Remission!

[tom67inMA]

Had a bone scan, a cystoscopy, and met with the MO this week, and things are massively improved from where they were six months ago. The bone scan is almost normal, with only a few warm spots that mostly correspond to where I still have some lingering pain. The MO was extremely happy, and said the scan doesn't differentiate between cancer activity and bone healing. Blood work has been normal with PSA steady at 0.02. They cystoscopy was clear so no recurrence of bladder cancer at this time (the uro said "cured" three months ago).

After seeing the bone scan, I tentatively asked if this could be described as a partial remission. The MO looked at my PSA and suggested "complete biochemical remission". In either case, I've had a fantastic response to treatment so far. Next up is to get started on Zytiga, then get on with living my new normal life.

There's a few other relatively niggling issues to be dealt with, such as dealing with a root canal that got reinfected while my immune system was offline during chemo. The GP did take pity on me and recommended ColoGuard instead of a colonoscopy. So I get to poop in a box and hope it doesn't indicate a third cancer.

I just started Atorvastatin and am attempting to add Celecoxib (or rather, the GP is attempting to get the insurance company to pay for it), as I do have high cholesterol and both drugs are rumored to have synergistic effects against the cancer.

At the moment, I'm a little uneasy about not having any soft tissue scans to get an update and new baseline on the primary tumor, lymph node, and lungs, but on the other hand it probably wouldn't affect the treatment plan at the moment.

So in summary blood work is just about perfect, scan is much improved, and symptoms are fading. It's time to celebrate for a while, then decide how much effort I want to put into seeking out second opinions and looking for tiny metastases with more sensitive scans. My fantasy is that this could be reduced to oligometastatic disease and the tumors attacked individually.

[jader4]

So happy for you, Tom. Such a wonderful outcome. I hope in a few years this will all just be an old memory having given you new insights on life and a few "funny" stories to tell.

[Magnus1964]

That's what we like to hear. Great results, keep up the good work.

[Dayatatime]

Always nice to hear those words when at the original diagnosis we can only wish for them. Great job and may your results remain for hopefully years to come.

[henukit]

Congratulations with the good response. PSA 0.02 on basic ADT only is impressive nadir.

[tom67inMA in reply to henukit]

It's actually ADT, radiation to a spot on the spine, surgical removal of a metastasis in the bladder (The urologist found and removed two tumors, one primary bladder cancer, the other metastasized prostate), and finally, early Docetaxel. It's been a busy six months!

[PGDuan in reply to tom67inMA]

Congratulations Tom. Enjoy the milestone and make the most of the good news. Wishing you continued success dealing with this monster.

[henukit in reply to tom67inMA]

I see. So the prostate was removed or just the tumor in the bladder? Cause for existing live prostate the 0.02 is low.

[tom67inMA in reply to henukit]

Just the tumor in the bladder. Still have my prostate. Thrilled with my response to treatment.

[Hidden in reply to tom67inMA]

It is good to be happy with improved results . Ar3 you kidding me ? It’s great news . Keep rolling .

[Hidden in reply to tom67inMA]

That’s one heck of a ride . Glad that you’re pulling through . Recover and get strong . Peace .

[tom67inMA]

I couldn't find an exact medical definition of "remission". Most were some variation of "reduction in cancer". The one that sounds most reasonable to me is this: webmd.com/cancer/remission-....

By that definition, I would qualify as partial remission as the scan was not completely clear.

[whatsinaname in reply to tom67inMA]

I definitely think you qualify as at least "partial remission". Well done, Tom.

[Daddyishealing in reply to whatsinaname]

I like the term healthy! Healing every day body, mind, and soul. Xoxo blessings to everyone here for many healing days

[Lyubov in reply to tom67inMA]

My understanding is that the term "no evidence of disease" (NED) is replacing "in remission."

[tom67inMA in reply to Lyubov]

I wouldn't describe myself as NED, as the bone scan wasn't perfectly clear and I still have lingering symptoms.

I do find myself struggling with how to quickly describe my current condition to friends and family in terms they will likely understand. They really want to hear "cured", and I really want to avoid using that word and anything that sounds like it.

"Remission" and "recurrence" seem to me like a nice pair of terms for significant reductions and increases in the state of the disease. In the series "Breaking Bad", I believe they said Walt was in remission after an 80% reduction of his tumor size.

Just trying to figure this all out as I go along. Too bad they don't teach "how to have cancer" classes in school. Very happy to be in a position where I'm debating about how to best describe significant improvements

[Lyubov in reply to tom67inMA]

You're absolutely right, Tom! My hubby's in remission now too. I myself am scheduled for major lung surgery -- 3 nodules in my right lung -- so, I too will be dealing with how to say what to family & friends. Continue to not let "IT" beat you down! All best wishes!

[tom67inMA in reply to Lyubov]

Good luck on your surgery and hope you have a speedy recovery!

[Lyubov in reply to tom67inMA]

Thanks!

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

Did you consider Keytruda for your lung nodules? Working for me with my lung melanoma. Ask your doctor.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/04/2019 12:43 PM DST

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

At this point they still haven't been able to confirm by biopsy. There are 3 nodules in my right lung. One is small but new & lit up very high on the pet/ct. That's mid lobe, will do wedge-section to get tissue to biopsy immediately. If malignant, will remove. The two in the upper lobe are larger (in fact, doubled in size in the three years between CT scans - long story), lower mobility but one especially suspicious. They two must be biopsied & will be immediately. If not cancerous, that's that. If malignant will try to excise. Should that fail, upper lobe would be removed. Thoracic surgeon consulted with his 11 colleagues (oncs, radiology oncs, etc., etc.,) at their weekly conference & all concurred. It makes sense to me & hubby to go this route. Even though I quit over 20 years ago, I'd been a heavy smoker for more than 20 years!

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

Ok.... just look up Keytruda in the meantime......working for Prez Carter.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/04/2019 1:11 PM DST

[NPfisherman]

Congratulations and best of luck for future testing....

Fish

[JamesAtlanta]

Hurray!! Congratulations on a wonderful response! 🌈

James

[Sunlight12]

Congrats on your good news, Tom! Best wishes for your news to keep on getting even better!

In solidarity,

Sunlight

[Hidden]

🥳Celebrate good news . Now you must keep it away ...this stuff shows us appreciation of life ...build on this good start ... I also had two bad teeth during RT . Eat , drink and be merry!

[strummer]

great news!!

[PCaWife]

Congratulations! Thanks for sharing your wonderful news. Hope to post something similar about my husband soon!!!

[tom67inMA in reply to PCaWife]

I look forward to reading your good news!

[GreenStreet]

First post here. Congrats. Great result. Must have been a tough 6 months

[tom67inMA in reply to GreenStreet]

Welcome to the group nobody wants to join! The first month was the toughest, as my worst fears weren't as bad as the news rolling in (not just prostate cancer, but advanced prostate cancer, etc.), and generally with each treatment things got worse before they got better. Once the blood work started showing large improvements things got a lot easier.

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

Greetings Sydney..... Tell us about yourself. age? location? treatments? numbers psa and gleason? treatment location? doctor's names? all voluntary.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/04/2019 12:47 PM DST

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

I am 60. From the UK. Detected in June 15 PSA 14 with Gleason 3+4. Bone scan showed nothing. Had RP September 15. Gleason upgraded to 4+3 and positive margin . Post op PSA was 0.06 and over time and with diet/supplements went to 0.03 before gradually going up to 0.06. Got talked into SRT completed April 18 and I had to push for 6 months HT last 3 months Zoladex injection Jan 18. PSA went to less than 0.01 in July 18 but recorded at 0.02 in March 19 so does not seem to have been successful. Next test in June and then I have to work out what to do.

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

Thank you for your reply. FYI

Sydney Hughes Greenstreet was a British actor. While he did not work in films until the age of 61, he had a run of significant motion pictures in a Hollywood career lasting nearly a decade.

Born: December 27, 1879, Sandwich, United Kingdom

Died: January 18, 1954, Hollywood, Los Angeles, CA

It looks like you're just doing fine... 0.01 to 0.02 is like a RCH.... (Red xxxx Hair). Just take it easy, enjoy your life and try too laugh.

Good Idea to add your data to your bio area on your home page.

P.S. Keep on Posting...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/04/2019 9:17 PM DST

[lincolnj8]

Great news. So happy for you.

Lincolnj8

[Godschild62]

Congratulations! This is music to my years. I'm so happy for you. God bless!

[Rondief]

That is AWESOME! Woot Woot!

[leo2634]

Great news God Bless.

[Litlerny]

It doesn’t matter what you call it (my M.O. calls mine “stable”), it’s still great news! Keep it up, and keep the positive vibes going. Blessings to you. 🙏😎

I’m in the middle of a 🦷 root canal, too. The fun never ends. 😬

[pilot52]

I would do a loop for you but FAA just yanked my medical for being on Xtandi! so I will try a back flip off of my dock !!! Blue Skies Sky King

[tom67inMA in reply to pilot52]

Sorry to hear about losing your medical! The only constant with PCa is change. I've been in and out of model airplanes over the years. Still have a basement full of models but the FAA is mucking with the hobby as the rules and registration requirements keep changing. Between that and my radios being obsolete, it looks like my models won't be looping any time soon either.

[monte1111 in reply to pilot52]

I just can't hardly believe that! Are we all going to lose our driver's licenses? I still sit here stunned. Having your life yanked apart is a real bitch. Hope you can find a way around their idiocy. Appeal, appeal, appeal. Good luck.

[pilot52 in reply to monte1111]

I can drive a 56k lbs RV down the road...I have two letters from Duke and MD Anderson....they are not interested ...it is on the no fly list...My AME was useless and he is a major examiner for Delta in Atlanta...would not even get on the phone....just pass it along...No fly list....Zytiga is approved by the FAA, but my treating feel it is not as effective for me...Still looking at options....thanks for your concern...Blue Skies...

[Kevinski65]

You must be from Massachusetts... I'm from NH. Has your urologist handled everything so far? Sounds like a good doctor. Hope it keeps up.

[tom67inMA in reply to Kevinski65]

Yes, I'm in MA about five miles from the NH border, and just a stones throw from Nashua. My urologist has been handling the bladder cancer. The prostate cancer has been handed off to an MO who seems quite up to date with the latest studies. The only knock against my MO is that he's not a specialist in prostate cancer.

[jedgar1 in reply to tom67inMA]

Just curios why didn't you go to Dana-Farber?

[tom67inMA in reply to jedgar1]

I really dislike going into the city and was thinking I most likely had prostatitis. Just about any doctor can prescribe antibiotics so no need to be especially choosy. Of course, that all changed when my PSA test came back.

For what it's worth, I know a couple other guys who had similar symptoms around the same time. One was prostatitis, the other is thought to have a weak blood vessel. Lucky me was the only one who had cancer.

[jedgar1 in reply to tom67inMA]

I go to DF from Florida I had RP in 15' radiation in 16 and after my psa went up again my MO at UF just wanted to just put me on Lupron and said I had maybe 10 years I started to look elsewhere.I sent my stuff to SK in NY and DF

to apply for a drug trial, they both had the same trials.

I wanted to treat this as aggresivley as possible and they put me on Zytiga Lupron and predisone for 2 years a year ago last Feb.

I have been T and PSA undetectable since last Sept and go again the end of this month, finger crossed.

I guess that as good as UF was I wanted a hospital that only did cancer and was a research hospital. I have Medicare and an F plan and except for my plane and hotel bills I haver been billed a penny.

[tom67inMA in reply to jedgar1]

Sounds like you weren't happy with UF, so going somewhere else makes sense. I'm happy with my MO and don't feel an urgent need for a second opinion.

I compare my treatments to what other men with similar diagnoses are getting (as discussed here on the forum) and have found that my MO is up to date with the latest standard of care. He might actually be a bit in front of it, as early chemo followed by early Zytiga is being studied in the peace-1 trial and the results aren't out quite yet.

[Daddyishealing]

Congratulations enjoy your healing. Tyfs the good news...breath of fresh hope. Ty

[tom67inMA]

A bit of a shame, as words generally work better when people agree on their definition. At least we agree that remission isn't a processed meat

[Kaliber in reply to tom67inMA]

Yayahaha good one . Well ...... dunno about you but myself I feel a LOT like chemically washed processed meat. ( with some of the special parts , jiblets, gone. ) yayahaha

[SeosamhM]

This was a great read.... much like a coach’s recap after a big win in sports! “.....guys played hard out there today and had guts to come back like they did after being down so much early...Yah, great win, but we’re hoping that adding Zytiga to the lineup mid season will really make the difference and make this a winning franchise for a long time to come...Yes, we are in negotiations to acquire Celecoxib, but I really can’t say more than that at this time...we’re just going to enjoy this win while we can and get ready for the next game....thanks for coming out....”......

Congrats, Tom. - Joe M

[tom67inMA in reply to SeosamhM]

Hahaha! OMG that is so great! Do you mind if I work that into my next blog post?

[SeosamhM in reply to tom67inMA]

Absolutely - this is your time, brother!

[tom67inMA in reply to SeosamhM]

Here's the result: tominmotion.blogspot.com/20...

[SeosamhM in reply to tom67inMA]

That's a work of art, Tom! I was grinning the entire time I was reading it! I'll be following! I'm jealous that you run...keep on trucking, brother. - Joe M.

[Lyubov]

What great news! Enjoy & may you continue to have "no evidence of disease" (NED).

[Pierreb]

Happy to hear this news!!! Sounds like positive news to me! Glad to hear.

[dadzone43]

Celebrate!

[j-o-h-n]

Great news. Keep up the good work and get yourself out of that chusettes state ASAP.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/04/2019 12:50 PM DST

[nobaday]

Hey

Bit of a shock to me with dx at 55. U younger.

So now your PSA down. I went down to undetectable on Zytiga/ prednisone and able to play all the sports I want.. soccer and skiing and hiking. I have found Zytiga great with no significant side effects. So as u say, get out and enjoy life while u can!!!!

[Hidden]

Good news. Several comments. <7.0 T is where you want to be. My research MO wanted me at <5.0. He said when dealing with PCa, forget the <50.0 mark. Really that is designed for men without PCa. Stay on your Lupron until which time as your MO suggests otherwise, not through your begging though.... Six years after my chemo-hormone trial in 2004, my guy suggested stopping hormone injections as he could not find any cancer in my body. So I stopped in February 2010. A year later in an effort to bring back T - you really will feel better- he had me go on Androgel, 4 mg twice a week. I hope that you are able to do this if T does not come back on it own. My never did...... I am still with a PSA of <0.1 and now a T of about 650. If I stop the T supplement, my T goes back to about 30 in two a month.

I imagine his words biochemical remission are right now. Next goal is PCa remission and clean scans. Then the biggie, I can no longer find cancer in your body. Very big words that very few will ever hear. Until then keep kicking the bastard.

GD

[tom67inMA in reply to Hidden]

Thanks for the advice! I did pester my MO to test my testosterone, and it came back <7, which may or may not also be <5, we just don't know. It does seem that I am doubly lucky in that my T dropped very low on Lupron, and my cancer is very hormone sensitive.

At the moment I'm tolerating the Lupron well, and it seems most of the treatment effects I was complaining about were due to the chemotherapy and radiation. Since my T is already very low, I expect adding Zytiga won't make the fatigue dramatically worse. If the insurance picks up the tab and side effects are tolerable, I won't feel as great a need to take a treatment vacation, except...

... I do worry about the long term effects of the Prednisone that is used with the Zytiga, and generally have heard that being on ADT for more than 18-24 months usually means the loss of the ability to produce testosterone naturally.

Yes, the next goal is complete remission / no evidence of disease. Not sure how hard my MO will go looking for disease beyond blood tests and bone scans. I also have the words "intraductal carcinoma" in my biopsy report, so that makes me worried that watching PSA levels may not be enough. Thinking now might be a good time to seek out a second opinion. It probably won't make any difference in my treatment right now, but it might give me more options to fight the beast if it suddenly comes back.

[RCOG2000]

Great news. Goid luck

[MJCA]

Congrats!! Best of luck.

[savingdaddy]

Awesome news! I hope that the good news just keeps rolling in! Best of wishes! Kimberly

[redbank]

dude that is awesome !!!!!!

[Kevinski65]

Do u think at 5 you can stop treatment? I'm 7 years out

[GeorgeGlass]

You had bladder cancer too? Was that caused by radiation treatment in the prostate area? How did they treat the bladder cancer?

[tom67inMA in reply to GeorgeGlass]

The bladder cancer was discovered before any prostate treatment was started, excepting an Eligard shot a few days prior. My dad had bladder cancer and I had blood in urine, so the urologist wanted to check the bladder just to be sure.

Treatment was "trans-urethral resection of bladder tumor", or TURBT. It involves going up the urethra with very tiny surgical tools and scraping the tumor away. On the positive side, there are no incisions. On the negative side, OH MY GAWD THEY GO IN THROUGH THE PENIS! Thankfully it's done under general anesthesia.

[GeorgeGlass in reply to tom67inMA]

Wow. Im glad it went well!

[Hidden]

Good news!

Best to you & the Sox!!

[monte1111]

Sounds like great news. Plus you get to poop in a box. What more could you possibly ask for? Enjoy.

[Tommyj2]

After spending time on this site I'd be hesitant to even USE the term remission as much as "minimal evidence of disease at present" and go with Nalacrats reserving remission for more than a few years out. That is NOT to suggest that there is no cause for celebration!!!!... Good news is good news and I, along with everyone else here I'm sure, hopes that the news is the same or better with each successive scan and blood test....

[tom67inMA in reply to Tommyj2]

Yeah, I'm beginning to agree, though I wish there was a definitive online medical dictionary to refer to, otherwise how am I supposed to know? Anyhow, after my brief exchange with SeosamhM above, I've decided "winning" and "losing" are better terms for quickly conveying how the battle is going.

[gamemaster34]

Congratulations!!!!!!! Looks like your on the right path.

[Tub111]

Congratulations!!! Keep it up!

Sheri (cheerleader for you all now)

[Bebby1]

Everyday we wake and live

We are in remission

Best of luck