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.

Hurry Up And Wait

Last week, the day before Thanksgiving, I met with my radiation oncologist. The rise in PSA since the last treatment did not cause undue alarm. However, it’s likely that the disease has spread to other locations. Tomorrow I’ll have a PSMA PET/CT to look for those other locations. Small lesions on the femur and pelvis are suspects. The lesion on the spleen is probably something else. Future PC treatments will have to be hormones or drugs. Now that the cat is out of the bag the pinpoint radiation treatment will no longer be effective to contain the disease.

The doctor who treated my peritoneal mesothelioma in 2014 recently retired, so I met with his replacement yesterday to talk about the lesion on the spleen and what it’s cause might be. He said that there are many possibilities (some of them benign) and the return of mesothelioma is not a favored diagnosis, nor is PC. Tomorrow’s imaging study should show definitively whether the lesion is caused by PC. If not, his approach will be a very specific imaging test to better define the spleen problem. Unless something specific is discovered, the plan will be regular images to monitor the size of the lesion and the spleen. If it continues to grow then a biopsy is likely. Biopsy results would determine future actions. Interestingly, the doc described the spleen as a loose sack of hamburger. It’s highly vascular and a biopsy may cause bleeding that would require a surgical repair. If the lesion continues to expand, the risk is that it may rupture unexpectedly, which would require immediate attention due to the risk of bleeding out and dying.  

Summary: This is a step-by-step situation. I’m pleased that these doctors are in touch with each other and that all of them see all of the test results and images. I’ll post again when the PSMA PET/CT results are in.

A Week Of Bad News

Last week started off positive and quickly went over the cliff. In my last post I mentioned that there is a treatment for hip tendonitis that could be a game changer for me. The technology is called extracorporeal shockwave therapy (EST). I won’t go into the details but to say that the doctor who can offer EST required an MRI of the pelvis to confirm compatibility with the EST. He is especially sensitive to my cancer history, as doctors don’t like to disrupt anything cancerous on the theory that disrupting a tumor may cause cancer cells to break off and travel to other locations where they can take root. I had the MRI on Monday and the results showed a lesion on the femur and another on the pelvis. These new lesions put the kibosh on the EST. The concern is that the lesions may be more metastatic prostate cancer (PC), which often spreads to lymph nodes and bones. As noted in earlier posts, PC was already identified in one lymph node and treated back in July.

 

On Friday I went for my six month CT scan and a visit with the doctor who performed surgery on my chest in 2018 for pleural mesothelioma. The scan showed that an existing small and stable lesion on my spleen has grown significantly. He wants to know what it is. He wants an MRI and a biopsy. I explained the bone lesions and the possible relationship to PC. In fact, I was scheduled for a blood draw that same day to monitor PSA levels associated with PC. He decided to delay the MRI until more PC data is available. I had the blood draw and my PSA level is now higher than it was before the July treatment. This likely means that the PC is spreading in spite of all treatments so far, but we don’t know where it is. I already have an appointment next week with the doctor who has been treating the PC. I expect he’ll want to do an imaging study called PSMA PET/CT. This should identify the already detected lesions as PC or something else. It may also find PC in other locations. The spleen lesion, if not identified as PC, could indicate a recurrence of mesothelioma. The worst case here is that I have two recurring cancers. I don’t know if it’s possible to treat them simultaneously.

 

In a perfect world, the Monday MRI would have been normal and I’d be starting EST to improve hip tendonitis. The Friday CT would have been clear, and the PSA test would show reduced PSA compared to six months ago. No such luck.