I wrote 5 month ago asking for opinion on the Sex Hormone Binding Globulin possible effect on the testosterone available for PC cells. I had prostatectomy in 2004, external beam radiation in 2006 when PSA increased from 0.064 to 0.89. Resulting PSA 0.077. PSA 2.2 in late 2009 prompted an evaluation by oncologist Dr. Robert Amato. No mets observed in organs or bones. Started ADT (Lupron) in early 2010. Diagnosed with non Hodgkin lymphoma at mid 2010. PSA 0.2 through the lymphoma treatment with no ADT. Started ADT again in January 2012 PSA 2.0. Lupron reduced PSA to 0.03 -0.7. Lupron less effective starting mid 2015, urologist continued ADT until late 2016, PSA had risen to 3.9. In my ignorance with no T in sight, I elected to have no more treatment until some T showed up. PSA 5.7 October 2016. I had PSA and T measured each month at my expense. In August 2017, 14 ng/dl T showed up on the report and I thought that rather low and no problem (I mentioned my ignorance) and by December T was 83 and PSA 20.3. I went to see the oncologist who successfully treated the lymphoma. He immediately started Lupron again and Casodex when PSA remained in the 20. He recommended Zytiga/prednisone when PSA did not decline. I did not mention my age is 87 with no pain, no symptoms and feel quite good with an active exercise habit. The prospect of taking on drugs with potential nasty side effects and impact quality of life have made it a tough decision. On a recent determination, my T is less than 10 ng/dl, DHT 8 pg/ml (range 112-955). I do feel the need to get PSA down and after studying Zytiga and Xtandi have elected to go with Xtandi.
The CT scan ordered by Dr. Amato in 2009 revealed a lymph node in the aorta caval space of 36 mm. A CT scan this year showed that lymph node is 3.5 cm x 2.5 cm causing mass effect on the adjacent inferior vena cava area. The bone scan impression comment, "possible metastases in the sacrum and proximal right femur. This would be better evaluated with pelvic MRI."
I have tried to provide enough information to ask the opinion of the impressively knowledgeable men on this web site (I read everything posted every day) as to what is the likely source of the elevated PSA. Could the large lymph node be the source or is there enough T and DHT to cause it. Am I in imminent trouble and have been fortunate to have no pain or symptoms. Is Xtandi with Lupron a reasonable choice of further treatment.
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MC1976
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I had Lupron and Xtandi when my PSA started to rise during Taxotere chemo. Brought PSA down. Finished chemo. Off Lupron acct. orchiectomy but still on reduced Xtandi (120 mg frm 160 mg) PSA still dropping and VA doc and oncologist declared me in full remission this week. They do work well together.
Good question. My understanding is Zytiga inhibits a protein which form DHT and since my DHT is low, Xtandi attack of the existing cancer cells AR would be more effective. This could be false logic, but obviously I own it. My current MO, not Dr. Amato, gave me a choice and I will admit that the need for prednisone with Zytiga played a part in my decision.
My T was at 7 and DHT undetectable when PSA started to rise. Xtandi pushed it down again. Still pushing it lower now at 0.117. I was already on pred. with taxotere. Chemo done 19 weeks ago still on Xtandi but toxicity issues forced reduction to 120 mg dosage. Still having issues but livable for now. May have to drop again. , alternate 120 and 80. We'll see. Drs say I'm in remission, all soft tissue mets disappeared and two of three bone mets detectable but hardly active. Largest bone met dormant or dead. Blood tests every 6 weeks on low dose Xtandi.
I hope Xtandi will do as well for me. Good to know that lower doses of the drug will remain effective. If the 160 dose of Xtandi creates a significant quality of life issue, better believe I will be requesting a reduction of dosage as you have done.
For me I had less side effects with zytiga first, also I have seen a study of more men responded to xtandi after zytiga , than did they respond to zytiga after xtandi. Xtandi IMO creates more fatigue, possibly with your exercise you can beat that SE. Are you still with Amato, I know he is a great MO. I wonder if dutasteride would lower that DHT. The only known side effect I know of for dutasteride is that it can grow hair on a guy with male pattern baldness.The ultimate goal would be to shrink whatever they see on a scan, and until confirmed they do not even know if it is cancer, I have nodes showing on scans since dx in 2006.
I appreciate your comments. I may rue the day for the Xtandi selection over Zytiga for the reasons you mentioned. I had a consultation with Dr. Amato in 2010, and at the time had an aversion to chemo drug treatment in general so declined the treatment he proposed after reviewing my scans. If I had not opted for ADT treatment with Dr. Brian Miles who performed the surgery instead of Dr. Amato's proposed treatment, I might not be still fighting PC. I will investigate dutasteride for my situation. Would not mind growing some hair on the top as well as controlling DHT.
Wow, I recently read about E2 in the posts and made a note to look into that. Your suggestion on E2 would cover another possible problem source. I have never had E2 determined. You are right about free T, mine was 2.7 when total PSA was 20.3. I have no idea of how long with my PSA in the 20 level I might expect pain caused by mets. Thankfully, I have no pain from any source at the present time. I have learned so much from you and the other knowledgeable men on this website and greatly appreciate the willingness of all to share valuable information.
Your PSA is rising because castration resistance is setting in. Xtandi is a great treatment, I think better than Zytiga, but insurance often won't shell out for it first.
I have been on a similar path. I had surgery with Dr. Brian Miles (2016) and saw Dr. Amato in Nov. 2017 with rising psa. I thought Dr. Amato had stopped seeing any patients due to his own health issues?? My psa is currently 0.4 -- I'm only taking Avadart my psa is hoilding steady at 0.4 for 7 months -- have you considered lu-177 in Germany or radiation of lymph nodes with adt + Zytiga. Those were the options suggested to me.
You are doing well, congratulations. Yes, I heard Dr. Amato had postponed a trial because of his health. I have not considered lu-177 radiation of lymph nodes. That could be a valid treatment for my problem. However at age 87 my health goals are narrowing down and I will try treatments which are simple to conduct.
Well now, thanks John your comment brought a smile and brightened my day. Believe I will go to the gym push some weights around and play racquetball to burn some of that high octane.
Now at $3.00 per gallon, don't burn off too much.....
Good Luck and Good Health.
j-o-h-n Friday 06/29/2018 2:53 PM EDT
MC, first congratulations on attaining the ripe old age of 87. Truly an achieve and probably due to some great longevity genetic profile in your family!
Second, I am with Dr A. I started with him in 2004 with mets to my spine and still see him (his people). I am one of his "stars" from his six month chemotherapy-hormone therapy trial in 2004. I am 71 and was able to stop Lupron injections in early 2010. I remain undetectable since 2005.
We all have personal choices to make in our lives and I would never criticize one's choice. I know nothing about the new "silver bullets" in the arsenal to delay onset and extend life. At your age, I am guessing that treatment options are limited. Enjoy life, my friend and brother PCa survivor. This disease is truly a bastard. Most of the guys here have experience in the various treatment options presented to you. I, am not able to assist in that arena. I do have one question.
Do you remember Dr A using the term "micro-metastasis"? The minute cancerous cells that have escaped to the vascular and lymphatic systems unseen by most testing; yet explaining how cancer cells spread down the road. It is a logical explanation explaining re-occurrence.
Your abnormal lymph node which I believe is not accessible due to location seems to be the cause of further distant spread to the bone. Intermittent ADT has carried you forth almost ten years. I believe that most experience the same, but I really do not know.
As an aside, I last saw Dr A in clinic last December. He returned after his initial treatment for his health issue. I saw him and his wife four months later in passing while enroute to see his doctor. At the time, he was not in clinic and concentrating on research and duties as a Professor. I do not know his status today. One of this group's member has an appointment in two weeks and I have one a week later.
Anyway, I wanted to wish you many more years of life and possibly, because I am curious, about rejecting chemotherapy early on. You do not have to respond, it's really none of my business, but I am curious. I am also a proponent of early intervention of chemotherapy while the body is strong and the tumor burden is minimal. (Dr A's working hypothesis.)
Congratulations on your successful treatment of PC. Thank you for reading my post and providing the informative comments and your best wishes. Yes, I no doubt made a mistake in not following through with Dr. A's suggested chemo drug treatment. We have many decisions in life to make, which path to follow, and our future success and happiness depends on those decisions. In retrospect, I have made many good decisions on education, career, family in my life but no doubt chose the wrong path on some as well. At the time of my life when the Dr. A opportunity arrived, I did not know much about chemo drug therapy and what I knew was negative. Later, I was very ill with non-Hodgkin Lymphoma and had no real choice, either accept chemo therapy or die, and found out that it was tolerable and effective. Too bad for me on the PC treatment decision. In spite of that, I have subsisted quite well to date on the path I chose and only recently have faced a decision to take an oral chemo drug or probably suffer painful consequences. Stay tuned.
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