Feeling sad and discouraged - Advanced Prostate...

Advanced Prostate Cancer
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Feeling sad and discouraged

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The blows just keep on coming for my dad. It’s getting more and more difficult to stay positive. I am feeling so sad and deflated. Last Thursday was his 5th chemo (Taxotere) and PSA is still rising. Up to 25 from 22 just 3wks ago. Nothing seems to be working for him and I’m getting extremely anxious and discouraged.

He failed Zytiga in 7 months, Xtandi never worked, Taxotere hasn’t worked. He is currently on Lupron, Xgeva, Metformin and Taxotere and nothing is working!

We have met with a Dr in Nebraska and are trying to get into the LU-177 trial. I am extremely concerned due to his Gleason 10, extensive mets, and resistance to everything we have thrown at it. I am so scared that he won’t be PSMA positive or if he is that the LU-177 won’t work for him due to the aggressiveness of his cancer or even worse that he doesn’t get into the LU-177 arm.

Am I being unrealistic because I’m still holding out hope? We keep getting knocked down and the emotional toll is brutal but I have to believe that something out there can help him and give him more time!

My dad is a young 76yr old and up until the cancer he has never had anything wrong with him. This is still so shocking to our family.

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JoJoinLA

I hear ya Sister...but as Tall Allen told me. You just gotta take it step by step. Move onto the trial. Hopefully, he will get a good response. Don't worry about him being psma avid or if he will be randomized to the lu-177 or if it will work or not. Step by step. It is all we have.

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Hidden
Hidden
in reply to JoJoinLA

Tall Allen has told me the same. It’s just so hard and I am a daddy’s girl and I just can’t handle losing my dad to cancer. I lost my mom 3yrs ago to cancer and I’m barely over that. It’s very stressful and fills me with so much fear.

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JoJoinLA
JoJoinLA
in reply to Hidden

Oh man...so tough! This is our daughter's first trauma as well. Please try to deal with what is today. You have a plan. You have done your job well. Please try to be kind to yourself as you help your dad move forward. FWIW, despite failing LU-177 then Docetaxel/Carboplatin that put him in the hospital for 3 weeks, my husband had a great day today. His daughter bought him a golf cart to get him from the house to his studio and he is a free man again!

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Lulu700
Lulu700
in reply to JoJoinLA

Oh yah!

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Lulu700
Lulu700
in reply to Hidden

Dear Hopeseeker, Please think and care for self alittle everyday.. I want you to live a long happy and healthy life also.. Hope springs eternal.. don’t give up yourself . You are probably much stronger than you think by now.. I pray dad snaps into positive territory.. soon .. Take care.. don’t carry the weight of the world on your shoulders . You’re a great loving daughter.. no man could ask for more .. Peace to you ..

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Lyubov
Lyubov
in reply to Hidden

So very sorry that you lost your mother only 3 years ago & now must deal with your dad's grave PCa. As others here have written, step at a time, day by day, & keep hoping, even if "hope against hope." Also very importantly -- take care of yourself. Perhaps you could see a therapist and/or at least talk to you primary care doctor. There likely are some medications that could ease your anxiety & depression. These could help greatly as you go forward with your dad.

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Dalph87

Sorry to hear that.

There's Jevtana (Cabazitaxel) too he can try, even when Docetaxel fails Cabazitaxel might still work for a while.

Also ask the MO for a Zytiga rechallenge after, sometimes chemo can restore sensitivity to second line hormonals.

If he has bone mets then Xofigo (Radium223) might be another good option.

Definitely get him into the Lu177 trial too, it showed "a lot" of promise for many people.

He still has options, don't despair.

Best wishes and let us know how it goes.

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Hidden
Hidden
in reply to Dalph87

Thank you, most days I do my best to try and stay positive but I’ve had a hard time with this last blow. I was hoping to get some good time from the Taxotere and it’s not working. Just a tough blow 🙁

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Dalph87
Dalph87
in reply to Hidden

At least the PSA is not doubling monthly, so at worst Taxotere is still helping in a way, mostly by slowing down the progression, so you have more time to choose the next treatment option.

Cabazitaxel will most likely knock the PSA down for a while and if he's lucky enough a Zytiga rechallenge might work as well.

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Lulu700
Lulu700
in reply to Hidden

Sorry about that☹️

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Nalakrats

It is not unusual to have a small PSA increase while on Taxotere; if working it can take a few weeks after the course of Taxotere to see PSA drop. IMO, I believe a Platinum, based chemo, might be more effective. I do not remember if your Dad had a Chromogranin A: blood test, to see if there is any NEPca involved. If so, then the Platinum Chemo is preferred. And I do not remember if your Dad was gene mapped, to determine if, and probably so--> what Gene Mutations may exist. Targeted Drug therapy, such as Checkpoint Inhibitors, and PARP's may have some value. There is a Trial going on that uses a Combination of a PARP, and Checkpoint Inhibitor--May find it on Trials.Gov---or ask your Oncologist. My MO is running one of them, and he is seeing nice results. Of course he cannot ethically tell me much more, as I am not a candidate.

There is also a new BAT trial, and I believe if my memory is right, where they are adding a Checkpoint Inhibitor, with the High Dose Testosterone, or it may be a PARP. the initial testing was showing also nice results. But with all these new approaches, there is not a 100% response. but close to 50% are responding.

As mentioned, after Chemo, you might be able to re-challenge with Zytiga, after ether Taxotere or Cabazitaxel. Also we are finding that one can also re-challenge with Zytiga, after BAT, or High Dose Testosterone. On the Alternative side, IV infusions of R-Lipoic Acid, has been shown to allow a rechallenge. Lastly in my mind if not yet tested for Gene Mutations, is to see at the same time, if your Dad is carrying the PD-L1 marker, which would indicate the possible use of Keytruda. I do not see much about CAR-T as related to Pca, but it has been effective with women having triple negative Breast Cancer. Both Pca and BC are Hormonal Cancer Diseases.

So there are options, to discuss, seek out, that are possible future steps.

Nalakrats

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Hidden
Hidden
in reply to Nalakrats

Thank you-next step is talking to his Dr about genetic testing. His local oncologist is pushing him to go for the LU-177 trial in Nebraska. Any thoughts about that Nalakrats?

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Nalakrats

Genetic testing can be off and running in 3 days. If you use Foundation One--their 800 number on their web site--an advocate will walk you thru the process. If there is Biopsy material saved, or if the prostate was removed, storage of these materials are done typically for 10 years. If not available they can do a liquid Blood evaluation. Medicare if he is the age of 65+ is eligible. With my supplemental Medicare program, My evaluation cost me zero. They also will tell you what your insurance co. will cover.

If the determination of Gene Mutations, is positive, then Foundation One will list the drugs and those in Trials, and trial locations with contacts. This marries the right drug to the particular Mutation. There are not many Mutations that have companion drugs, but the typical Mutations, there are drug options and trials. You do not need your Doctor to initiate. You Initiate--they will e-mail a printable form that all your Doctor has to do is sign.

As to Lu-177, there will have to be an evaluation with a Pet Scan to determine the level of PSMA. If there is viability there are trials on going right now, that He could maybe get into now. I am not following trials by trial, but somewhere I saw there was still recruitment going on. And there are I believe a few Docs. treating outside of the trials.

As to BAT, which you did not include---you can call Dr. Sam Demeade at John Hopkins. He gets back to you, if you get someone at his office--the holiday week now may make it difficult to speak to some. There was a new trial, on BAT, and it may be closed. Maybe not. But, having a conversation, will provide more info as to options.

Nalakrats

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Hidden
Hidden
in reply to Nalakrats

Your insight and knowledge is appreciated more than you could know. I would never know how to navigate my way through any of this without this forum. You and many others are always so helpful. Thank you for all of the information and I will start digging into Foundation One tomorrow and discuss the other options with my dad and we can go from there. Thank you so much!

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Lulu700
Lulu700
in reply to Hidden

Good luck and God Bless.

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Lulu700

How is his disposition and what does he want to do?

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Gudgelm

If he doesn't get on the Nebraska LU-177 trial you might try Mayo in Rochester. I think they are starting a LU-177 trial as well and from what little I know I think you're father might meet the criteria.

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paulparry

5 sessions. Is that halfway through as I had 10 first time? So plenty of hope and sessions to go.

Radium223 for bone mets and as you say LU177 which we cant get in UK.

New trials with fungal products.

What about a genetic test for other chemo option?

Also Cannabis oil. THC strain obviously.

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charlesmeyers1964

he has no gleason score once he is on treatment then it goes away. as for his psa is 25 why is that a problem. its so low u must think super positive i have 38 after 10 working on 11 years. i haven't gone through everything. i finished with provenge treatment it doesn't guarantee a lower score but read up on it is does say u will live longer with less problems. it could drop your psa somewhat but states u could live longer depending 5 years or longer so check it out. tell him to get off the feeling of depressing. remember all of us here on this site if its not other health problems we will die from prostrate cancer because at this time THERE IS NO CURE EVEN IF U COULD GET LU-177. none is locally if in the usa so fighting over seas and if u got the $$$ then go for it. i've read where most of the men who have died have a psa of 1,000-2,000 and he has 38

charlie

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FoxySue

Am sorry for the uphill battle you are facing. May God give you the strength and resilience to press on! I can relate to the shock of your dad being ill for the first time in his life. My dad was a country boy at heart and also never been admitted to hospital before. That's what makes it so hard to process the news!

Stay strong for your dad xx

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Jama91

I fee for you, my Dad is Gleason Grade 9, 8 LN mets and he’s being offered only Docetaxel and ADT and he’s too scared to start anything ☹️It’s been 3mo since diagnosis, PSA is 34.

I agree with everything Nalakrats has said, I’m a scientist and work with a lot of the medical researchers (preclinical and translational) and clinician researchers here in Australia. Is it still adenocarcinoma ? Or Neuroendocrine now? Apparently that’s the lethal clone, the cells that don’t even behave like PCa anymore are left alive by traditional approaches and that’s what gets you in the end ☹️

Def get the genetic testing, find out if any mutations, PTEN mutation has been implicated, might be IL-8 (interleukin 8 pathway), this causes chemo resistance and non-responsiveness, look up publications from Prof David J Waugh). I think AstraZeneca are working on an IL-8 inhibitor drug...

PARP inhibitors (olaparib), AVASTIN + ADT, Abiraterone + Pred ?

You’re lucky you can get the testing, it’s $4K per test here in Oz and it’s just too expensive.

The Lu-177-PSMA here is $10K per infusion, privately offered only.

Good luck ! And let us know how you go

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karlsiller
karlsiller
in reply to Jama91

What does privately offered only mean?

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Jama91
Jama91
in reply to karlsiller

It’s not on our PBS or pharmaceutical benefits scheme, so a few places offer it, but it’s very expensive, $10K AUDper infusion. They also offer AC-225

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Jama91

Oh there is also Ac-225-PSMA radioimmunotherapy, Actinium is a stronger emitter of radiation than Lu, and is offered sometimes when Lu fails.

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Patrick-Turner

Hi Hopeseeker.

I'm a "young 71yo" like your dad is a young 76yo.

My Psa was 12 before 5 chemo shots, and 45 after 5th shot, and I had mets all over me and still do, but I had a Gleason 9 in 2009, docs said it was agressive and that there was no cure, and it does seem they might be right. ADT kept the Pca supressed for a long time where I had a very good life.

At after my chemo 4th shot, it looked like chemo was never to work so I was booked to see a doc here to buy Lu177. I had a 5th shot, Psa went to 45, and then one month later had No1 Lu177, and Psa had fallen to 25 in the month, and was 25 about 6 weeks later, 3 weeks ago, and I have no 2 Lu177 on 4 Jan 2019.

I am not too worried about Psa.

ADT with Lucrin had worked alone for 2010 to 2016, then Cosadex with more RT to PG then Zytiga gave me 14 more months before chemo, which my onco said may not work much, but I gave it a chance.

It is now not known how much more time on Earth I might get with Lu177; the mean time gained for all patients is 14 mths, and after that time, maybe I have Ra223 for bone mets if Lu177 does not work. But and sooner or later I will run out of available things, and then its time to consider my time is up, and I then would seek palliative care when the bone pain starts.

That might be a year or 3 years away, nobody knows, maybe immune therapy will be there; nobody knows that either, but fact is, like most ppl, I won't be leaving Earth alive, and I'll just say bye-bye to anyone who happens to be around, but chances are I'll be so drugged up I'll be in a daze and not aware of anyone near me. And I don't expect an afterlife, and when I die, I will end.

The world will muddle onwards without me very well, and be glad I was not a pauper.

But before then I am busy, and I don't talk about my bothers to many ppl and life right now is really good. I have a few friends, but no family of my own, and from my youth to now I had to care well for myself, because having partner longer than 3 years never happened, and I won't boor everyone with details; I am not the only one who just has to cope alone, and many do very well; they do not need support, they just need a few friends at least. Love is a bonus if you experience it, but really, how many really do?

We cannot control our DNA or DNA of anyone else, and I know a man who had very much less response to ADT, Cosadex, than I had, and his Pca continued after his RP, and after IMRT. Chemo got his Psa from 40 to 2 after 3 chemo shots, then Psa leveled then rose and was declared useless after 10 chemos and 30 weeks. He had his Pca DNA analysed and was found to have Bca gene defects and docs concluded after other info was considered that he go on trial for PARP and Psa has gone from 40 to 200, and a bone met he didn't know about has invaded a hip joint so he is now bed ridden, in pain, and will have more IMRT to his hip, and getting Lu177 would only be possible if he can be transported to where he can get it. I think the PARP trial he's on won't do much and using Bca or Oa chemo drugs may not work either. Lu177 is maybe his best hope to get more time because his Pca is PsMa avid, but his Pca seems to have a lot of mutations, so its many forms of cancer within a group that began at PG at age 58. He has already told me its unfair on his loving wife that she be saddled with his demise, and in general his situtation is leading all his family and himself to rivers of tears, but he tells it how it is to me and I can't wave a magic wand. I could only say that there comes those times when real good long cry is all anyone can do, and those remaining after he departs will be able to go on with a very fine good memory of him.

I have seen other women cope with loss of a beloved, I am sure you will too.

I lost a father of 60 to melanoma, a sister of 60 to Oa, a good friend to multiple bothers at 72, and by then I wondered when my turn would come, and it sure has, and somehow I cope. I lost a wife of 22 when she just left late one night, her mind had just changed from loving life and me to hating all things, and fleeing 5,000km on a jet plane was her only way out of her pain, but I still feel bitter about it 40 years later; the memory is of disloyalty, deceit, betrayal, sloth, etc, but hey, I married her; I could have not married her, just waited longer, and her real self would have emerged without breaking the marriage deal that greatly troubled me and her. Love is blind when under 30.

at 71, I have a collection of ppl in my mind who I miss; some are alive, but changed so much I could not love them, so I miss the part before then changed. Its a wonder I got from 30 to 71 without suffering PTSD from the sling stones and arrows which life has fired at me.

All you can do is love your dad, and if future treatment fails themthru the make sure he's comfortable, and try to break through the of fog any distance between you and him.

My next door neighbour David died 3 weeks ago after a 2 year battle with lung Ca with numerous non anticipated side effects and treatments that could not work. He finally could not accept more treatment, and had palliative care at home, and he died peacefully surrounded with 2 daughers, a son, and his wife, and maybe the tears flowed, but it was "Bon Voyage Dad", and methinks that family is coping. I miss my mum, who I remember at her wisest at about 65. She died at 98, and spent many years slowly winding down to less than before; and she'd survived for 43 years after losing my father, but never re-married; She could only cope with 1 man. So we all have different levels of coping and maybe our friends and other relatives can help; they should, and not judge anyone to be weak if they have difficulties.

I used toadvise ppl to visualize stepping outside themselves, then take a look from afar, and ask "who is that person that is me?" How does she progress in the world? What is she really up to?

Well, we need to not be scared to look, and welcome out own voice making decisions. I would have been 19 when I could not hear my father's voice in my head, and that made me a better man. And there was little I could do to stop his melanoma in 1973. It took time to break through the father-son barrier to have him regard me more as a friend than an obedient son, and this was well underway by the time he died, he could see his son did not need to obey him but he could just accept my presence as an equal in the couple of years before he died. He took a lot of getting used to because he had a bad temper and had had a stiff Edwardian style of young life where men were trained to be hard, aloof, and never use the word love in any conversation.

I could not be like him, because of my mother's firm but fair attitude, smoothed by her Irish nature.

So a journey with your dad no matter what happens should leave you better able to cope without him, whenever that might be.

My apologies to all if I have upset anyone but I know no better; I never had much practice at honing the skills of love; we all surely should try, and your heart will not fall out of your chest if you do.

Patrick Turner.

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Tonyland

No matter what, please try to stay encouraged. I know it's hard as I had all the ups and downs with my dad but I always tried to keep him encouraged and looking forward to something

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larry_dammit

Hate this Monster, don’t give up yet. Sometimes there is a rise in the PSA during the chemo. You need to stay positive for him .let him know he’s not in this alone. 🙏🙏🙏🙏🙏🙏

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Jollyjill

Knowledge is powerful. Continue to seek out information as you’re doing and act on the best advice you receive. Encourage him to be positive. Keep your spirits up. Have faith. Pray, then pray again...and again. Keep praying. I’m praying for you.

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Currumpaw

Dr. Klotz when speaking at a urologist's conference, had a chart detailing the PSA history of a patient's hormone resistant prostate cancer. The patient's family manufactured hot sauce. he began dosing himself 3X daily and lo and behold his PSA leveled off. It didn't go down, but leveled off. It is on YouTube. Make your own judgement. Strange but documented by a noted and reknowned urologist. Maybe something to go along with the conventional treatments?? Talk to the docs!

My best to you.

Currumpaw

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Stegosaurus37

Like your dad, I'm 76 and never sick a day in my life until this. I haven't had as bad a trip through the therapies as he has, but after a year and a half of throwing everything at it, with nothing working for very long, the oncologists have run out of options except "clinical trials". I've qualified for two - PARP inhibitor and Lu-177 and am in the happy situation of having to make a choice. The Lu-177 (VISION) trial people will push you into the trial location closest to your residence. A good deal since travel to treatment locations can take a lot out of you.

Please remember - hard though it may be - to take care of yourself first. You can't help your dad unless you're in good condition yourself. Reach out to your friends for emotional support. I often think our disease is worse on our caregivers than it is on ourselves. But try to concentrate on the parts that don't hurt.

I'm very glad my wife has a close group of friends that are providing her emotional support. Her parents, at 97 and 96, both have serious health problems. I haven't talked to her about it, but I'm glad she'll have this support if she loses both parents and her husband in the same year, as it looks like will happen.

As others have already said, take each day at a time and try to make the best of that day. And remember, your father's brothers here are all rooting for you. God bless both of you.

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Jackpine

Hopeseeker,

This disease will bring sadness but also joy when you find something that works. All of us here have had similar feelings of despair at times but we keep fighting for our families and people like you.

I do hope your father is able to get in the LU 177 trial. While it doesn’t work for everybody it is showing good results in a lot of people. In my case last summer I went from 0.4 to 110 PSA in 5 months. Over the last 5 years I’ve done surgery, chemo, radiation twice, Lupron and Zytiga so by the time I was enrolled in the LU177 trial I was very short of options. In my particular case I’ve gone from 110 to 1.0 in 11 weeks and my choline PET scan showed no new metastasis and most of my bone Mets have resolved. So maybe a Christmas miracle but certainly reason to have hope.

Stay strong!!

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j-o-h-n

PEACE.

j-o-h-n Friday 12/28/2018 6:04 PM EST

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roseanduwe

Just take one day at a time. Never give up hope but you must be realistic that there is no cure for this disease. All you are doing is buying precious time. Enjoy all the moments you can while you still have them to enjoy. Hoping the lu-177 will buy some more time for your family. ❤️

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RayF

Hi Hopeseeker,

I know Cornell Weill is actively taking patients for Lu-177, if they meet the requirements.

I can find a link if you like.

I have a daughter too, and it bothers me to be a burden to her. We all do the best we can. Your father is lucky you are supporting him, and I'm sure very grateful, take solace in that.

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