RalphieJr64: Diagnosed with stage... - Advanced Prostate...

Advanced Prostate Cancer

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RalphieJr64

RalphieJr64 profile image
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Diagnosed with stage 4 prostate cancer in July. Had 6 infusions of chemo that ended in December. I take casadex and also Lupron shot every three months. PSA went from 138 to 0.45. Had a urnary stent put in last week. Started to experience extreme rectal discomfort a few weeks ago. This is how it all started for me. Worried I went through all this for nothing. Have an oncologist appointment on February 26. I don't know what the next step is.

Ralph

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RalphieJr64
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spinosa profile image
spinosa

The next step is the one you're taking...see an oncologist...

Sorry to hear about your problems. Could you specify where the metastasis are? did they do any treatment to prostate and prostate fossa?

Controversial but radiation treatment of the prostate, prostate fossa and pelvic metastasis may be helpful in this situation particularly in your case with rectal discomfort and urinary obstruction.

ncbi.nlm.nih.gov/pmc/articl...

Perhaps your treatment should be lupron or similar plus abiraterone instead of casodex. The abiraterone is associated with a survival benefit in hormone sensitive metastatic PC.

If abiraterone does not help they could use enzalutamide.

If the cancer is PSMA positive it can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease.

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

clinicaltrials.gov/ct2/resu...

The first things is to determine if the mestastasis are PSMA positive.

A Gallium 68 PSMA PET/CT will identify metastasis if they are PSMA positive when the PSA is 0.2 or more. There is an ongoing study a UCLA with Ga 68 PSMA PET/CT: Please search at clinicaltrials.gov for GA 68 PSMA and prostate cancer.

My treatment with Lutetium 177 was done in 2016. I have it done at Munich. I had multitude of 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. Very well scientifically documented treatment.

Anything please let me know.

Raul

RalphieJr64 profile image
RalphieJr64 in reply to

Thank you for your reply. I am currently being treated by my oncologist at the John Moores Cancer Center in La Jolla CA. I was diagnosed with a stage 4 aggressive cancer in July. Gleason 9. Finished chemo of 6 infusions on Dec 28th. Also have been taking casodex as well as Lupron shot every three months. Had 3 so far. See my oncologist on Feb 26, but called today and let them know about my rectal pain. I had rectal pain when I was first diagnosed. I'm just worried after all of my treatments, it's coming back to where it was initially. My cancer metastasized to my pelvic bone as well as my rectum. I just hope the pain is something else, because I haven't had any pain in that area for the last two months.

I have a friend who gets treated at the same center but now he is looking for a new oncologist since the ones at the Moores Cancer center are to passive for his way of thinking about the treatment of a pretty malignant cancer.

For example, you should be in abiraterone (Zytiga) instead of Casodex. The FDA just approved Zytiga for metastatic hormone sensitive PC because it offers a survival advantage.

You should be directed to clinical trials with new drugs or treatments including immunotherapy. There are many trials going on just do a search in Clinicaltrials.gov for prostate cancer treatment and hundreds of studies will appear.

Please, get a second opinion. Dr. LAM in Marina del Rey seems pretty competent. You should get into the IPCSG, which is considered the best support group for PC in the USA. They meet close to the Scripps hospital in Torrey Pines. The IPCSG has excellent information,

Best wishes

Raul

RalphieJr64 profile image
RalphieJr64 in reply to

Thank you Raul. I wish the best for you and all who are afflicted.

I was thinking that if the chemo did not help very much with the rectal metastasis, perhaps you need another systemic treatment (whole body treatment). Besides the ADT that seems not to be working well the Lu 177 treatment is what it is left. Perhaps you should consider that avenue of treatment.

If you need more info, please let me know.

Best wishes

Raul

Chask profile image
Chask in reply to

Raul, you have mentioned that you had Lutetium treatment in 2016 and that removed multiple metasteses. Great result! Have you had a subsequent PSMA scan to determine if there is ongoing efficacy of the Lutetium? If not yet, do you have a plan to get it rechecked?

I know from trials held in Australia, not everyone responded to Lutetium, and of those who did, there were some who relapsed.

I very much hope that you had an enduring response and that you could even be looking at a “cure”. That would be very exciting news for most of us.

All the best, Chas

in reply to Chask

The treatment was done last week October 2016 I had a Ga 68 PSMA PET/CT the first week of December 2016 and the metastasis were gone but the cancer was still present since the PSA was 0.4. I continue treatment with ADT until today and my PSA is 0.09 now.

The lutetium is not a cure for the cancer but is a very effective treatment of the metastasis. Most of the patients have some response to the Lu 177 treatment, some have such a tumor load that there is not too much overall improvement of the patient. Those are the patients I believe you refer to when you say , no everybody respond to Lutetium.

We should remember that the initial patients treated with Lu 177 were patients who were practically dying with extensive number of bone and soft tissue metastasis after failing chemo etc. etc.

The same that happens with Lu , happens with chemo and or ADT. None is a cure for metastatic cancer. Even patients reaching ,with conventional treatment , a PSA below 0.05 (considered no evidence of disease) eventually relapse.

My tumor load was low. My PSA at treatment was 0.8, but even with that PSA there were the same metastasis I had when my PSA was 10.

Metastasis were diagnosed in August 2016, I started ADT by the time of going to Germany the PSA was 0.8. The Germans did another Ga 68 study before treatment.

I though it was not going to show any metastasis but to my surprise the same metastasis I had with PSA 10 were present with PSA of 0.8. I believe that these metastasis were all castration resistant and they have not been affected by the ADT.

I am in ADT, when my PSA start to increase and reach 0.4 I'll have another Ga 68 PSMA study. If there are metastasis I'll have another Lu 177 treatment. One can have up to 6 treatments.

Personally, the availability of the Lu 177 treatment have put to rest any fear that I will die of PC, even having in consideration that my PSADT was 50 days.

Anything, please let me know

Raul

Alinur profile image
Alinur in reply to

Raul,

ADT doesn't remove metastasis.It stops them growing.They Will appear maybe,with less vascularization and less PSMA radiotracer uptake.That is why they Showed in your PSMAPETCT.

Where did you haveLu177treatment.which clinic inMunich?

Thanks

ARIES29 profile image
ARIES29 in reply to

Hello Raul,reading your reply to Chask you mentioned going to Germany,Munich for treatment. I am not happy with what is available here in Australia after beign told today that there are other drugs available but the government will not subsidise them. I have had the lectin & cosedex & it works in getting the psa down but at what cost of life quality.

Jeff54 profile image
Jeff54

Remember one thing Ralphie you never go through something you do for nothing!Everything you do is helpful to your disease! And I am living proof of that! Listen to your Doctor and Nurses they will guide you through every step of your treatment.Good luck and tell us your progress. God Bless!

RalphieJr64 profile image
RalphieJr64 in reply to Jeff54

Thank you Jeff

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