What would you do?

Brothers:

Two pelvic lymph nodes, tumor burden in one, was 2.7cm, in the other it was 2.5cm. Now, one year later, with only 150mg daily of casodex monotherapy, both nodes have been reduced to 1.6cm. PSA one year ago was 105; now it is 6.7

I am thinking of adding Advodart and monitoring the two nodes with scans every six months or attack them more aggressively.

Choices:

1.) Add Firmagon (More gentle on the kidneys)

2.) Radiation (IMRT or Proton)

3.) Surgery

Trying to avoid more adverse side effects to live with before death.

History:

1998: Prostate Cancer Diagnosis, Gleason6 (3+3), PSA 7.3

1999: 72 Gray radiation to prostate and seminal vesicle (but not to pelvic lymph nodes)

2003: Cryosurgery - which led to biochemical failure in 2006

Monitored PSA every 6 months, doubling time veried between 18 and 24 months. Also, had yearly CATscans (where nothing was shown).

A year ago, PSA shot up to 105, and CATscans showed the two above mentioned lymph nodes, but on a bone scan, NO mets.

Firmagon or Lupron increase risk of cardiovascular events. Radiation causes risk to intestines and the rectum and small bowel.

Surgery Risks: General Anesthesia, Blood Clots, Infection, Heart/Stroke Attack

Please give me your opinion and questions you would ask the doctors I would be consulting.

P.S. The only supplements for Prostate Cancer I take are: Vitamin D3 (2000 IUs daily) and Lycopene (30mg a day, divided into 10mg doses with meals), Recently, without drugs, I lost 100 lbs. Being a type II diabetic, my A1C is 5.7, without drugs.

- Rich

51 Replies

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  • It looks like you are doing your research. If you elect surgery, ask how many lymph nodes they will take out in addition to the ones in question. Since you had radiation once already, ask what are the chances of increased damage two your intestines. You may want to consider a blend. Radiation or surgery followed by Lupron. (I had all three, surgery, radiation and hormonal.).

    Good luck!

  • Two very good questions to get answered.

    Rich

  • Hi Rich, you and I have a very similar story except I did Proton Radiation. I'm not sure where you are being treated, but my doc at MD Anderson went with Firmagon to drop PSA and it shrunk my two involved lymph nodes. PSA started to rise about 8 months after starting Firmagon and doubling monthly. Moved to Lupron. He thinks cancer is euther micrometastisizing or may be regrowing in prostate. Just did MRI a few days ago to see if that's true or not. Has your doctor considered checking the prostate to see if it is involved? The lymph nodes may not be the cause. I will keep you posted on what I learn. What does your Onc say?

  • Just heard MRI showed nothing but My PSA continues to double last month 8, this month 15. Anyone else on here experiencing this or knows of some case studies regarding The response BigRich and I are experiencing?

  • scarlino,

    I think you have two main options: more powerful hormone therapy (Zytiga or Xtandi - assuming that you haven't already tried them), or chemotherapy (docetaxel).

    If you haven't tried Zytiga or Xtandi, I would try one of them. That option may have fewer side effects than chemo. However if, like BigRich, you have already been on Firmagon, the other hormone therapies would most likely only work for a relatively short time. Try one by all means, but also get started thinking about chemotherapy.

    I would talk to your oncologist about chemo. I know it's a scary idea but, in theory, chemo is particularly effective against tumor cells that are dividing frequently - which yours probably are if your PSA doubled in just one month. Chemo kills cancer by damaging cells that are in the process of cell division. If the dosage is just right, healthy cells that are able to repair the damage will do so, but tumor cells are less able to repair the damage and are more likely to die.

    Chemo is not a cure for prostate cancer, but it might extend your life. If you're lucky, it will extend it by a significant amount of time.

    I suggest that you move quickly on this, but try hard to find an experienced and dedicated oncologist to apply the chemo. You want someone who will think out the best dosage, schedule, and adjuvant therapies for you, not some hack who just applies the same formula to everyone without thinking or caring.

    Another option is clinical trials. The chances are that the already proven therapies (advanced hormone therapies and chemotherapy) will do more good than experimental therapies. But sometimes we get lucky and a new treatment turns out to be really effective.

    Best of luck.

    Alan

  • " However if, like BigRich, you have already been on Firmagon, "

    Alan, I haven't been on Firmagon; just 150 mg. of Casodex, daily. In one year my PSA went from 105 to 6.7 I am thinking of adding Avodart.

    Rich

  • "Alan, I haven't been on Firmagon"

    Ah right. Sorry about the confusion. It was scarlino that was on firmagon and I got a little befuddled replying to a reply to a reply.

  • Alan,

    Do you like Advodart? What do you think of it?

    Rich

  • Avodart inhibits (i.e. blocks) an enzyme (biochemical catalyst) that adds a hydrogen atom to testosterone ("T") to create dihydrotestosterone ("DHT"). DHT is said to be a much more potent molecule for signaling prostate tumor cells to divide and multiply than regular T.

    I don't have any expertise on Avodart. It is my recollection that some prominent medical oncologists have presented evidence that "ADT3", which includes dutasteride/Avodart, prolongs life more than simple ADT by helping to keep whatever small amounts of T remain from being turned into DHT, but not all oncologists are convinced and not all agree that this effect makes a significant difference.

    Avodart has also been proposed as a way to prevent prostate cancer, and a way to prolong the "off" period in intermittent hormone therapy. But again, not all oncologists agree and, if I remember correctly, there are some contradictory studies.

    There was one study that claimed that Avodart actually increases the incidence of aggressive prostate cancer and I still see references to that study, but I think that it was found to be a misinterpretation of the data. So, as far as I know, Avodart won't hurt you. But I don't know how much it helps and I wouldn't be surprised to find out that it helps some people but not others. It seems like everything in the world of cancer treatment turns out to be like that. Right now, I think only a minority of oncologists prescribe it, but I suspect that most of them consider it harmless and would prescribe it if you ask them.

    Alan

  • "There was one study that claimed that Avodart actually increases the incidence of aggressive prostate cancer and I still see references to that study, but I think that it was found to be a misinterpretation of the data."

    I am familiar with that comment. I hope it is not like hormone replacement for women, where they were keeping them on therapy for 10 or 12 years; then found out that more then 3 years produced health consequences.

    Rich

  • We do know this about Avodart: It's mostly prescribed for men who have to urinate frequently. I'd guess there are a great many more men taking it for that than for PCa. In addition, it's a follow on drug, a small modification and an improvement over finasteride/Proscar, a drug that's been used even longer and is used both for urinary frequency and hair loss.

    The fact that it's been used so much doesn't prove that it's safe, but at least we know that men who take it aren't suffering enough that it's made the newspapers.

    Is that worth anything? Hmmmm.

    Alan

  • "The fact that it's been used so much doesn't prove that it's safe, but at least we know that men who take it aren't suffering enough that it's made the newspapers.

    Is that worth anything? Hmmmm."

    It was approximately 30 years from the first hormone replacement injection for women that they found a problem. I agree with your conclusion.

    Rich

  • Please keep me posted. Thank you the feedback.

    Rich

  • Sure will.

  • bigrich: I was similar and of same vintage (Pd+XBRT in '98). I'm guessing your at or around 75?

    Was psa repeated to confirm ~105 last year? Could there have been an infection...which an antibiotic might've helped?? Clearly you're doing better now--for whatever reason!

    My understanding is that if pca is in lymph nodes (me too) there is a good chance that it's also in the blood stream and could eventually show up elsewhere. Removing 2 or more ??lymph nodes surgically could release more cells into blood. More radiation? Gotta have an artist for salvage. I'm surprised that you chose 150 mg Casodex over Lupron (or Firmagon). My on/off experience with Lupron (+ 50 mg Casodex) over the last 15.5 yrs has been good, minor hot flashes at outset and nothing else I can see/feel. I'm now 81 and, even with family cardio history, I appear to have survived-still play racquetball. You appear to have a slow grower with a DT of >>1 yr (mine is 3-6 mo). Don't know your age, but my decision FOR ME was IAD-3. You might want to explore things like metformin OR NITROGLYCERIN PATCH if one of your gatekeepers will sign. How about Estrogen patches or gel??? Few(er) cardio issues, I understand.

    Suggestions: Blood tests for testosterone, dihydrotestosterone (will avodart help???) and Vit D-3. Also a bone density measure, at least by DEXA scan. If DHT >~10, then Avodart, if Vit D3 and/or bone density low, increase Vit D (I take 6000 IU). But I think your age and family history are major factors to consider with a doubling time of ~1.5+/yr

    Herb

  • "Was psa repeated to confirm ~105 last year? Could there have been an infection...which an antibiotic might've helped?? Clearly you're doing better now--for whatever reason!

    My understanding is that if pca is in lymph nodes (me too) there is a good chance that it's also in the blood stream and could eventually show up elsewhere. Removing 2 or more ??lymph nodes surgically could release more cells into blood. "

    My PSA went from 27 t0 67 in six months, Then retested ten days later went to 105. Infection possible; however, what made me go to Casodex was a scan that showed the two tumorous lymph nodes.

    Rich

  • Herb,

    Thank you for your comprehensive response. Next month, when I see my doctor; I will add Avodart.

    Rich

  • Herb obviously has a lot more relevant knowledge than I do, but I'd like to chime in on the 2 items where I know a little. I think you should try metformin. I was pretty sure my med onc would say no until there was further proof in a clinical trial, so I asked my PCP (primary care provider) & he agreed.

    The other item is Vit. D3. It's been said that at 5000 IU, D3 is a supplement, but at 10,000 it's a prostate-cancer-fighting drug. Also, there was a Scandinavian study some time back that found that guys it the medium group for D3 blood serum level lived longer than guys in the low group, & guys in the high group outlived guys in the medium group. I started in the medium group while taking 800 IU, but I improved it taking 5000, & I'm now in the high group taking 10,000.

    I can't give you any references. My wife & I are relaxing in Thailand. We get lots of endorphins & some solar-induced vitamin D with the warm weather, wonderful food, excellent cheap massages, beautiful things to see, & great people.

  • Wait, I can give you a reference: on YouTube, watch Results of a Prostate Cancer/Vitamin D Trial: Effectiveness Safety Recommendations. This is a very helpful talk by a real expert in the topic, Prof. Bruce Hollis. What most doctors believe about vitamin D dosage & safety is based on some very old misinformation.

  • Neal,

    Did you ask me a question abour omega 3's?

    Rich

  • Rich, I think somewhere else research about having too high an omega-3 level was mentioned. And I asked for a reference, since I'd like to know if I should not be taking 1000 mg's of omega-3 daily, & if I need to be tested. Thanks, Neal

  • I meant twice daily.

  • At ask.com type: Will omega-3's cause prostate cancer progression?

    Among other references it should list the first study to that effect.

    Let me know what you think.

    Rich

  • " ...increase Vit D (I take 6000 IU)." I can't go beyond 2000 IUs due to kidney impairment.

    Rich

  • "... even with family cardio history;" For both PCa and stroke prevention in the litature Lycopene is mentioned. One source stated that Lycopene lower stroke risk by 59%.

    Rich

  • Rich,

    Where d you live? I am asking because I want to know if you have the ability to get a PSMA (or one of the other newer) PET scans. I am questioning if a PSA of 105 could be explained by two lymph nodes. It is highly possible that there is something else at play in your body? If there is, the risks of going after just those lymph nodes might be higher then the possible positive return you would receive.

    My thought is that you need more information.

    Joel

  • Joel,

    Good observation. I live in the Hartford, Connecticut area. Do you know of a PSMA scan in the area?

    Rich

  • Rich,

    It isn't yet approved in the US; insurance companies most likely will not pay, however there are a few trials with some different contrast. I just had one at the NIH in Maryland. The trial should not cost you anything.

    Look on clinicaltrials.gov

    Joel

  • Joel,

    I don't have contrast with my scans; in that, I have kidney disease.

    Rich

  • Hi Joel

    I looked on clinicaltrials.gov did not see the trial at NIH. Can you supply the trial number?

    Thanks

    Bill

  • go to: cancer.gov/about-cancer/tre...

    There are a few trials listed

    Joel

  • Thanks Joel but I looking specifically for 68Ga PSMA-617 PET/CT scan. It looks like none in the US yet. I will most like go to Germany.

  • Whoops I think PSMA-11 is ok for the scans I need PSMA-617 for the radioligand treatment but first the scan. It looks like UCLA has a trial.

    Thanks

  • Hey Rich,

    Gotta hand it to you, for the weight loss, and an a1c like that. Impressive for a diabetic, IMHO. I did IMRT and Lupron. When Lupron failed, my PSA doubled three times in as many months. I was put on Zytiga and the PSA went from 29 to 1.1 in two months. I haven't had any side effects whatsoever. After six years the, radiation came back and bit me in the butt. Literally. Let's just say it required a hospital stay. It also caused my prostate to choke off my urethra. Quite a lot of pain. It's tough to try and explain things in such a forum when there's so much to be said.

    Good Luck, Joe

  • Joe,

    I too had to have an operation to open up my urethra.

    Rich

  • Rich,

    I've been sitting here reading about the guys who have incontinence, and I wonder how that must be.

    I should have been told of the chance that a blockage may occur. I also should have been told that my bladder was blocked, and treated when it happened, not three years later. I thought it was prostate pain. It's water under the bridge now.

    Joe

  • Joe,

    They didn't tell me when my bladder was blocked; so that, I now have stage 3 Kidney disease.

    Rich

  • That's totally f'd up. I'm at the point now where my bladder is mostly healed. I still pass some scabs and blood, but very little. Fortunate for me, no kidney disease yet. Now I'm curious, I was blocked for three years+, something else I can worry about.

    Joe

  • Joe,

    I have a doctorate, but not in medical science. You may be find. Have your medical doctor give you the blood test to check the biomarkers for healthy kidneys.

    Rich

  • Rich,

    I get a full work-up monthly, so far, so good. I lucked out with good bones, and good innards.

    Joe

  • Hi, I had 72 radiations 5 years ago and the cells inside my urethra are "Spongiform" ,like when your fingers get wrinkled under water. So I cath every other day just up to my bladder to push the cells flat again in the urethra. It was taking me 10 minutes to urinate and I never really emptied my bladder until I did this.

  • Hi Jim,

    That's not to cool, or comfortable, I'd imagine. That sounds like a lot of rad at one time. That truly sucks.

    Joe

  • Jim,

    Hang in there; this disease and treatments effects all our lives in different ways. I wish you the best.

    Rich

  • I have a good life and try to keep ahead of all the problems. My cancer doctor is very good and has steered me in the right direction. I first had 42 radiations, then 2 years later I had 24 more, because my fast growing cancer had metastasized. I have had few side effects except during the second radiation they punctured my colon and gave me e-coli in my blood (septicemia). So I took a week off from radiation and was hospitalized. Then I had outpatient antibiotics I.V. in the morning and radiation in the afternoon. I just did it and never looked back. I feel better now and I hope all is well with you.

  • JIm,

    You have had a tough journey, but you have a positive attitude.

    Rich

  • Thanks Rich!

  • Big rich: Before I forget AGAIN, I want to point out that the connection between your two lymph nodes and "starting Avodart" are slim at best. Why do you make that connection. And, I hope that was derived from my comments. I urged that you measure DHT and, based on result, then CONSIDER Avodart.

    Herb s

  • Herb1

    I always measure my DHT. Avodart I may pass on only because I am not 100% sure of its safety.

    Rich

  • Rich,

    I"m a chemist. Everything has a risk. Compare avodart to, for example, salt! For me, it's been a totally innocuous drug for lo these 15 years. What are the side effects that worry you? If you can find them, ideally in Avodart's package insert, see the frequency of the side effects you're concerned about. I will agree or caution that with your diabetes I don't know whether the side effects profile is valid...but neither is it for casodex, salt, or whatever--except Sugar! :-)

    Just looking at an old medication info sheet, all I see are sexual problems and breast enlargement, discharge.

    herb

  • Herb, discharge, are you refering to excess urination? I wonder that report of a subset of PCa patients had their PCa become more aggressive is valid or not. I know, later they said it was a misinterpretation-But.

    Rich

  • Hello new to this site. Had full surgery and afterwards PSA was still 3.3 but all scans showed nothing Had referral to a hospital in Berlin for scan with GA-58 which is PSMA prostate cancer specific marker. It showed two small lymph node tumors in the pelvis.

    Cyberknife was recommended but my oncologist is insisting on full pelvic radiation for 6 weeks. However I managed to get my clinical oncologist to prescribe Estrogen patches and PSA has gone from 12.0 to 2.1 in six weeks. Also got prescription for Metformin as oncology literature says it increase longevity from all causes including prostate cancer.

    My dilemma now is I want to stay with Estrogen & Metformin to see how it goes but radiation oncologist says that radiation is not effective if/when PC becomes refactory. Seems to contradict what I have read anyone know about this?

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