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 be 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.

Planning Begins

I met with my oncologist today and got started with planning the treatment for my metastatic prostate cancer (PC). We went through the history of different treatments, the current status of my PC, and the rationale for the planned treatment. The first move is to get started on an androgen deprivation therapy (ADT) drug, which in my case will be Orgovyx, a daily pill, no injections or infusions. That will start in January. At this time there are no other drugs and no chemo in the plan. The small PC lesion on my right femur may be a candidate for obliteration by radiation. The radiation oncologist will have to determine the feasibility of this. If it's possible it would happen after two months on Orgovyx.  

Back in 2010 I was on ADT (Lupron) for 9 months and it wasn't pleasant. The drug itself is not problematic, and it did it's job well. The problem is that the mission of all ADT drugs is to shut down production of testosterone, and without testosterone things can get miserable. The best defense for me is to stay active, walk regularly, and do weight bearing exercises. I've been lazy for a few weeks but I'll get a new regimen going next week. This is a challenge given the other disabilities I've acquired over the years. Upper body exercise is bounded by natural "you're getting older" damage to my left shoulder and permanent damage to nerves and muscles on my right chest due to surgery in 2018. Exercises like pushups and lat pull downs would only make things worse. Long walks are a challenge due to hip tendonitis on both sides. I'll have to get creative with this because I'll be on Orgovyx for two years. I'm looking for a balance of things that work and are interesting enough to make me want to do them. 

Because you're reading this you've probably already seen my book. Unlike this blog, which is updated frequently, the book doesn't change and it's unlikely that you visit that site or think much about the book. Please go back and have a look at that web site. Renew your understanding of it's purpose and send a link to your friends and colleagues. You are the promoters. I have to leave it up to you because I'm tapped out on this and frankly do not have enough time and energy to work on it. I'm in fact the guy with eight cancers and I'm pretty damn busy just trying to survive. If you have any thoughts about this feel free to contact me directly. 

Tomorrow is Christmas, a big holiday in the US and important to Christians all around the world. This year it is also the first day of Hanukkah, which is important Jews in the US and all around the world. Best wishes to everyone! I think we can all use a day of peace and community.  

 

The Wait Is Over

Yesterday I secured an appointment with my medical oncologist for the morning of December 24. According to him the bone lesion on the femur is almost certainly prostate cancer. The most appropriate treatment for the PC at this time will be androgen deprivation therapy (ADT). The actual drug or combination of drugs remains to be seen, but I'll know next week.

A different doc who is an expert in mesothelioma ordered a bone biopsy for a lesion on the iliac crest, a specific part of the pelvic bone. All four doctors want to know what it is. They say it's unlikely to be mesothelioma, but you never know. That's not scheduled yet but it will probably happen within a few weeks.

Nobody wants to touch the lesion on the spleen. It's hard to biopsy and may bleed. At present the idea is to monitor it. It's all a little frightening, but it's good to have a plan.

Still Waiting...

I had the PSMA PET/CT on December 5, as planned. Three days later I was able to see the results. The prostate cancer (PC) has spread but not extensively. It has reappeared in the prostate gland. The small lesion on the femur is PC. The lesion on the pelvic bone is not PC and so remains a mystery. The spleen is also a mystery. There is no guidance yet as to how to proceed.

Why no guidance? So far no doctor has contacted me about the scan. Yesterday I made a call to see what's happening. I had a chat with an admin and then received a call from the radiation oncologist. It sounded like he hadn't seen the results until just before he called me and went through it. 

The back story is that there are four doctors in the communications loop, each of them a specialist in different but overlapping fields. They are looking at two different cancers and two unknown lesions. They have been in touch with each other but I think someone may have dropped the ball on following up with me, the patient. I politely triggered one doc to step into this yesterday. He's now requesting that the cancer oncologist meet with me ASAP. Everyone else will be copied on that message. 

Oddly, I'm not upset about this. I kind of wish the whole thing would just go away, so this period of inaction is welcome. But I know that things are going to get busy in 2025.