Meds and treatments

[Madbeach]

My hubby has been on Eligard since May and on Xtandi since mid July and is already saying he doesn’t think he wants to continue with the treatments. He said he is going to ask his oncologist how much time would he have if he stops and I told him everyone is different so no one knows. Also we all know that the doctors are in bed with the pharmaceutical companies and want you to continue plus the money they make from office visits would end. Anyone else out there that has made this decision and how long has it been?

[GP24]

He could take Nubeqa which has less side effects. Joeguy does not take Eligard with it and feels great - no surprise.

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[Tall_Allen]

What your husband doesn't understand is how awful he will feel without those medications.

Your conspiracy theories are harming your husband.

[mrscruffy]

I agree with Tall Allen, my father died from this same cancer that I have. It is a horrible death. I too battled with the idea of ceasing treatment because of side effects. However, My wife and two best female friends refuse to let me go down that road, their love and caring have kept me around. They constantly tell me "we aren't through with you yet, we will let you know when it is time for you to go" Those words alone keep me going and staying with my treatment

[nonm in reply to mrscruffy]

you are surrounded by good energy

[Justfor_]

I don't have a personal knowledge apart from Casodex monotherapy (less SE) still being used in Europe. It may be a practical midpoint between what he has currently been prescribed and total treatment denial.

[GP24 in reply to Justfor_]

I agree and recommended Nubeqa/Darolutamide above which you can call a Super-Bicalutamide.

[Hidden]

I don't believe the docter/pharma conspiracy helps you or your husband an iota. Is your husband engaged in vigorous exercise? Is your husband making the necessary dietary changes? I found eating a plant based diet and switching to a 16:8 IF help immensely.

If the patient doesn't make any changes to lifestyle, they should not expect to be SE free from ADT.

[Shooter1]

Xtandi ma be the problem. My wife and I decided to cut treatments as QOL was gone. 4 years ago.

[Madbeach in reply to Shooter1]

What do you take now.?

[Shooter1 in reply to Madbeach]

2 pills--80 mg. daily

[Hidden]

O k . I just found this post . How long ? No body knows! I did imrt and Lupron for 18 . Then with an orchiectomy I dropped Lupron . I’m also on another test drug Tak-700 that is stopping adrenal production . Six years now . I went into an undetech remission right after imrt . I think he should do Lupron for at least 2 yrs . Dropping it premature is no buen . IMO . I’m not a dr . And neither is anyone else on this cite . We have dentist and doctors as members . But not one oncologist .. Follow a pro dr .

[Hidden]

My Dr Singh saved my ass! I too feel that most people in the cancer field truley do wish to help us all . I’m grateful for ach person that aided me along the way . 🙏

[Hidden]

It's your decision alone whether to continue treatments or not. Nobody here should be judging your decision, regardless of whether they agree with your opinions about doctors, Big Pharma, etc.

We are here to support each other, even though our approaches to treatment do vary. I just hate to see people making decisions based on misinformation. My hope is that you are able to make the best informed decisions you can, free of any negative influences.

I can see that you are hurting and I think most of us here understand that well. Hang in there and do whatever you can to maintain the best quality of life you can for whatever time you have.

[Lettuce231]

This is such a difficult time for you both, I personally don't think that there are any ready answers to your question. It's a very personal decision to take.

But there are many different medications for your husband, speaking for myself, I've felt like 5hit on some of them too, but sometimes there is a tweak here of there which might help.

I'm so sorry for how you feel and for your husband too, but dare I say it, without these treatments, we wouldn't be here.

Take care.

[Schwah]

Has he already done Zytega. For some, the side affects of Zytega are far less than with Xandi. I lift weights three days a week on Lupton and Zytega and my side affects are minimal. I know it can feel like the world is against you bit these are proven treatments that extend life and minimize pain.

Schwah

[teacherdude70]

Does your husband have Mets?If not then Nubeqa has few side effects. Take with Lupron not Eligard, monthly.

I changed to Lupron monthly after Eligard failed 6 months ago. Then when psa rose to near 2 started Nubeqa.

Only side effect is low energy. Like others say: got to the gym, work hard at it, and it gets better.

Monthly Lupron was my treatment for 24 months after diagnosis, had igrt and Brachy boost. Vacation for a while then Casodex till it failed. Then as above.

Now 6 years in and QOL just fine.

BUT! We are all different.

The doctor pharmacytical thoughts you have isn't doing you any good. Take on a positive attitude and things will feel better.

[Psychmed]

I agree with others. It's true big pharma makes a lot of money but they are churning out medications that weren't available a few years ago. The docs aren't looking for more money and they don't have to worry about someone stopping treatment. They are doing the best with what they have. I was on eligard for three years and do I know of side effects. Swollen legs, brain fog, fatigue, gi issues, there are a lot of them. You wouldn't be the first to wonder if it's worth it. Some guys are on it for life. But are the side effects worth gambling with your life? I doubt it. Hang in there and complain to the forum. Mike

[London441]

This may be unpopular, but I don’t see directly advising that your husband is making a terrible decision as unsupportive.

What is not known is ‘how much time he has’ if he stops, but that is not what you’re asking. You’re asking how much time he has no longer feeling poorly from the drugs. You’re also asking this of people in a profession and business you have contempt for. That part is a whole other conversation.

If he stops everything now, it will likely be several months before he feels any differently. Meanwhile the disease is advancing. If he has any of the various co morbidities exacerbated by ADT and/or is not fit and strong, his recovery will be further slowed by that.

Yet that’s only the tip of the iceberg. What absolutely know one knows is how much ice is underneath, but you would be wise to listen to those who tell you what it’s like to see someone die of metastatic disease.

This is the risk you are considering taking, and it’s premature at best. Yes, investigate switching to other drug options, sometimes it really helps.

Do you know all the details of his pathology well? Have you looked at studies relating to it? You don’t mention any of this. These details will take on fresh importance if you start gambling.

My question is always the same: What are his fitness habits? Lifting weights and cardiovascular fitness are not negotiable at his age regardless of the presence or absence of cancer. They also kill side effects like nothing else.

Stopping all treatment as a first option is certainly a personal choice, but it’s hard to believe anyone is being supportive of this.

[maley2711]

do you actually feel that way about your oncologist? If so, why not simply try someone else? I am sure that others here could provide you with names of other oncologists who would even consult with you remotely!! Is there a reasonably nearby med school clinic?

[DenDoc]

When I was in a low point 4 years ago my oncologist referred me to Palliative Care. The state that I live in has a Medical Assistance in Dying Act so I wanted to explore that as well. I met with a doctor and his social worker who were very helpful in sorting out the questions. They made me define what for me is my definition of Quality of Life. It was a painful process, many tears, but made me face my mortality as well as appreciate how much good quality life I still have while being treated. It stimulated my wife to think about her own end-of-life care since she has a chronic disease which is untreatable. In the end the social worker ran a family meeting with our two adult, local kids so they were on the same page with us. This has been life changing for us as a close family. I got lucky and put my faith in my oncologist who has given me 4 more years to enjoy what I can still do and accept those things I had to give up. I also have a very supportive Men's Group and a church community who all provide support.

Cancer is just part of my life but I can focus on the positives, enjoy my family and friends and let the physicians do their work. Covid isolation in 2020 was a bigger threat to my psyche than cancer. I am a social being and I like to help and share with others.

[garyi in reply to DenDoc]

Hey DenDoc....what state do you live in? That Medical Assistance Act sounds very valuable. I'm in Florida. Thanks!

[DenDoc in reply to garyi]

I live in Colorado which adopted the law about 5 years ago. Many people have registered but no statistics are kept on how many actually used the program. I knew one woman who had a progressive degenerative neurological disease who used it. She chose the point where she could no longer communicate verbally. Most did not know that she made a conscious choice unless they were close friends.

[garyi in reply to DenDoc]

Thank you

[jbskiatook]

I'm 79 and I was on Lupron for 10 years before it failed Then I had my testicles removed yeah I had an implant put in and I went on xtandi and I thoroughly enjoy life. There are challenges but just sit on the back porch and look at my garden and look at the trees and see the birds and all that God has to offer I'm totally satisfied with any adjustments I've had to make.

[Hidden]

My perspective might be different from many because I got to experience what end-stage symptomatic and untreated cancer is like. I wasn't too far from death at diagnosis.

The way I approach this is that all the treatments we are doing are just trying to stretch out our lives a bit more and are in essence, palliative. So as long as treatments can improve/maintain quality of life, relieve pain and hopefully buy a little more, they are worth it to me.

I expect that at some point, I will be back in the same situation I was when I started with no options left. My goal is to minimize that time rather than make it long and drawn out. That's why part of why I'm staying with treatments.

[pdaleuski]

I have been on Lupron and Xtandi since Nov 2020 and my PSA has gone down from 538 to.0.1 and my stage 4 cancer has stopped spreading. Yes, I am suffering from fatigue but other than that I feel alive and well. It would have been easy for me to throw in the towel and stop the treatment months ago but hanging in there has paid off for me at least up to now.

Never stop fighting even if it means a huge change in lifestyle and don't give up hope.....Hope is a great drug and who knows a new wonder drug could be just around the corner and help all of us.

[jfoesq]

Your belief that all doctors are in bed with the pharmaceutical companies is ridiculous and not helpful to your husband nor anyone else who hears you say it. Doctors spend MANY years training to help others. Look how many have died fulfilling their oaths when treating people suffering from Covid. There are bad apples in any bunch but to malign all doctors as being in cahoots with the pharmaceutical companies is a gross and unfair attack and a lie.I have been receiving Lupron and Zytiga for over 9 years now and I am sure I would be dead by now without them. They have unpleasant side-effects by I am happy to deal with them as they permit me to continue living and permit me to watch my 3 sons grow-up. I still play tennis, go skiing every winter, bike ride and enjoy life. I hope your husband lives long and enjoys life for a long time.

[33947]

I've been fighting this since 2006 and diagnosed mestatic in 2006 and started Eligard (and sometimes Lupron) since. One year ago my PSA jumped to over 4 and my MO added Xtani. The side effects of a full dose of Xtandi was more than I could handle and we decreased the dosage gradually to a half (80 mg) which I tolerate quite well. PSA has stabilized below 0.2 and scans show no wsigns of previous tumors. Perhaps a reduction of the Xtandi dosage will make QOL better and still satisfy the medical needs.