Dipping My Toe Back in the Western/Oncology World

 I had a video conference/visit with my onc today. As he pointed out, the last visit we had was in April 2020.This kind, well educated, respectful physician, excellent in his field, has been my oncologist since I moved to the Bay Area in 2017.

He started off with just asking me how I was and the answer to that was that I was pretty normal. I had my normal complaints: Severe Chemotherapy Induced Peripheral Neuropathy, specifically my hands and my feet; fatigue that has nothing to do with how much sleep or exercise I get. I explained to him that I now had to take Flomax as a result of the radiation two years ago. But that really, all in all, for a guy that is seven years out from stage IV, Gleason eight (4+4) with severe metastasis to the lungs, I was doing pretty well. Not great. Not always easy. Yet pretty damned good.

But considering someone with my diagnosis has a 3 in 10 chance of making it five years, and I just passed seven years in March. I feel pretty damn lucky. Especially since I've lost two friends in last year who were much younger than myself to different cancers. Diagnosed and dead within a year.

So despite the fact that he thinks I should have another biopsy and reconsider making hormone deprivation therapy my routine, I'm still opposed to those ideas. But we probably will do an Auxumin scan again to look for where the cancer is. Maybe an MRI if the Auxumin scan gives us new, different detail. My PSA has quadrupled since he saw me in March 2020. So to him and to me, that means that things are on the march. But I also know that nobody ever died from a high PSA. It’s just one marker. And when I was diagnosed with that damned diagnosis, my PSA was right about 5.2. But I want to be at least palliatively proactive. 

As much as I respect this physician, and I truly do, I feel like I may need to find somebody else who can think outside the Damned Castration Box. And I'm not sure that that Oncologist exists. All I know is, between luck, my doc’s advice and my decisions,I've beat the odds.

And for that, I’m grateful.

Younger Men Afflicted. Treatments That Do More Harm Than good. Change is Needed!

 

It often seems as if prostate cancer is just a side effect of being a healthy male and getting older. Oh, and you have this reproductive gland that causes issues. Unfortunately, now it’s younger and younger men that are being afflicted with more aggressive PCa. I was 52 when I was diagnosed seven years ago, Gleason eight/mets.

But these days it’s not at all uncommon for me to read comments or get emails through my blog from men in their 40s who have very aggressive cancers. This is no longer an “old man’s“ disease. The statistics bear that out over the last 20 to 30 years. Indeed, the incidence of PCa in men (boys! BOYS!) age 15-40 is increasing at a rate of about 2% a year.

I’m a firm believer that one must look outside the proverbial box. 

What Western medicine has had to offer, at least up until recently, has always been slice/dice, fry or castrate, either figuratively or literally.

That must change. You can’t take a 45 (or 52...or 60, etc) year old man who is quite healthy, take away his testosterone, make him incontinent, make him impotent, weaken his bones, take away his muscle, give him hot flashes, make him extraordinarily emotional and subject him to all the horrors, mental as well as physical, that go with either surgery, hormone deprivation or radiation and expect his body or mind to thrive. 

The approach to treating this prostate cancer must change.

Vaccinated, Cautious, Enjoying a Return to "Normal" and Updates......Post Covid (?) Report

It's been 3 months since I last checked in so it's time.  I've had two onc appointments over the last three weeks; one was canceled due to my error and one was canceled by the physician. We are working to get that rescheduled and I'll tell you why I want to speak with him but let me first just go over the basics. 

As per usual, the We're Not Talking About An Ingrown Toenail disclaimer applies. If you prefer not to read about male genitourinary function and or bowel habits, please feel free to click the lil button and close the page. Now :)

As far as my overall health, I think I'm doing pretty darn well. No new pains to report. I've had a fair amount of energy over the last 2 to 3 weeks, although the last two or three days have been kinda rough. But I am happy to report that I think the reason it was rough is that three out of five days prior to that, I made it to the gym for the first time in I'm sure two years. Didn't do anything crazy or try and lift heavy weights. No, I just did exercises that would kind of wake up my 2020 atrophied body. And I think it kind of wore me out. But I'm starting to make it a routine so this is great. I could stand to lose 10 pounds and really 15 or 20 would be great. But most importantly I need to get some strength and flexibility back.

OK so for the below the belt stuff. Urination is quite good as long as Flomax is on board. Without that medication, it's stop/start and a prolonged painful process. I did manage to see my favorite urologist, Dr. Jeremy Lieb, and he said everything looked good to him although someday...maybe... we might have to look at doing kind of a roto rooter procedure. He assured me that I would be checked into the hospital and heavily sedated. He also seemed to continue to be in favor of the idea of taking 20 to 40 mg of sildenafil daily just to ensure regular blood flow to the penis. Mr. Happy needs blood just like one's big toe!

Speaking of Mr. Happy, he's doing rather well. Two years after radiation, I'm happy to say that even without the prophylactic sildenafil, Mr.Happy can still rise to the occasion although not quite with fervor of an insatiable 20-year-old, yet with regular nocturnal and morning tumescence as common as they would be for most healthy males. Orgasm is still very possible and actually intense to a level that is actually quite painful about 15% of the time.  The other 85% is unmatched in my lifetime; intense to the point I'm weak after. There is no longer ejaculation or production of semen.

Something that has been of concern is what I have assumed to be an internal hemorrhoid. I had written it off to long-term use of narcotic pain medication. Not painful, not really bothersome other than the fact that it bleeds during during BMs about 70% of the time. After deciding it was time to get back into dealing with things like this post 2020, I went and saw a gastroenterologist by the name of Dr. Salvador Guevara. Good doctor, easy to talk to, obviously knowledgeable, just the right amount of humor and very respectful during examination as well as consult. Indeed I do have an internal roid and we are going to try and deal with naturally as opposed to ligation via banding. I found it rather interesting that as Dr. G was examining me his first question was," have you had radiation?" I advised that I had two years earlier and he said he could certainly tell. That was it rather stark reminder. Regardless, I'll see him again in about a month after I've had time to try natural remedies.

My old friends CIPN (Chemotherapy Induced Peripheral Neuropathy) and fatigue accompany me wherever I go. Fortunately I am fairly used to them and they are generally well controlled with medication.

So that's the physical stuff.

What I want get back with the oncologist about it is new treatments that show a lot of promise. Treatments by which radioactive molecules specifically target prostate cancer cells......PCa Smart Bombs if you will. New, improved treatments that use immunotherapy. There's been quite a increase in research and progress in this area of treatment and I've been fortunate enough to live longer than the estimates said I was going to. Who knows, maybe I can take advantage of some of it.

The hitch is that with many of these studies is they usually insist that you also take hormone depriving drugs. They want you castrated. And I refuse to believe after seven years of living with this disease, six of them of with testosterone coursing through my veins, that these new therapies can't be effective unless you also castrate a man. Medicine must come up with and the scientists simply have to figure out new, non-damaging treatments for this disease. They must think outside the box and quit jumping immediately to surgeries and drugs that are so damaging to a man both physically and psychologically.

That's what I want to be able to talk to the oncologist about. This will be the first time we've seen each other or communicated since March 2020 and I'm hoping that he can give me some guidance and think outside the box a bit. 

There is no doubt in my mind that if I had agreed to and taken all the treatments that various oncologists had suggested and, in some case, all but insisted that I take, that I would be a very, very ill man .....if not dead by now.

I'll check back in after I have that visit and I hope to be able to post some of the treatments I've been looking at and will talk with the good doctor about. As always, if you're out there, diagnosed,  scared, don't know what to do, who to talk to or where to turn, please don't hesitate to reach out to me.

Because I know exactly what it feels like.