So, after prostatectomy in 2013 and SRT in 2015, my psa continues to climb. The last 6 month rise was from 0.82 to 1.80. A bone scan found no mets; an abdominal/pelvic CT scan showed "some small lymph nodes are noted in the right iliac chain measuring up to 10-11 mm", the size of the nodes being suspicious, but no bone mets. A follow-up Aximum scan showed uptake in some obturator nodes. I had a visit last week with an MO who suggested Lupron plus one of the following to be decided based on my blood tests: Zytiga, Xtandi, or Erleada. I will start with Lupron on Tuesday. This Monday I will also consult an RO to determine if radiation is an option; I will also get him to pin down the number and exact lymph node group (iliac or obturator) from the original scans. Several of these drugs have some negative impact on blood pressure (which I have) and the heart. I'm seeing a cardiologist and doing a stress test next week to rule out any heart problems. Have any of you had any blood pressure/heart issues taking any of these meds? I'm wondering if any have less negative side effects than others? Are there any questions I should ask the MO or RO? Thanks for any help!!
Starting ADT: So, after prostatectomy... - Advanced Prostate...
Starting ADT
Zytiga can raise BP if you don't take enough prednisone with it.
The number and location of the affected lymph nodes are only useful to know for a boost dose to those places, but all pelvic lymph nodes have to be treated. The Axumin scan can only detect cancerous LNs larger than 5 mm, but there are a lot more where they come from.
Would knowing there are more, smaller cancerous LNs change the current plan of ADT and possible radiation?
It's not something you can see. You already know they are there. You have to treat what you can't see as well as what you can see.
Good job seeing a cardiologist. If the pc doesn’t get us , the heart is next in line. A heart healthy Diet and exercise are called for us all.
I was curious if your MO or RO considered trying to find you a clinical trial involving psma scans (psma pet) ( clinicaltrials.gov/ct2/resu... )
or did you consider going to the few places that are fda approved in the USA for that newish scan?
I will ask about a PSMA, but what would having a PSMA scan do to alter the current plan of ADT and possible radiation that was the result of the Axumin scan. I know it could possibly find other mets, but would it alter the current plan?
Better scans=better information =better treatment. I do not know if it would have altered your plan, which sounds excellent, but if they dont find a bony met that would make me feel better....and if they did, perhaps months or years before it appeared on a traditional scan, you could have it eliminated while they were in the neighborhood. I wish you well ekirkland. I am not that far behind you.
Welcome aboard the adt train . It can push the pc down with luck . Then it’s man overboard or man down, it surely is not man up . You will get in touch with your feminine side. You can keep rolling for years without t. Look at me a castrated bastard but still kicking beyond what docs projected. Do whatever you’ve got to do to save yourself . Live happy and healthy as your hormones are taken from you . That’s the price we pay . Adt was rough for me the first three years After that I gained I don’t give a hoot attitude towards suffering. We all suffer. Finding daily happiness while in the storm . Good luck
👍
I love those last few sentences. My philosophy is becoming - more activity to push the medicines around and seeing side effects as confirmation the drugs are kicking ass. Peace.
Well then? I hope that you get the confirmation that you seek. It Is true , we take the
Good with the bad . The good is life itself the bad is the dammed side effects... Keep moving before the rust sets in on us. Good luck . Live well!
"plus one of the following to be decided based on my blood tests: Zytiga, Xtandi, or Erleada."
Do you know what blood tests they are giving you in order to choose which treatment?
One treatment they can give you is pelvic radiation. You may want to enquire about that. It wouldn't be appropriate if you have metastasis beyond the lymph nodes. But may be an valid option if not.
They took about 4 vials of blood; some of which were for psa, testosterone, dna/genetic testing, and most likely general blood chemistry; I'll get the results Tuesday. I will see an RO on Monday to discuss the possibility of added radiation (I had prior SRT in 2015).
I used Zytiga yes my blood pressure went up good luck to you I’m at MDAnderson now starting Monday
My husband has had heart bypass, high BP and early Parkinson’s. He was on Lupron for 3 months before he started radiation and a year after. His PSA went to undetectable... all good. Side effects were muscle weakness and memory problems. Stopped the Lupron because of studies showing the longer on Lupron the more likely dementia or Alzheimer’s. We will watch his PSA and may need to start Lupron if it goes up above 1. What’s worst- the disease or the cure? I’d say go for the Lupron.
You might consider Casodex. I if fails you can move on to zytiga, then xtandi, etc. Casodex is an older drug with less side effects.
Excellent. A topic you might discuss with both RO and MO is the concept/possibility of micro-metastasis. Best of luck in healing from this disease.
Gourd Dancer
After my prostatectomy in January 2020 (my PSA had been 12.6 and my Gleason score had been 9), I had my first Lupron shot that May (3-month dose) then had another in August (this time a 4-month dose). I wasn't crazy about the side effects that everyone else reports: hot flashes (especially at night), weight gain (in 3 months I put back on the 20+ pounds I had lost in the previous 6 months, extreme fatigue late in the day, all kinds of aches and pains ALL day.
The Lupron started to 'wear off' by December, around the same time as I was finishing my 39 days of radiation, so we took another PSA checkpoint then. I guess the Lupron did its job, and since the results of that test ('undetectable') matched my previous 3 post-surgery test results, both my oncologist and urologist agreed with my suggestion that we could get by with just monitoring my condition with regular PSA tests and suspend additional Lupron shots unless my numbers began to creep upwards.
It took about two months for the effects to be reduced noticeably, but my March PSA results were still 'undetectable' and the doctors continued to agree with my preference to NOT resume Lupron unless the PSA scores move up. Fingers crossed!
I also had my prostate removed in 2013. For a while PSA was undetectable, but then started to rise. That was about 2016-17. Had a bone scan & found many mets.
I went on Lupron & Xtandi. PSA dropped to undetectable. That was nice, but I hated the side effects. About a year ago I decided to take a break from the meds & see how I felt. The MO approved but said to get regular PSA tests. So far undetectable, and life is much more pleasant . When PSA starts to rise again I'll have to decide between quality & quantity.
To answer your question about ADT and antiandrogen SEs, darolutamide (as far as I know) is the only AR blocker that doesn't cross the blood/brain barrier, and thus doesn't cause depression. That may not be a big deal for you, but it was for me.
Greetings ekirkland (affiliated with costco by any chance?)
Just remember we sometimes have different reactions to meds (and women). Next here comes my questionnaire:
Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 05/15/2021 6:37 PM DST
Most of that information is listed in my profile. I’m being treated at Urology Centers of Alabama in Birmingham. Dr Tully did my prostatectomy via de Vinci. Dr Hamilton is my MO.
I did not have prostatectomy. I had 6 rounds of chemo. Yes, I am taking Lupron and Xtandi. These meds did not increase my blood pressure . I did not have any heart issues. The side effects I had were fatigue, hot flashes especially at nights, loss of muscle mass. I have been on these meds for about 4 years now, and the side effects have decreased. By the way, my PSA has decreased from a high of 171 to 0.09 now. My MO tells me that there is nothing I can do about these side effects. His suggestion was for me to do more exercises.
I would ask about relugolix, a relatively new ADT drug that is taken orally, and offers extremely rapid T recovery if/when you take a vacation. It's likely that this will be a very big deal do you when it happens.
I saw my MO and RO this week and here is the plan: 1. Meds will be Lupron and Zytiga (plus prednisone) and 2. radiation therapy to all pelvic nodes. I got my first injection of Lupron yesterday; a 90-day dose. So far no side effects except the injection site was pretty painful last night. How long till onset of any side effects? For those who have used Zytiga, what was your out-of-pocket cost? Apparently, the MO is trying to get approval from the insurance company; United Healthcare -Medicare. Radiation will start in about a month whenever they can fit me into their schedule. I will have a total of 25 treatments.
My Urologist's office had someone that got me approved for a grant through The Assistance Fund (TAF) that got me a no cap grant for the rest of the year, and it goes with me even if I choose a different treatment plan outside of the urologists practice. My group is the Advanced Urology Institute in Tallahassee, but you might be able to get someone on your office's staff to contact them for grant info.
I started with monthly Degarelix belly shots starting in May, daily radiation in Sept and Oct., then switched to 6-month Eligard shots in triceps area tissue in Dec of 2018 to the present. Don't like muscle loss and skin changes. Aside from that I tolerated the shots but had some digestive issues for a short period of time during radiation which disappeared shortly thereafter. Recently started XTANDI and hopefully the minor buzzy felling will start to fade as well. My suggestion is to read the medication flyers and be careful to become self-aware enough that if a side-effect hits you you're prepared. For example, one of the potential side effects is falling - I watch myself to rise slowly, and when I walk I somewhat anticipate that if I were to fall what would I do and to not walk unconsciously like before - I make sure the path is well lit and that I won't be stubbing my toe etc. At least until I know that if I fall it will because I was a dumb-ass and not because of a side effect. Good luck.
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