Husband doesn’t want more chemo - Advanced Prostate...

Advanced Prostate Cancer

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Husband doesn’t want more chemo

joekaty
joekaty

The top pics are feb 2018 after 9 rounds of docetaxel. Bottom are one year later. He feels good! But, Xtandi is done working. He is still on that, Lupron, xgeva, pain meds. PSA is rising but still low (3.01 two weeks ago). DT is under 2 months. New mets to spine. We are at UTSW and Dr wants him to start docetaxel again this week but he just doesn’t want to. Other than pain (pretty well controlled with plenty of meds) and fatigue, he feels good. He doesn’t want to go back to chemo sick life. Dr said Zytiga would have less than 20% chance of effectiveness. What he is being offered is essentially never ending chemo so who could blame him for not wanting that? On the other hand, he has a strong will to live and we have six children not even out of high school yet. He’s 51. We’re not even two years into this journey. Want to support him but not a decision that HE would regret. He’s already pushed chemo back 3 weeks now- and wants to do so again to look at trials. Because he had a weird presentation he has yet to be accepted into any trial we’ve gone for (he’s been rejected from eight so far) so I don’t think that is going to change now but he thinks it will. I am at a loss. Thoughts? Advice?

70 Replies
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Hey, Katy. I too am a Social Worker. An MSW not an LCSW, though I am laying the tracks to start getting my hours to be an LCSW. It's good that you are reaching out to other people for support as many people in the profession seem to get lost in not practicing self-care.

I would say your husband looks handsome and strong in both photos, although people will go through physical and mental changes with chemo. With that said, Chemo is a therapy that helped enabled your husband to feel good at this point and continue to see his beautiful family and wife.

If your husbands PSA is still rising, albeit slightly, it means that cancer cells are still active in the body - you know this. The thing about treatment is that if it becomes too unbearable, he could always stop it and rebound from that treatment. The alternative to not getting the treatment is going to be the eventual continuation of metastasis all throughout his body. It's a heck of a lot more difficult to turn the clock back. My father is going through this disease, but I can't imagine the pain and hardships that you and your family are going through.

With all that said, I would just recommend that he continues the treatment because he always could stop the treatment if it becomes too much or he doesn't want to go through it. By not going through the treatment and letting the cancer spread, it's going to be even more difficult if he changes his mind and to turn the clock back.

It's obvious an immense personal decision that is going to take a lot of soul searching and conversation. I wish you and your family the best and whatever the decision may be, he makes it for what's best for all of you.

-Barron

joekaty
joekaty in reply to BarronS

I don’t know that my self care has been great but I’m trying! I totally agree with you in how I view proceeding...but it’s actually the social worker in me that is struggling. I support self-determination...passionately...but when it’s my husband and I don’t agree with his choice that becomes a much more difficult thing to do. Thank you for reaching out...

ottawamike
ottawamike in reply to joekaty

I have young children and a patient loving & supportive partner, too. For me, cancer is a family disease.

Maybe he’s concerned about how hard chemo was on your kids?

You might be more at peace if you better understood his thoughts and feelings. Or maybe he will see his treatment options in a different light if he better understood your young family’s worries and needs.

I hope you can find a way to talk (and listen) your way through this together.

joekaty
joekaty in reply to ottawamike

Thank you. Yes, I absolutely believe his concerns are for the impact on our children. He is a great dad! Even though he has continuously been on some type of treatment since diagnosis in August 2017- he LOOKS healthy now- despite whatever is going on inside of his body. It’s deceptive, but it’s allowed the kids some respite from a lot of worry and fear...particularly with one of our two youngest boys- he worried all the time about his dad when Joe looked so sick- it was excruciating seeing this sweet, sensitive, kindergarten boy having such fear. Cancer is just hard and seeing how our children (ages 6-16) have responded to it so differently is a good reminder that we all (including my husband and I) process and cope with this monster in different ways. Back to cancer support group we go I guess...

ottawamike
ottawamike in reply to joekaty

I found this helpful for us

When I was first diagnosed I bought a few copies of a very helpful book. It was recommended to me by a social worker at my hospital. I gave copies to the adults who were important in my kids lives and scanned a few pages for their teachers at school.

“When a Parent is Sick: Helping Parents explain serious illness to children" (ISBN 978-1-895900-91-0)

It talks about some of the typical responses that are seen in kids at different ages. How their mood or behaviours are often affected. Typical questions and how to answer them in an age appropriate way.

joekaty
joekaty in reply to ottawamike

So I am a social worker at a pediatric hospital, and we have Child Life Specialists that work with parents to help them with language to disclose hard things, prep them for seeing siblings in ICU, who have cancer, etc. They are amazing and one of my friends on that team is working on putting together a resource/book list for me geared towards our situation. When I get it I will definitely post it here to share. It’s great that your family has been so proactive. I’m licensed as a therapist but when it’s your own family...regarding our children I’m embarrassed at how much I have buried my head in the sand right along with Joe. Thanks for the book suggestion and reminder that it’s time for me to start addressing things with our children again. We did initially go to the local cancer support center, even took our kids to see Santa there and had Thanksgiving there the first year- since then I just haven’t been able to make myself go there but I’m going to have to start modeling for our children that we can talk about and face this together as painful as it is. We have done a lot of memory making and Joe did do videos for each of them to have when they are older. Hard. Stuff.

I'm in a similar boat (although I'm 67 and docataxel didn't bother me much), and halfway thru the sipuleucel-T protocol. It's like a little minivacation, in my esteem. I plan to use the surge (don't expect PSA numbers to go down because they still don't really know how it works) from the immune defense to cover a 90-day break to give my organs a rest and get back in good shape, as you can't break a sweat or lift over 10 pounds with a Groshong stuck in your jugular. I'll get scanned for SBRT on June 13th, then resume HT/ADT on the first of July with degarelix (quicker to low T count than leuprolide) & enzalutamide. May be irradiated-depends on scans. If the crab SOB is really feelin' his oats around the December PSA test time I will undergo cabazitaxel, possibly with carboplatin, then take another 90 -day break from everything and use different drugs (MTD, but not until failure), and stay on the merry-go-round 'til I'm cured or a jug of ashes. There is a plethora of alleviating tactics/strategies; with a strong combat mindset they can be reduced to inconveniences as opposed to deathrides the thought of which makes one wring his hands and blubber.

Personally I can't see myself letting a little pukin' and some couch time dissuade me from treating the crab bastard for what he is, hittin' him with everything plus the kitchen sink, and hangin' around without sniveling for every last second...for my family's sake.

But that's just me.

Nous Defions

Crabcrusher

joekaty
joekaty in reply to Crabcrushe

Yeah that’s kind of what’s weird to me- my husband is the strongest person I know- has fought like hell- never complains even though I know he’s in intense pain most of the time- even with morphine 24/7. He actually handles taxotere very well until the last couple cycles. But, our kids were freaked out, he looked sick, was in and out of the hospital..I think it has more to do with not wanting to be worried about all the time. Or maybe that it’s not a concrete number of cycles like before- it’s just “go until you can’t go anymore” which, frankly, sucks. Also, ironically, because he was SO sick when he had it last time- it’s like he doesn’t think he’s sick enough to have it now. He doesn’t understand that his 556 at diagnosis is not too different from his 3 now. His cancer is just nasty and aggressive.

It's a difficult decision. Ask his doctor if other treatments are advisable, i.e. Keytruda or other newer treatments.

joekaty
joekaty in reply to Magnus1964

We’ve asked all the Dr’s we’ve seen and I’m not sure why- can only guess bc his cancer presentation was weird- but no one at any of the 3 research hospitals we’ve been to has recommended anything else, except possibly PSMA LU177.

He could get a PSMA Lu177 treatment by joining the VISION trial. What I can tell this works better than Chemo.

joekaty
joekaty in reply to GP24

We are at UTSW and Dr had been talking about the trial and now seems unsure he will qualify. Regardless, he’d have to have chemo again as when he had it before he was not castration resistant.

GP24
GP24 in reply to joekaty

I would call the trial organizer directly and ask. It may well be that the inclusion criteria specify chemo regardless if done before being resistant.

Caring7
Caring7 in reply to GP24

Cannot be on chemo with VISION. There’s a washout of a few months. It looked really promising for my guy but it seems that the study is suspended right now in a lot of places. UCLA Stanford and Vegas all said they cannot take patients right now. Bummer. Now looking at Jevtana for him.

joekaty
joekaty in reply to Caring7

That is a bummer. It’s still available where we are at UTSW and also I know at Washington University. The chemo washout is 28 days so not too bad. Hope the suspension won’t last long in all those places- seems like good trial.

Has he already used Provenge and Xofigo?

joekaty
joekaty in reply to YostConner

He hasn’t used either and I’m not sure if it has to do with something about his particular cancer history or what but none of the Dr’s we’ve seen (MDA, Chicago, UTSW) have thought either would be a good idea/effective for Joe. Not sure why...

I'm in same(ish) boat...Lupron is still working but not great...I've never been undetectable PSA wise. That Said, I assumed my next attempt at grasping straws would be to do PSMA LU177 ...OR,( I thought it was possible from what I read on here) to do a short run of chemo (not forever) to bump start Xtandi's efficacy. The idea of indefinite Chemo...couldn't possibly sound good to anyone. Perhaps someone who knows for sure...will explain how Chemo short term can re-start Xtandi. My thoughts are with you.

John

joekaty
joekaty in reply to greatjohn

Thanks John. :) If he does taxotere, then we thought he would be eligible for the PSMA LU177 trial. Even though he’s already had taxotere- he was not castrate resistant then so would have to have it again to qualify. However, Dr was talking about the trial and now sounds sort of cagey when I ask him about it so I don’t know if something has changed or what. Frustrating.

Hate to make this true statement: Chemo does not cure Prostate Cancer. Now for resensitizing Xtandi, or Zytiga to work again, which it does not do it all the time is a short run of Chemo. That is one way. Another is to go with a high supra physiologic injections of Testosterone Cyprionate. There are other things that can re-sensitize the above drugs.

This comes from my Geneticist. I am just reporting.

If possible an AR-V7 test will confirm whether to use or keep using Xtandi or Zytiga, as they do not work when the gene splice variant AR-V7 is turned on. Chemo, High T can sometimes turn it off, so the drugs become effective again----{sometimes}.

I would be investigating strongly the use of Lu-177 PSMA-617 as a good option. If you can get a test on the AR-V7, and also look at the PD-1, and PD-L1, at the same time---> these tests may indicate that Keytruda, or other immune protocols may be of benefit.

A call to Foundation One---Tel # on web page, may answer these questions, as to tests, and also discuss full Gene Mapping, to determine if there are any Gene Mutations. As these tests can determine if there are any targeted drugs that may be of benefit. This is a lot of work, and you may have Doctors not educated in the above protocols. So you have work to do. The resistance, may also call for a Chromogranin A test to determine if there is any Neuroendrocrine Pca, also involved. As this can change the landscape.

Nalakrats

joekaty
joekaty in reply to Nalakrats

Ok we have had the Foundation One testing. Thank you for your honest and helpful response. I remember reading about the AR-V7 test- will check out that for sure. Thank you...

Rkoma
Rkoma in reply to Nalakrats

Nal,

With Joe‘s bone pain I don‘t believe BAT ( testosterone cypionate) would be an option.

Regards

Rkoma

Nalakrats
Nalakrats in reply to Rkoma

Are you still treating in Germany with the radio-pharmaceuticals? New studies on Iodine131, just coming to the input info I get. Prayers be with you!.

Nalakrats

Rkoma
Rkoma in reply to Nalakrats

That‘ the main business of many cancer Centers. I got impression that they now focus on PSMA ligand fine tuning to achieve better efficiency and reduce AEs, especially with 225Ac

Regards

Marko

Nalakrats
Nalakrats in reply to Rkoma

You are right that is where it appears a lot of focus is being directed. 225Ac. by itself has not shown to be as effective as when used in combo with Lu-177.

Nalakrats

What do you mean by a "weird presentation" that is keeping him out of clinical trials?

A cycle of docetaxel (or cabazitaxel) is usually 6 infusions 3 weeks apart, so it is over with in 18 weeks. He probably had 9 rounds last time because he responded so well. Patient-reported quality of life is better among those who do it than among those who don't.

Xofigo (6 injections, 4 weeks apart) might be a good next step. It would be a good time to get Provenge as well because the radiation kills a lot of cancer cells and presents them to the amped up immune system.

A "No brainer" is adding Celebrex along with the Xgeva - the combination of Celebrex and Zometa (similar to Xgeva) was found to increase survival by 22%.

joekaty
joekaty in reply to Tall_Allen

He was diagnosed in disseminated intravascular coagulation and spent three weeks in ICU due to bone marrow metastasis. He continues to struggle with blood and platelet counts, blood clots, and one another of those things have kept him out every clinical trial he has applied to. He also never had a tumor site that was easy able to be accessed bc his prostate never had a tumor, and wasn’t able to be biopsies due to concerns about bleeding. The bone marrow biopsy was an emergency and he almost did not survive it. He did nine rounds last time because they didn’t expect him to survive long enough to do anything else- the point was just to keep him out of DIC. He was stopped at MDA due to concerns about his kidney function.

Tall_Allen
Tall_Allen in reply to joekaty

Thanks - I understand better now. I also see why hematologic concerns might make a lot of treatments (chemo, Xofigo, radiopharmaceuticals) problematic for him. Perhaps talk to his oncologist about estrogen patches - as a patch, it doesn't seem to cause the clotting issues that pills do, but this would have to be carefully monitored. As a side benefit, it can strengthen bones and reduce hot flashes.

joekaty
joekaty in reply to Tall_Allen

Ok thank you. His bones are very degenerated and I know he hates the hot flashes so that seems like it would be a helpful measure.

Crabcrushe
Crabcrushe in reply to joekaty

Didn't know that. No wonder he's in the current state of mind...

Not to be redundant, but I'm extremely confident w/the Provenge, nearly to the point of attributing alleviation of symptoms to it of late, and it's not even uncomfortable; do his blood issues preclude the treatment, or did they say?

Incidentally, he is blessed with a WARRIOR for a wife. No doubt.

Crabcrusher

joekaty
joekaty in reply to Crabcrushe

So I read this about 30 minutes ago and then just dove into reading about Provenge...bc it is really interesting...but it took about 2 minutes to understand why we have yet to have a physician recommend it. He has been in extreme pain, on morphine 24/7 w/norco for breakthrough, on disability, can’t be on his feet for more than 15 minutes without starting to struggle, going on 19 months now. So when I read Provenge was for asymptomatic or minimally symptomatic mCRPC orients not on pain medication...it all came together! I’m glad it is working for you so well and I do appreciate any and all suggestions. I know enough to know how much I don’t know.

Can you please provide a source for the information "the combination of Celebrex and Zometa (similar to Xgeva) was found to increase survival by 22%."?

ascopubs.org/doi/10.1200/JC...

Sorry. I have no advice or solutions. Just wanted to say "Wow. What a beautiful couple." All the best to the both of you. Monte

joekaty
joekaty in reply to monte1111

That is very kind- thank you. We are really happy together and I think that shows. This whole cancer thing is really getting in the way of our plans! ;)

I have no idea about whether the following suggestion will work but I know a guy for whom it did work and I thought it might be worth asking a medical oncologist about it.

Here's a description of the normal dosage recommendations for docetaxel chemotherapy: reference.medscape.com/drug...

It is normally administered as 75 mg/m^2 once every three weeks. The guy I know was treated instead with 25 mg/m^2 once every week. He got the same total dose in the same total time, but each specific dose was only 1/3 of the full dose. The patient told me that he experienced no serious side effects.

Was this treatment as effective as the standard dosage? I assume it's not since it's unconventional, but I don't know if it's a lot worse, a little worse, or not worse at all, or whether it's worse for some patients but not for others.

Was it responsible for the patient breezing through the treatment? I don't know that either. Maybe it was. Or maybe the patient was just the kind of guy who wouldn't have been bothered much by the conventional dose.

Anyway it's something to ask the oncologist about. Conceivably it would add some time to your husband's life without making him wish he'd rather die.

As for other treatments:

If a radionuclide treatment is not unreasonable (Tall_Allen, who knows a lot about all this, said that your husband's hematologic issues might make it problematic), but he can't qualify for a clinical trial, then treatment abroad may be possible. The treatments were pioneered in Germany and Australia and are approved in both countries without requiring a clinical trial setting. If you search this forum for Lu-177 you'll find many postings about it. I think some of them may mention the cost too. If not, you can "Chat" with men who have tried it and ask them questions. My impression is that, as with all of the other treatments, response to PSMA linked Lu-177 can range from no value to spectacular value. A few percent of men get virtually a complete remission. One good thing about the treatment is that a PSMA PET scan can give a pretty good indication of how well the patient might respond before having to try the treatment.

I really feel for the two of you and for your young children. I wish you the very best.

Alan

joekaty
joekaty in reply to AlanMeyer

So I do think there are some concerns about hematological issues but it has not been taken away as an option for Joe and they do have the VISION trial at UTSW where we are now receiving treatment. If it is an option, and we can’t get it through the trial then we have already decided to go overseas for treatment. I hope it is a possibility.

Just to clarify, my husband definitely doesn’t want to die, he just doesn’t want to spend the rest of his life getting increasingly sick while our children watch and worry. If anything, he’s in denial that death is a possibility and is in more of an invincibility mindset.

I am so glad you shared that story. One of the treatments he explored was going to Mexico and being put in a hypoglycemic state while receiving chemo which supposedly allows you to receive only a fraction of the dose and is purported to be very similar in experience to what you are describing... except the scenario you gave was not in a center that also did plastic surgery, is supervised by a doctor who lives in China and owns a clinic just on the other side of the border that sounds very, very sketchy.

I will definitely question his Dr about the possibility of a lower dose chemo. If the plan does end up being that he receive chemo until he has to stop- as it seems to be now- that really might be a feasible option that he would be open to. It’s certainly worth exploring. Thank you for sharing!

Rkoma
Rkoma in reply to joekaty

I think you talk about Insulin Potentiated Therapy (IPT) and I believe its possible to get the therapy also in US (I saw some info about Dr Forsythe in Reno). Usually its just 1/10 of standard cytostatic amount, but received weekly. In Germany some MOs offer it as non SOC therapy ( not paid by insurance).

An interesting approach to reduce the pain was use of lanreotide combined with Dexamethasone or Ethinylestradiol.

pubmed.ncbi.nlm.nih.gov/117...

Some people were successful with „Pfeifer protocol“. As it‘s DES based therapy, an anti coagulation is a must.

I‘m not proposing, just reporting.

Rkoma

AlanMeyer
AlanMeyer in reply to AlanMeyer

I contacted the guy who had a 1/3 chemo dose once a week. He's a real enthusiast for his treatment. Here are a couple of quotes from him on Usenet:

"I hope your chemo is with multiple low doses rather than one big dose less often. I had no noticeable side effects besides moderate fatigue, played rigorous sports hours after my chemo injections."

"The best resource I can offer regarding my chemo drugs and protocol is the website that led me to them. Not only did my chemo, with or without ADT, work FAR faster and more effectively (PSA from 54 to undetectable in just 3 to 4 months) than anyone expected, but my program's SEs were noticeable primarily only in endurance in heavy athletics. It reduced my endurance to or sometimes below that of athletes 1/3 my age."

His treatment was at Compassionate Oncology in Los Angeles.

compassionateoncology.org/

Please approach the enthusiasm with caution. People who respond as well as he did to his treatment tend to be highly enthusiastic, but I presume that not everyone responds as well.

Alan

Hi Katy. The questions of when to delay or stop certain treatments for quality of life considerations and other positive reasons are never easy. These documentary films might be something of interest for you and your husband to watch and discuss, regardless of what treatments and palliative/hospice care decisions may be in your future.

A documentary film for adult family viewing/discussion, based on the best-selling book by Dr. Atul Gawande,

Being Mortal - Medicine and What Matters in the End

pbs.org/wgbh/frontline/film...

And a similar film about End-of-Life issues for patients and families.

Passing On

passing-on.org/

Many Hugs and Much Healing to both of you, and to your kids.

Charles

ctarleton
ctarleton in reply to ctarleton

The book "When Breath Becomes Air" by the late Dr. Paul Kalanithi is good, too.

Charles

joekaty
joekaty in reply to ctarleton

Charles, these are all great resources. Thank you...

If you are castrate resistant, explore bipolar testosterone treatment. Try Dr. Sartor at Tulane.

joekaty
joekaty in reply to cesanon

I will look into that! Thanks!

Hi there.

Irt is unfortunately true that when either Xtandi or Zytiga stop working, the other one has only a 20 % chance of working, so I wouldn't even go there to be honest.

I wouldn't look around for more trials either. All that takes time. And it is time during which the mets can grow further.

So the options would be more Chemo, and probably for the rest of his life, or no treatment. And maybe that is what he wants?

I think it would be great if you and your husband could sit down and discuss his decision. You could ask him, "Why don't yxou want to do more Chemo?" and then just listen to what the first answer is that comes. Maybe it is that he has enough of the Chemo side-effects which he already knows, maybe it is because he feels too weak or tired to do more Chemo, maybe he is afraid of it in some way... You could then tell him that you are afraid of losing him if he doesn't do it but that you accept and respect his decision not to do more treatment if this is what he really wants.

Love and keep us posted!

Mel.

joekaty
joekaty in reply to MelaniePaul

Thank you! We have talked about this quite a bit. The thing that I think I must have stated wrong...is that while he doesn’t want chemo- he wants anything else! Trials, 20% chances, etc. He says he feels to good to do chemo again- even though in reality I see him in so much pain he forgets quickly!! He really thinks he isn’t sick enough for chemo, and if he has to do it he’ll save it for when he “really needs it”. I am very much with your line of thinking but at this point I’m just along for the ride...

51 thats pretty young to be fighting this disease and as far as anyone on this site have stated still no cure. he has the right to take a break and if he waits to long maybe he won't come back to feeling good and has strength. i've been lucky i was dx at 61 and i'm 72 no chemo just lupron, zytiga and provenge. i say let him decide its his body u can tell from those pics he's had a rough time with those meds and it won't get better. to bad he's not old like me heeeeeeeee so young.

charlie

Thanks Charles...yep- definitely at the point where I’m leaving the decision to him.

Try zytiga. Same words to my husband about less than 20% chance and he got about 8 mos of it working!!

Caring7
Caring7 in reply to Caring7

Also what about Provenge? Xofigo /RA223? If he is ok for these then he should try them before more chemo.

Maybe you did those already?

joekaty
joekaty in reply to Caring7

I’m leaning towards that too! 20% isn’t nothing!

Hate this monster, sorry to hear that the treatments are failing him. It is a personal issue whether to take the chemo or not. One that only you two can answer together. There are other treatments available out there. If your doctor won’t offer them checkout another doctor.

Try Zytiga. I was told the same thing when Xtandi developed resistance. But, like your husband , I wanted to postpone chemo as long as possible so I insisted on trying Zytiga. It helped to control for over a year and for me was easier to tolerate than Xtandi.

One of the things I have learned from this forum is that there are widespread individual differences in response to treatments.

So, If your husband is refusing chemo, Zytiga might be worth a try.

I totally understand how your huband feels. While i had nowhere near the pain your husbands having i was debilitated by full dose of Xtandi. It would take me 4 hrs to vacum the house, i couldnt walk very far. And a short trip to the store would leave me ragged out. I was seriously considering stopping it because that was a tough way to live for 2 months. Well finally setteled on 1/2 dose of Xtandi. I can tolerate that pretty good. I stsrted smoking pot that reduced the fatigue and pain in my hands feet anad knees.

Im glad at this point i stayed with ot. Chemo will be my next plan of attack when the monster rears its ugly head again. Best of luck to you two!

Thomas

God bless you Joe and Katy! A lot of great advice given by the members here. I just wanted to say you are an amazing wife and I will be praying for Joe as well as you and the kids. Kimberly

joekaty
joekaty in reply to savingdaddy

Thank you Kimberly! And yes- lots of great advice here!!

There are lots of great comments, here, Katy. And his journey is understood - I am 51, multiple bone mets, "unusual" presentation, with kids (just 2) and a Joe! Less handsome, I assure you, but a Joe and that counts for something! :)

And I'm in a better/luckier place for today than your Joe - bone marrow mets have not been confirmed. That whole turn was bad for your Joe (but, wow, what a fighter!) and has left him in a precarious position. I am so sorry.

Everything is risky, now. Everything. If APCa had a typical statistical course, we'd all have some sort of map to follow...but, alas, it's all about 20% this and 15% that.... Lies, damned lies, and statistics...

I understand your husband's position. Granted, I am two years out from chemo and radiation and I've just started Zytiga and have gotten approval for the Provenge treatment (options that haven't been presented to your husband, so again it's so easy for me to say things, right...?). But, as Nalakrats said, chemo doesn't cure...it is a carpet-bomb approach that usually has tremendous collateral damage. We are buying time and hoping that the cancer becomes re-sensitized to ADT.

If your Joe is anything like me, the real issues are almost unspeakable. I am scared, Katy. I am sad, I am angry, and I'm am tired. And when I think of how much time this fight is taking away from my children and my wife...even just my thoughts of them....when I worry that this is defining me in their memory...is likely BECOMING me.... it completely breaks me.

Sadness and anger is transformed into overwhelming humiliation at my pride to want to live, to see my my wife one more day or see my children grow....and why? So that, in return, they can see me wither and die, eaten alive in a contest between cancer and man-made poison...? I am a powerless, selfish fool duped by the fantastically-clever ignorance that is medicine coupled with a gambler's mentality....

At home alone, with my family off living their lives at work or school, such thoughts prey upon me. But even when I am with people, these feelings seize every opportunity revealed in a moment of boredom or weariness to weave their dark story. My body, so deliberately pushed into unbalance, seemingly has no response to such overwhelming depression. Unsurprisingly - as always - the hard road ahead looks utterly pointless.

To Joe:

Fortunately...or unfortunately.... it's not our choice alone. The weird thing about all of this is that so much of it isn't about us at all. Yes, we get to "choose" Door 1 or Door 2...but that's just chance, and we aren't doing anything but putting chance into play. The only choice we really have is how we retain and act on the philosophy of love - for ourselves and for those we care for.

And in the end, Joe? Love isn't fair. Even in a body whose responses have been stripped to the point that love doesn't seem to be the force it once was, love commands and demands. Love demands that the people we care about have a say. They are a part of us (for me, they are the better part of "us"...) that deserves consideration, even if they cannot feel our full pain, weariness, or loss of self.

We need to talk with everyone that has a role of love in our lives. If they say fight, we fight.

And we simply respond to them, as Wesley did in the "Princess Bride": "As you wish...."

Good luck storming the castle, Katy and Joe. - Joe M.

monte1111
monte1111 in reply to SeosamhM

Wow. Great reply.

joekaty
joekaty in reply to SeosamhM

Beautifully written...thank you...

I went through 6 cycles of chemo myself and definitely think it was worth doing despite the side effects. I look at the good experiences, quality time I spent with my family and friends and overall quality of life during that time to draw this conclusion. If it had only extended my life by the amount of time I did it, it was still worth it in my opinion.

When making this decision, I think one very important thing to remember is that you are not deciding to do more than one cycle of chemo. I would suggest keeping the decision to only that. It's just one cycle decision at a time. After each cycle, you can evaluate: Is it helping with pain? Is it slowing progression? Is my quality of life good enough to make it worth it? Am I medically fit to continue? etc.

I wish him the best in his decision.

joekaty
joekaty in reply to gregg57

I appreciate that perspective. Thank you for sharing- I wish it was that simple in Joe’s situation. However, a lot of the problem and dilemma is that once he has even one round- it has the potential to eliminate- and most definitely delays- most trial options. Kind of a tough spot! However, I need to update this thread as he has cancelled the chemo appointment scheduled for tomorrow and made an appt in St Louis for mid-April to meet with another Dr. We will see how this all plays out- praying it’s what he wants it to be.

Kimmilemo
Kimmilemo in reply to joekaty

Hi, my husband sees Dr’s in Saint Louis that’s where we live. Who are you seeing?

To joe and katy. I'm sorry I don't have anything to contribute to help in your fight with Pca. I'm into humor. 51 years old with six children, God Bless you both. I'm tearing up just thinking about your "sweet, sensitive, kindergarten boy having such fear" and of course your other five children. I say to myself, what would I do if I had six young children? Well my answer would be to try and tough it out as long as I'm not room temperature. If there weren't any children involved or they were much older I'd agree with Joe. Then I would eat all the ice cream in the world and die with a frozen smile on my face. Again, God Bless you both and God Bless your 6 kids.

j-o-h-n Monday 03/11/2019 1:55 PM EDT

joekaty
joekaty in reply to j-o-h-n

Thank you so much for your genuine response. Joe started, and this just wasn’t ready for this group- but you have all been a Godsend to me- and it absolutely has a trickle down effect of benefitting not only Joe (by my increased sanity!) but our entire family. Unending gratitude...

Hi Katy & Joe,

I am on this journey also and I'm doing everything I can to beat this disease. I know someone who has received the Lu177 at UCLA at a clinical trial and it worked really well. I did some research and they are offering the Lu177 treatments in Germany without clinical trial so it would be an out of pocket expense. I wasn't able to qualify because the Lupron is working and my PSA is below .1. I am 61 and my cancer has spread to my pelvic lymph nodes and a spot on my hip. I had a prostatectomy in May of 2017. My original Gleason was 9 and the highest PSA I had was 1.8. I was one of those guys that don't produce a lot of PSA.

I've been doing a ketogenic diet on and off for the past 2 years, also Hyperbaric Oxygen, and I get a SOT vaccine every 4 months from the Cancer Center for Healing in Irvine CA. I also started doing medicinal CBD drops for the past year. I believe the CBD's work but they are not mainstream. My last scan showed about a 50% reduction of the disease. I'm not sure if you have been to an Integrative cancer clinic but they certainly help support your body to stay strong.

I wish you both the best and will keep you both in my prayers. I'm getting really good at that these days.

Bob

Hi Katy and Joe

Many Heartfelt responses , your in our thoughts and Praying for your family.

Becca

joekaty
joekaty in reply to Sculler

Becca, Thank you so much- as always grateful for the support in this community!

Hi Katy,

We have many likeness. My degree is in social work. We have 8 children, 2nd grade up. My husband is 51. And we are also battling this cancer demon. I have no recommendations for Joe's care. Just wanted to reach out and let you know you aren't alone!

joekaty
joekaty in reply to 4020jd

Thank you so much for reaching out! We do have a lot in common - particularly in a situation in which we are definitely not in the norm. We are Kinder- Sophomore! Would love to connect more! 😊

To everyone who replied and responded to this post- thank you. If interested- I just posted a very overdue update. It’s been quite a roller coaster since this post. Joe has had two rounds of chemo now, missed one due to being hospitalized, is supposed to have ONE more only, thank God, next week, then we are moving on to plans for 4th and 5th lines of treatment. Who’d have ever thought? Not me. Grateful we are still here. He’s still fighting like hell and simultaneously we are going to be meeting with a palliative care dr in the coming weeks. Thanks so much for all of you here...

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