Treatment Update

Before I launch into this post, let me just say that I know it all sounds like nothing but complaining. I don’t intend to do that. What I want any other readers to know, especially if they have the same cancer or know someone with the same cancer, is that you are not alone.

The pains are real. The side effects will drain you. But we are all together in this.

It’s the fatigue that gets me most. I hear the same from a friend of mine who has prostate cancer in remission. His cancer was also a Gleason Scale 9, but it did not metastasize into his bones.

I’ve been reading the notes posted by my doctor and I seem to be quite a complainer. That saddens me.

I did have a bit of a rant about drug prices with him on our last visit (via phone – Covid, you know). I guess since I was paying for the visit, I can talk about anything, and he is a good listener.

Here’s the upshot of my rant…

The Apalutamide (Erleada) costs over $14,500 per bottle! Ouch. I carefully typed that number and put in a comma so people know I didn’t slip a decimal. My insurance requires me to pay only about $103, so that’s a workable number for us.

“What about people who don’t have good insurance, Doc?” I asked.

He said that poor people get assistance, but the average middle-class person is caught in a bad spot.

I guess they die. They cannot afford the expensive medicine that dropped my PSA down to less than one (more on that).

Here’s a tidbit I also added to the discussion: I turn 65 in October and, like all USA people I must enroll in Medicare.

Apparently, they only cover eighty percent of the cost of the medicine. My out-of-pocket cost will increase to about $3,000 per month for a bottle of medicine. Ouch.

The doctor shifted me to Relugolix, which costs only $2,306, for which I may owe $807.30. That has yet to be finalized. I don’t see the upside at this time, but the change was not motivated as much by cost as by the side effects I’m dealing with using the Erleada.

The cost issue for the drugs is only a rant, but I can see why so many people in our country are disillusioned.

 

Back to the cancer and the treatment…

Doctors use the PSA results as the barometer of the prostate cancer in my system.

So far, my PSA results look like this:

I think I talked about the previous treatments, so let me focus on the Erleada. The primary problem for Erleada is not the cost, but the side effects. Aside from the fatigue, which cannot seem to be mitigated, there are a lot of pains, mostly in my newly enhanced breast tissue. Dammit. And it is sharp pain. Any pressure against my chest, even a tight shirt, hurts like someone jabbing a needle into me on each side.

There is the constant ache in my right leg and right hip, both of which occasionally flare into stabbing pain. I’m getting used to that.

Yeah, and the gonad pain… If you’re dealing with the same cancer, you know what I’m talking about. It isn't always there, but sometimes...

With a dosage of two pills a day or more, I continued to have significant headaches and sweats. At one pill per day, these are more manageable. For the two months between May and July I took a single dose per day. As the results show, the PSA rose to an unfortunate value of 3.8.

Because of some of the pains I still endure, the doctor prescribed the Relugolix and we will see how that goes.

It seems the headaches are more frequent, but the pain in my breast tissue seems to be decreasing. I’ll take the trade.

I am having the hot flashes again (sweats), but that’s the price of changing medications. It all depends on what the PSA results are at the end of the month.

The doctor’s comments on the last few months of treatment:

"At his 03/16/2022, his fatigue was about the same during the treatment breaks but his headaches and sweats have were significantly improved. He then restarted at 1 pill a day. At his 04/27/2022 visit, he was still doing relatively well so he increased the apalutamide dose to 2 pills (120 mg) PO q Day. At his 05/25/2022, his headaches again increased so we reduced the dose again to 60 mg a day."

Here are the doctor’s notes on my scans:

"A baseline CT of the abdomen and pelvis was obtained locally, showing retroperitoneal and pelvic lymphadenopathy on 06/03/2021.  A baseline bone scan was done on 06/23/2021, showing multiple foci of abnormal tracer uptake in lumbar vertebral bodies and thoracic vertebral bodies as well as focal abnormal uptake in the bilateral ribs.  Osseous metastatic disease to the axial and appendicular skeleton were noted on bone scan obtained locally on 06/23/2021.  

Bone scan 10/20/2021 showed that multifocal osseous metastatic disease in the axial and proximal appendicular skeleton was improved in activity since the prior bone scan dated 6/30/2021. CT CAP 10/20/2021 showed interval decrease in size of the retroperitoneal and pelvic lymphadenopathy, mildly enlarged prevascular lymph node in the mediastinum and interval development of multifocal sclerotic osseous metastatic disease when compared to prior CT dated 6/3/2021.

Bone scan 03/15/2022 showed multifocal osseous metastasis with overall reduction in uptake which may relate to response to therapy. CT scan 03/15/2022 showed multifocal osseous metastases correlated with bone scan. There was iInterval decrease in abdominal and pelvic adenopathy, slight decrease in size of the prostate and new subcentimeter groundless opacities in the right lung, most likely inflammatory or infectious."

 

Of course, the record is not complete unless I once again mention the TURP. For all you guys out there, I’m right with you. Yeah, we probably needed the surgery, but Holy Smokes!

"He then underwent a transurethral resection of the prostate (TURP) with his local urologist on 07/01/2021, which improved the urinary retention and weak stream.  MDA Pathology showed a positive left para-aortic lymph node obtained during the procedure for metastatic prostatic adenocarcinoma.  His pathology also showed a Gleason score of 9 (4+5).  His PSA only reduced to 88.0 in 07/2021, following the TURP, which prompted the initiation of androgen deprivation therapy (ADT) with Eligard and bicalutamide on 07/21/2021."

 

Thanks for reading. I'll try to do better on updates, and perhaps even on posts. God bless you all.