Long term chemo success stories

[wilcoxsaw]

I've asked this before with no success stories reported back by patients, but are there any patients on this forum that have experienced a durable remission following chemo? ( specifically a greatly lowered psa that remained low for 12 plus months) If yes, for how long?

[Tall_Allen]

In the Stampede trial of docetaxel, median failure-free survival for those taking docetaxel for mHSPC was about 3 years.

[dockam]

I had 15 Taxotere chemo sessions in 2015 and went from 840.2 PSA to a nadir of 0.1 for 3 months in 2017. Stopped ADT and let T rise to get QoL back. Restarted ADT in 12/18 and now weighing options as PSA back up to 9.1.

My best to you

Fight on

Randy

[GP24]

It depends on the situation. If you are castration-resistant and failed Zytiga and Xtandi, the chemo will not work for over a year. If you are still hormone-sensitive its different. I know a patient who was diagnosed with lung mets. The chemo destroyed these and he is now treated with ADT only for two years following chemo.

[Doggedness in reply to GP24]

Do you know why the chemotherapy won’t work if Zytiga and Xtandi stop working? This is the first I have heard of this. We are currently on Zytiga.

[GP24 in reply to Doggedness]

I did not write it does not work: "... the chemo will not work for over a year" This means the duration while it works is shorter than when the chemo is used while the patient is hormone-sensitive. This has been observed in trials.

[Doggedness in reply to GP24]

Oh! Sorry... being clear is not my strength! Let me try again...

So, if someone found that ADT no longer worked (PSA started to rise again), then they went on Zytiga and Xtandi and both of these also stopped working, are you saying that they would have to wait over a year before attempting chemotherapy because it would take that long to be effective? Do you know why the chemotherapy will not work for over a year if Zytiga and Xtandi fail? I'd be keen to read the studies. I feel like I have so much to learn.

[George71 in reply to Doggedness]

I think what GP24 was saying is -- Chemo will have its effect immediately -- but will work for a shorter time period (one year) once cancer becomes (castrate resistant) CRPCa .

[GP24 in reply to Doggedness]

This is right George. Shorter than a year was estimated for the period until further treatment, in addition to ADT continued after Docetaxel, would become necessary; this is what I meant with "work". The time for overall survival is longer than a year.

[SeosamhM]

Echoing Tall_Allen, my personal experience has followed the CHAARTED study fairly closely. Here's the NIH excerpt regarding this study:

"The regimen of docetaxel plus ADT was beneficial in all subgroups analyzed. Median time to clinical progression was greater in the docetaxel plus ADT arm than in the ADT-only arm [32.7 versus 19.8 months, respectively; HR: 0.49; 95% CI (0.37, 0.65); p < 0.0001]. Similarly, the median time to CRPC was higher in the docetaxel plus ADT arm [20.7 versus 14.7 months in the ADT-alone arm; HR: 0.56; 95% CI (0.44, 0.70); p < 0.0001]. In addition, all secondary endpoints were significantly improved in the docetaxel-containing arm compared with hormone therapy alone. The percentage of patients with a serum prostate-specific antigen (PSA) level <0.2 ng/ml at 6 and 12 months in the docetaxel-containing arm (27.5 and 22.7%, respectively) was higher than for the ADT-alone arm (14 and 11.7%, respectively). Median time to castrate resistance (20.7 versus 14.7 months) and median time to clinical progression (defined as symptomatic or radiological progression; 32.7 versus 19.8 months, respectively) were longer in the experimental arm when compared with the control arm (HR: 0.49; p < 0.0001)."

And here is the full article link: ncbi.nlm.nih.gov/pmc/articl...

Diagnosed in August 2016 and completing my chemo rounds by February 2017, I got a full 2 years after finishing docetaxel before my RO and I called my cancer castrate-resistant in February 2019 with a rising PSA of 0.76 - up from a nadir of 0.09 in October 2017. I added Zytiga to my Lupron in March 2019. My November 2019 PSA was 0.28 with NaF scans revealing no radiographic progression (the ultimate arbiter in all of this)...~3 years and 3 months post-diagnosis now and still grinding.

Simply put...chemo works, but not for everyone. Reading the statistics, it worked for me. Hurrah for beating the mean, I guess.

By the by, we don't usually use the term "remission".... it's too emotionally tough in the longer term when there are the inevitable indications that this thing is attempting to renew its activity in earnest (e.g., rising PSA , a new shadow on the scans, etc.). Never giving up implies that one understands that the war is never over.

[donits]

Hi Wilcoxsaw,

I know about a patient who started with a psa level of over 3500. It was many years ago and now he is healthy. I know all the details but I can send only by email.

[Zetabow]

PSA 1386 and Mets to every bone with extensive damage to Marrow in both Femurs, causing a lot of pain from day one. The combined Chemo and ADT worked well, finished in May and PSA has remained at a steady 0.028 since, Oncologist expects 9 months at least before other treatments might be required (assume chemo again), at moment just monitoring.

Also I did the subcapsular orchiectomy a few weeks ago on his suggestion, the ADT giving me brutal hot flushes 15 times a day.

I'm not sure what my options might be once chemo stops working, being so spread and advanced already, keeping fingers crossed that nothing changes for a little while. Oncologist estimated 44 months, it all depends on luck, could be much longer as I responded so well to Chemo, way better than he thought.

I really have no idea what to expect after Chemo stops working or the time scales. On the up side, at least the pain will stop, I don't feel like my quality of life is very good, I only keep fighting because of my boys.

I have appointment with the pain specialist tomorrow, apart from constant leg pain I've started waking in the early hours with really intense and deep bone pain and it's very difficult to move my legs, it's a little disturbing as I feel like I'll wake up one day and not be able to move again.

[tom67inMA in reply to Zetabow]

Did the orchiectomy help with the hot flashes? Or is it too soon to tell? During the late summer months mine were becoming quite bothersome but have improved recently.

Have you considered asking for Abiraterone now, instead of waiting? I was skeptical when my oncologist suggested it, as who wants even more side effects, but my experience is that it finally knocked my PSA down to <0.01 and it feels like my body is healing and getting better each month.

I remember waking up with leg pain before diagnosis. It wasn't any fun (understatement), and I try not to imagine how I'd feel if it was getting worse. Hope you can find a solution!

[Zetabow in reply to tom67inMA]

Too early to know as had my last ADT injection 14th Nov, so probably wont notice until start of Feb.

[Zetabow in reply to tom67inMA]

She doubled my pain meds and have to go back this evening for MRI on Hips, Femurs and Spine, she is hoping to find some hot spots for Radiation treatment.

[tom67inMA in reply to Zetabow]

Ugh, no fun, but at least has the potential to relieve pain and kill some cancer in the process. Best of luck!

[Hidden]

Chemo trial in 2004. Essentially the same regime that has become standard for metastatic breast cancer. Taxotere and Adrimyacin plus Ketonozole and Erustimine. Nine infusions of each alternated over a six month period. Stopped Lupron in February 2010. Only medication today is 4 mg of Androgel twice a week to maintain testosterone. I have been undetectable since ten months post trial. Kept T under 5 during the trial. Unfortunately, T is non-existent without the Androgel.

Good luck. Best advice - find an academic medical oncologist in research who really understands how to kill cancer. Caveat- hit it early before metastasis weakens the body and have no co - morbidity to withstand the poison dumped into your body.

I was extremely lucky. I am speaking at a Celebration of a Life for Dr. Robert Amato this week at the McGovern School of Medicine on the vision of a great man as one of his successes.

Gourd Dancer

[tom67inMA in reply to Hidden]

I never get tired of hearing your story. Thanks for sticking around and giving us newbies hope!

[Hidden in reply to tom67inMA]

Thank you Tom. Hope is always a good thing.

GD

[larry_dammit]

I won’t call it remission but after chemo and put on Xtandi plus Xgeva and Elegard shots monthly I am on my 40th month at <0.05 PSA. Does that answer your question. Fighting the monster 🙏🙏

[EdBar]

I had chemo per CHAARTED in the fall of 2015 and my PSA is still undetectable at <.006, I’m also on ADT, take metformin, use estradiol patches and had my prostate debulked using radiation in 2014. So I can’t base my results solely on chemo but it certainly figures into the mix.

Ed

[pakb]

My husband's initial treatment was chemo plus lupron. He was diagnosed August of 2017 with PSA of over 677, gleason 9, mets to hips, spine, lymphs. PSA dropped to 25 with chemo plus lupron. A month after 6 rounds of chemo he started zytiga+prednisone and continued lupron. PSA now at around 8. Slowly moving but steady. He works out, eats plant based plus some fish. He's 52 years old and, except some fatigue, he is still living life as he did before- works, travels, mows, dies everything.

[wilcoxsaw]

Thanks everyone for the input. I appreciate it. Wilcoxsaw

[MateoBeach]

I had docetaxel "off-label"(6 cycles standard dosing) immediately after my primary treatment RA-Prostatectomy when the pathology showed seminal vesicle invasion.

My PSA went to a nadir of 0.04 with no ADT of any kind. It stayed there for two years then began rising. That was about the same time that it took me to feel 100% "normal and fully energetic" again after the chemo.

[j-o-h-n]

Okay wilcoxsaw don't leave us hanging. Give us some info about you. Age, Location, Psa and gleason scores, Location treatment center(s), Treatment(s) to date, Doctor's name(s)? All info is voluntary but it helps us help you and helps "Us Too" <---<<<

Thank You!

Good Luck, Good Health and Good Humor.

J-o-h-n Monday 12/02/2019 6:07 PM EST

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

My pleasure John. Live in CA. Gleason 4+3, 3+3 2012 age 56, psa 8.2. Abdominal CT/ bone scan negative. Advanced imaging PET CT's not available at that time nor many 3t mri's so none done. 45 proton treatments 3-2012, psa nadir 0.5 mid 2015. Fall 2015 psa rising, Ucla's best imaging ( 3T MRI, f18 bone scans) negative. Ucla's genioturinary onc doc recommended ADT. I refused. Took very aggressive approach : c-11 acetate PET CT w/ Dr Almeida in Phoenix May 2016 identified several hot nodes above proton treatment area ( prostate area free of cancer) so I was one of the lucky 5% in the partin tables with mets in lymph system with a Gleason 4/3 at time of diagnosis in 2012. Had Dr Gill at USC Keck Cancer Center using the C-11 as his template remove ALL pelvic and abdominal nodes within template area robotically which was the most aggressive approach I could choose. Psa dropped from 5.4 to 0.5 following the EPLND. 97 nodes removed, all lymphatic tissue and vessels. 21/ 97 nodes had cancer. We knew the C-11 would understage ( as do psma's) and path report verified this. 8 months post surgery psa rose to 1.0. Repeated C-11 Feb 2017. 2 hot nodes located missed by surgery. Began ADT March 2017 ( Lupron and abi ), abi caused liver issues after 6 weeks so remained on Lupron only for 17 months. Had Dr Rossi at Scripps proton hit those 2 nodes with 48 Grey units/ 15 fractions Sept 2017. Ended ADT 8-2018, current psa is 0.130 / T 620. Under care of Tanya Dorff MD at City of Hope every 3 months and consult with Mark Scholz MD every 6 months. Plan going forward,should psa rise, is PSMA scans and continuing to locate and treat aggressively if possible. I am currently on no meds.

My question regarding chemo durable remission was to glean whether or not any others out there had durable, long term remission following taxotere or other chemo's so that, if faced with that decision, I had that info. I'm very well researched, all studies, imaging, options, etc, and am on several national reference lists and have spoken to hundreds of newly diagnosed men since 2012, primarily regarding proton beam and advanced cancer options/imaging.

Studies and research are good, but input from those that have " been there, done that" I find often better.

I appreciate all the input! Hope this helps.

Btw, for those that wonder, I had no long term side effects from either proton treatments, no lymphedema resulting from the EPLND, the EPLND was a brutal surgery and took months to return to normal ( 3 hours@gym daily, very active lifestyle), ADT was very tolerable as long as I worked out and continued weights which I've done for 44 years.

Wilcoxsaw

[j-o-h-n]

Thank you for your quick and detailed response. We need men like you on this forum. Stay with us.... You may wish to copy and paste your Pca bio under your name on your home page for future reference by members. You started working out at 12 years old, for 44 years... now that's an accomplishment to be proud of. I leave you with -

Good Luck, Good Health and Good Humor.

J-o-h-n Monday 12/02/2019 7:33 PM EST

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

Age 20 +44 =64😉, that's where I'm at now!

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

Was 56 when diagnosed, sorry I wasn't clear.

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

My bad........ I'm 25% funny and 85% bad at math.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/02/2019 8:25 PM EST

[Daverunningman]

Yes my psa 0.1 for 4 years after 5 lots of Chemo plus firmagon injection once a month