Narrowing Down The Focus To The Spleen

 

A lot of test results came in this week, including analysis of the pleural effusion fluid that was drained from my chest cavity and a careful review of a full body PET/CT. I discussed all of this with my doctor yesterday.

1.    The pleural effusion in my left lung showed signs of mesothelioma cells. My doctor, one of the top mesothelioma doctors in the world, did not show great concern. In all of the recent imaging, there is no sign of disease spread. At this time there is nothing to treat, no lesions or nodules, so the strategy is ongoing surveillance. He also assured me that there are ways to treat any emergence of mesothelioma if caught early without damaging the actual lung. Phew, that’s a big load off my mind.

2.   The right lung is stable. For several years there has been a small pleural effusion and it has now cleared on its own.

3.   With the exception of the spleen, my abdomen is clear of anything that looks remotely cancerous; liver, pancreas, kidneys; all clear. This too is another big load off my mind.

4.   The question now is: What’s going on with the spleen? My doctor has never seen anything like this. His dedicated radiology team cannot come to a conclusion. Lesions of the spleen are “not favored” for mesothelioma, prostate cancer, or lymphoma, given the data that we now have. Nonetheless, due to my BAP1 mutation I am more likely to develop new cancers than the average person. My doctor is a logical thinker and troubleshooter, just like I am. He said that he can’t move forward with 80% confidence, he needs 100% confidence or as close to that as he can get. I agree. So the next step is a biopsy of the spleen. It’s an outpatient procedure and I expect that it will be scheduled very soon.

There is a hodgepodge of other things. I’m mildly anemic due to low hemoglobin, low hematocrit, and low iron. I’m on an iron supplement, and the blood metrics should sort themselves out now that I’ve stopped taking the prostate cancer drug. I’ve lost some weight, mostly muscle, and some appetite. Now suddenly I have the appetite of a horse. We’ll see if this lasts. I still have some dizzy moments that force me to sit down. No explanation for that.

After visiting the doctor yesterday, I came home and had a huge lunch. An hour later I went out for a short bike ride. Unlike other recent rides, it did not destroy me and I was up and moving around doing useful things after a short rest (the kind of rest that every cyclist takes after a ride). Then I ate a huge meal and collapsed in front the TV for a Netflix session.

So here I am, possibly bottomed out and on the road to improvement, but still with a mysterious spleen issue. The spleen problem can range from deadly to benign, so I am seriously looking forward to the biopsy. The prostate cancer problem is on the back burner for now. One last note; I could add a lot more detail and technical information. It would make this post really long, but if anyone has questions and wants to reach out to me, I’ll do my best to answer those questions.

CT Reveals Problems

 

Here are some updates. First, I made a command decision to stop taking Orgovyx. My last dose was on 3/20. I’m choosing QoL over longevity. But really, that drug was not right for me and may in fact have hastened me to the grave. I see my oncologist on Monday to sort things out.   

Second, I had a comprehensive CT scan on Thursday and met with my doctor on Friday. There are some problems. I had a pleural effusion in my left lung. This is fluid that accumulates in the space between the lung and the chest. The doc wanted to drain it immediately. He called a surgeon to do the procedure, right then and there. Fortunately it’s not complicated and can be done in 20 minutes in a normal procedure room. I sat up and leaned forward to rest my arms and head on an elevated table. It’s liking trying to sleep on an airplane by pulling out the tray and laying your head on it. The procedure is accomplished by inserting a large needle through the chest wall until the tip reaches the fluid. A suction device is applied and the fluid drains into a flask. I looked at the fluid. There was 350ml of the stuff and it looked brown/amber, like a beer, which is the normal color. The surgeon put a small bandage on it and told to take it off after 24 hours. The overall idea for this procedure was to improve my breathing and to analyze the fluid to determine if there is any sign of cancer in the fluid.

The next problem is that my spleen has grown larger and now has more lesions on it than it did in December. These could be benign but could also be some kind of cancer, which is probable given the many cancers I’ve grappled with, including some within the abdomen. The doc wants a PET scan to better understand what’s happening. That’s where it stands right now. Suffice it say that Friday was not a great day.

Zap! The Radiation Phase

On Friday, 3/14, I had my last day of SBRT high dose radiation treatments, a total of five altogether. The treatment is painless and generally easy, but it leaves me with fatigue and general malaise. I'm hoping that clears up in a week or two and also hoping that taking Orgovyx doesn't slow things down. 

On Thursday, 3/20, I'll have a CT of my chest and abdomen to follow up on other health issues, including the status of mesothelioma, any changes in the mysterious lesions previously reported, or anything new and suspicious. I'll meet the doctor (thoracic surgeon and mesothelioma specialist) on Friday, 3/21, to go through it all.   

It's known that cancer patients with co-morbidities (other illnesses) have a generally poorer prognosis. They have more problems to deal with. In some cases there are iatrogenic problems. This means that treating one illness can actually make the other illness worse. What is one supposed to do? In my book I repeatedly mention the goal of achieving your best possible health outcome. It’s a good idea, but it requires you to define your “best possible health outcome.” Some people want to live as long as possible and will accept any and all treatments, in spite of whatever side effects they will experience. Other people may want to maintain the highest level of quality of life (QoL). What do we give up when making these decisions? If you’re after QoL and turn down treatment, will you die sooner? There is no way to know. If you’re after longevity and accept treatments and their side effects, will you live longer? Again, no way to know. Let’s say that you do live longer but are miserable the whole time and then face your imminent death. Was it worth it? Do you gain substantially more life than if you had chosen QoL? No way to know. If you have co-morbidities more questions come up. If you can only treat one illness, which one should it be? Which one is likely to kill you sooner? What if one treatment is more tolerable than the other? If you’re close to your imminent death, you may want to skip any treatments for the other illnesses, because, well, why bother? Unfortunately there is no good way to quantify this. I always try to gather a heap of data and think it through. It's just as important to listen to your own body and consider what you really want to do over the next 6 months, one year, etc. Then you just have to take your best shot at it. 

 

The Orgovyx Experience

 

I’ve been trying to find my way through the new reality of the drug called Orgovyx and its kaleidoscope of side effects. The biggest problems I’m having are weakness (due to loss of lean muscle), fatigue, and a variety of aches and pains.

Weakness showed up right away. I’ve lost a few pounds since I started taking the drug. I dislike my appearance in a mirror as I am getting scrawny and losing muscle tone everywhere. My intention was to accelerate exercise and muscle building before I started on Orgovyx. It didn’t work out that way. I went into it with the backend of a cold and then a second cold, both of which put me on the couch for a couple of days. The procedure to remove the basal cell carcinoma on my head required that I do nothing physically difficult for one or two weeks. Same restriction after the graft, which came one week after the excision. I violated the rules a little bit, but I was still largely sedentary for a month and not feeling well. So the Orgovyx got a head start on me and it has gained ground. Generally speaking, men on ADT drugs cannot build new muscles, but with regular workouts they may be able to maintain existing muscle mass. I’m back in the gym now and sorting out the exercises that I need vs. the ones I can actually do. This leads me to the next subject, fatigue.

 

For me fatigue is a sense of malaise and the desire to sleep. My metabolism can change in a minute and cause me to lose all motivation. Fatigue is also the agony of walking long distances and the desire to end the effort immediately. I need to look for windows of opportunity to do physical things. I’m hoping to find a pattern in this but haven’t discovered one yet. If I force myself to work through the fatigue period it can screw me up for the rest of the day.

 

Aches and pains are everywhere and they come and go. For a while I had a severe pain under my left rib cage. It immobilized me and I was genuinely scared that my spleen might rupture or some new illness was blossoming. No one could find a reason for it. I happened to see my oncologist last week and he probed my abdomen and found nothing unusual. He suggested that it might be muscular. I went home and did some upper body exercises and the pain disappeared. If I don’t do the exercise at least every other day the pain returns, although less severe. And this is only one month into the projected 24 months that I should stay on this drug. It's hard for me to be positive about this, especially considering the other cancers that are competing to kill me. It would suck to be miserable for two years and then die of something else.

Summation

It's getting difficult to follow all of these posts, isn't it? If you're a regular reader you've been taking a walk in my shoes. It's getting crazy because there are too many things happening at the same time. Here's a summation of where I'm at right now.

1. The basal cell carcinoma was removed from scalp, leaving a large wound that required a skin graft. The donor site was my right clavicle. The graft seems to be working and the donor site is healing nicely. That should be the end of this specific issue.
2. I've been taking Orgovyx for about 10 days. The idea of using estrogen to counteract some of the dangerous side effects of Orgovyx is not supported by my oncologist. He said there is not enough data to recommend its use and he wants to stick with Orgovyx for a while to see how well it works before adding anything else. Makes sense. 
3. The bone lesion on my femur has been identified as prostate cancer and radiation therapy has been scheduled to treat it. The treatment consists of 1 setup appointment (scheduled for mid-February) and 5 sessions in the radiation machine (scheduled for the first half of March). This treatment will not be curative, so I guess you would call it palliative care; treatment of a symptom, not the disease that caused the symptom. This could be a little more complicated with PC, because these treatments may extend my life as well eliminate some symptoms. Time will tell. 
4. In late December four doctors decided that the mysterious bone lesion on my pelvis should be biopsied. This hasn't happened and I haven't been able to get an answer as to why it's not happening.  Today I was told that the group that does these biopsies, Interventional Radiology (IR) is so heavily booked that they have been unable to schedule this procedure. My surgeon's PA has promised to follow up on this and see if she can get me into the IR schedule. This is my fourth attempt to get answers. It's not that I'm eager to have a surgical procedure; I do what the doctors recommend. I just want answers to pin down loose ends. 

There are other active issues, but the PC and mesothelioma and unknown lesions on my pelvis and my spleen are my biggest concerns.

Last minute update on #4: An hour after I posted this I received a call from my surgeon's PA. Based on their experience, the IR team does not agree that this lesion should be biopsied. It is not indicative of cancer and the correct approach is to monitor it. They spoke with the surgeon who ordered the procedure and he agreed. One less thing for me to do! But where did that story of "so heavily booked" come from?

 

First Dose of Orgovyx - Prostate Cancer Treatment Has Begun

I took my first dose of Orgovyx, an androgen deprivation therapy (ADT) drug, on Friday, January 10th. It is known to kick in fast, and indeed, it has kicked in fast. The current plan is for me to take Orgovyx for two years and just deal with the side effects. I'll have my first follow up with my oncologist in mid-February to see how this is working out.

There are some newer ways to counteract a lot of the dangerous side effects of ADT. Do you know that men produce estrogen, a hormone that is generally associated with women? The concentration of estrogen in men is much lower than in women, but it's still essential for men. The purpose of ADT is to reduce testosterone, but it also reduces estrogen production. Lack of estrogen is the culprit behind many of the ADT side effects. There is now solid evidence that estrogen replacement during ADT mitigates those side effects and results in improved overall health and quality of life. This does not have any impact on the efficacy of ADT. This has been confirmed in clinical trials. There is no FDA approval for this use of estrogen, though it can be used "off label" and it's inexpensive if health insurance won't pay for it. I'm checking with my oncologist to see if he will green-light this estrogen replacement strategy or explain to me why it's a bad idea.

The most common side effect for men using estrogen is gynecomastia, the growth of boobs (sometimes known as "man boobs," which is fairly common in older men; just go to the beach and look around). If I can get onto this therapy and I grow some boobs, I think I can handle it. But no staring! ; )

Basal Cell Carcinoma Removed From Head

Yesterday I had a basal cell carcinoma BCC) removed from the top of my head. The procedure was done using a process called Mohs surgery. The surgeon takes as little skin as possible. The part that is excised goes to a lab immediately and they look to see if the margins are clear of the BCC. It only took two excisions, but the whole process took four hours because it takes time to prepare the excised skin for analysis. When the margins are clear, a decision is made about how to close the wound. In this case it could be natural healing, but the wound is about the size of a half dollar. It would take 3 to 6 months before the wound fully heals. We decided to do a graft instead, with donor skin taken from the clavicle area. Sadly, this will not happen until next Wednesday, but the upside is that the graft should be healed in a month. Right now I have a very bulky pressure bandage on my head. It looks weird, but I can cover it with a hat when I go out. 

It's worth mentioning that the entire procedure was pain free, with the exception that I felt the needle used to inject the local anesthetic. Minor pain for a few seconds. Later, at night, I felt the wound throbbing. Tylenol took care of that. No problems this morning.