Good Morning All , 5 yrs ago Dx , 4+3 , John hopkins knocked it down to 3+4 . I had SBRT to the prostate , 5 sessions . My nadir was .83 a year later but my PSA was hovering in the 1s for 4 yrs . Then last Dec. it went to 4 . Went to V.A. for Pylarify scan that found 1 node in pelvic area , oligometatastic . I had 3 sessions of SBRT to that node then 25 sessions of IMTR , Tomotherapy . All radiation was done at Illinois Cyberknife , Dr. Erica Hirsch , RO. Started 6 month Eligard Feb. 1/2022 also Zytiga ( 250mg ) on low fat breakfast and (5mg) of prednisone Currently my PSA is .02 and testosterone is , <7. Along with V.A. I use U of Chicago , Dr. Szmulewitz . I asked him yesterday ( video consul ) what would we do if I became castrate resistant today ? He said Chemo . Not what I wanted to hear . Im thinking cant we try some other combinations . Then I told him Im not doing chemo . But that could change down the road . My question is : has anyone refuse to do chemo and what did you do ?
No to Chemo , anyone ?: Good Morning... - Advanced Prostate...
No to Chemo , anyone ?
I have avoided chemo for 30 years. It sounds like you are doing well. Don't limit the eligard or zytiga. I would see how things go.
Yes. I did. I would go for Chemo only after other treatments stop controlling the growth.
How do you know when growth will start? What kind of "early detection" warning is effective? When a tumor is anchored and becomes large enough?
I prefer to sweep swiftly (proactive), and not rely on some aftermath indicator.
"Circulating tumor cells are found in frequencies on the order of 1-10 CTC per mL of whole blood in patients with metastatic disease."
- en.wikipedia.org/wiki/Circu...
"Adults: The average adult weighing 150 to 180 pounds should have about 1.2 to 1.5 gallons of blood in their body. This is about 4,500 to 5,700 mL.
- healthline.com/health/how-m...
DE, There are numerous different ways to find out if any growth is starting ..First monitoring movements of biomarkers such as PSA, PAP (prostatic Acid Phosphatase, ALP (preferably Bone ALP), Calcium level, Hemoglobin, Albumin, Platelet count.If platelet count is rising above upper normal limit, it is a clue of growth.
Then comes scans..such as highly sensitive but less specific Technicium bone scan, CT scan, MRI and KING OF ALL SCANS...Ga68 PET CT.
If your neutrophils are rising and lymphocytes are falling (assuming you do not have infection)..that can be a clue. Some other indicators are declining physical performance, any bone pain in area where you saw bone mets on scans etc.
When PSA rises along with ALP rise..it is almost a certain clue that cancer cells are growing. (exception: those rare aggressive variants whose cells either produce very little PSA or no PSA) In such rare cases, monitoring LDH, Chromogranin A, Synaptophysin and Neuron specific Enolase can provide info if one has aggressive variants or worse Neuroendocrine variant. This info can be very useful in changing and choosing treatments which work for aggressive variants.
In particular, Serum LDH is very underutilized but very useful monitoring test. LDH is an enzyme which reflect if any tissue damage is occuring in the body. So it is not specific to prostate cancer. But if LDH is rising it can be clue that one might have an aggressive variant which is causing tissue damage.
Thank for this. This is exactly what I was looking for and you detailed it beautifuly.
I got chemo treatment (Taxotere) as early as possible from my diagnosis (PSA 1000+). Sure, chemo has notable side effects, but unabated PCa is far worst which conditions can result into organ failures and death.
- sciencedirect.com/science/a...
- Also read about Dr Snuffy Myers, which was diagnosed with PCa
Waiting, timing and/or sequencing treatments based on progression is not a strategy. When a patient is administered chemo, frequent lab tests are taken for alerting side effects.
Agreed. The trials that proved it have resulted in significantly improved time to progression, and overall survival for those who have had the treatment.
Although I am not totally sold on Dr. Myers.
The mind games you are playing with yourself are very destructive. The VA usually offers excellent psychotherapy where you can learn techniques to stop you from doing this. I'm not an expert, but I think they call it "catastrophizing" and Cognitive Behavioral Therapy is usually effective for it.
Not sure to whom or about what you are replying here TA.
Replying to OP.
TA...I will probably get burned at the stake, but this answer is wrong, wrong, wrong...your way or the highway seems to be what you are after...we are all in this together, why not listen and learn from everyone. I may not be as cancer savvy as all of you, but I want my husband to live, I can't think of life with out him....I will give it everything I have, and prey we will be brave enough to make our ow choices!
Are you saying that staying in the present moment is wrong? Ruminating about future "what ifs" is a way of reliving imagined pain over and over - the pain is no less real because you are making it up. Why would you do that to yourself?
TA...stop for a minute, I am saying, telling someone that is trying to make a decision, a life altering decision regarding chemo they need psychotherapy, really!!! Chemo is a lot to ponder and it does not work for everyone. There are ways you can boost your immune system before chemo, give yourself a little time to make that decision, learn from everyone. Jim, stage 4 prostate, spread to bones, one doc saying its a mess in there with tumors...is hanging in there, his skin looks great, he goes to work everyday, mind you not a sit at a desk kind of job, but our fence company of 50 years, god bless him he is out there digging holes and carrying fence with the boys. If I gave you list of the supplements he takes, what I juice for him every day, his home made green tea, no sugar, his vitamin C infusions.... your answer would be....psychotherapy for you! I listen to everyone...Joe Tippins, Jane Mclelland, and all the wonderful people fighting this terrible disease. Chemo is not off the table but on hold for a bit!
Miomararrito- re-read what he wrote. You are getting it all wrong. He is NOT at the point of making a decision. He is just playing "what if" mind games.
Ok TA Thank you, got it!
Allen , I have always been a glass half empty guy . I have not asked my MO at V.A. what she would suggest if I was mCRPC , today . At 1 point having 2 MOs I would stay with the one that I agree with as far as continued treatment. Thanks Allen
I think it is very reasonable to think one step ahead. You are very reasonable person. So what would you do if you become one day far in the future crpc? Maybe genetic testing?
There's nothing wrong with a healthy dose of skepticism, but these counterfactual suppositions only serve to create more anxiety. "What ifs" have no place in rational decision making. You will have plenty of time to make a rational decision later if a treatment decision is needed. Don't borrow tomorrow's sorrow.
I've been here for almost 5 years. Tall_Allen seems to have a handle on things, with good insight and advice IMO.
Don't borrow tomorrow's sorrow.
If you don't mind I would like to coin that myself thanks lol.
My father never uttered colloquialisms. I was in the Navy before I heard two wrongs don't make a right.
Did chemo in 2018, wpikd do it again if necessary.
From your history it appears you have delayed aggressive therapies to this point, including chemo. I’m not saying it’s wrong, no one can. That you are a ‘glass half empty guy’ seems clear. It’s costly but of course it’s your business.
What can be said is when this approach is continued if and when disease returns and begins advancing that often spells trouble.
In the case of chemo, you want to be healthy enough to be able to handle it. Waiting too long raises the risk you won’t be.
Chemo was not nearly as bad as I feared it would be. And it was worth it for the results I got.
I should have refused Chemo because the side effects were brutal. As it turned out. Chemo did not work as my PSA quickly returned to pre Chemo level.Currently on Lu-177.
My advice is to investigate other alternatives.
Chemo does help, how to know it would not in your case. Prostate cancer has a heterogeneous population pool, discovering the reaction to treatments is paramount for further evidence of survival strategies.
So, can you say for certain, that 100% of your prostate cancer population was not affected from Chemo?
Now, your medical treatment is optimized beyond chemo...
The only measure I have is my PSA. In my case it did not come down after completing Chemo.
After multiple previous non-chemo therapies, recently had my 5th round of Jevtana/Carboplatin. Still have my hair. No serious side effects of any consequence. Recent scans reflect this treatment is working, including small lung mets are now gone.
Relax, you are not becoming castrate resistant today, or tomorrow. Dr Hirsch should be your councilor, if it does happen.
I have done chemo and I’m so glad, I did. I was dx 11/2017 with PSA 2.222, no surgery possible. We started ADT and chemo in 12/2017. Tumor shrank significantly and MU changed his mind - surgery 4/2018. Today, after RT twice to single PLN (2020, 2022) I‘m again under iADT since 4 months and PSA is undetectable. No mets on bone scan, CT and PSMA PET. I‘m sure, without chemo you wouldn’t be able to read my text.
Great points, we're in the PSMA PET generation, I'm thankful...
I find it interesting the ways and means that we patients suffer ourselves at times...
You've been on the Good Ship Lollipop for some time now, you've followed SOC and protocols designed to effectively treat your cancer, but now you're placing bumps in the road and saying no to something that hasn't come to pass yet? Why the agonizing?
I don't think we really can make those decisions until they're before us... And you have chosen treatments prior for what reason really? To fight the cancer right? To fight the spread, put it to sleep, knock it out!
So why then in advance would you close the door on a very effective therapy option? Because of what you read? The heterogeneous nature of this gift we've all been given dictates that we will all suffer it in an individual way. And yes, we can use the experiences as a guide from others, but truly there is no way to know how it will effect you. And there are known methods to mitigate some of the potential side effects patients experience as well. Again, not known until they happen, but can then be given while in the course of treatment (Chemo).
So... Don't knock it until you try it! Lolz
I'll share part of my story... When originally diagnosed at the end of 2017, I got myself to a Major Cancer Center, ie, MSKCC and did all my due diligence. I met with and consulted multiple surgeons, radiation oncologist, alternative complementary medicine, sexual health... All in house, all Oncologist, etc. But the one that stood out and scared the bejesus out of me was the Radiation Oncologist, he was way too aggressive, and telling me 2-3 years of ADT chased me away. Mainly because of all I had read about how it effected patients. But I wanted it out anyways and kinda had my mind made up before I met him. But fast forward through persistent PSA, then the RT & ADT, and persistent PSA, then 2 surgery's and chemo in 2021... To finally get some scans saying No Evidence of Disease... I continually think back to today's statistics showing how the RT, Bracy & ADT he wanted to do, just might have been a best chance at early fix. Lol... No remorse, No regret, I made my choices and stand by them.
Point is, you make your decision for what's right for you. But that may not be consistent with what's best or most effective for YOUR cancer. It's a tough call, but I hope everyone looks at things with open eyes and understands that our choices carry consequence. It all depends what you want. And how Morbidity and Mortality are two separate things of course. But not to confuse them... If Mortality is the primary concern, then the path gets clear. Morbidity muddles things because everyone has different tolerances as well.
I did have a choice, a divergent path, either Chemo and ADT, or ADT with a booster (Zytiga). I chose the latter as I know I'm still young. I chose it because I wanted to use the sledge hammer early! I chose it because I know later, I might not be able to suffer it. I chose it because I know that even later, I can use it again. I chose it because I knew it gets to all the far reaches in my body those sucker cancer cells might be hiding!
Today, I'm better for it. I hope this continues as long as possible! I hope you may find your path clear when it's necessary to make that decision... But until then, it makes no sense to worry or think about it, because when that might happen, there could be a host of other paths to chose from, so why ask today, what might be obsolete tomorrow!?
Anyways, just rambling because I had a great cup of coffee lol.
Good Luck & Best Regards
I've done taxotere chemo 3 times, 6 cycles in 2008, 6 cycles in 2015, and 3 plus keytruda this spring. It works for me. I lose my hair and I'm tired but I'm motivated to do hard workouts through it all. Xtandi is far worse poison for me that is. I'm basically oligo in the upper torso, use frequent scans, rad and surgery. Chemo just knocked my PSA down from .8 to <.006 in 6 weeks. I also cycle on and off with testosterone. I don't believe in doing anything until "it fails", I switched things up. My oncs know me, roll their eyes but figure my 18 years of experience and survival is worth something. I use customized protocols. So, you might try the chemo and see what happens.
awb1
I am interested in learning from your path. Would you please fill out your bio/history so the others can learn what treatments you have done.
I am currently trying to decide between IMRT and Chemo as my next step.
TIA
Scout
I thought I filled my bio out ?
Asking awb1 for bio
check my bio now . Thanks
I was pretty anti chemo ( I am hormone sensitive) but really wanted to have a mixed and early approach as my advanced cancer was progressing rapidly last November. My onco therefore suggested a mix of 3x Lu-177 and 3x Docetaxel. I started HT at the same time so no real idea what’s doing what but thought I’d mention it as 2 x Lu-177 had no side effects and 3 x Docetaxel had a 48 hour post 3rd infusion of feeling rubbish only. I was fully iced ( head, gloves, slippers and kept hair/ nails no neuropathy.
With PCa being heterogeneous a mix up of treatment made sense to me!
So DHwizard, please gaze into your crystal ball and tell me "chemo or no chemo"? What did you say? "That's not a crystal ball it's a bowling ball". "Ok then, let's make it 2 out of 3 games.....(no flowing robes handicap)"....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 05/22/2022 6:39 PM DST
you may want to research fractionated chemo
How you treat your metastatic prostate cancer is between you and your oncologist. I have two logical questions which you should consider:1. What is micro-metastasis?
2. Is it not better to undergo chemotherapy with hormone therapy when the body is strong to withstand the rigors of chemotherapy and the tumor burden minimal?
GD
Hi, do you have LU available now with the limited supply globally?
Thank you for your prompt reply. Do you ever use keytruda along side your Lu infusions?
Ok thank you
Financially wont be able to go to India for Lu-177 . I will have to stick with the plan when the time comes from the University of Chicago and or V.A. Thanks John
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