New member, my story so far

[tom67inMA]

Hi All, thought I'd introduce myself and share what I've been through recently. As a reference point, back in September of 2017, just before my 50th birthday, I had a routine exam and my PSA level was around 2, just as it had been for a couple years prior. Perfectly normal and healthy, no sign of any disease.

By mid October 2018, my PSA was 216 and a CT scan showed bone lesions, enlarged lymph nodes, and some small spots on the parts of my lung included in the abdominal scan. The urologist immediately did a biopsy and started me on ADT (Eligard) immediately, before getting the biopsy results. The bone lesions matched up with pains that had been developing but I had thought were due overuse injuries and aging.

The biopsy results came back: The right side of my prostate was pretty full of cancer with a Gleason score of 8. The left side was mostly normal, with a small section of Gleason score 6. A cystoscope of the bladder also showed probable bladder cancer, as if the prostate wasn't enough.

October 31st, 2018, what a day. It started off with a consultation with a medical oncologist. I was having a bad flare of pain, and later found out that my PSA on that day was up to 362! After that it was off to the radiation oncologist to start radiation treatment of the vertebrae thought to be causing my back pain. And after that it was off to another part of the hospital to have the bladder tumor surgically removed (trans-urethra procedure under general anesthesia). If that wasn't enough, the hospital sent me home after only having voided a tiny amount of urine. It turned out I had urinary retention and couldn't pee on my own, so off to the emergency room in severe pain (even though I was on an opioid!) to get a catheter after midnight.

The biopsy from the bladder came back with two tumors: One small tumor of bladder cancer that hadn't reached the muscle and was fully removed, and also a small tumor of prostate cancer that had traveled up to the neck of the bladder.

I had 5 days of radiation treatment on the vertebrate. The RO wanted to get it over with quick to "get out of the way" so the MO could start chemotherapy. The radiation didn't provide instant relief, but did seem to cause nausea and loss of appetite. Between that and the surgery I lost 10 lbs in a week. It gets better from here.

I had three weeks "off" after the radiation treatment, during which time I slowly regained my appetite and symptoms subtly improved. At some point I no longer got up in the middle of the night to take more pain meds. It was no longer agony to lean over the sink and spit out my toothpaste. Once free of the catheter I resumed walking and running, and was able to run the Thanksgiving 5K race that I've run every year for the past decade.

This week I started chemotherapy (doxetaxel) along with prednisone. So far the side effects seem to be well controlled. In the blood draw just before starting chemo, my PSA was already down to 1.93! It's coming down faster than it went up, and I don't know how much of that is due to the ADT and how much is due to the radiation.

So that's where I am today. For the short term I'm pretty optimistic that my condition will continue to improve with treatment and I'll be able to be quite active in 2019. Beyond that I start to worry about how fast this could come back, considering how fast it originally developed and how fast it's responding to treatment. I suspect that even among advanced prostate cancer patients I'm a bit of an outlier. My urologist even hinted that he'd never seen PSA go up so much from a normal baseline in only a year.

[Tall_Allen]

What an ordeal! I often say that prostate cancer progresses slowly at first, but your story is the exception that proves the rule. That's an excellent response to chemo.

[tom67inMA in reply to Tall_Allen]

That response is to ADT and a bit of radiation. The chemo will be on top of that.

[gusgold in reply to Tall_Allen]

TA,

Does Provenge work and if it does for how long. The Onco's at the Mayo Clinic do not think it offers much in the way of benefit and one immunologist told me they have a lot of patients where Provenge made the cancer worse

Gus

[Tall_Allen in reply to gusgold]

Three large double-blinded randomized clinical trials prove it extends life, although I acknowledge the methodological issues. I also see the problem in not being able to find a biomarker (like PSA) that helps one decide if it is working for the individual. Lacking biomarkers, it is impossible to conclude it made the cancer better or worse for any individual. No one has the ability to say for that individual what would have happened without it. We can only say that, on the whole, those who used it lived longer than comparable men who didn't.

I think the best way to use it is in conjunction with radiation or chemotherapy because they present large amounts of cancer antigens to the immune system.

Other immunotherapies have so far been disappointing for prostate cancer.

[whatsinaname]

You say your PSA fell from 850 to 0.07, but it took a year to get there. Did your PSA fall continuously for a full year or did it spasmodically fall, rise, fall, rise, fall ??

I ask because I am currently taking chemo with Eligard (similar to Lupron). My PSA has never hit the highs that you guys seem to have achieved but, otoh, my PSA has never gotten below 2.33 thus far.

Thank you very much, Bill68.

[whatsinaname]

Thank you for the reply, Bill68, much obliged.

[whatsinaname]

Btw, what does "proper diet and daily exercise" for you mean ??

Thanks again for any reply.

[j-o-h-n]

See your problem was you turned 50 years old.You should have stopped at 49. "What a revoltin' development this is!" as William Bendix (life of Riley) used to say. So on Halloween you were tricked and treated all in one day. How the Hell could your PSA spike 214 points in one year? Mine spiked from 3 to 4 in one year and Bingo I hit the jackpot. I have a feeling that the lab or your doctor screwed up. I know that it's water over the dam (or under the bridge) but I would be a whirling dervish if I were in shoes. They say kaka happens...Boy oh boy, did it..... I feel your pain.... So

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/08/2018 1:05 AM EST

[tom67inMA in reply to j-o-h-n]

I wish it was a screw up, but my PSA has been tested about 5 times by two doctors and the numbers were 216, 362, 90-ish, 20-ish, and 2-ish. Makes a nice curve, doesn't it? My dad had a PSA of 11 and the biopsy came back negative. Genetically my cells really like making PSA. I also find it odd that the cancer is in my bones before it reached the left side of my prostate. But I've always been an odd duck in most things.

[j-o-h-n]

That's not a bell curve it's a hell curve... "in your bones before your prostate", I find that odd / unbelievable also. Well after all of that, I know that you're on top of the situation and that you'll be around to celebrate your 79th to 80th birthday... Since you've been an odd duck in most things then just remember Donald's favorite saying "My name is Donald Duck and I don't give a flying feather".

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/08/2018 12:22 PM EST

[tom67inMA in reply to j-o-h-n]

Quack quack

[tom67inMA]

I've heard similar advice from others who are doing very well. My question is how hard to push the exercise during chemo? It doesn't feel great right now, and with appetite and digestive issues it's hard to refuel. That said, I just got back from a 2 mile walk in the cold.

[whatsinaname]

Thanks, Bill68. Very interesting indeed. Much obliged.

[mikehike]

Hi Tom I'm new to the group as well. My PSA jumped from 6 to 14 recently within 6 months and thought that was bad. Sorry about how aggressive it's hit you, I'm sure you are in shock. Glad you are responding to treatment.

I was curious about a few things. I've been studying the affect of nutrition on prostate cancer to help me tailor my diet. I've read about a few factors they feel may lead to aggressive prostate cancer. These include :

1) High dairy consumption

2) Extremely low Vitamin D serum levels

3) High cholesterol triglycerides, total and recently even high HDL

4) High IGF-1 Levels

Would any of the above apply to you? Also curious if you take

Fish oil or eat a lot of fatty fish?

I'm one of those really bad patients that self treat.

I've been on a vegan diet to see if it will bring down my PSA for the last 2 months with one more month to go till my next PSA. Read a low fat diet can also be effective.

I'm also taking 4000 IU vitamin D because there have been studies showing that slows prostate growth of the primary tumor. Another thing I doing is eating broccoli sprouts which contain sulforaphane. There was a study done showing it delays the PSA doubling time.

I'm battling what I think is a primary tumor though. Metastasis may react differently. I think what you would be worried about would be androgen resistant prostate cancer?; which I think would be a different animal as well. It's completely possible that something may work against the primary tumor but promote metastasis or androgen resistant prostate cancer.

Has your doctor mentioned statins? Prostate tumors feed off cholesterol and lipids. Statins have been shown to be effective against some forms of prostate cancer. Doctors I don't think usually prescribe them because of possible side effects. Maybe a good reason.

Anyway, welcome! and hope your health stays good!

[tom67inMA in reply to mikehike]

High dairy consumption and high cholesterol apply to me. Had a root canal this spring and that led to missing a routine blood test and followup. As a result I'm currently off my statin and missed an opportunity to catch the PSA rise before symptoms, maybe. I don't enjoy going to the doctor and avoid it whenever possible. The cancer struck at exactly the worst time.

I am trying to cut down on dairy and sugar, but that makes it hard to maintain weight. On the other hand I was not overweight and ran multiple days a week. My GP is good at watching my vit D levels.

I just feel like a beginner patient with an advanced disease.

[mikehike in reply to tom67inMA]

No one knows what diet slows pca, it's all a best guess. Researchers THINK exercise is one of the best things you can do and you are doing that. You were dealt bad cards and likely what ever you did you would have ended up in the same spot. You are giving it a good fight and respect that! Never give up!

[Hidden]

APC is hell. I like your optimism though..Don’t hinge too much on your Uro’s hints.. What you want him to be saying next is you’re cured! We all hope for a cure. I admire your resolve.. I almost bought the farm initially with APC . Then within 9 months came up no visable signs.. My life has been destroyed in almost every way. I just might decide to take a long walk on a short pier When this “ Maneater” decides to come back to have me for lunch with a little fave bean on the side.. It is difficult to fathom the suffering total on this web-cite..my complaints are faint in comparison to most. With a flip of a coin anything can happen to any of us at anytime once we’ve entered the APC ZONE.. Wish you well with chemo and recovery. Peace

[paulofaus]

Hey Tom, My story is similar to yours. I was also born in 67. I was diagnosed April 2016, Gleason 10, with multiple bone mets. I've been through ADT (Zoladex), cryotherapy (failed) chemo (Docetaxel-failed) radiation to spinal and femur mets (successful) and radiation (cyberknife) to prostate, which so far has been successful in shrinking my very painful prostate and removing the pain. My cancer has changed to 'small-cell' and I've been through 4 months of new chemo (Cisplatin/etoposide and now Cabazitaxel). Still working full-time and fighting hard! Cheers Paul from Perth.

[tom67inMA in reply to paulofaus]

I've been on leave from work since my diagnosis, and amazed that some work through treatment. Keep up the good fight!

[Hidden in reply to tom67inMA]

I’m the same as you and I agree..

[Hidden in reply to paulofaus]

You are one tuff cookie.... inspiring ... I salute you ...