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Mon, Jul 27 7:06am · Hot Flashes and Hormonal Therapy for Prostate Cancer in Prostate Cancer

I did 18 months of Lupron in conjunction with six cycles of taxotere and 25 IMRT after surgery and SRT failed. The SEs:

Fatigue
Muscle and joint stiffness
Hot flashes
Penile and testicle shrinkage.

I did not experience weight gain or loss of libido.

I managed to mitigate the fatigue and muscle and joint stiffness through exercise, notice I said mitigate. I swam, rode my bike, played basketball, skied with friends, hiked in the mountains with family, lifted weights.

I chose not to go the pharmaceutical route for the hot flashes. They were annoying but not debilitating. Some of the ways I managed was not running the heater in my car during the winter, going out on the back deck, keeping the ceiling fans going, swimming in the unheated pool…these are best done without your spouse though dual climate controls do help keep the peace when driving!

Mon, Jul 27 6:54am · Lupron Treatment Duration: How long were you on it? in Prostate Cancer

You say your PCa is not in the bones, based on what, a scan, if so, would help the folks to know what kind of scan and what did it say, was it found in the pelvic lymph nodes, nothing visceral…

Her's an article which discusses ADT, Lupron, with radiation – https://www.prostatecancer.news/2016/08/adt-and-radiation-for-first-line.html

Fri, Apr 24 5:06pm · Anyone had Proton Beam SBRT radiation at Mayo Clinic? in Prostate Cancer

I have have two separate radiation treatments.

March 2016, 39 IMRT – Rapid Arc, 70.2 Gya. SRT to the prostate bed
July 2017 – 25 IMRT, 45 Gya, PLNs

No SE at this point.

Most nights I get up once, sometimes none to urinate.
No incontinence or problems urinating.

My radiologist here in Kansas City just says "Kevin, never had anyone quite like you…" I continued to drink alcohol, coffee…and exercise while going though the two rounds of radiation.

If (ok, when) my PCa returns we will image using C11 Choline, Aximun or the PMSA and then make e decision about treatment depending on what the imaging shows, PSADT and PSAV. There are many more "radiation" options than just a few years ago.

Sun, Feb 9 1:58pm · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

I did 18 months of Lupron from Jan 17-May 18.

Keep in mind that there is a flair associated with each Lupron shot so if you're within five days of the shot, your T may have gone up some before it plummeted.

Don't worry, it is likely the side affects will come…soon enough.

Hot flashes, by and large most men did, certainly I did. How did I deal with them?

Mostly physical.

Exercise, doesn't eliminate them but may play a role in moderating them. In addition, exercise will help with the metabolic affects, fatigue, weight gain…not sure about the joint and muscle stiffness, felt like I was 100 years old inset instead of 61!

Some things I did.

I never ran the heater in my car over the two winters in Kansas, my friends did not relish riding with me. Fortunately I have dual climate control so my passengers could set their temperature. I remember my daughter came home for Christmas, I loaned her my car so she could go have coffee with friends, When she came back she was curious why I had it set to AC…I smiled and said, in about 40-50 years you'll understand!

At the gym I never swam in the heated pool, just the unheated one.

I drank a lot of ice water, had handy cooling towels when I needed them.

I often slept with the covers off and just a t-shirt and underwear.

In the winter, Sprig and Fall I would often just go out on the deck when a hot flash came on. Winter became my new favorite season.

Some things I didn't do.

I never went the medical route, weighted the SEs of those drugs versus the hot flashes…

I simply could not give up alcohol or coffee though I did cut back on spicy foods.

It took about six months after the Lupron cleared my system before the hot flashes went away.

I can't remember how long after the first shot the hot flashes started but it was within the first 30-60 for sure and continuous after that.

Kevin

Tue, Jan 28 9:02am · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

Some things to consider:

You may want to go to the MSKCC and use their online tool to calculate PSADT and PSAV. This will give you a clinical data point on the aggressiveness of your PCa.

Next decision, imaging…the two approved by FDA are the C11 Choline and Aximun. There is also a variety of MRIs. The challenge there is at low PSA such as you have, they may not be able to identify where the recurrence is.

So, what to do..

If the PSADT is greater than 12 months your medical team may be right, wait until the next labs and see if there is any change in the progression that may indicate a change in the rate of the spread.

I understand that generally SRT has greater “success” of progression free survival and overall survival at lower PSA so you could pull the trigger now. If you make that decision then you have to decide what that treatment is…

Not so long ago and sometimes even today the medical community will say radiate the prostate bed only. More and more that option is falling out of clinical practice and being replaced by combined therapy that involves radiation to the prostate bed combined with short term, say six months of ADT. If you go with that combined regimen then you may want to talk with your medical team about including the PLNs, Mayo has data that shows more often than not BCR in your case is already in the PLNs and SRT to the prostate bed only does not work.

I know this because of my personal experience…surgery, BCR, failure of SRT, that was to the prostate bed only, aggressive PCa, GS8, rapid doubling and velocity times. When I finally had the C11 Choline scan at Mayo it showed the PCa was in four PLNs, fortunately no organs or bones. I finished a combined regimen of six cycles of taxotere, 18 months of Lupron and 25 radiation treatments in May 18. PSA has been undetectable since.

The jury is out but generally advanced PCa is considered as incurable. So, now you manage it as a chronic disease, treat, look for PFS, monitor, treat, repeat..,

Kevin

Sat, Jan 25 3:29pm · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

I live in Kansas City, had my surgery in March 2014 at age 58, and SRT in March 2016 after the SRT failed I went to Mayo for the C11 Choline scan and consult with Dr. Kwon at Rochester in January 2017.

The scan found four pelvic lymph nodes involved but no organs or bones.

We agreed to do six cycles of taxotere, 18-24 months of Lupron and 25 more radiation treatments.

I did all my treatments back in KC, returning to Mayo every 3-4 months for a C11 Choline scan and urology consult.

I had full confidence in my radiologist here in KC, latest equipment, top notch radiology team and a willingness to work with me and Mayo on the treatment plan. She built a 3D model, consulted with Mayo on the treatment fields, boosts to the four sites, treatment margins and total dosage.

That may be an option for you, a local radiologist working in concert with Mayo to develop and execute a treatment plan.

Mon, Jan 13 8:24am · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

Your oncologist is technically correct, eventually..The question is when…?

It may be helpful to this group if you add your clinical history, diagnosis – is this a recurrence or were you diagnosed with metastatic disease – was it in lymph n nodes only, is it in your bones, organs…, Gleason Score, PSA doubling and velocity times, when you started treatment, your age, overall health status…

I would consider reading the NCCN PCa patient guidelines. Those will give you a starting point on what the urology, radiation and oncology communities agree as to the standard of care for PCa.

Do some research on intermittent ADT, if it is something you and your medical team is an option for you, that may extend the time to resistance to ADT.

The way ahead depends on the progression and clinical data associated with your specific PCa – is it high risk, GS 8 or above, are your PSA doubling and velocity times fast, how long have you been on ADT, how ow is your T while on ADT, less than 20 is best…

There may be a number of treatment choices ahead and you and your medical team will have to decide, Provenge, Xtandi, Taxotere, Jetvana, Radium 223.

Your posts indicates your PCa is under control, try and relax, live, do your research, talk with your medical team. There are so many new and emerging treatments that PCa may become like diabetes and AIDS, a chronic disease that is managed through combination therapies that are constantly updating.

Here's one link:

https://pcnrv.blogspot.com/2019/12/optimal-chemohormonal-sequencing-for.html

Here's another:

https://www.nccn.org/patients/guidelines/content/PDF/prostate-patient.pdf

Kevin