Hi all, posting to get some advice from this very knowledgeable community, again and share some good news. I was diagnosed with stage IV APC in Sept 2019 with extensive spread to the lymph nodes. I have been on Lupron, Zythiga, and Prednisone since then. From Oct 2019, my PSA has gone from 42 to less than 0.1 (last week). Here is a summary of the latest CT scan from my doc -
"Hi Mr. B,
Scan looks terrific. No evidence of disease in the bones or the lymph nodes, which is great news. The reason that the prostate wasn't specifically commented on, was because I asked for this scan to be focused on your pancreas since we had seen something questionable on an earlier PET scan of yours. And the pancreas looks good.
So it is all good news! I hope you enjoy the weekend.
Best,
Rohit Bose MD PhD
Genitourinary Medical Oncology"
My previous scan from Jan 2020 said -
"Lymph nodes/vessels/Mesentery: No lymphadenopathy by size criterion. Previous RIGHT inguinal adenopathy now measures normal in size at 7 mm, see image 80 of series 3,
previously up to about 12 mm in short axis. Additionally, the extensive bilateral pelvic sidewall adenopathy has also normalized, for example on the right now measuring at
most about 7 mm on image 67 of series 3, previously 24 mm in thickness, and in the LEFT pelvic sidewall measuring up to 8 mm in short axis on image 68, previously up to 21
mm.
Pelvis: Previously heterogeneous and markedly enlarged prostate gland with infiltrative involvement of the urinary bladder has normalized in size and markedly decreased and
heterogeneity."
I know it is good news but how good? Does this mean the ADT is working but I have to do that forever (or until it keeps working)? I have a scheduled procedure on 16th June, to place markers in my prostate for radiation. Is that still needed? The plan was to do radiation for 5.5 weeks to my prostate and lymph nodes.
Is it all medicines only, I did make a lot of lifestyle changes too - diet, exercise, attitude ... some supplements. I am sure that played a part too. I am convinced my disease came from having a lot of hardship in the past 3-4 years, too much, bad, happened altogether.
So my question is, is all this expected improvement with my treatment? Is there hope that I can ever get off the treatment, would love to get some T back
Regards.
B
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barrybayarea
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That's a fantastic response to your ADT treatment. May you have a long remission..You could talk to your doctor about a "ADT vacation" where the ADT drugs are stopped for a while and your testosterone is allowed to recover..Your PSA will be closely monitored during this "Vacation" to determine the point where the vacation is over..
You got a great response from your hormone therapy so far. Your inguinal lymph node suggests that the cancer has traveled outside of the prostate drainage area, so it probably is not curable. The radiation to your prostate, pelvic lymph nodes, and the inguinal one may slow progression. The hormone therapy helps the radiation work better, so you have to commit to continuous hormone therapy for 2-3 years. After that, you can discuss taking a vacation.
Congrats Barry. Be thankful and live life with love. I hope that you you can stay in the undetectable zone for many years. Great job. Adt can work.🙏
You have already completed your 9 months induction period with ADT and have achieved a PSA Nadir of 0.1. Excellent.
You are eligible for Intermittent ADT because longer you stay on continuous ADT..bigger gets your risk of early castration resistance and your T might never return.
9 months with 0.1 PSA...perfect time to start your vacation with close monitoring when you are vacationing.
But yes that is my concern too that if I am on ADT too long, will my T ever come back? I am working hard to fight this thing so that at stage I can get my T back to normal, it would suck going through the rest of life with it, I am only 55!
That’s a concern . But pushing the APC away is more important to me than T. This is just me. I’ve had no t for five years now . Did orchiectomy in 2017 so no more t for me . It s a bitch with many side effects of weakness . But I’m still alive and kicking . I grew in Marin County . Peace to you Berry and to the Bay Area ✌️
Nadir PSA does not mean it should be for many months. Its the lowest level of PSA ..,just a point..which one achieves in the first year of ADT.
My 9 month mention is about INDUCTION period...which starts from day of first lupron inj till when you achieve an excellent Nadir PSA like 0.1.
Now many researchers are saying that if an excellent Nadir PSA (like yours) is achieved then, its OK to stop ADT and go for first off period (vacation) with sharp monitoring of markers, symptoms etc. Once an agreed upon set point, like PSA 4.0 is reached, re-start lupron and get back into on period until your 0.1 Nadir is reached again. You can repeat these cycles number of times and that keeps your cancer androgen sensitive for longer time. Eventually..say after 10-12 years ,it may still change to androgen independent type albeit very slowly.
Thank you so much for that explanation, it makes sense to me but I am biased I just want off the drugs, if it is somewhat safe. I have always beleived in quality vs quantity. You mentioned that "Now many researchers ..." do you offhand remember where you read some of this, I would love to read more about the newer trends.
Once again let me say this ....The longer you go continuously on ADT without break..the chances of your T coming back keeps dwindling down.
Its like if you keep machines in a factory closed for years..they get rusted and can not function again...Leydig cells of testicles are those tiny factories which churn out T.
A prime example is our friend, guard dancer on this forum, sadly his T never came back .
I broke down a bit during quarantine and started eating pizza ( extra cheese) rich Mexi take out and buds cajun plus and ice cream Got my blood work back with 243 Cholesterol .. I’ve backed of it all .. once in awhile almost anything is ok . Have a scoop with the Kid!😎
The effect of ADT + Zytiga will slow down growth of Pca and you may think everything is fine, but in many cases including myself, sooner or later the Pca will find a way to grow despite the drugs you are taking and my Psa has been up and down like a yo-yo since diagnosis with a Gleason 9 and Psa of 6 at age 62 in 2009.
The ADT and Zytiga are just not known to give any man a cure or remission, they just hold down the speed of Pca growth and I had PsMa Ga68 scans that showed far more met details than any CT scan. If I had not had Lu177 in 2019, when Psa was 25 at start of 4 infusions, I'd being in palliative care core now. The Psa went to 0.32 a year after I began Lu177 in Nov 2018, but now after 18 months its 11, rising fast. I will maybe have more Lu177. Chemo had failed before getting Lu177.
Research is going on now to find out why cancer so often finds a way to mutate to oppose whatever drugs are used to suppress it, or kill it, but I heard today on radio that cancer mutates in response to all treatments, and whatever mutant version of the cancer then continues to grow and often re-populate former met areas and then become more resistant to anything doctors have to treat it. This is often why 30% of men diagnosed will die from effects of Pca and its treatment. But research can take years to become reliable therapy to extend a man's life time.
Right now, maybe you can ignore the Pca for awhile, and just wait for Psa to rise. Once it gets to about 2 to 10, you should have PsMa scans, but at present, your Pca is hiding or asleep. I watched how my mets increased while on Zytiga, even though Psa was kept low.
I tried to have a two "vacations" off ADT and Psa just zoomed up so fast I had to restart ADT on both occasions, and Psa didn't go back down to where it was before the pause of ADT.
You are getting great results in the management of your 'variety ' of PCa.
Unfortunately, you would be premature in pre-judging the outcome(s) and thinking that you will be done with treatment(s) looking forward.
In the less than one year / time-frame that you've presented, you haven't been at 'nadir' for long enough and your current situation is still unresolved because PCa, typically doesn't behave the way you have illustrated, in terms of being 'cured so quickly'.
With all due respect, I would suggest you do some more reading and research, to better grasp where you are, in terms of progression, management and projection as to what you are facing.
You are still in the castrate sensitive part of this journey, which may last for a long time, or morph into a more aggressive version that branches into different genetic / biological directions. Like many of us, there remains some unknown scenarios that 'could' play out.
This is certainly no time to panic - there is reason for some optimism - take the time to better understand the prognosis - education allows for better questions and decision making.
You should have plenty of road ahead of you to (re)adjust to the new realities of surviving this disease.
Thank you so much Ronny for bring me back to reality! I have done some research in the past 9-months and somewhat know the reality. My first meeting with my doc, he said you have 6-months to 15-years, later that changed to 2-years at least. I know Ga9, stage IV is not a good thing. I also know it is not curable. I was just rejoicing my small victory and being hopeful, I will take what I can get I may have got carried away a bit, we all hope for a miracle and think I will be the one. My objective is to stay positive, do what I can, be grateful for today, and hope for the best in the future. I am not afraid to die, I have prepared myself for that eventuality. However, I will not die until I am dead either
With no fear of death you’ve already won the game brother . I fear brutal suffering not death. In death there is mercy . Stay positive . You can do much better than the doctors say . We have men here that have lived way beyond what they originally were told . Once Advanced ,Prostate cancer ‘s nature is to stay with the host until the end . So we carry this in our back pack.. Anytime good news should be celebrated ....
Barry...I like the way you look at life. Death is the biggest ailment in our life....and death is INCURABLE. We all, I mean all ..man and women..with or without cancer....will have to die...that's the ultimate reality. No treatment can cure us of death.
Its all about buying time...how long you can live...and how much symptom free...is what matters.
If I can live close to average life of an American man...then...for me..PCa has become curable,
I don't expect to live forever...neither should anybody.
Alright barry time for the truth..... put you glasses on and get ready..... here goes so hold your breath..... do not blink.....make your mind a complete blank.... Ready set go..... 1 - 2 - 3...
Take a deep breath and live in appreciation for any reprieve .. congrats !🥳
Question. Did you have a nuclear bone scan to go along with the CT scan? I have had 25 over the years and they were always paired together. One for skeletal, the other fir lymph nodes and organs.... just curious.
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and share some good news. I was diagnosed with stage IV APC in Sept 2019 with extensive spread to the lymph nodes. I have been on Lupron, Zythiga, and Prednisone since then. From Oct 2019, my PSA has gone from 42 to less than 0.1 (last week). Here is a summary of the latest CT scan from my doc -
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