Please advise

[BlueF]

Hello, everyone.

During the last few months, while waiting for my father's scans to be done, I have read hundreds of posts and profiles of people on this board. I have been trying to gain some knowledge and courage to face the situation in front of me, often searching for the most difficult cases and trying to find hope in their stories.

Well, now the MRI, bone scintigraphy, and CT scan of my father are over, and I'm in a state of total shock. He is 78 years old, with no prior illness. He has been working all the way until the beginning of this year when he started to feel more tired and had more urinary problems than before. There are tumors all over his skeleton, involving the rib cage, pelvis, spine, and the right side of his skull. There are tumors in his liver, with the biggest one measuring almost 6 centimeters. There are also lymph nodes involved all over. His PSA is 70 (climbing from 30 at the beginning of the year).

Last week he received a 3-month Lupron shot and Casodex. Since then, he has been feeling a lot better, less tired, and really active. However, I am in constant fear about how long this respite can last. In three days, they will be deciding what the next step is. The doctor says it will either be Zytiga or chemotherapy.

I am lost. Should I push for chemotherapy first?

(It would probably mean traveling to another hospital, 100 miles away in hope they will give chemo)

The doctor says that if they decide on chemotherapy, there will be no Zytiga until chemotherapy + Lupron stops working. But as I understand it, chemotherapy works best the earlier it is given. I have also been reading some studies claiming that prostate cancer with liver metastases often responds best to platinum chemotherapy, but it also has more side effects.

I know that liver metastases have the worst prognosis, and it's so hard to have the worst situation to begin the fight with. Also, I live in Eastern Europe, so many tools like Pluvicto, genetic testing, etc., are not available here. It took half a year just to get diagnosed and receive Lupron. If anyone has any advice about chemotherapy or Zytiga, please share.

[PSAed]

Hi BlueF, Im sorry to hear of your fathers results, hopefully the more experienced patient advocates here will reply soon. Best Wishes

[MyDad76]

Hi BlueF, like PSAed I also hope others will be able to advise. I would just like to say that as someone coming from Eastern Europe myself (Slovenia) I understand personally what it means to live in such countries. We must remember ourselves that we do the best we can in the circumstances / environment we live in. I wish you and your father all the best!

[Tall_Allen]

I hope you can convince his local doctors to treat him with the best standard of care. In his case, the best treatment is called "triplet therapy." Triplet therapy entails starting with Lupron and then adding both docetaxel and abiraterone at the same time.

If his doctor speaks English, email him this link:

thelancet.com/journals/lanc...

I don't know where in Eastern Europe you are, but the PEACE1 trial that established that triplet as the new standard of care was conducted in part at the Radiotherapy Center in Cluj, Romania.

[BlueF]

Thank you guys for you wishes and advices.

@Tall_Allen

I have already asked his doctor about triplet therapy.

She doesn't react well to any questions , Iv got yelled at and asked do I have medicinal degree.

She claims that she doesn't know anyone who gives triplet therapy and that it have stronger side effects.

Also she claims triplet therapy is given in sequence and that its same as going with lupron/zytiga and then adding chemo on failure of first therapy...

My local hospital only have few oncologists, so I think its a dead end and they will side with her if I try to push things further.

So then my best bet would be to try to find out who gives triplet therapy in the capital city. He is in good condition now, but I fear the future and how will he manage the constant 100 miles+ trips to the capital city.

If they decide to go with chemo maybe I could buy zytiga from India and he could have triplet therapy that way.

But is it even possible to buy zytiga without recipe and if it is, would it be impounded on the border.

[Schwah in reply to BlueF]

Listen to Tall Allen. The evidence is overwhelming. The triplet therapy reduces deaths by a lot. If you can’t get the triplet therapy at least try and add Zytega now. That’s been proven to reduce deaths by 40%. Look at this chart. It illustrates how the Stampede trial proved how much adding just Zytega will help. The white guys are the ones alive after three years. Note the chart on the right (with Zytega added) has a lot more white guys (alive) after three years than the chart in the left (no Zytega added).

Schwah

Chart showing extra men alive by adding Zytega

[Teacherdude72 in reply to Schwah]

What link finds that chart?

[Schwah in reply to Teacherdude72]

nejm.org/doi/full/10.1056/n...

I’m not sure where I found that chart. However a 5 year could have done it. It is a mere reflection of the PHASE 3 stampede trial results of metastatic (hormone naive men) which men who added ZYTEGA to ADT vs such men who used ADT alone. Link to that study included. The results were astonishing showing about 40% more men alive after 3 years in the group that added Zytega.

Schwah

[Teacherdude72 in reply to Schwah]

Thank you. Not there, now on Nybeqa, but knowledge is key.

[Teacherdude72 in reply to BlueF]

Find another doctor.

[MyDad76]

"She doesn't react well to any questions , I got yelled at and asked do I have medicinal degree. ..... My local hospital only have few oncologists, so I think its a dead end and they will side with her if I try to push things further."

If I would not read before that you are from Eastern Europe, I would know by these 2 sentences alone.

I'm not sure about border controls, so can't advise there. But I think it would be wise that your fathers doctor would know what medicines is he taking - with Zytiga you also need to take and manage prednisone.

[Muffin2019]

I have had liver Mets for almost a year, been through jvantana in Septembe of last year until March, the PSA was 50. In the 2 months vacation during that time the PSA rise to over 500. The radiologist told me it is rare that it goes to the liver, unlucky me. I have no Mets anywhere else so the biopsy came back as ordinary prostate Mets not small cell which is a glimmer of good. I am back on chemo, doxetal (spelling is off) and after one dose the PSA dropped to 194, do not know what it is until just before the third dose on June 7th. If this fails to lower the PSA and shrink the liver Mets then the only other is Y90 and SIRS. Pluvicto is possible if it is available so we will see. The side effects is the same as when I had it in 2018, fatigue, loss of taste of food and dry skin plus edema on the left keg. Going to try compression socks tomorrow to see if they will help or just live with it until chemo is done whenever rather is, the surgical specialist cannot believe how healthy the liver is and kidneys after all the chemo, says I have a tough liver and kidneys. Some of it could be diet, no alcohol and more towards the Mediterranean diet. For me chemo was a no brainer, throw every thing at it your body can take. I am on eligard and xgeva every 3 months. Good luck and never give up and never give in, will be on my follow list. God bless and stay safe. If he decides on chemo get the booties and ice gloves to prevent neuthropy and an ice cap might help the hair loss.

[Cooolone]

Well, one of the most important part(s) of receiving medical care is to feel, of not actually BE a part of the care decisions! Medical degrees don't not preclude the PATIENT from making decisions, and actually it "IS" the patient making decisions, not entirely the oncologist!

If for any reason you feel you are not part of the team, have doubts or questions which go unanswered, are spoken down to rather than treated as unknowing and explained to until you know not only what they're talking about but what the treatment is, it's possible side effects, co-morbidities with other health issues, etc...

Then it is time to find another doctor!

My opinion and I'll stick with it...

Good Luck and Best Regards!

[BlueF in reply to Cooolone]

Thank you for your advice, I also think that should be standard.

But I dont know if you can even imagine the situation in some less fortunate part of the world.

Let me just try:

We had to wait almost 7 months just to get diagnosed and to get lupron shot.

Even though I payed for private MRI where there was obvious it was advanced prostate cancer.

I begged them to look at it and to try to speed up the diagnosis, most of them just glanced at it or got mad and asked why I did MRI before biopsy...

In a normal country he wouldn't even had to do biopsy after results of that MRI...

They didn't want to speed up the biopsy

(its a slow growing cancer and not life threatening, that was the reasoning...) ,

then I begged them to schedule CT scan and bone scintigraphy in advance

(since biopsy was just a bureaucracy at this stage),

because you wait at least two months for those procedures here.

They didn't wanna do that also, said biopsy is a must before ordering scans...

Luckily I managed to get CT done at other hospital

(we would probably still be waiting for CT if I didn't managed to do that..)

Then the oncology experience.

You get appointment at certain time, then you wait for 2/3 hours for them to yell your name.

The waiting room is a corridor in a derelict basement, no ventilation, around 20 wooden chairs , and always 30/40 people there waiting.

Then you go inside and got yelled at and attacked for daring to ask any question.

You cant confront the doctor, since there is only like 5 or 6 of them there, and in my experience they always stick together and watch each other backs.

So you must be obedient and thankful for even getting the chance to get treatment even when getting abused since the next serious hospital is 170 miles away....

Sorry for jumbled mess of thoughts... its only a part of the story, and thats considered normal here in post communist mixture of socialism and capitalism...

[Cooolone in reply to BlueF]

No need to apologize, but without knowing where you actually are, makes it difficult to provide any reasonable suggestions. It is hard, no matter where we are, as Patients. But the effect is the same. We are fighting for our lives, and it then just all depends upon what we are able to access in terms of care. Yes, some have better access, better systems, but there's up & down in all, or better/worse. Our job is to seek out the better, if we are experiencing the worse part. It isn't easy, but we should leave no stone unturned. I know I generalize and it is different for everyone, but the effect is the same, we will get the best results from the BEST providing care.

TA had made some note of a facility in Romania, I would suggest reaching out to them and seeing if you might be accepted there for treatment? Eastern Europe is a pretty wide swath of space... Are you able to travel? Are there organizations that may assist with traveling, care, etc?

Wishing you all the best of luck and of course regards!

[BlueF in reply to Cooolone]

Thank you for your suggestions.

Before thinking about international treatment options I will first try to see if anyone in my country is able/willing to go with triplet therapy .

[larry_dammit]

I won’t tell you what to do but will tell you how my doctor and I attacked the beast. August 2016 I am stage 4 with bone Mets and lymph nodes. We decided to do 6 rounds on chemo , with a bone shot. Then I started on xtandi with Lupron and exgeva Since I have changed from lupron to eligard. Lots of side effects not sure which ones but it’s the new normal. 6 1/2 years since finishing the chemo. So I’m happy Good luck warrior. 🙏🙏🙏

[NecessarilySo]

What a lot of people don't realize is that the patient can do things on his own, between medical treatments, that can help to stabilize or diminish the problem without significant side effects. All the time spent between doctor visits, that beast is sitting there laughing. Try lycopenes and heat; (just my unprofessional opinion.)

[SteveTheJ]

Kick the fear to the curb, it isn't helping. Get the best info you can from the best doctors available and trust their advice.

My situation is not the same as your father's (probably nobody's is) but I wouldn't consider chemotherapy until the other options have proven useless.

You say he's feeling good; good! Be happy with that, enjoy the time you have with him, and hope for the best.

[MyDad76]

Dear BlueF - I feel for you. And unlike most of the members on this site I know what it means to live in Eastern Europe. It is very easy to say: triplet therapy is a must. Get genetic testing, tumor testing, trials, pluvicto, PSMA scan etc. But the fact that it might be a available in U.S. does not mean that it is the same in other parts of the world, specially in poorer countries with state health care only.

So while you try to get the best treatment for your dad, please be kind to yourself as well. We are living in different environments, different systems. And while we must advocate (something most of us coming from Eastern Europe must learn as we go), we must also not be too harsh on ourselves. We do the best we can given the environment we live in.

[Tinuriel in reply to MyDad76]

BlueF , my husband started his cancer journey in eastern Europe in 2014. We're were in Budapest, and received care there comparable to US standards. I don't know where you are located, but feel free to PM me if you could use contacts there.

[BlueF in reply to Tinuriel]

Thank you for your offer. I will first try within my country, if that fails I will contact you. Budapest is not that far away.

[BlueF in reply to MyDad76]

Indeed. Thank you for your understanding.

I am so sad he is having to face this disease in its cruelest state with such limited resources on our hands.

Especially seeing what others have on their disposal.

And as if that's not enough being yelled at and degraded while in such difficult moment in life (on first question asked....) certainly doesn't help.

[MyDad76 in reply to BlueF]

Oh, how I can relate. I could write this myself. I deal with guilt that I was not able to get / push for proper treatment for my father but I truly believe that while we must advocate for our loved ones (and ourselves) we must also be kind to ourselves. We do the best we can in the system we face. Also in our country communication with doctors is limited - they decide. Doctors are available when you have scheduled appointment, communication via phone or email is extremely rare (exception GPs). We have almost no saying in the treatment we are given - we can refuse it, sure. But we can not get different treatment to the one chosen by doctor.

So I do understand deep down what you face. For sure do advocate for you father. Do seek second opinion - but as you say, you must go to different hospital, as no one will oppose opinion of the doctor within the same hospital. But also please be kind to yourself. We do the best we can.

[BlueF in reply to MyDad76]

I am so sorry that you deal with that guilt. I hope the time will heal your wounds, I am sure you did everything in your power.

All of this is new for most of us, sadly the system should be the one stepping up in situations like these, instead of that we have to face the broken medical system...

I also had a lot of guilt and regret upon diagnosis.

I blamed myself allot for not seeing the signs of disease earlier and not forcing him years ago to go get the things checked. I couldn't sleep for few weeks and I lost much of the body weight. Slowly I came to grips with the situation, I must be strong for him now, getting myself destroyed wont do anyone any good...

Sadly you understand my position, since I see everything is exactly the same in Slovenia as is here...

[BlueF]

Thank you all so much for you valuable input.

I will be bringing him to the capital city in the hope of finding a better doctor and second opinion. Maybe somebody there is willing to give triplet therapy.

Only thing I managed to find in regards to triplet therapy in my country are few articles where doctors write it could be future standard of care... (that sadly usually means 10 years in the future...)

In the meantime I am still not sure what to do, if they refuse triplet therapy and I am offered:

a) lupron + zytiga (then chemo on failure)

b) lupron + chemo (then zytiga on failure)

What would be the smartest choice in this situation?