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My Treatment: Goserelin & Enzalutamide; surgery in 6 months

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Prostate Cancer
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Posted 6/28/2015 1:23 PM (GMT 0)
Finally started treatment 6/23/15. Started in a trial at NIH where I will be on hormone therapy for 6 months and surgery scheduled for 12/10/15. I will be monitored monthly to be sure (as sure as one can be with drugs and disease that can be unpredictable) that I can stay on this schedule.

Down the line I may post my reasons for choosing this treatment and any side effects that I experience. I do feel like the air I am breathing is different now that I have left the torturous treatment decision making process of my journey and entered the treatment phase.

Last Tuesday I had the first Goserelin Implant (Zoladex) injected in my stomach. I hate needles and this was quite painful so I am glad I only need one more in 3 months. I also started the Enzalutamide (Xtandi) that evening, 4 pills daily for 6 months.

I know these are some serious drugs and because of that I did not make this decision lightly. I also know with the lesion size (at greatest dimension) of 3.6cm and capsular bulge with possible extracapsular extension the risks involved with waiting for surgery in 6 months. But I am going in with my eyes wide open and hopeful.

To this point the only side effect has been some dizziness/vertigo. It started while at work on Wednesday around 2pm and I have gotten used to it. If I move my head too fast or turn too fast I'll get dizzy. Really any motion is triggering it but I will take this over most of the other SE I had read about. It is still early so I expect that I will have to deal with others down the road.

Jim
Posted 6/28/2015 4:12 PM (GMT 0)
Congrats on making a treatment decision! I think that once you make a decision it means you're playing offense and not defense. Good luck to you and keep us posted!
Posted 6/28/2015 5:41 PM (GMT 0)
James, keep us posted. I know that when I made the decision, I relaxed. Walking into the hospital on surgery day was a relief, it didn't stress me out at all.
Posted 7/3/2015 12:57 PM (GMT 0)
One of the reasons I decided to post my treatment is because I could not find much information in this forum with this combination of hormone therapy drugs. Individually I saw some info on Enzalutamide (Xtandi) but really nothing on Goserelin (Zoladex). So for others looking into Androgen deprivation maybe my experience will help. Of course as I hope all are aware, the side effects we do or do not experience probably can vary widely for each individual. But for me it was a little helpful to read of others experience so I was aware of the possibilities.

The first week was a roller coaster ride of vertigo. That came to an unexpected stop almost 1 week after starting; Tuesday evening I felt better after a rough dizzy day and it has been mild to none since. If I move to abruptly I may stumble a bit but I am no longer in the constant haze. The SE of fatigue was one of the ones I was most worried about but I have not had any, and I actually have had more energy since this started; almost immediately. They mentioned decreased libido but not yet; however I have lost my libido for food right away. I enjoy eating still when I get to it but I no longer have that obsessive desire. I have been able to easily cut back my portions and eat better because of this. I have lost 7lbs in just over a week. I was about 15 to 20 lbs over weight so this is a blessing so far (as a landscaper I tend to put on winter weight and this year because of the cancer diagnosis I did not lose it because I was eating for stress).

This trial is to see if there is any benefit to those with non metastatic prostate cancer with this combination of drugs before surgery. They are also using it to further study the diagnostic technique of the mpMRI. I had the endorectal coil MRI before and will have another right before surgery.

It is very early but I remain hopeful....Jim
Posted 12/30/2015 6:28 PM (GMT 0)
Finally had my surgery 12/15/15. Just a quick update on the 6 months of Goserelin and Enzalutamide since my last post was 7/3/15.

I started the hormone treatment 6/23 and within a day or two I started getting dizzy for about a month or so. It varied from mild to wild but settled down and stopped almost completely by approx. 8/1. It was a rough ride at times esp. since I work outside and the heat and sun would make it worse.

The end of the first week I did have some issues with thinking clearly but I think it tied in with the dizziness and generally being out of it. This feeling stopped(or subsided) along with the dizziness around 8/1.

After 2 weeks, 7/8; fatigue started. Just as the Dr. warned my days just needed to be shortened so I could get more rest. There were periods where the fatigue got really bad for a few days or so but I learned quickly to shut everything down that I could and just rest, rest, rest. Fatigue stayed with me for the rest of the 6 months but by the last month and 1/2 of being on the drugs it lessened quite a bit and I functioned very well.

Starting 7/11 I started getting ringing in my left ear. That also went from mild to wild to almost unbearable. Esp. around the time the dizziness shut off the tinnitus and some associated hearing loss got really bad for a few days. By the beginning of August the ringing was mild again and only the left ear and has stayed that way throughout. I did see a couple of ear Drs. and had some hearing tests and they believe I do have some mild hearing loss in my left ear. I did have some hearing issues in my 20's in the same ear so it just seemed to trigger it again, though I never had the ringing as bad as it got for a while. It is mild even today, but it does not bother me much at all. The trial Drs. say they have not heard much of this side effect if at all.

Hot flashes started around the time the ringing subsided, 8/9. They stayed with me and were quite frequent until the last month and 1/2 when they also subsided and only happened periodically. I handled them pretty well since I could usually figure out things that would trigger them and shut them off pretty fast. They were mostly a problem at night when trying to sleep.

Drs were correct about loss of libido. After the first 2 to 4 weeks I had 0 interest in sex. If I saw any pretty women on TV I quickly changed the channel because it was an annoyance to me. Even if my girlfriend mentioned sex (I don't think I could perform anyway) my answer to her would be 'yuck'. Very bizarre, lol. Like a boy before puberty afraid girls would give me the 'coodies'.

My heart goes out to those who must be on these type of treatments long term. While I had some rough rides during the 6 months it did help me to know it was going to end in 6 months. I just rested and cut back my life to where it was work (I cut that back as much as possible at times) and nothing much else. If I pushed too much the side effects always seemed to get worse, so I was up in my room by 5,6,7pm watching TV and made sure to almost always get 8 + hours sleep. Like I said my body did seem to adjust after 4.5 months or so where I felt pretty normal but I cannot imagine what others go through when thy must switch from different drugs to stay ahead of the cancer and deal with the variety of side effects on an on going basis. God bless them and I wish you all well.

Jim

ps...Shortly I will post the results of the trial and surgery in another post.
Posted 12/31/2015 5:35 PM (GMT 0)
Just a ps on the side effects, I forgot about the muscle loss. Since I do physical work for a living it was getting harder to do my job which probably contributed to the fatigue. I also gave up working out as I found I needed the energy and rest was more important to get through my work days.

The question might be was it all worth it? Without a doubt, YES. Since the tumor was pushing against the right side wall and the initial area of concern in the seminal vesicle (which came back negative on the targeted biopsy) I thought this was a great way to possible shrink it and hopefully stop it from getting out of the prostate. And since I wanted surgery over radiation I was willing to take any chance to avoid radiation down the line.

The difference with the MRI at the start of the trial and the end went as well as we could hope. The tumor size shrunk from 3.6cm at it widest to 1.5cm. The spot visible in the seminal vesicle area was gone and the tumor shrunk away some from the right side of the prostate wall. All very positive results.

The prostate itself shrunk from 32cc to 14cc. Which reminds me of another side effect,lol. My testicles and penis also noticeably shrunk from the drugs, but happy to say they are already making a comeback after surgery.

Surgery may have been a little more difficult for the Drs. due to the drugs making things a little 'sticky'. They can't be sure if the stickiness was from the cancer itself or the drugs. They did have to remove over 50% of the nerves on the right side, but that was the area of greatest concern to begin with.

So the pathology report will tell the tale, but I was very happy to participate in this trial and am hopeful that it was the right choice for me.....Jim H
Posted 2/28/2016 7:21 PM (GMT 0)
Bumping this up for f5.

Just a quick update. Last Gosereline shot was Sept, 2015. Last Enzalutimide pills were Dec. 7th, 2015.

I still feel the side effects, probably muscle loss being the most. Belly fat is really weird, I've always gained weight and lost it most of my life, maybe 20lbs over weight at my max before I lose it again. Ideally I would be happy around 195+- but I will run around 200 up to 215+ at my worst. But my stomach still always had muscle tone in it under the fat now it is pretty broken down and fat. Never had that happen before.
Fatigue is still there some, nothing major. Actually I sleep better because of it. Overall the Drs. said it may take up to a year or so to get back to almost normal. My testosterone is a blazing 26 according to a blood test a few weeks ago. Woohoo.
Posted 3/12/2016 2:01 PM (GMT 0)
Bumping this up for Jaymot.

I go back to the National Institute of Health(NIH) in Maryland next week for my first followup with them. I don't expect the info from the bloodtests, the psa, to be very helpful just yet. While on the hormones it got down .03 before surgery and I was told that until my testosterone starts to really return; within a year or so, the psa should be undetectable. So that does not allow us to see just yet if the surgery was truly successful. Of course if the psa shows anything now that would mean big trouble in little China, but the chances of that while still under the affect of the hormone therapy are really unlikely. My psa tests from 9 months out to 2+ years will be more nerve wracking for me because the testosterone should be back in full force.

ps...side effects still similar to 2/28. Fatigue, if at all is very mild. Still no libido, but in the past 2 weeks or so I have had sex dreams so I think it is starting to come back. Hot flashes probably almost daily, drive me a little nutty at times. Weird going from cold to sweating in a blink of an eye and then back again. Other minor things, nothing too bad at this point and I know the HT affect is slowly reducing it's hold.
Posted 5/29/2016 3:06 AM (GMT 0)
Just bumping this up in case FlDrifter and DrWho want to read about some experience with Hormone therapy. I did have the 2 different HT drugs as a combination so if you end up on a single HT drug your experiences will probably be different. The fatigue is pretty common for everyone but the dizziness may relate more to the combination. The loss of libido is pretty common but I think the combination also made the penis unusable for me. The belly fat which seems to be common really got bad by the 5th or 6 month and continues to be a problem 6 months after stopping HT, but since my testosterone is returning now I'm hoping the return of some muscle in that area will make for some positive changes soon. Hot flashes which are very common have almost completely subsided.
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