Advanced Prostate Cancer
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Axumin PET Scan Results

My prostatectomy was on 1/26/18 (almost 4 weeks ago). They removed 28 lymph nodes during surgery, 8 of which had cancer. There was extra capsular extension, seminal vesicle invasion, perineural nerve invasion, and positive margins near the bladder neck. Tumor in over 80% of the prostate, the vast majority of which was Gleason 9 (4+5). Staging after surgery was pt3bn1mx.

Today, I had another PSA and I also had an Axumin PET scan. My PSA was 2 and the scan could not detect any cancer in bones, organs, or distant nodes. However, it did detect cancer in 4 more regional nodes in the pelvic region.

I guess I should be thankful it is not in my bones, organs, or distant nodes, but the sheer number of regional nodes involved (12 total) is not good.

Has anyone on here had a similar experience? I understand that one or two nodes usually carry a prognosis just as good as if no nodes were involved, but a high Gleason score with multiple nodes is a good indicator of a poor prognosis for overall survival.

I hope to soon start chemo/hormonal treatment with Dr. Amato at Memorial Herman Cancer Center in Houston. It's a continuation (phase II trial) of the program (phase I trial) that Gourd Dancer had great success with 14 years ago. Wish me luck. I hate what this disease is doing to those I love more than I hate what it is doing to me.

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Dale,

I'm sorry to hear that the surgery couldn't get all the cancer. I think the decision to see Dr. Amato and to go for aggressive medical treatment is a good one. I suggest that you also ask about "salvage" radiation.

I'm thinking that one approach is to start Lupron (Firmagon is even better) right away to completely halt any further cancer growth. While that's working, take all of the latest scans to a top quality radiation oncologist and find out what he can do. With the scans he'll see where all the visible cancer is located and, very possibly, be able to come up with a plan to hit all of it.

Will it work? I don't know. The rad onc will have a much better idea than I will about what your odds are. But you'll have to consult him to find out. With the scans you've just got he should be able to give you a more accurate prognosis than most guys get who go for radiation after surgery without Axumin PET scans.

Of course my suggestions are from a total non-expert. A real doctor may say that I'm totally wrong here. But I think it's worth asking about.

Best of luck.

Alan

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Thank you, Alan. I was thinking the same thing and I notified my radiology oncologist in Atlanta to let them know the scans are available. I can't do salvage radiation yet because I haven't regained full continence, but I'm hoping they could target the lymph nodes in question.

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Perhaps the first thing to do besides starting at least ADT and abiraterone is to get a Gallium 68 PSMA PET/CT which has more sensitivity than an Axumin scan to determine the "real" extension of the disease.

UCLA and other institutions have clinical trials for Ga68 PSMA PET/CT studies. Please do a search for Galiium 68 PSMA and prostate cancer at clinicaltrials.gov

If the cancer is PSMA sensitive you can be a candidate for Lutetium 177 PSMA treatment. This is a nuclear medicine therapy developed in Europe mainly in Germany and effective in some patients with metastatic disease.

There are at least 3 clinical trials going on in the USA for castration resistant metastatic prostate cancer.

Please search for prostate cancer and lutetium 177 on clinicaltrials.gov

You may not qualify since your cancer may be hormone sensitive.

I was in a similar situation in 2016 and I was treated with Lutetium 177 PSMA treatment in Munich, Germany. I had to pay for the treatment the total cost is around 12 K euros.

I had multiple metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.

The treatment can kills cancer cells castration resistant and hormone sensitive in the bones and in soft tissues (lymph nodes and viscera). Very well scientifically documented treatment.

I continued in ADT, no metastasis and my last PSA was 0.09.

Keep the fight, there are many avenues of treatment in your situation.

As they say prostate cancer is only 2 words and not a sentence.

Best wishes

Raul

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Thank you, Raul. I think I'm going to go with Dr. Amato's treatment plan and keep the lutetium 177 weapon in my arsenal for use if the disease progresses after this initial treatment plan. I've read about lutetium 177 and it is a shame that we do not have proven treatments like this available for us in this country. Even China is beginning to outpace us in advances in cancer treatments.

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I am sorry about my ignorance, but what is Dr. Amato's treatment plan?

You could get the Ga 68 PSMA study in one of the clinical trials regardless of what treatment are you going to follow. Ga 68 PSMA is one of the most sensitive tests and it will be convenient to have it as a baseline if further testing is needed in the future.

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It's essentially 6 months of chemo and 2 years of hormone therapy. I'll send you the details.

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Again I am sorry about my ignorance but I wonder why you want to go into chemo instead of the conventional treatment for hormone sensitive prostate cancer of Lupron or similar plus abiraterone.

Is there uncontroversial proof that chemo and ADT has a better outcome in hormone sensitive metastatic PC?

Chemo has it consequences on the whole body and in the immune system.

Those where the reasons I went into ADT with lupron and casodex and then had the Lu 177 PSMA therapy, just to avoid chemo or to put chemo in a distant future.

It just must be my ignorance about what Dr. Amato's treatment does for the patients when compared with the conventional new therapies.

Please send me the info, I am very interested since I am stable but I am not cured and I am opened to any possible treatments.

Thanks for you patience

Best wishes

Raul

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Hello Raul, Just wondering,you said if the cancer is hormone sensitive then you do not qualify for the lutetium 177 treatment in Germany. I had the Galium 68 pet scan & it showed 3 lymph nodes positive but no organs as yet so i am on cosudex,one a day 50mg as i am still hormone sensitive but was thinking would it not be easier if they were removed or this lutetium treatment done. Your thoughts please.

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People with hormone sensitive may not qualify for the trials in the US.

I was in a similar situation to yours when I went to Germany.

The trials in Germany are for mCRPC, but they have very generous compassionate laws about experimental treatments.

One center did not take me because I was hormone sensitive but 3 others did.

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In 2016 , I had 5 large nodes 2 in the pelvis and 3 in the abdomen and a large amount in between with low uptake, so they did not consider me a candidate to any type of therapy except ADT with lupron and casodex.

I started this therapy and I looked for alternatives and finally decided I did not have anything to lose if I tried the Lu 177 PSMA treatment.

I got in touch with different centers in Germany , I was accepted and I decided to go to the Technical University of Munich.

They offered me up to 6 treatments but one treatment eliminated all the previously positive nodes. I did not have any complication. It is an IV infusion of 1 hour and then 3 nights in the hospital to clear the radioactivity. This was in October 2016.

Still in ADT. PSA went from 10 to 0.05. Last Ga 68 PSMA was done in December 2016 and it was negative for metastasis (PSA at that time was 0.4).

Anything, please let me know

Best wishes

Raul

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Raul, Thank You so much for your information & it seems like you said our situations are the same & i may have more than 3 positive nodes anyway by now. Will let you know as options are liimited here.

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Τhank Raoul for the information. I am candidate for this therapy in berlin hospital. Did you have Lu177 therapy one time? Was there side effects? Give me please any info you thing useful! Thanks

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Μy prostate ca is resistant to all kind of therapy, is castrate resistant, neuroendocrine with bone mets and lymph nodes involvment. So there is only one option PSMA LUTENIUM 177 Therapy. So any information is precius!

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56 years old whit two very youn children!

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Raul,

Can you give me information on who and how to contact the people in Germany for lu-177 treatment. My Dr. thinks it is likely the best option out there at this time. I have lymph node involvement post surgery (04/16/2016). current psa 0.04 -- only taking Avadart.

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You have to start hormone therapy anyway, and while you are on it, your cancer will not progress for a long time. That will give you plenty of time to regain your urinary continence before beginning salvage radiation. The salvage radiation must be whole pelvic and include an expanded field as described in the following article.

pcnrv.blogspot.com/2017/02/...

This will be your last chance to go for a cure, and you have to treat what you can't yet see as well as what you can.

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Will do. Thanks!

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Hi Dale

My husband s dx is similar.

August 2017 dx. Psa 12 age 54

Ga-68 psma done. There was no spread.

Oct 17,2017 da vinci RP

Pathology said 4 of 21 lymph node cancerous. Positive margins and SVI

Gleason is 3+4

Psa : 17 nov 2017 psa undedictable ( he used casodex 6 weeks before the surgery)

17 dec 2017 psa 0.02

17 jan 2018 Psa 0.02

17 feb 2018. Psa 0.02

After the surgery he only uses lifta 5 mg daily.

Dr says we will not do RT or HT for now since psa is this low.

He is using some supplements.

No red meat. Little organic chicken.

A lot of fresh vegetable.

2 days a week yoga

3 days a week sports

It is too early to say we are succesfull yet.

I dont know what the reason is for psa to be stable. Maybe it is the supplements, maybe the diet, maybe sports or maybe just his genetics.

Is your psa 2. ?

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Hi Kamile:

It is not clear to me why they are waiting. People with BCR could have long periods of stable very low PSA before the BCR appears. In my situation it was 14 months, and during that time the cancer escaped the pelvis and it was not curable anymore.

I believe you should get a second opinion with some oncologist in town or out of town.

Your husband has metastatic hormone sensitive prostate cancer. Apparently he does not have disease outside the pelvis, so he is a candidate for SRT. He is also a candidate for ADT with lupron or similar and abiraterone. If is true that there is not disease outside the pelvis the SRT could be curative.

Best wishes

Raul

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Good Luck!

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Yes, it is 2. It could possibly drop more since my surgery was only 4 weeks ago, but my scan shows there are 4 positive nodes left after surgery, so it will not drop to undetectable levels without further treatments. They took out 28 nodes during surgery and 8 of those were positive. With nodal involvement, I would seriously consider radiation to the prostate bed if I were in your husbands shoes. Better safe than sorry with this disease. Please look at the link Tall_Allen posted on this thread about recurrences and radiation. As far as what your husband is doing, exercise and diet are certainly the best things anyone can do to help their body combat this and those low PSA numbers are very encouraging. Hope they stay there! God bless.

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Hi, my name is Lynn, my husband just a month ago had one of three cancerous lymph nods removed. He has bone mets, nothing in any organs as of yet. He does have several lymph nodes in the pelvic area. the other three LNs were distant, Question, do the distant nodes have a worse prognoses? My husbands oncologist suggested chemo every week for the rest of his left or hopefully the biopsy of the LN will show that is will qualify for Keytruda???

Still waiting for the test results, I'm a nervous wreck and fingers crossed. Sam, my husband started at age 65 with this journey and is now 74 young.

Best wishes to you! Keep us posted.

Lynn Pa.

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Lynn, I think the general belief in the medical communy is that metastasis to any distant sites means the disease is no longer curable, but treatable. This is going to sound crazy, but start researching "restrictive ketogenic diet" and "mistletoe therapy for cancer". Most docs scoff at mistletoe for cancer treatments, but they are scoffing at something about which they are ignorant. Johns Hopkins has taken notice of the people who are using this therapy and the results they are achieving (well documented stage IV cancers being cured) and they are putting together a clinical trial. Right now, docs in this country cannot prescribe or administer this. Look for the Martin Clinic in Atlanta. That will give you a good starting place to research this. Also, there are many documented cases of strict keto diets putting cancers in remission. Dr. Mercola has a lot of info on his website about this. Good luck.

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Hi, Thank you for all the information, I'm going to look into the both the mistletoe therapy and the restrictive ketogenic diet. I will start with Martin Clinic in Atlanta. it's really sad that our country is so behind on some of these clinicial trails and such. Hope soon we catch up!!

Thanks again for your help. Keep us posted!!

Take care! Lynn

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I had two hot iliac nodes in 2015 so I had ALL pelvic lymph nodes radiated by Dr Dattoli in Sarasota. I also went on ADT3. No recurrence. My post RP pathology was similar to yours but I had negative nodes.

Bob

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So your nodes were negative at time of surgery, but you had a recurrence with 2 nodes becoming positive later?

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Yes in September 2013 I had ten lymph nodes removed during RP all negative but I had Gleason 9, SVI, EPE and positive margin at bladder neck . Nine months later in July 2014 I had ADT (6months) and SRT (68.2 grays) to prostate bed and 15 months later in September 2015 I started 13 months of ADT3 and had all pelvic lymph nodes radiated (IMRT) with 75 grays in 50 sessions. Then 18 months later I had an axumin scan which found one 9 mm lesion in femur and I had SBRT in 3 sessions . Back on ADT3 and on xgeva.

Bob

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Is Dr. Amato back, I was under the impression he was out for an extended time.

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2014 age 52 first routine PSA test : 35,49ng/ml + enlarge prostate.

Biopsy : ADENOCARCINOMA. Gleason score 8(5+3) + negative for mets. Lymph nodes involved + one distant

Hormonotherapy FIRMAGON

20/10/15 Surgical intervention. Total prostatectomy (L. Da Vinci robot assisted ), removal of seminal vesicles and many lymph nodes.

Biopsy DIFERENCIATION TO NEUROENDOCRINE

Hormonotherapy ELITYRAN and chemotherapy TAXOTERE -CARBOPLATINE (4 cycles). PSA decline. After 4 cycle PSA is rising to 200 ng/ml despite 2 new cycles chemotherapy and hormonotherapy + bones mets

4/11/17 removal tumor from urinary tract and pigtails for kidney dilatation

Since 8/11/17 patient is in TRIAL ANOSOTHERAPY with ATEZOLINUMAB and XTANDI

PSA rising to 300

Last proposition nanoPET and nanotherapy in CHARITE Hospital Berlin Germany. I wish the best !

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I was seeing Dr. Amato last year, when he took leave for his brain cancer. I have not checked back with his office since Jan. 2018. Is he back at work and seeing patients again?

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Most people with brain cancer never return to work.

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