Mets in lymph nodes in Lower Abdomen now.

[ARIES29]

Hello Fellow Battlers of this hideous disease.

My question is, What would be a good chemotherapy to start on? There are so many mentioned here it is confusing as my Oncologist has left it to me to choose something. PSA will be around 12? when i see him next week, was 8.6 four months ago.

My short history is; Diagnosed 2011, PSA 9, had radiation 2012, Lupron 2015 & PSA down to 1.6 then on Casodex tablets until 2018 when PSA was 18. Two shots of LU177 2018, PSA down to 1.6 again.

I might add the Lupron made me sleep day & night & i have to drive, which was dangerous & the casodex gave me headaches. The LU177 worked but they will not give me another shot until i try chemo first.

Please you fellow sufferers, there must be something that does not have these side effects?

[Hidden]

Docetaxel , it KILLS cancer cells. Also the side effects aren't nearly as bad as some may say. Good luck.

[ARIES29 in reply to Hidden]

Ok thanks, i have something positive to mention to the Oncologist now on March 15.

[GP24]

You can get Docetaxel on a bi-weekly schedule. This is done with a lower dose and causes fewer side effects.

pubmed.ncbi.nlm.nih.gov/232...

[Hidden in reply to GP24]

For Docetaxel to be effective...doesn't it require ADT? All the studies supporting the use of Docetaxel also include ADT as the baseline treatment.

By not taking any form of ADT, the treatments available for metastatic pca are limited.

He must have metastases or he would not have been on Lu177.

What do you think of provenge in his situation? I think his burden is low so it may be more effective. Maybe after the Docetaxel?

[GP24 in reply to Hidden]

I just wanted to mention that you can reduce the side effects of a chemo when you have a bi-weekly schedule. Yes, ADT is the baseline treatment. But its up to him if he uses ADT or not. A chemo will work without ADT.

I think provenge is not available in Australia where Aries lives.

[ARIES29 in reply to GP24]

Thank you GP24, Yes i am in Australia & things are a little different here but it is the same world wide cancer we share & i think it was luck to start to be on LU177 & they discontinued the treatment, so now at 72 we start chemo with lupron? or ADT a put up with side effects it seems.

[Schwah]

I agree with nonamelames advice. However, I’m a little disturbed by your statement statement that Your “Oncologist has left it up to me to choose”. I hope he reviews the positives and negatives of all of your options before leaving it up to you to decide?

[maley2711 in reply to Schwah]

Yes, that is crazy!!! I doubt that I would continue with someone like him or her!! Are you sure itwas stated exactly as you mentioned. Trythe NCCN website for suggestions that many Docs rely on when communicating with patients.....your MO shuld be up to date on latest MO research on prostate cancer.....if not, find someone else...if at all possible

[ARIES29 in reply to maley2711]

Thank you maley2711, i will look at that.

[ARIES29 in reply to Schwah]

Thankyou Schwah, He did say he has many options & it was up to me to mention one or choose one & i think he will then tell me that is not available or whatever. One thing i have noticed about these Oncologists & especially Urologists is that they do not care about the side effects, but then why would they?

[Schwah in reply to ARIES29]

100% wrong my friend! Many good oncologists out there. Many guys here will agree that they have a good oncologist out there. You need to seek out an oncologist from a center of excellence that specializes in PC and has a bit of compassion. Ask here and you shall find...

[Hidden in reply to Schwah]

I'm not convinced the issue is the MO. There seems to be limitations on treatments put in place by this member. Given his reluctance to try ADT again, exactly what treatments are available? How effective will they be in the absence of ADT?

Provenge apparently is not available in Australia and not knowing where he lives...it could be hours of travel to a center of excellence.

A difficult situation for the patient and the MO.

[ARIES29 in reply to Schwah]

I am sure he is a good Oncologist compared to the other one working at the only cancer centre for 350 k distance & with what i am finding out here i will be able to suggest options available to him & go from there. Too far to go to Germany for LU177 & no flights allowed anyway at the moment.

[Break60]

Yea it’s estradiol patches! Toss the Lupron and it’s ilk. It’s awful! See my profile.

[ARIES29 in reply to Break60]

Will ask about patches Break60, Thankyou.

[CalBear74]

Your doctor’s comment to you about choosing sounds like a lawsuit avoidance strategy. Though Docetaxel is the obvious choice, I would get a second opinion from a distinguished Cancer Center such as Johns Hopkins or MD Anderson or Sloan Kettering. You might consider getting a new Doctor Who doesn’t play defensive medicine.

[ARIES29 in reply to CalBear74]

Hmmm, did not think of that CalBear74, You may be right, these people have been around the block, but there are not many options of MO here.

[petercraig2]

I would say try Estrogen patches scalable flexible so work from low number of patches regular with PSA bloodwork until PSA becomes stable and/or declining.

Works for me with similar bio as yourself apart from the ADT drugs I went straight from radiation to Estrogen. PSA and testosterone now both below measurable.

[ARIES29 in reply to petercraig2]

Thankyou petercraig2, thats what i need i think & i will certainly mention it. What about the man boobs ect? I guess that is not important.

[petercraig2 in reply to ARIES29]

I can strongly recommend Estrogen patches from my personal experience. PSMA PET/CT scan showed two lower abdominal lymph node were involved. With PSA and testosterone showing < .01 all seems good.

Man boobs are a non issue while a little annoying far better than night sweats and serious cardiac issues from most ADT therapies.

Best of luck.

[GeorgeGlass in reply to petercraig2]

Are there any studies that show the estrogen patches effectiveness compared to adt like lupron etc?

[ron_bucher]

I had Taxotere four years ago, and am currently in remission. My body tolerated it very well. I had Lupron injections every three months, and was able to talk my oncologist into stopping it after 9 months due to the side effect. I've heard that Lupron is available in smaller doses with more frequent injections (monthly?), and that may lessen side effects.

[ARIES29 in reply to ron_bucher]

Thankyou ron_bucher. Yes the lupron worked but seems i missed 6 months of my life. I was either asleep standing up or having car accidents sound asleep at the wheel. It was an experience i will not forget.

I will ask about Taxotere without Lupron.

[GeorgeGlass in reply to ron_bucher]

Ron, are you saying that your osa stayed low for several years without any adt? What was your psa, cancer volume, cancer location and Gleason before the chemo and how long after your initial cancer treatment did you get the chemo? Did you have prostatectomy or radiation before you received chemo?

[ron_bucher in reply to GeorgeGlass]

George, my history details are in my profile. I’ve had 7.5 years and 4 years and counting with undetectable PSA.

[GeorgeGlass in reply to ron_bucher]

It sounds like the cancer never got very far outside the prostate. Is interesting that you did chemo with your psa so low. Many of the doctors tell me not to do chemo with low volume of cancer even though mine is more prevalent then you, plus, mine is in the abdomen region. It siinds like you’re getting good care? Do you go to a big cancer center?

[ron_bucher in reply to GeorgeGlass]

I’ve never heard any doctor say the longer you wait the more effective the treatment. When I was diagnosed with Gleason 7 at age 54, I decided my war had begun and I would use every tool in the toolbag to win my war.

[GeorgeGlass in reply to ron_bucher]

My doctors didn’t say that chemo would be more effective later, they just indicated that it wouldn’t provide any life extension by doing it now. They say that it’s helpful when the cancer hasn’t spread outside the prostate area but once it has, plus years have passed, that the chemo wouldn’t benefit me much. That’s what two doctors told me this week. They are prominent doctors at Duke abs ucla. The more i research, the more i get conflicting opinions on which treatments to do.

[ron_bucher in reply to GeorgeGlass]

I rely on Mark Scholz who is one of the best. His theory is that Taxotere will kill the tiniest tumors regardless of where they are in the body. That was important to me because I clearly had a recurrence and no scan could see where the cancer was. The key phrase from your docs is "plus years have passed". When tumors get big enough, Taxotere can't kill them. So as an extra step after my Taxotere, I had prophylactic radiation of the lymph nodes that had the highest probability of housing larger (but still not visible on a scan) tumors that Taxotere couldn't handle. I think Dr. Scholz believes the Taxotere is mostly responsible for my remission (PSA is undetectable this week).

I guess I don't understand a doctor saying Taxotere is helpful "when the cancer hasn't spread". I thought that is when it is most helpful (again, as long as one doesn't wait until it gets big enough to overpower Taxotere).

[GeorgeGlass in reply to ron_bucher]

Good points. Sometimes i think the doctors only focus on specific studies. That’s why they tell you to do chemo at the very beginning after initial treatment really tell you to do it at the very end right before people die so if it works to beginning in the end why wouldn’t work sometime in the middle? I also think that a lot of the doctors no matter how much experience they have are victims of the average patient that they see meaning that if the average person is very slow possibly very elderly doesn’t eat right does an exercise that the outcomes that they have are often extrapolated and assign to all patients no matter how young are energetic are healthy they are with regards to eating and exercise. When I saw Dr. Michael Morris in Memorial Sloan Kettering in about 4 1/2 years ago one thing I remember him telling me when he saw me was that I was going to develop a belly like a pooch like a bunch of belly fat on me because that’s what lupron are other forms of ADT due to all the patients. I was kind of depressed to hear that but it’s 4 1/2 years later now in my abdomen is flat as a board as it was before hand. Obviously that doesn’t mean that I’m gonna live for 20 years but it does make me wonder if they’re assigning assessments to everyone based on what the average persons responses are.

Do you think when adt lowers psa to .01 that is just removing the cancers food temporarily but when chemo lowers psa to .01 that it is removing/destroying the cancer?

[ron_bucher in reply to GeorgeGlass]

Lupron is not curative. Taxotere can be curative. Congratulations on your flat belly - that gives me hope to drop the pounds Lupron put on my belly.

I think human nature is tilted toward fire fighting, not fire prevention. Many doctors succumb to that human predisposition. After many decades in customer support, I favor problem prevention.

[GeorgeGlass in reply to ron_bucher]

I agree with ya. Estimates show that 70% of Americans will be obese by 2030. That is totally preventable but we do almost nothing to teach kids best practices.

[Tall_Allen]

There is only one kind of chemo to start with - docetaxel (Taxotere). There are others that have been experimentally mixed with docetaxel. What others did he give you to choose from?

[ARIES29 in reply to Tall_Allen]

I do not see him untill March 15 & as i have a history of avoiding chemo he ( the Oncologist) has left it to me to choose but with rising PSA it is clear i have to do something, so i will reply with what he suggests for an opinion.

[Tall_Allen in reply to ARIES29]

The longer one waits, the less the survival benefit and the greater the side effects.

[ARIES29 in reply to Tall_Allen]

Yes i realise that now & was booked in to see him in Nov but the covid then Christmas holidays & he is booked out so finally in March.

Thank you for your valued input Tall-Allen.

[dockam]

Hi, Taxotere is the standard and according to the CHAARTED study when with ADT gave the participants 17 more months survival💙

I had 15 Taxotere chemos in 2015, got my metastases in left lymph nodes around the ureter resolved.

PSA dropped from 840.2 to 0.1 in the Summer of 2017. Still worked during the chemos.

In the midst of a 6 session rechallenge with Taxotere, as the Abiraterone and Xtandi failed last year.

As I did in 2015, I'm fasting two days prior to each to stave off side effects and maybe enhance the kill rate. osher.ucsf.edu/patient-care...

My best to you Brother

Fight on

Randy

[ARIES29 in reply to dockam]

840.2 to 0.1 is a good win for sure & now to keep it down seems to be the ongoing problem?

[GeorgeGlass in reply to dockam]

Is any treatment working for you now? How high was your cancer volume when your psa was 820? Low medium or high volume?

[dockam in reply to GeorgeGlass]

Hi, had those mets in L side ureter lymph nodes and a huge median lobe on the prostate. I believe it was around 65ml on the ultrasound with normal being around 25ml.Just had my 4th Taxotere chemo as a rechallenge on 03/05 with two more to go.

PSA last month was 5.8, a drop from 9.6 in 12/2020.

Zytiga and Xtandi failed in 2020 and the Kaiser MO agreed to try another round of chemo after I sent her some research.

Will have another Axumin scan after the 6th Taxotere to assess the effect on the two 1 cm pelvic lymph nodes that had high activity.

This article was dropped last Sept for PCa awareness month: prostatecancer.net/living/c...

Fight on Brother

Randy

[dockam]

Have two 1 cm pelvic lymph nodes that had high uptake on Axumin scan 😢

PSA got to 9.6 its down to 5.8 with three more chemos to go

[ARIES29 in reply to dockam]

That is interesting about the fasting & it makes sense that the body takes up more on an empty stomach, but i always worry about the liver when taking tablets & these drugs without food in the stomach to absorb it.