This is related to my posts about Lupron giving me intolerable and treatment resistant depression. The Lupron did work so far as bringing my PSA down to essentially zero which should mean it is suppressing the cancer. It is the front line SOC (Standard of Care) - FDA approved, proven in practice, etc.
I am changing my MO at the clinic I go to, primarily due to communication and trust issues (from lack of communication about the depression side effect). He has told me that I would not be eligible for any other therapies, especially anything hormonal - such as the new 2nd generation meds.
The new MO I start with later this month gave a pre-condition - I cannot ask her to give me any therapies other than ADT, which I can't do. She said that anything other than ADT would not be SOC and she did not want me to start begging her to do other therapies that she would not be able to start me on. Mind you, this is before I have even met her. She was highly recommended to me by another MO who knows my personality very well and has tremendous respect for this prospective MO for me. I think she will be excellent for me and I do understand the situation I am in and the one she is in.
A lot, if not most all, of new therapies that are out there, like Lutetium 177 are not FDA approved and not yet SOC. Theoretically it should not cause me depression and looks extremely promising. There are several others, like genetic therapies. I don't have any known PC mutations though.
This is the Catch 22. I am hormone sensitive which means I am not classified as castration resistant. CR is used as a major prerequisite for FDA approval of SOC therapies. So I am not qualified for any (that I know of) of the new therapies. Other than a trial, I can't be treated.
I am going to ask what the SOC would be for me going forward but I suspect it will be "wait and see", meaning how soon I get worse symptoms and be recommended for chemo and bone therapies. I also have metastatic PC in my lymph node system from neck to ilia. Not a serious case of metastasis, but it certainly will get worse. My PSA just went from 6+ to 8+ to 12+ the last 6 months. Originally at radical prostatectomy, I was Gleason 3+4 with extensive spread outside the prostate margin. And involvement of all the other parts except the bladder - seminal vesicles, etc.
Oh well. I will be eager to learn about other options with my new MO. I suspect I will get many recommendations from this community. Please don't propose I travel outside the US to get non-FDA approved therapies. I'm 72 and I am at peace with dying and don't intend to spend my savings and put my wife into semi-poverty before I die. I also will not be in to therapies with no scientific/medical support, i.e. trials, peer-reviewed research, etc.
But I know everyone on here means well. A good community.
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Not sure if this came up in any of your prior threads or posts (and I meant to mention it but don't think I did): it is POSSIBLE that the depression arose not from the suppression of T itself, but rather from the agent used (Lupron).
Some men have a bad reaction to Lupron without reacting as badly to ADT via another agent (Firmagon, high-dose estrogen, Zytiga, etc.) or via surgical castration.
Also, Lupron usually locks you in to low-T for 3 mos. or more. Not so with other methods (with the exception of physically losing your balls, of course). So you could go into an alternative knowing that the possible low-T depression could be cut to a short duration -- even if by administering a dose of restorative T via needle, gel or patch. Maybe to consider?
Not sure if you could get it prescribed, but a recent trial (PATCH) conluded that quality of life was improved for men using transdermal oestradiol (tE2) vs. luteinising hormone-releasing hormone agonists (LHRHa) for androgen-deprivation therapy (ADT). Something you might look into.
If you have metastases, you could use chemo or Lu 177 PSMA . Perhaps you could qualify for one of the clinical trials of Lu 177 PSMA for castration sensitive cancerclinicaltrials.gov/ct2/resu...
They would still want you to be castrated. I believe he should try Firmagon monthly injections first. He doesn't have a high volume metastatic disease.
Can you try bicalutamide alone without ADT? It will not be effective for very long time and you should stop it when your PSA start rising again otherwise bicalutamide will start fueling your cancer.
That's what I did, when I was hesitant to start ADT (also because of depression). I only got 6 mos out of it.
But strictly speaking, bical 150mg monotherapy is not SOC for metastatic PC in the USA. That's an off-label use. So if the MO is strict about what is considered SOC, that won't cut it.
I only mentioned it because of the very specific situation. Otherwise maybe only 50mg is sufficient per day. You don't need 150mg per day.
The other option is to start Enzalutamide. That would be even better if you can tolerate the side effects of the Enzalutamide. I am not recommending it but considering the specific situation it is better than no therapy at all.
Your not alone. I’m in the same boat. I went off lupron 4mo ago but stayed on 500mg of zytiga. I started Zoloft and some non soc treatments. QOL isn’t fantastic, but way better than before and I no longer want to jump off a bridge everyday. I pray that this SOC changes in the future as insurance only pays for SOC whether it’s tolerable or not. It’s a very lonely place to live in. Good luck friend.
Sorry to say, I don't feel so lonely and isolated having found a small few who are in the same boat as we are. One of the things I am amazed at is that I used to see depression listed as a potential side effect of ADT, the latest articles don't mention it in the main list. Just from this forum and various research articles I know that it is still found and can be very serious. I also suspect that it is underreported by many who suffer from it. I suspect some believe that just having a diagnosis of AC "causes" the depression and not the ADT which is the SOC to start and seemingly for life.
I am not nearly as depressed as I was when I was on Lupron (just one of the first-line ADT meds). My QOL is far better. I still have lingering increased depression but it is somewhat different in frequency of the cycles and the depth and recovery periods. My MO now recognizes the problem as a real thing. What he will do with that knowledge I don't know since some of the things he has told me show he was aware of the potential catastrophic side effect.
Good luck. We are definitely between a rock and a hard place as described in one old saying.
I am in the same boat as you,cannot handle ADT and not other options given unless I become CR. Already had RP, Chemo, and Radiation. My Doc asked me what it would take to go back on ADT and I bluntly told him I will never go through that again. I am finding there are more of us out there that cannot handle ADT and our concerns are the same. Maybe eventually they will will let us bypass the CR rating to move onto other therapies.
Maybe you could get Degarelix for a short time i did not have any problems with ADT at first. Only now after 4 years on it I feel the effects. Try monthly injections of Firmagon and you can always stop it. I don't have any hot flashes. You should just weight lifting.
Thanks for the recommendations. I'll mention it to my MO. From our previous discussions and my own emotional feelings, I am going to be very resistant to trying any ADT med, ever again. My experience with Lupron went almost 4x longer than it was supposed to. And my side effect started within 2-3 weeks, which is almost immediate. Based on that alone I suspect our issues are not the same. I could be wrong but what I went through was like getting burned with napalm and trying to get friendly with fire. The Pavlovian reaction is overwhelming to me.
Can you please fill out your profile? It is difficult for us to reply properly. Just a short summary of treatments and the lab results. How your PSA, ALP etc. is moving. I realized that some of us are confused without the short profile.
I am replying to multiple members and some have similar problems like you that can't tolerate ADT.
I just reviewed my profile and I put in a couple of other existing and prior conditions that I have had and been treated for. They do not apply to my PC near as I can tell. I am not going to try and put in "My Story". I can answer specific questions if I feel they are appropriate. I am not going back to my medical history to list all my PSA test results. I can tell you that, in general, they were much higher than many of the ones related by many on this site. My current PSA is 12.5 and that is up from 8.4 three and a half months ago. I will have my next PSA in six weeks from my last one since it is rising and might be rising faster than known. Since I am not receiving ADT as the primary SOC I expect my PSA to continue to rise. The only question is how fast it will be rising.
I have had one PET/CT and three bone scans all with contrast and all were "negative". I had a PSMA PET/CT scan in April. It showed mild to moderate metastasis in my lymph nodes in the ilia, periaortic, and supraclavicular regions. My MO is not overly concerned with these findings. He said that I may have had them before my first diagnosis of PC or they could have developed at any time since then. He said that there is no reason I need a repeat PSMA PET/CT scan and that regular monitoring of my PSA level will give the appropriate information as to the progress of the disease.
Since I am severely intolerant of ADT and I was hormone-sensitive from the start of the Lupron injection but I refused to get another one due to the dramatic impact on my QOL, and potential suicide actually since it made my depression so bad. I was also bedridden for approx. 6 months following the injection. My muscles wasted away and I needed PT to learn how to get my balance back and walk more than a block at a time.
My MO says that he has no other therapy that he would or could prescribe, except for chemo at my option, because I was hormone-sensitive (PSA from 0.05 to 0.15). My PSA started increasing about 6 months after my injection and has been steadily rising since. I have had a second opinion on this.
While I appreciate the comments and suggestions by others on this forum to try other meds, I am going to follow my MO's recommendations. I do my own extensive research and follow new peer-reviewed research papers and other sources of information from what I consider to be reasonably respectable sources.
QOL is my overriding goal for the duration of my PC. I will not lessen my QOL in any significant way only to prolong my life for 2 months or 2 years. I do not envision going in to a facilitated living home in any case as, in my opinion, that is too much of a hit to my QOL. To each his own. I probably won't do chemo but I may change my mind on that. If some really promising therapy comes along that I can get a prescription for then I will most likely do that if it doesn't damage my QOL too much. The one that I think would be the best from what I know of current trials and research would be something along the lines of radiation via PSMA molecular attachment (or some other type). At the moment I am not allowed to get that due to FDA and insurance issues. For those who have tried other therapies from which they have achieved successful results, I am very happy for you and hope that it will be good for your QOL and mortality in whichever way is important to you.
I think that professor Anthony Joshua in Sydney had a clinical trial with I believe some antifungal medication for people who don't want to have ADT. Im not sure if it is recommended for advanced cancer what you have.
You can search the clinical trial site and contact him. I will also try to get more information.
The trial sounds promising. It would not be SOC in the US for probably at least 3 years and may be more. I understand why they have to be cautious about new meds with extensive trials but if it is as good as it might be you would hope they would give it a special approval to save lives. Thanks for the article ref, and to Seaside for the link.
I'll take another look at my profile. I did realize it was so deficient. I'm not going to relate changes to my PSA unless it is related to a specific issue that I am bringing up or responding to. It changes month to month. But I'll look at it. Thanks
I tried to update my bio on my profile again. Hopefully it will stick this time. If anyone has any questions please contact me and I will try to give the answers as I can.
When will the generic Abiraterone be available here in Australia?
I believe that I read on some cancer research site the information that the generic version of the prostate cancer drug Abiraterone will be available in 2022 here in Australia. Do you know anything about this?
Because of my extreme bad reaction to ADT (very first Lupron injection), I will not receive any other ADT which means I will never be eligible for any castrate-resistant meds (2nd gen or otherwise). I will also not be recommended or prescribed any radiation therapy for my moderate lymph node mets. Could get radiation for pain causing bone mets later if they develop. I will not be prescribed any additional PSMA PET scans. I will get non-PSMA PET scans as well as bone scans. My PSA will be monitored every three months and then more often if it increases faster or higher. I was offered only chemo (at my option) suggesting to me that chemo might help or it might not. It will certainly have negative side effects and for the time being I have decided to not get it. I was tested for DNA mutations and none found.
So for me I am only eligible for chemo right now. I will be investigating the side effects of doxetaxal to provide more info to make a future decision. My MO says that given my current status I may have 10 more years, or not. It's wait and see. Perhaps new therapies that I might be eligible for or just palliative care at some point.
I wish you good luck and success with your upcoming experiences.
Your oncologist should just write the diagnosis that you are castrate resistant and you can than get your Xtandi (Enzalutamide) on PBS. Do you understand? It is really so simple.
Well, that is not true. My diagnosis is since more than 2 years ago CRPC. Believe me if the professor of oncology write a diagnosis nobody is questioning that. You must be coming from an oppressive country if you believe so. Even Tall Allen said that the diagnosis is between you and your oncologist. Why do you believe that you have CSPC? You are not a doctor?
The only reason that they are not giving you on the PBS could be if you are not mobile enough to satisfy the prescription criteria.
ANDPatient must have a WHO performance status of 2 or less,
AND
Patient must not receive PBS-subsidised treatment with this drug if progressive disease develops while on this drug,
AND
Patient must only receive subsidy for one novel hormonal drug per lifetime for prostate cancer (regardless of whether a drug was subsidised under a metastatic/non-metastatic indication); OR
Patient must only receive subsidy for a subsequent novel hormonal drug where there has been a severe intolerance to another novel hormonal drug leading to permanent treatment cessation.
Well, it sounds like you are doing the doseydoe with the quandary of QOL vs keeping PCa at bay. An interesting jig. Like you, the Lupron shots kept my PSA really low (0.01) but made me feel terrible, so I took a break (vacation) for about 12 months before for my PSA slowly started to climb again. But my testosterone started rising as well and therefore I started to feel much stronger. So what to do? My Oncologist agreed having some testosterone is a good thing, so we decided to try just taking Casodex to maintain my testosterone and to try and see if it would keep the PSA low. Not necessarily undetectable, but low enough to keep the PCa from progressing. I figured it was worth a try as having some testosterone is really helping with my outlook on life. Maybe it could be an option for you. Cheers 😎 DD.
I appreciate the advice. I have to be honest and say that I am 1000% gun shy about even a minuscule possibility that I would experience the same level of depression that I had. I think it would be malpractice for my MO to represcribe it. And he said that he would not consider it. My experience with trying new anti-depressants is almost exactly what most who seem med resistant is that stopping some thing that is working, even is only a bit, often leads to very bad returning episodes since for a period. This can be weeks or months in titrating down (weaning off of) the current meds while not taking the new one so that you are not double dosing.
Also, my experience has shown that I don't seem to get relief from any anti-depressants, especially those that other claim were miracles for them. I even had worsening symptoms (one of the biggest labels for side effects for the meds), including suicide. Prozac was the first I ever had and I got to that point very quick. I was in a trial for interferon at that time and it caused depression for many people. I dropped out of the trial and I remember the doctor leading the trial at the University of Colorado Medical School actually screaming at me for ruining his trial.
I do wish that I had been given one of the estrogen therapies when I was going through my 11 month nightmare with Lupron. I definitely would have tried that. It was never brought up by my MO and for some reason I did not have any information on it.
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