My prostate journey and testosterone side effects

[PT49]

I have been following this website for over a year now and have learned so much from others who have shared their journey that I feel compelled to share my story in hopes that it might help someone in their decision making process. First of all, a big thank you to everyone who posts on this site. The advice given has guided me through the decision making process as I did not have a medical team to do this for me. My urologist (who is an excellent surgeon) advised me against surgery due to my age (74), prior abdominal surgeries, and cardiac issues. Instead he recommended I see a RO. I was more or less on my own to find a good RO because of a recent change in my insurance plan. I was fortunate to discover an excellent treatment center and RO--Dr. Arthur Chung at Advanced Oncology in Riverside, CA.

A short history and a question: I was diagnosed with Gleason 7 (4+3 unfavorable) in late June 2023--4 cores (up to 45%) all positive for Gleason 7 (4+3); PSA was 3.9 ng/ml. PSMA showed no metastasis. Began ADT (one 6 month shot-Lupron) in July followed by SBRT (5 treatments) in August. For me the SBRT was the way to go--no Space-OAR gel and no side effects. The Lupron was a whole another story, however. Major side-effects--severe hot flashes; brain fog; extreme muscle pain; major cardiac issues requiring hospitalization.

Today I am 4 months past the end of my Lupron shot. PSA remains less then 0.04 ng/ml and my testosterone is now back in the normal range at 368 ng/dl. Now my question: can anyone share with me how long the side effects should last after Testosterone comes back into normal range? I am still having hot flashes--albeit not as frequent and not as severe; brain fog has pretty much dissipated along with the cardiac issues. I am still experiencing some pretty significant muscle pain but interspersed now with increasing periods of relief.

[London441]

You should be free of the side effects soon, especially since your testosterone is returning. It would be helpful to know what it was at diagnosis/beginning of treatment, hopefully it was taken then. Doctors should always do this but too often do not. 386 is good but your recovery overall is affected by what you began with, regardless of whether you get back to that level or not.

How much do you exercise and what kind? This also plays a very important role.

[Prostatepete in reply to London441]

Hi I had 25 IMRT sessions with brachyboost and 18 months Eligard. 18 months after stopping my testosterone was 305. I still felt weak and sickly. Now a year later testosterone 586 I feel much better. I m 68. Psa 0.03 Hang in there.

[PT49 in reply to Prostatepete]

Thank you for your reply--I guess I just need to be more patient. I'm a hurry up kind of guy and it's hard for me to wait for things to happen. Your response corrects a misconception I had that if testosterone comes back to normal everything else should do so at the same time.

[PT49 in reply to London441]

Thank you for taking the time to respond. I had my first testosterone test two weeks after my 6 month lupron shot--it was 216 ng/dl. In that aspect I feel I'm pretty fortunate for it to be where it's at right now. My testosterone levels normally run on the low end of normal. As far as exercise goes I started out well--swimming 1/2 mile per day, 6 days/week. I did this for the first 3 months. However, I had an accident that tore up my legs pretty badly. The time that it took to heal kept me out of the pool for the next 2 months. But by then I was having some serious cardiac side effects that's kept me grounded until now. I plan on resuming swimming in the next week or so and hopefully that will finish off the rest of my side effects.

[London441 in reply to PT49]

Great. Be also encouraged that you were only on a 6 month course of Lupron. Side effects and time to T recovery both are more prominent with longer time on it.

[Mgtd]

I am very similar to you in age, diagnosis and T recovery period. I was fast in recovering my T like you according to the general guidance given about how long it should take. In my case it took about 2 months to enter the normal range after 6 months on ADT and radiation.

In my case I would estimate it took about another month before all the hot flashes and assorted other normal side effects became really unnoticeable.

However I was diligent prior to and after treatment to do my gym work and aerobics everyday. That seemed to really help with how I felt physically and mentally.

This may sound nutty but walking in the forest/nature areas really had a profound impact on my mental health and overall attitude.

[PT49 in reply to Mgtd]

I appreciate your reply. It's reassuring to hear that other people have similar experiences. I am in total agreement with your last sentence. I use to live in the mountains overlooking a beautiful lake. I would walk around that lake (3 miles) 5 or 6 times a week--the mental and spiritual healing was profound. Unfortunately due to other medical issues that I have I am no longer able to walk as my primary source of exercise. I now swim for my exercise as it doesn't seem to have as much of a negative impact on my muscles and joints.

[Mgtd]

Thanks for the reassurance on being in nature.

When I designed my house every room and transition between areas captures a unique nature scene. People who visit have commented that the house has a unique feel and lifting effect on them. Nature has that effect.

Of course I am very fortunate to have this natural environment to use as my backdrop in designing and framing those views. This parcel of land existed for years because no one was willing to deal with the impediments to quick and easy building technology or lacked the vision to see its potential.

[PT49 in reply to Mgtd]

We were fortunate to find a house already built in the mountains overlooking a lake. It was a southern exposure and every room, except one BR overlooked the lake and was filled with natural sunlight.

[Mgtd in reply to PT49]

That sounds like someone took the time and effort to plan well and incorporate nature in the design.

Where do you live?

[PT49]

Our home was in Crestline, CA. We lived there for 7 years and recently moved off of the mountain to be closer to medical care. Doctor's visits seem to fill my social calendar these days and living 40 miles away got to be a little too much of a drive--especially in winter. We moved right before the big snow of 2023. We got buried under 9 ft of snow in a week at the house where we use to live.

[conbio]

Seems like you are on a good path. Me, now 68, G 5+4, EBRT, Brachy, 18 months of Lupron. It took about 5 months for my T to get back in normal range after stopping Lupron. Hot flashes were the first thing to go away, then my strength got better, then my aerobic capacity.

I'd say it took 6 months before I really felt recovered and at full strength. Feeling pretty good now. This was last week at Rainier...

recovery

[PT49 in reply to conbio]

Thank you for the encouraging word. Beautiful picture of Rainier by the way.

[janebob99]

You may want to consider supplementing with testosterone, to get a more healthy level of 600-700 ng/dl. Your local compounding pharmacy will custom make a gel or creme for you. You will feel a huge difference.

[PT49 in reply to janebob99]

Thank you for your reply. Correct me if I'm wrong but I am under the impression that once you have had prostate cancer taking testosterone supplements is not recommended. That has been the advice of both my urologist and primary care doctor.

[janebob99]

Good question.

My belief (I'm not a doctor) is that it depends on whether you are hormone-sensitive or castrate-resistant. If the former, then taking testosterone is bad. That's the entire basis for doing Androgen Deprivation Therapy (ADT).

However, if you have been "cured" of prostate cancer, or if you are castrate-resistant, then it appears to be safe to do supplemental testosterone. This has been studied and reported on extensively by Dr. Abraham Morgentaler at Harvard Univ. You may want to Google some of his papers (He's written over 150 papers on the use of testosterone in castrate-resistent men with prostate cancer.)

Bob in New Mexico

[PT49 in reply to janebob99]

I think Dr. Morgentaler makes a good point but it pivots on the fact of whether you are hormone-sensitive or castrate resistant. If you're not sure on which camp you fall in your choice could be deadly. For myself, I think I would like to see a whole lot more research/data on this issue before making such a critical decision. In my case PSA is staying low--less than 0.04 and my testosterone level is in the normal range (368) and rising. July 13 will be my 1 year anniversary for my 6 mo. Lupron shot. All things considered I think I am in a good place and will just give it some more time for the side effects to be done.

[janebob99 in reply to PT49]

You are absolutely correct.

Sounds like you have had a good response to ADT and T-recovery afterwards.

If you are still having hot flashes, a natural way to counteract that is to use low-dose supplemental estradiol. A good way is to use 1 large estradiol patch per week (0.1 mg estradiol per 24 hr). Or, 1-2 pumps per day of Divigel.com or Estrogel.com. Your MO or PCP should be OK with prescribing this to treat hot flashes.

I think the definition of "castrate-resistant" is when the PSA rises 2 points above the PSA nadir, while doing ADT, or afterwards.

The BAT therapy is an extreme example of using high-dose testosterone to treat advanced prostate cancer patients.

Bob in New Mexico

[PT49 in reply to janebob99]

Thanks for all the helpful tips. I will keep those in mind if I can't get down to zero hot flashes/day. Right now they are slowly dissipating--just not as fast as I would like. I was up to 2-3/hour during treatment but now I'm down to 4 or 5/day and sometimes I go the whole day without experiencing them. It seems that they are more frequent while sleeping at night. One of the side effects I had while on Lupron was anemia--low Hemoglobin; Hematocrit; and RBC. Those have finally come back up into normal range. I had blood levels drawn yesterday for those plus PSA and Testosterone. So should get the results back for those in a few days.

[PT49 in reply to PT49]

Here’s an interesting article that I read this morning on The Daily 3 Health regarding Testosterone replacement therapy—A current clinical trial called the Testosterone Replacement Therapy for Assessment of Long-term Vascular Events and Efficacy Response in Hypogonadal Men (TRAVERSE) found that men with cardiovascular disease risk factors taking testosterone-replacement therapy, or TRT, may have a higher risk of AFib.

I am a cardiac patient with multiple issues which have all been magnified during the past 6 months while on Lupron. Currently I have two heart valves that are going to need replacement and/or repair soon both of which make me more susceptible to getting AFib. So for me whatever lingering side effects I might have from the ADT that could be fixed with Testosterone supplements, I will just have to learn to live with as AFib is definitely something that I do not want.