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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.


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..,


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:

Here's another:


Dec 3, 2019 · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

I live here in Kansas City and have a radiologist, urologist and oncologist on my medical team who are quite competent. I went to Mayo for two reasons, I liked Dr. Kwon’s approach to treating PCa and they had the C11 Choline scan.

After the initial scan and consult in Jan 17 all treatment has been done here in Kansas City by my medical team – the Lupron shots, taxotere and the 25 more IMRT treatments. My radiologist did consult with my Mayo radiologist about the dosage, margins, boosts to the identified lymph nodes, treatment field…

I did return to Mayo three more times for subsequent C11 Choline scans and consults. Since I finished my last Lupron shot in May 18 all my urology labs and consults have been done here in KC. I updated my Mayo team through the portal and my medical team has also followed up with Mayo.

It’s your decision, depends on what your local medical team has in terms of medical technology, their approach to treatment and willingness to work with other medical experts as a team to develop and implement the best possible treatment specific to the clinical data associated with your PCa and your preferences as you balance quality and quantity of life.

I am blessed by a group of medical experts from a variety of practices and institutions who work together, leaving their egos out of the decisions.


Oct 19, 2019 · Excercise After Prostatectomy in Prostate Cancer

My experience going through treatment which includes surgery, radiation, ADT and chemotherapy that exercise is perhaps the most effective way to mitigate the SEs. That being said I don't think it mitigated the hot flashes or the joint and muscle stiffness but I kept my weight under control, my cardiovascular health and had no issues with glucose, cholesterol, becoming pre-diabetic…So, do what you can, I swam, lifted weights, used the elliptical, walked the dog, played basketball, rode my bike, went skiing, hiked in the mountains.

Aug 17, 2019 · Is Penile lymphedema a side effect of localized radiation? in Cancer

I have two separate radiation treatment, SRT which involved 39 IMRT treatments to the prostate bed, 70.2 Gya and 25 IMRT to the pelvic lymph nodes, 45 Gya. I did not experience the SEs you describe for your husband

Jul 8, 2019 · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

The C11 Choline and Axumin scans are both FDA approved for recurrent PCa, thus they are covered by insurance. Mayo generally accepts you as a patient for their C11 Choline scan when your PSA reaches 1.5. That is higher than most radiology medical specialists will tell you to be successful with SRT to the prostate bed. Most will tell you for SRT to be successful your PSA should only be .3 to .5. That’s the dilemma, the higher the PSA, the greater the probability the scan will locate the recurrence. The Aximun scan does work better at lower PSAs, my radiologist want to scan when my PSA hits .4 using the Aximun scan here in Kansas City

One thing to consider is the experience of the personnel reading the scans. A medical center just starting up their program may not be the same as Mayo in Rochester who has extensive experience with the C11 Choline.

While overseas in Europe and Australia the PMSA scans are in widespread use, here in the US they are in clinical trials. They are definitely better than the C11 Choline and Aximun scans, especially at lower PSA levels.

I had 4 C11 Choline scans at Mayo, it was amazing to sit with my radiologist as she showed me the 3D IMRT treatment plan she built using the images from the C11 Choline scan…think smart versus dumb bombs.

There is no doubt newer imaging can be a factor in determining the treatment plan. It’s not inexpensive, about $1800 out of pocket for each C11 Choline scan. The question I asked and so should you, “will this change the treatment plan if it locates the recurrence…” for me the answer was yes.