17 years of various treatments

[Grumpyswife]

Hi Y'all, Regarding my husband, I have dragged him through 17 years of various treatments--all failed. However, he is still alive and kicking after all these years and we are grateful for that. He has lived a mostly normal, unaffected life through it all.

He had a laparoscopic prostatectomy done in 2/2002 by Dr. Arnon Krongrad in Florida. That was 10K out of pocket because out insurance didn't cover such a procedure.

Within 4 years his PSA was rising so he had the 36 days of radiation done at U of Minnesota. We neglected then to take the advice of Dr. Grado and didn't have any brachytherapy done right after the course was completed.

He participated in the pomegranate juice study and all the while his PSA was slowly rising.

We finally had Dr. Grado do the brachytherapy in 2014 after a C11 acetate scan done at KU showed activity in the prostate bed. His PSA went down initially then started to rise again within a year.

He had another C11 acetate scan that showed spots in his left lung. The U of Minn did a wedge resection of the lung in 12/2015 and removed a couple of cancerous lesions and a lymph node that were positive for prostate cancer.

He had the Provenge treatment in August-October, 2017, but that doesn't affect PSA.

After the lung surgery he finally gave in to Lupron which didn't work. Casodex was added and that seemed to bring the PSA down a bit for awhile but he was up to taking three Casodex.

We moved to north Georgia and the new doc decided to stop the Casodex as an experiment to see if the PSA would fall. It didn't fall so the new doc suggested Xtandi. That surprised us because every other med oncologist suggested Zytiga with steroids. So I did research and got a second opinion.

Meanwhile, an Axumin scan showed two spots in the lung and one near his trachea and espophagus. The radiation oncologist felt it too risky for stereotactic on those areas. He seconded the Xtandi as a systemic treatment. He suggested longer term radiation to the lung spots as the failure back up plan.

Hubby has been taking Xtandi for about a week now with no side effects so far. We go into med oncologist end of month for followup.

Always open to suggestions especially those covered by insurance! We are also looking for good docs in the north Atlanta area.

Thanks for reading this long post.

[Hidden]

I am also a long time survivor of metastatic PC. I think that a possible avenue of treatment is Lutettium 177.

If the cancer is PSMA positive (PSMA is a protein present in the inside and surface of the cancer cells) 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 is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA got Ga 68 PSMA PET/CT:

clinicaltrials.gov/ct2/show...

My treatment was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.

The treatment kills cancer cells castration resistant and hormone sensitive in the bones and in soft tissues. It is asystemic therapy. Very well scientifically documented treatment.

Anything please let me know.

Raul

[Grumpyswife in reply to Hidden]

Thanks Raul. I will do the research and see if he is eligible to get in to one of the studies.

[Grumpyswife in reply to Hidden]

Hi Raul, Are you aware of a limit on the number of PET/CT scans that can be covered under Medicare?

[Hidden in reply to Grumpyswife]

I believe there is not a number. I think it all depends on the reason the doctor ordered the test. I know that in the GA 68 PSMA they do not pay for the Gallium 68 PSMA ligand since it is not approved by the FDA, but they pay for the rest like in a PET/CT that the radiactive compound is approved by the FDA.

[Grumpyswife in reply to Hidden]

I looked into the Lut177 trials and tried to find a knowledgeable doc nearby.

First, my husband would have to fail on Xtandi or Zytiga.

The Galium scan is partially covered by insurance except for $4,830 that would not be covered as experimental and not FDA approved.

The treatments are not covered by Medicare or insurance. They cost $10,494 per treatment and 3-4 treatments may be needed. They would know after the third if a fourth is needed.

I will remain hopeful that Xtandi works in my husband's case and continue to look for more affordable treatment options.

[YostConner]

I’m glad he got on the Xtandi. Fingers crossed.

[Grumpyswife]

2.5 hour drive would be worth it. I will see if he is a preferred provider with our insurance. Thanks for the tip.

[Hidden]

what was your impression of the auxmen scan as opposed to the c11 acetate scan?

[Grumpyswife in reply to Hidden]

The progress in imaging agents is amazing and Axumen has the advantage that it is much easier to produce. I want to go with the best available scan and just hope that the readers are well trained. There must be a learning curve. Once you get the results the real work begins figuring out which way to go as lots of the doctors are not up to date on these scans.

[eggraj8]

Seventeen years means that all treatment has not been a failure. I wish I can do that. I have Mets in lungs. I am doing Chemo Docetaxel and Carboplatin along with ADT. That is MSK standard treatment. It has worked for me for the past year. Good luck

[Grumpyswife in reply to eggraj8]

Yes we have accepted he won’t be cured. Good luck to you as well. This latest MO didn’t think chemo appropriate yet and suggested Xtandi. I will ask him again why not chemo earlier while husband is stronger. What is MSK?

[eggraj8 in reply to Grumpyswife]

MSK is Memorial Sloan Kettering Cancer Center in New York City which is where I go and is considered a leader in cancer treatment and research. Chemo treatment is tough but it works for me. If something else works good. Docetaxel is good for PC in general while combined with Carboplatin is good for the cancer which spread to lungs. Best wishes

[Reptale]

Wow! 17 years with stage 4 Pca! Got to say that all those treatments have achieved something remarkable. I know it has been a scary and painful 17 years and I appreciate that you’d like to see your husband’s disease finished off, but compared to most, 17 years is a real success story. Advanced Pca is not curable by any means we know about yet, but the longer you two keep going, the greater the chances for new therapies to be discovered. My only advice is take it one day at a time and enjoy the heck out of every good day your husband has.

[Grumpyswife in reply to Reptale]

Yes I thought 17 years was a long time until we went to a seminar last year and met men who had been dealing with prostate cancer for 21 years. They were mostly from The Villages in Florida and had a strong support group. They were willing to travel a long way to gain knowledge and some appeared so healthy that one would never guess they had the disease.

That conference was very invigorating for me as the caregiver and main researcher in our house. Honestly, before the seminar I had been thinking we would just coast on Lupron for awhile and I would take a rest from investigating treatments, etc. Hubby is 74 years old after all, and lots of his friends are gone.

However, seeing those strong 80-something guys got me recharged for treatment ideas. We are finally both collecting SS and I want him around for as long as possible.

[Winston40]

I had surgery in 2000. I have had several treatments including two 38 rounds of radiation. No one advised me that a second round of radiation could possibly wreck my immune system. Fortunately, my immune systems survived, but a patient that I met at the cancer center, who previously had brachytherapy, was not so lucky. He passed within 6 months after finishing the radiation treatment. I spoke with his doctor who told me that the numbers for immune system were drastically low and that he no longer responded to drugs. I’m pretty sure that most people survive without incident, but there is some risk involved. I think that I read somewhere that it is possible to measure a patient’s tolerance for additional radiation treatments. At the very least, I would check the strength of my immune system. I also would discuss the subject with my radiation oncologist.

[Hidden]

Excellent extension of life. Keep going. Based on mets 14 years ago, chemo as an aggressive therapy works best early when the body is strong and the tumor burden minimal rather than late. This was the premise of my research medical oncologist; and I am so glad that I participated in his six month chemo trial early on. There are a lot of new treatments available, some covered by Medicare, some not, take do a good job in prolonging quality life.

All Medical Oncologist are not created equal. Find one that specializes only the advanced prostate cancer; preferably in research. You will find these people at major medical schools in academia where they spend their time in the classroom and lab/research more than they see patients.

Enjoy life.

Gourd Dancer

[Jrb12]

Hi, prayers to you both. I have bern on Xtandi since August with my quaterly Lupron and Xgeva every 6 weeks. My PSA, last check was .036 <1. I'm not sure how your getting insurance to cover xtandi but for me it's helping with little side affects. I hope the treatment is successful for your hubby. Richard

[Grumpyswife in reply to Jrb12]

I was pleasantly surprised that it is a $50/month copay. Just hoping it works for him. I love your numbers.

My hubby seems to stare off into space more lately. He has never been a good sleeper up all night peeing but we will get some under the tongue melatonin for him to try recommended on here.

[KingRasP]

mjbach, thanks for sharing, This gives us hope.... 7 years 2/14/18.

Best wishes for better health and longer life .💚🙏🏽💚