or that results had come in but he had forgotten to check the results, never mind make the call. Neither scenario was comforting, let’s put it that way.
The next day was, however, the oncologist’s day off so he wouldn’t be available to see . He is semi-retired and works two days per week. I called the hospital and managed to reach a nurse in the cancer center, and explained the situation with the scan. I also mentioned that I was quite dismayed, to say the least, that the oncologist had not called me after saying he would. I said it did not meet my expectations as far as a reasonable standard of patient care was concerned and I was quite upset about it. The nurse said she would look into the situation and get back to me.
A few hours later the phone rang. Was it that same nurse or even my oncologist? No. It was a doctor, but one I had never met or had even heard about. She did not have the actual scan to look at, but she did have a fax of the pathology report. She mentioned that she had spoken with my oncologist on the phone a short time earlier.
The PET scan result was not good. Cancer has marched onward into some fresh pastures. In summary:
- cancer was still active in my right knee, now a 2cm tumor instead of 5cm in size.
- cancer was still present in my right glute, and there appeared to be activity on the left side of my pelvis as well
- lymph nodes clustered around the main branch of my right lung showed new cancer activity.
- Spots were also detected in my right fibula and left lower femur
- activity was detected in my upper throat
Obviously, this was devastating news, but at the time I received it I was feeling something else, namely anger towards my oncologist. I hope this doesn’t come across as petty. This was the second time in a row where I received results of a scan or test from someone other than my oncologist. I was confused as to what was going on. Has he given up on me? Does he prefer to avoid passing on bad news to patients? Or did he simply have other things on his mind and had forgotten?
Obviously, everybody has a right to take days off from work, but when it comes to this particular area, cancer medicine, where test results are literally life and death matters for a patient, well, I tend to think the oncologist could maybe pull himself away from whatever relaxing and enjoyable activities they may be engaged with on their off day and make a phone call to their patient. Maybe my expectations are old fashioned or something, I don’t know.
I mentioned to the doctor on the phone that I was quite dismayed that my oncologist had not contacted me directly. The doctor then noted that the scan results had only been available as of that morning (as if that made it okay not to call). My hackles – as such, not particularly impressive these days – now raised, I pointed out to her, “okay look: let’s switch roles for a minute and imagine I am the oncologist and you are the patient waiting nervously on test results. Now, I first tell the patient that I will call them in the afternoon when the test results come in, and then for whatever reason the results do not come in. If it were me, or any other halfway-aware individual, I would then contact the patient and let them know the situation and that another doctor would be contacting them the following day once the results were in hand. That seems rather basic to me.” Her response was of the not altogether unfamiliar ‘clued-out bedside manner’ that some physicians manifest. Her response to that: “well, you have a point there but I’m not the person to bring this up with”. I clenched my jaw at that point.
You would think the person charged with delivering such news to a patient would have a modicum of social skills, maybe manifest a little empathy and understanding, but this was not in evidence with this particular doctor. I’ll make a point of not seeking her out for further conversations anyway. Obviously, it is not the easiest task to tell patients the bad news, but still, not impressed.
After that episode, right away I was just feeling done with my oncologist at Cooley-Dickinson Hospital. The contrast between the way that hospital and some of its staff operate is so far below the standard set by Dana-Farber in Boston it is stark. At Dana Farber, from the parking attendants on up one feels cared-for and important to the people there. Receptionists remember your name. Phone calls are returned, questions get answered. You feel that they are on top of things. It’s really quite amazing, especially in light of the large number of patients they see.
At Cooley-Dickinson, one gets a different sense. Putting my cynical hat on for a moment, the treatment at Cooley-Dickinson telegraphs in various ways the behavior of a large for-profit corporation who markets itself as a caring actor but really what it is all about is the profit equation – and cancer treatment is surely among the most profitable fields of medicine – that patients are maybe just units of transaction, and really nobody gives a fuck about the patient. Yeah, I’m pissed. Okay, cynical hat off now. I get tired just reading that stuff too, so I’ll give it a rest.
Of course there were some good medical professionals there with whom I have had perfectly fine interactions, but I leave CDH with a bad taste in my mouth and feel worse off than I would have been otherwise due to the the way I was treated.
That same day (Friday) I emailed the assistant to my oncologist at Dana Farber, requesting a consultation, noting that I already had an appointment elsewhere at Dana Farber coming up on Tuesday and it would be great if they could make it work for Tuesday. Boom, that consultation was set up for the following Tuesday morning, fitting me in before the meeting I was to have with a clinical researcher to discuss clinical trial options. I then asked for a referral to see an orthopedic oncologist to discuss my knee situation, and voila! I received a call from that department a few hours later to set up a time on Friday.
Tuesday rolled around and my wife and I made our way out to Boston, a 2 hour drive (* when traffic is favorable). I found the meetings with both my oncologist and the clinical researcher quite informative, though not much in the vein of comforting. Apparently they had been e-mailing back and forth quite a bit with one another on the previous Saturday, their day off no less, just discussing my situation. Like I said, Dana Farber totally manifests a culture of caring for the patient.
The upshot of my meetings were as follows:
- current research is suggesting that treating a cancer based upon where it appears initially can lead to treatment regimes that are not an ideal fit for all patients, and I would be a case in point.
- my cancer cells evince a mutation in one of the cells proteins that is less common among head and neck cancer patients and more common (about 40%) among people suffering from breast cancer and also affects those with colon cancer.
- getting another round of 5 radiation zaps on my knee seemed worth doing. This could be done at Cooley-Dickinson (as it involved a different doctor who had done a fine job previously so I felt good about it, and it would spare the upheaval of living in Boston for a week).
- the Erbitux, though it was working in terms of its task (bonding with epithelial cells and blocking intra-cellular signals to divide), was not keeping my cancer at bay. Was it time to reconsider that treatment?
The clinical researcher said the reason that the Erbitux was probably not doing enough to keep my cancer at bay as a result the particular cancer cell mutation I have. It seems that in a normal cell there are a series of proteins, or enzymes, that communicate with one another and relay messages to divide the cell. The Erbitux I take blocks the surface of the cell from getting messages from adjacent cells, however the next protein (enzyme) in the message chain inside the cell, namely Phosphoinositide 3-kinase, termed PI3K in shorthand, has mutated in my cancer cells. PI3K is part of what is termed the PI3K/AKT/mTOR pathway, an intracellular signaling pathway important in regulating the cell cycle. Therefore, it is directly related to cellular quiescence, proliferation, cancer, and longevity.
Now, I happen to have a cancer that first appeared on the left side of my tongue, and was considered an easily-treatable minor head and neck cancer. The treatment modalities and drug options that were offered, as things moved along, were the standard ones in the field of head and neck oncology. However, it might turn out that the cancer I have may well have more in common with that suffered by those with breast cancer, and *maybe* I might have had different outcomes if I were treated based on cancer cell behavior rather than site of cancer occurrence. This is logical, yet remains speculative. Water under the bridge, besides.
I have some choices to make in the near future, obviously. Cost-benefit analysis is what you are left with.
The mutation to the PI3K enzyme causes two things to happen in a cancer cell, as far as I understand it:
- despite not receiving any external chemical signals to divide, it sends the message to ‘divide’ down to subsequent enzymes in the chain so the cell divides all the same.
- it creates fresh receptor sites on the surface of the cell to enable the usual cell division signals to be received/sent, thus working around the Erbitux blockade
It’s a pretty ingenious little mutation – you have to give it credit.
So, what to do about it? Both the clinical research person and my oncologist have concluded that the ‘best’ option I have, which I am now thinking of as akin to a ‘hail Mary pass’, is to take a drug that the FDA has recently approved for use with breast cancer treatment, namely a Novartis product called ‘Piqray’. This drug targets the PI3K mutation I have.
Piqray is a tablet taken by mouth. That’s nice as it would mean no visits to the hospital for infusions. What’s not to like? Well, common side effects are high blood sugar levels (hyperglycemia), signs of kidney, liver, or pancreatic problems, diarrhea, rash, low blood counts, nausea and vomiting, fatigue, decreased appetite, mouth sores, weight loss, low calcium levels, blood clotting problems, and hair loss. Very severe skin reactions, such as rashes with peeling and blistering, are possible.
There’s no free ride or magic bullets with cancer treatments. According to a study in the New England Journal of Medicine, 25% of patients who received Piqray had to discontinue use due to unmanageable side effects. And of those who could tolerate the side effects, the change in life expectancy relative to patients who did not receive the drug was 11 months compared to 5.7 months. We’re not talking anything more than a few extra months of survival, and those months seem likely to be characterized by unpleasant side effects.
Every single medical thing that you can do to prolong your life while in cancer treatment will generally have not-so pleasant side effects, ranging from some minor and tolerable, to some utterly debilitating. Some are lucky and have minor side effects, but such has not been my experience personally with chemo drugs so far.
As previously noted I am faced therefore with a cost-benefit analysis regarding treatment options. The cost I am talking about, of course, is the toll on my body from side effects, and living with that on a daily basis, and whether those side effects are worth the modest extension of life that *may* associate. But there is another cost that could associate, namely a financial one: a month’s supply of Piqray is around $15,000.00. The next battle on this front is to convince the insurance folks to permit an ‘off-label’ use of a drug approved for breast cancer patients. My family cannot bear the cost otherwise. Dana Farber told me today that the insurance company turned down the initial request to pay for Piqray, and they are now appealing. This is the scenario that I was told would likely unfold. We’ll see what happens. Update: appeal has not been denied as well. My sister in law is a lawyer working at a hospital administrative center, and she will see what she can do, but it’s a long shot at best.
Men can get breast cancer, though rarely it seems. I don’t have breast cancer, though I have no shortage of cancer otherwise.
Most of the studies undertaken on Piqray so far have overwhelmingly been studies of female patients suffering from breast cancer. In the study mentioned above, the percentage of the 570 or so patients in the study who were female, divided as they were into several groups, ranged from 99.4% to 100%. How the drug might play out in a male body, which I happen to inhabit, could be different, and nobody can really tell me how the picture might vary for me. In a way the future for me is akin to being the proverbial guinea pig – or lab rat, if you prefer. And okay, if I can provide useful data that may help others down the line, that’s a modest consolation I suppose. What I have though has behaved unusually from the get-go, so I’m not sure how much an outlier, so to speak, is an especially useful source of info.
I knew from the date of my cancer diagnosis that 95% of patients with the disease did not live more than 5 years beyond the date of diagnosis. That looks, facing facts of late, to be my situation as well, and it seems to me that I now have months left to live, not years. I am in a chess match with my own cells, and I know I am entering the ‘end game’ phase, and know I will get check-mated in the end, seemingly regardless of what moves I try to make. It’s not about ‘hoping’ more or ‘fighting harder’.
Sorry to say, but it gets worse…
On Friday two weeks back I had an appointment with an orthopedic oncologist at Brigham and Women’s Hospital, a facility of which I am well-acquainted and is located immediately adjacent to Dana Farber. The oncologist I met looked the spitting image of Clark Kent however I dare say he lacks super powers.
After speaking with him I gained some new information in regards to my kneed situation, but no comforting news. He thinks I should go ahead with the radiation treatment (I am in the middle of that currently), but worried about the stability of my knee going forward, due to the ravages it has suffered so far. He suggests crutches for the time being. I am resistant to this idea, partly due to the neuropathy in my arms making the wielding of crutches an unappetizing prospect. I could see using a cane though, or a style of crutches that strap to the forearm). If I fall and break my knee, I’ll be seeing him sooner rather than later or if at all. I really want to avoid any knee accidents in the near future. Try telling that to a 3-½ year-old who loves to jump on me from time to time….
I tell you, losing mobility way of knee cancer by has been a most unwelcome development in my life, and is in many ways the worst of the indignities I have had to deal with so far in this ongoing cancer nightmare. I would like to get to a better place with my knee, though I know at best I am buying months not years with whatever options present themselves generally.
The options the surgeon offers are as follows:
- a procedure where the cancer-damaged portion of my right lower femur is scraped out, then bone cement is put in, and the area capped with a metal plate. Because my leg is rather emaciated-looking at this stage, I will be able to feel the metal plate through my skin. Hardly a scintillating prospect.
- the knee joint would be cut out entirely and replaced with a titanium and plastic knee. This is a more major procedure and I would have to spend 4 days in hospital. I would lose a certain amount of range of motion. Running would be out, not that this is a big setback for me otherwise.
In regards to the prospect of surgery there is that aspect of the need for time to heal afterwards. I cannot be under the effects of any agents which might impair healing at the time of surgery and for a good while afterwards. Unfortunately, many cancer drugs, including the Erbitux I take every two weeks, work to disrupt any places in the body with rapidly-dividing cells. Rapidly-dividing cells, or even normally-dividing cells however are nice to have in terms of recovering from injury. I might be faced with a choice between staying on a drug which keeps the cancer at bay via suppression of cell division, or going off that drug, and allow the cancer to come back some amount, so that I can have an operation on my knee and have adequate time to heal from it. Both paths suck, it seems to me.
And how long do I need to heal from, say, knee replacement? What I read was, “It may take 4 to 6 months or up to an entire year to fully recover and realize total benefits of knee replacement surgery,” and elewhere, “stiffness and soreness usually lasts three to six months before gradually subsiding. You’ll have full recovery about 12-18 months after your surgery.”
Based on being the fact that I am riddled with cancer at the moment, and what sort of time the various options on the table buy me, I’m faced with the fact that I am unlikely to be alive another 12~18 months from now. That was not the easiest sentence to write, but what is true is true. So, I will probably not see full recovery of my knee even if I were to have the operation on it tomorrow. And, can I take 4 to 6 months off of treatments like chemo or immunotherapy to allow surgical healing without just making the overall situation worse? I doubt it. Rock, meet hard place.
To have any hope of dealing with the cancer situation, which is systemic, I’m going to need something which will work systemically on me. I can’t simply have surgery or radiation on every area. The only systemic options are chemo and other drugs, like the one mentioned above.
As it is, the radiation they will do on my knee next week is palliative, and buys me time and a reduction in pain, and nothing further. I’ll take that if I can get it. If I have an operation soon, I’ll be in pain the recovery from that for a long stretch, possibly the remainder of my days alive. It’s a grim prospect and I see no compelling reason to choose that.
In the short term, I will have to manage the knee pain somehow – which, given that tylenol and advil are losing their effectiveness, leaves opioids and their unpleasant side effects. Then I choose between having more chemo, accepting the ugly side effects, or if the insurance comes through, take the PI3K (mutation) inhibitor, hoping I can bear whatever side effects that eventuate. The devil you know is supposed to be the better one they say. I don’t know though. If the Piqray is approved by insurance, I would certainly try it and see what happens. Maybe I would have luck and not have the worst side effects. If I do have intolerable side effects, then I would have to go off it, and be back to square 1- or is it square 100 now? Hopefully whatever time on it I could manage would be of benefit in terms of stabilizing the cancer situation for some period of time. I don’t know.
My current goal is to live to my birthday, in early April, and the next would be to live to my son’s birthday, which is the middle of the year. Then it would be my wife’s birthday in the early fall. That’s as far ahead as I can reasonably hope for at this point. For all I know, those goals are not reasonable and I might be entering that final phase in the nearer term than I expect or hope. At the time of writing this, I am foreseeing a road ahead which looks like a combination of dying painfully from bone cancer, while, at the same time, slowly asphyxiating as things get worse in my upper lung and lower throat. Neither is what I would choose if I had such agency. Excuse the gallows humor, but where’s the random asteroid strike when you need one? That’s my preferred way, right after everyone’s first choice, namely, ‘quietly and without pain in my sleep’.
I need to write a will. I need to put affairs in order. That’s the stage where things are looking to be at. Sorry to be the bearer of bad news. I have been so very appreciative of the kind words and support received from readers here over the past several months. It’s been huge for me. I wish I didn’t have to leave the party so early, but it appears inevitable at this point. My wife may be the next one to update this thread unless things start to reverse for me. Next week it looks like I’ll be saying hello to chemo again. At least I know what to expect with that, and it should knock the cancer back for a while. I’ve also received oxycodone for the knee pain, and am so far managing side effects from that opioid fairly well.
All for now.