PSA is still rising. After my initial, and only so far, injection of Lupron in April, my PSA had gone down from 116 to 1.9 in May but I've never reached the non-detectable stage and stayed at around 2.2 for the whole summer.
But from August onward, with Lupron out of my system it has been climbing rapidly every month with a PSA of 4.26 on Sep 8 at which point I asked my doctor to try me on Casodex 150mg rather than Lupron in case I'd have a better experience on it. Boy was I wrong in that choice.
Sep 18 PSA 4.45.
Oct 29 PSA 27
Nov 12 PSA 19.76
Dec 1 PSA 25
Dec 15 PSA 31.97
Jan 12 PSA 59
So not only did Casodex make me so sick that I had to go to the emergency room with breathing and cognitive issues on Dec 27 but on top of it, Casodex did not do anything to lower my PSA.
The oncologist absolutely wants me to try ADT once more to see if I am castration resistant or not (I've never reached a PSA below 1.9 on Lupron and my PSA only climbed on Casodex). I told him that I'm will to try Lupron once again because unlike the other drugs of its kind it is a known evil since I did get an injection in the past. He said that he will however be adding another drug on top of Lupron, probably Zitiga.
Despite having side effects on Lupron such as emotional roller coaster, fatigue, and heat flushes, the worse for me was depression and brain-fog which prevents me from doing an adequate job as a software developer.
So to compensate against this, I hope that a cocktail of Effexor, Coffee (I did not drink any back when I was on Lupron) and Concerta (long-lasting Ritalin-like) will allow the brain-fog to dissipate because I won't be able to keep my job if I am to be brain-dead for the next two years in case we go the radiation-ADT road which we'll decide after my next set of CT and Bone scans.
Any tips on things I could add to prevent brain-fog?
Or any tips on what I should expect on Effexor? I am not used to chemical drugs and was hoping never to have to take any and now it seems like the list keeps growing.
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Mascouche
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I understand exercise to fight bone loss, muscle loss and fatigue but do you find it fights off brain-fog? Is the trick to exercise just a few minutes before work? And for how long ?
Never experienced “brain fog” of any significance. Exercise, if you never disciplined yourself to do it consistently is tough to get started. Only advice I can give is at least 20 minutes of aerobic exercise a day. Don’t be too aggressive in your goals as you’ll end up hating it, become discouraged, and not following thru.
I've had bad brain-fog before. Just staring at a screen for minutes with no clue what to write and finding thoughts to be more tiring that physical actions. When tired physically, I'd just work slower but when tired mentally, I can't work at all.
Exercise for me is very important. Daily 90 min at least. But im retired. It helps my bones, brain, increases O2 to my lungs heart. Frees my mind and relaxes me considerably. I’ve been on Lupron(90 day) inj + Abiraterone 250mg and prednisone since Sept 2019. So far its working. PSA is 0.800 in Dec. And holding. CT scans and NM scans in Nov were neg. Try exercisibg when you can. Its well worth it.
I have had none of the SEs you have mentioned and I have been on Lupron and Zytiga for over a year and work a very stressful fast paced job in front of computers all day. I rode 4500 miles last year on my bike and walked 5-9 miles or ran 3 -4 miles the days off my bikes. I mention that for perspective on how much exercise may help. I am not sure how old you are or how fit now and clearly that makes a difference. My doc seems to think it plays a role. Wishing you the best.
Just thought about something.... If my PSA kept rising on Casodex this fall and it never dipped lower than 1.9 when I tried Lupron last spring, does that mean I am or have become castration resistant already? Don't want to spend time doing ADT and feel lousy while doing it unless something good is to come out of it.
Hmm... I was Lupron and Casodex until Brachy 4/19( 6 months) and then my MSK docs switched to Zytiga and Prednisone (no more Caso.) SE's too few to mention.
I'm tapering off everything this month. (Dx 8/18, G9 and no mets)
PSA has been <0.014 since 5/19 (monthly blood draw).
You are misunderstanding what castration-resistant means. It is a condition that occurs when the androgen receptor (AR) "learns" how to become activated in the absence of testosterone. One of the ways it "learns" is to make many extra copies of the AR. When that happens, it becomes more sensitive to even the slightest bit of testosterone than it ever was before. Therefore, it is more important than ever that you continue with Lupron or similar.
When the cancer becomes resistant to Casodex, it learns how to use Casodex to get activated. When that happens, stopping Casodex will actually cause PSA to go down. It is called "bicalutamide withdrawal syndrome." Casodex is only prescribed nowadays for a couple of weeks when beginning Lupron to prevent a testosterone flare.
You can try the new Orgovyx tablets. Exercise fights fatigue and gets more bloodflow to the brain.
Not surprised your MO won't deviate from SOC. I am using/have used bio-identical transdermal Estradiol (estrogen) cream to lower my testosterone while I was on an ADT vacation/break. After 19-month break from my Lupron shots I'm back on Eligard ADT shots. So, I can share my personal opinion. It seem to have helped me with muscle loss and I feel pretty good. It helped me with the fatigue and definitely reduced those hot flashes.
Like other men have said often, daily exercise and/or for me moderate yard work is highly recommended. One non-prescription bio-identical estradiol creams/gel I have used: amazon.com/Estrogen-Bioiden...
I read on the forum about folks fighting off the brain fog drinking "Prince of Peace 100% Wisconsin Ginseng Root Tea". I was curious enough to try it since I like tea. Much to my surprise it does seem to make me more alert while back on ADT treatment. But, that tea taste like crap. I had to blend that tea with my green tea to stomach it. I put the two tea bags in the cup. So, that's the best workaround so far. amazon.com/gp/product/B07MZ...
It does not take long for the bio-identical estradiol to work. I used to apply it two to three times per/day while I was just straight ADT via transdermal bio-identical estradiol cream and my T would range from 3 to 8. Now, while on Eligard shots again, I have backed down to only one application of the cream daily. Just enough to maintain enough estrogen to combat the side-effects of ADT.
As far as depression? For me, a few drops of good CBD in the AM & before bedtime daily and I'm calm and sleep like a rock. Good luck! You can do it.
I understand your concern about your prior brain fog experience with Lupron and how this affected your work. On the other hand, your increasing PSA is a serious matter, and your oncologist wants you to try ADT (probably Lupron + Zytiga?) again. So maybe your best strategy is to just try it again, and perhaps your side effects will be different.
BTW, to illustrate that everyone's reactions are different: At 78, and taking Lupron + Zytiga for two years, I still work as a consultant solving problems that involve running computer programs that solve a bunch of coupled fluid, heat transfer, and chemistry equations. A common task for me is to look through thousands of lines of source code to try to find why a calculation attempt crashed. I find that I get less fatigued doing that than when I'm sitting around thinking about my cancer.
I have had lupron for 3 years with only hot flashes, tried Casodex but when psa hit 12.5 and a slight uptake in one of the spine lesions I am on arbitrone 1000 mg, take an hour before eating breakfast and prednisone with my breakfast and supplements. The prednisone has increased my appetite which the oncologist says that is good rather than a loss of appetite. My psa dropped to 8,5 after 3 weeks, due for blood work on the 23rd to check , will have been on it for 7 weeks so hopefully will have dropped even more, from the information on here it takes 2 to 4 months to hit your low. The new meds have had no side effects plus getting a monthly shot of xgeva to protect the bones due to the ADT, no side effects from that either, last shot was elegard in the tummy due to the Lupton shortage, not as bad as i thought it would be . Excessive really helps a lot especially if your job requires sitting alot.
Maybe you are expecting too much. If you are stage 4 on this site then continuing PSA under 2 is more than you can hope for. Get second opinions, follow SOC.Coding days with a perfect memory may not be completely behind you but probably. You can still logically reason, run projects, for a while but multitasking may quickly become a fond memory. Get real, continue to struggle to think, heart healthy exercise all possible.
But enjoy the family and friends around you more. Watch the birds, trees, ocean, whatever.
That is done already. I do have the Check2 and the BRAC2 mutations. There are some PARP inhibitors for BRAC2 but they only give those to people who have become castration resistant.
Never had brain fog but I was suffering from muscle loss and depression. I see a Psychiatrist and he put me on anxiety meds that help immensely. I overcame the muscle loss with a workout that is mostly weight lifting or HIIT. This and proper nutrition has lead me to gain a good amount of muscle and where previously I was losing muscle working out.
I have never been to a psychiatrist so I do not really have a grasp on the difference between an anti-depressant and an anti-anxiety. If you were suffering from depression, why not be on anti-depressant?
Previous to Lupron/Zytiga I had never seen a Psychiatrist either. I am on a pill that treats anxiety and depression. Without that pill my brain tells me crazy shit like my friends will no longer be my friends if I don't join them on a camping trip and other crazy notions that won't let me sleep. It also prevents me from having thoughts about hurting myself. It scared me enough that I gave all my guns to one of my friends and we agreed that I can't get them back without a doctor's note. My close circle of friends have been life savers from my initial diagnosis and will be there until the end. I can truly say that without them I would probably be dead, they know my appointments and sometimes go with me. They also look for warning signs with my behavior, I refer to them as my personal care team
You are not suicidal from what I've been able to gleen from our exchanges. You are probably depressed just like I was after getting your pca diagnosis. We don't expect this in our early 50s.My outlook changed dramatically after getting on lexapro. You just need to see which anti-depressant works for you. Your Doctor chose Effexor. See how that works, if you don't tolerate it well then try one of the others. I doubt you're in the need of a psychiatrist right now. As TA states on this site often, deal what's in front of you.
Your MO wants you on ADT and Zytiga, so focus on that
Thanks but just to clarify, my doctor did not choose Effexor. In fact he never proposed anti-depressants at all and he didn't know it helps for side-effects and thought it was strictly for depression. I am the one who suggested Effexor to him but I could have pulled any other brand out of thin air as well. Just hoping I've made the right pick or that I'll be able to tell if it is not.
Do you have a PCP? If so, make an appt with your PCP to discuss the proper anti-depresssant and manageing those meds like SSRIs, Hypertension etc. If your MO is like my MO, he/she is probably only concerned with treating your pca. The other meds are to be managed by the PCP.
On the side...you do seem to like treating your self.
I treat myself because no doctor will ever care as much for my well being as I can.
What's a PCP? If it is the same thing as a general practionner or a family doctor, then I have one. My MO is indeed only concerned with treating my PCa but only his way as much as possible.
My first MO told me to work the non pca meds through my PCP. My first MO retired 3 months into treating me. I never discussed the non pca meds with my new MO. He knows what I'm on but he's busy with 100's of patients and managing that care too.
I'm in the same camp as you. I keep informed by visiting this site and reading some of the papers posted here. We differ on the efficacy of the alternative treatments but that's natural...no two people will likely approach their treatment the same.
I recognized very soon that most of the people talking up alternatives are Intermediate Risk and not High Risk like we are. There is a difference. The treatment plan and mindset that we employ needs to incorporate this reality.
Effexor (venlafaxine) is a good choice for many. But can cause very high BP in some.Zoloft (sertraline) may be a particularly good alternative as an effective antidepressant that also may have beneficial effects on PC!
Venlafaxine did me in. Tripled hot flashes, took away my balance and eyesight went from 20/30 to 20/300 the third month I was on it. Back to black cohosh root and megace, That works great but had to stop when my driving skills deteriorated. Now hot flashes are something I have to live with....,Quit clonazepam also after 6 yrs but am OK after the first month. Each drug affects all of us differently. My list of unusable drugs just keeps getting longer.
They started me on 37.5mg 4 days ago. I've had severe nausea since day 1 but lucky no headaches. However as of yesterday I started to get short on breath and to lose weight despite forcing myself to eat through the nausea. I've gone from 153lbs to 150lbs in 4 days. I asked my doctor for a script so I can tested in order to know which anti-depressant molecule is likely to suit me best.
I was not part of any trials. On the allopathic side, I've previous tried ADT. On the holistic side I've tried long water fasts, WFPB, the typical food and supplements to slow down cancer (Alpha lipoic acid, brocoli sprouts, turmeric, ...), 90 days of juicing with 7lbs of carrots per day, RSO, sauna (not infrared but just steam) and brief incursions with Fenbendazole and Artemisinin but I've put those on hold and will try them again later once PSA has gone down in hope that they will work better against a weakened cancer than if I was to use them up now while it is raging.
Give a few weeks on the Effexor to allow it to work and reassess how you are doing back on Lupron. Then consider adding an Estradiol patch. It will take away the hot flushes and can help considerably with mood and with brain fog (cognitive disturbance). This has been shown in clinical trials and in my personal experience it makes ADT much more acceptable. Also protects your bones. My dose that worked was one 0.10 mg/24 hr patch changed out every two days instead of four as the delivery drops after 48 hrs. Dotti is an inexpensive generic similar to Vivelle Dot.I can send article links if you need to convince your MO to support using this.
Also... I though Estradiol, oestrogen, estrogen and DHT, moreso than Testosterone itself were drivers of cancer. So if I take Lupron to lower T in hope of blocking the other hormones through that lack of T, wouldn't I be counteracting the purpose of the Lupron by adding Estradiol?
No. Estradiol also suppresses Testosterone so it supports ADT and can even replace it in high doses (per PATCH trial). Only caveat is if the cancer becomes very progressed then the androgen receptors can mutate to be stimulated by other sex hormones like estradiol. You are not there yet! That could emerge most likely when already castrate resistant and refractory to abiraterone and enzalutamide. So I would not worry about that at this time. The workings of the estrogen receptors alpha and beta in PC gets very complicated. But if it helps you and your PSA gets and stays low and you maintain T below 20, then I would (and do) happily use it.
Great points being made by our friends. Just my two cents worth. If Mascouche can get his MO to write a script for the Estradiol Patch, that would be great and he should realize all the benefits you and I have experienced MateoBeach. If not, heck he could always go the route I did for the last 19-months using transdermal bio-identical cream with no script and not having to ask anyone if he is willing to do it on his own.
The difference I feel is the estradiol patch is a more exact controlled dose of estradiol application and the monthly cost is much higher if not covered by insurance. The actual application of the transdermal bio-identical cream is not as exactly as the patch. But, it is far cheaper and it does work to lower T <20 fairly easy.
The side-effect of high dose transdermal estradiol that must be first considered. You will most likely eventually develop "man-boobs" and as usual lose most of your hard-on to be blunt. Pretty much typical ADT side-effects.
Up until September I was going to the gym 3 times a week (MON-WED then FRI or SAT) and I was walking for 20+ minutes every day. Then the gyms have closed because of Covid19. My yearly pass will pick up where it left off once the gyms reopen.
In the meantime, I already had a treadmill that I'm using for my 20 minute walk (our winters can be too cold and humid and snowy to enjoy a walk sometimes for several days ) so now I've now bought a mini-trampoline to bounce on and get my lymph fluid moving and I just received last night a vibrating platform that is supposed to be useful in repairing muscle and bone mass.
I have some free weights but unlike at the gym where the movements are precise and where I can do curls with 80lbs, with free weights I always hurt my old herniated disks if I use over 10lbs per dumbbell. Despite them weighting almost nothing in my hands, they are too heavy for my spine. So I kept my strength training mostly to the gym.
In that case hopefully you’ll be able to return to the gym soon. In the meantime you don’t need weights. All calisthenics can be modified. Never use the excuse of no weights to stop you.
To echo some of our friends here, the only thing that seemed to help me in any meaningful way was exercise (and I was never much of an exercise enthusiast...with the exception of swimming in my early years). I hired a personal trainer, concentrated on high impact routine plus treadmill and elliptical. While I did not see any significant impact on me physically (muscle mass gone, wt gain remained, etc.), I did feel better emotionally and psychologically. The mind fuzziness (that's a technical term. LOL) dissipated, and the emotional despair and depression seemed to lift somewhat. Perhaps it was nothing more than it gave me a sense of control or a feeling that I was doing SOMETHING to combat the monster within. Dunno.
Anyhoo, good luck to you. You'll find a lot of support here from those of us who've been there, done that.
Yes, that is what the RSO I mentioned is. I was taking about 1g per day of high THC (sublingual, ingestion and suppository to avoid the high while working) plus some CBD (sublingual and ingestion).
I have been told that I will be on ADT for the rest of my life. It sounds like you should be too. That means learning to cope with all the side effects, including brain fog which I certainly have. I was 55 at diagnosis and realized that I didn't have the strength or ability to concentrate enough to carry on in my career so I choose to retire early. It meant a cut in income and a big change in my future expectations but I don't regret my decision at all. Living a relaxed lifestyle and spending time with family and friends is much more important to me than advancing my career or making more money. If your career is suffering from the ADT side effects, perhaps you can retire or work part-time.
A gratitude jar can help with the depression. I know it is really simple but it is worth a try. Get a glass jar and everyday write something that you are thankful/grateful for on a piece of paper and put it in the jar. Try it for 30 days and see if you feel better. (Also at the end of 30 days read your papers) I have found that this helps with stress as well as mild depression.
Mindfulness meditation. Headspace is a great app and web site. They have a lot of free meditations. (We used the free meditations for 3 months before we subscribed.) Even a short 3 minute one might help. It is worth a try.
Never heard about earleada which is also called apalumatide so I am guess it is similar to other drugs that end with the same syllables. I don't know all the drugs but the public medical system begin what it is in Canada, the choice of the drug is not fully up to me. It's what the oncologist chooses and it is in part dictated by bureaucracy and by the price the hospital/government/insurer will be charged for the drug. I think that is why they always try Lupron first since the drug is so old that it is less expensive than more recent ones. It's mostly when the less expensive drugs fail that we may have a chance at a better/more expensive drug.
If its worth anything i was in the titan trial for men with mcrpc....almost 4 yrs ago....upon dx with stg 4 mets,g9 ductal hystoligy pc....verrrrry agresive..and was told 2yrs max....but uro/onc told me it was my lucky day as they were still enrolling in trial....now side effects aint no picnic...as im one who lupron kicks my arse...but imho it the double blockade is whats kept my psa on the slow crawl.....05 at last ...stayed at <.02 for almost 2yrs......i am now in the open label part of trial and recieve it at no cost for 2more yrs or until it fails.....cost stateside is 12,500.00 per month....
Effexor is not to bad been on it 4 years now, As far as the ADT. If it’s important write it down, be patient , the brain fog will get better but not fast. I had to draw a picture in my mind and then try to say what I wanted to say. It’s a long war if we are lucky warrior. 🙏🙏🙏🙏
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I asked my doctor for a script so I can tested in order to know which anti-depressant molecule is likely to suit me best.
PSA rise after stopping ADT with a prostate. 
Any thoughts on why PSA rising but mets status stable? 
Please shoot holes in this plan.
