My father's metastatic cancer, a new challenge

[olloreda]

On 3/20 my father (66) was diagnosed with advanced prostate cancer, with widespread bone mets (right femur, pelvis, spine, ribs, skull, right shoulder and others). His PSA was as high as 126 in december, but on march was 36 just before diagnostic. He started Bicalutamide on march, two weeks before his first shot of Leuprolide, on April 1st/2020. He also went under radiotherapy to his right femur one week later (this was the pain that took him to see a doctor almost for first time in many years). His radioterapist want him to do radio in some spot on his spine mets.

My dad is not aware of his full diagnostic, but he knows something bad was happening since he lost almost 10% of his weight during the last year and a half. I am in charge of everything about his treatment choices, so now I am focused 24/7 reading everything about mPC. He trust me, and most of the time he says that he doesnt want to know what he has; that is the first reason we havent told him the name of this ilness, but so far he knows he has something on his prostate and bones; the other reason is that he is very sensitive, and he has been already depressed for his lost of weight, so we (I and his wife) want him to try his treatment with a positive spririt. He is also depressed because he deeply know something bad is happening and he thinks about my little 6 years old sister and his future.

Well, we are in Venezuela, and we love our country, but for many reasons here we don't have resources and availability than have other people in USA. Luckily the Leuprolide and Bicalutamide treatment are SOC and, therefore, given for free, but his MO suggested me to find a way to put him on Abiraterone treatment, since I know my father wouldnt agree to try Docexatel in this moment. I have read the last trials and I know it would be better to treat him with Abiraterone before the cancer become resistant to ADT, but unfortunaly we don't have access to that medication here, and with our 10 USD salary it would be imposible to think. Anyway, we are looking for support to hey the treatment, even if we have to take the risk with the low doses treatment.

Well, I can say I am "happy" to be here with good people who support each other on this very hard path. This site have helped me a lot to control my anxiety post-diagnostic. I was very shocked and depressed even when I was expecting this new, because it was worst from what we thought.

But well, here I am, trying to face this reality, and help my father to have the Best Quality of life during the most extended time.

Thank you for being here...I have today one month being one of the many "secret" and "silent" readers from this page.

Oscar.

[Hidden]

Welcome Oscar... fine that dad trust you ,and good looking out on his behalf. I’m not smart enough to

Answer medical questions. You’ve found a good place for answers .. Almost anything you can ask about pc will get many answers. His fortune is that he has you as a loving son.. great Job !🙏🏼

[olloreda in reply to Hidden]

Thanks Whimpy! I am sure this is an excelent place to be...just a pity the reason that make us meet here, but still it shows how "Bad" things can turn to good things.

[Hidden in reply to olloreda]

We must try to

Extend life. The muscle loss and bone density loss come from adt and treatments . Losing testosterone for us is a challenge to adjust to the new weakened and permanently altered us. Love is key to happiness. Cheer him up , spoil him with quality time . My day had pc also but I was very far away from him and didn’t see him for most of it . These treatments set us up for cardio events ..Of he can stay active or walk daily it’s a plus .. Quidate mucho el hijo bien !!

[olloreda in reply to Hidden]

Great spanish!! Lol...

Yes, I understand -at least try- everything he is going to go through with ADT. He is married with a very good woman who is living this with me and going together with him during all the way. She Lost her mom a few years algo with breast cancer, so she knows how is all about.

We give him love, but the most important love for him now is probably my little sister... quarentine is helping us to get more time together, specially with her.

My father have been always healthy and he has a good diet, very balanced, specially now that I am buying everything for his house. Until the bone scan, he used to do exercise daily after wake up, even when he was experiencing some leg pain (right femur). But doctors told him almost "not move" because the extensión of his right femur met (almost all the bone). We do radio, so I Guess in a few weeks he can do something again (we hacen been told what we can do or not, and when) So far he is just walking and doing some arm exercises. I am pushing him to keep doing ir, so is her wife and my sister.

Thanks!!

[Hidden in reply to olloreda]

Great smiles. T_A can give some answers . Stay strong 💪

[Tall_Allen]

Hi Oscar,

That is a tough situation. As I understand it, you have two problems:

(1) the best hormonal treatment isn't available there, and your father refuses to use the best treatment he can get, docetaxel.

(2) your father, for psychological reasons, doesn't want to know about his diagnosis and doesn't want to participate in treatment decisions (except that the one treatment that can benefit him, he refuses).

I think you really only have one problem - your father's psychological state. If he can see a psychiatrist, he may benefit from antidepressant medication. He should also see a psychotherapist to help him deal with his diagnosis and therapy. You will get nowhere unless the patient cooperates.

I heard Cuba is helping Venezuela. Is there a way you can procure the medicines he needs from Cuba?

- Allen

[olloreda in reply to Tall_Allen]

Allen! Thanks for your answer. Like for many others, you are one of my "masters" here, I have been reading you very carefully and I think I am a quick learner. I am already wrote down a "treatment plan" to discuss with our MO based on the information I have now. I would like to share it with you and everybody here:

I have more than hundreds of webpages opened at the same time, so I cannot look for my sources now, but anyway I go:

Several studies has shown that 7-month PSA cut is very important to predict answer to ADT. If < 0.2 is low risk (longer answer); between 0.2 and 4 is intermediate risk, and 4+ is high risk. The same predictive precision is the time to NADIR <6 is bad and after 11 months is better.

My plan is to check PSA monthly during seven months and see what happen while: a) We see how to tell my father and find some psicological help for him (I am a social science researcher so I am very familiar with psicotherapy) b) Discover how much lucky we can have with ADT (crossing finger to low risk at 7-month cut) c) we can find economic support to start Abiraterone/Enzalutamida treatment as soon as posible (since SE from Abiraterone/Enzalutamide are less evidents than with Docexatel); d) We convince my dad to go for the chemo (he has not said no yet, but all his live he claimed he would never go to chemo if he get cancer).

The good thing is that Docexatel is available for free in Venezuela, so now we have a little windows to talk to him about it and see how much information he wants, since we cannot go for chemo without his aproval. If 7-month resulta on intermediate ir high risk, I have no doubt than we need to go for either Abi/Enz ir chemo inmediately.

Yes, we have some support from Cuba, but since Covid19 everything is closed and I cannot go to ask to their embassy to see if they use Abiraterone or Enzalutamide there in mHSPC. I think they don't, so my best shot is to go for the generic in India if I can get the money (have been told that the one from Glemmark is good and cheaper) Maybe 250-500 mg with food could help us to save money even when it is not the official dosage.

My father feel good these days and he is waiting for the end of quarentine to go back to work...He is happy under his ADT treatment so far. It is hard to cut his good energy with this new, and thats the reason I would go for Abi/Enz If have the chance to do it.

Thanks again for your answer and for everything I have been learning from you since one month ago. I feel like I already know you and many others around here.

The Best,

Oscar

[Tall_Allen in reply to olloreda]

Oscar,

You are right that a more complete PSA response to ADT has a better prognosis than a less complete PSA response. It is also true that if the response is not complete, a slower response to a higher nadir has a better prognosis than a more rapid response. But that is just prognostics, I don't think it really helps you make treatment decisions.

The side effects from early use of abiraterone are just as bad as the side effects from docetaxel. They are different in kind, not in degree. People create fictions in their heads about chemo based on the experience of friends and relatives with other kinds of chemo for other kinds of cancer. Movies propagate those fictions too. Chemo used earlier is much more effective and has fewer side effects than if it is saved for last. Many people share your father's mistaken attitudes about it, and it is tragic when they do not use it. I'm not saying it is easy, but after 6 infusions (every 3 weeks) his quality of life will probably be better than it is now, and he will hopefully be able to enjoy his quality of life for longer than if he didn't take it. It does wonders for bone pain.

[olloreda in reply to Tall_Allen]

Yes, I understand what you say. But I think both actions are equally effective (Chemo and Abi), and since the aide effects are similar in degree, I give mi vote for Abi, since he don't need to go through this chemo that early.

If you ask me, I wouldnt have any doubt. I would go for the chemo, but I have more than one month reading you here, and changing my perspective progressively. My father is not living the same proccess, he hasent gone yet with his MO, just with his urologist (that is because quarentine) who explain everything withoud adding "cancer". So I would need him to go through this process first and I found easier to give him Abi pills, and just checked how is everything going.

I have a question here: it is most "effective", about OS or FP, to have chemo and then add Abi/Enz to ADT or it would be the same and it would be better to wait until second line Abi/Enz?

I Will try to convince my father to do the chemo, but It is not a piece of cake...and I don't know why but I have a feeling that Abi would be good for him (energies tell me so). But I would like to go with everything agains that cancer, and I will try.

Thanks again!

[Tall_Allen in reply to olloreda]

If you can obtain and afford either one, there is a logistical advantage to doing chemo first: after 15 weeks, he can move on to abi and have the advantage of having had both therapies in less time. If he starts with abi, it may be 3 years before he can try chemo.

As for sequencing, here is what we have learned so far:

pcnrv.blogspot.com/2019/12/...

[olloreda in reply to Tall_Allen]

Yes, I read that paper. Thats is the reason I am working in both ways: a) to convince my father to go for the chemo (I just WhatsApp his MO to push her to focus on my dad); b) doing all my research and seeking for economic help to get Abiraterone treatment (Glenmark from India, probably).

Our partner Jared just talk to me in order to donate one bottle or Zytiga for my dad. I have three Friends leaving abroad that already show their Will to donate one for him, and with my savings and family abroad we can get at least three-four more (if the final cost is around 300usd/bottle in India, with the seller we talked to). With that we would have almost one year of full dosage, or almost two at half-dosage.

I would like to do everything what is confirmed by science.

Lets see our MO answer. If she support this plan, I will try my Best to put My father under chemo, at least one shot to try. Chemo also worried me because he has low platalets, around 100.000, but so far his white cells are good (over 5.5).

If she says no, I would look for a second opinion. I have found that sometimes doctors dont pay enough attention to their patients.

[olloreda in reply to olloreda]

She (MO) just answer me and said as soon as she can see my dad personally, and check his general state and numbers, she would decide if he can go for the chemo now. It seems to me that she is more into Abiraterone than chemo, but she agree that if we can do one after another during ADT, would be our best shot. So we are on the same path.

Also she wants to put him on Zometa monthly (urologist, onc- radioterapist and MO, all agree with that). I don't agree since I have read that we can wait to resistance; My first reason are SE, second is he is not under pain nos, third is ONJ because the only thing My father has suffered during his life is periodontitis and he has several dental implante. Any advise or Word about it?

[Schwah in reply to olloreda]

Sometimes when you love someone tough love is needed. Tall Allen is right. Docetaxel with adt early is as good as adding Abi. 40% reduction in deaths adding it early vs adt alone. I’ve had it. It’s not that bad. Way easier than my wife’s chemo for breast cancer. Flu like symptoms day 3-5. You need to make him understand.

Schwah

[olloreda in reply to Schwah]

"Tough love", I don't know how to translate that, haha, but I think I know what you mean. I have to be strong and talk face to face with him about this, and avoid my fear to see him crying like a few months ago when we went to doctor first timw and he was saying "I know I am dying"...

I would make a new topic about this, but I would like to have your insights -all of You here- about the Best way to tell him, without make him think he is going to die tomorrow.

Thanks for your answer.

[Schwah in reply to olloreda]

You tell him he is sick and ask him if he wants to do everything he can to live as long as he can. Let him know that what he has is very treatable if he is willing. Let him know the treatment is not that bad and you want him to do it so he’s around as long as possible. But in the end it’s his decision. He should know The sooner he does it the better his chances. There’s no easy way but I do know you’ll regret more it if you don’t tell him (and he dies sooner) than if you do tell him and he’s upset. He’s a grown man. He deserves the truth. Thousands of men here have endured their own difficult truths. Your dad will survive his.

Schwah

[olloreda in reply to Schwah]

I just said so: I would rather have that hard moment and allow him to decide than don't do anything and always wonder "if"...I don't want to regret about it.

Our MO just told me to wait until his first control, next month, meet him (she hasnt so far because of quarentine) and take decisions then. I think she can help me with this, since, of course, the charge of this new relay on her. At the end I am his son, not his doctor, but still I want to prepare him on advanced.

Maybe he surprised us, and we -me and his wife- are the weakers in this story.

[Schwah in reply to olloreda]

I wouldn’t wait until the appointment to tell him. Tell him today so he can be mentally prepared the appointment and have time to get over he shock. You can have the time to write down questions and go your own research. Let us know how it goes. We care.

Schwah

[olloreda in reply to Schwah]

Schwah there is no rush...we are on quarentine! The time will come...but since he is good and positive, enjoying time with my 6 ys old-sister, I would rather wait...our MO also wants to wait to his first test after ADT to decide if chemo come first or we are going directly with Abi. Let see what happen, he knows already that he has something "bad", the only thing missing is the name.

[Schwah in reply to olloreda]

There is no rush but don’t wait too long. All studies have shown adding Abi or chemo to adt “early” Reduced deaths by over 40%. So even if he improves on adt alone it’s a big mistake to hold off adding one or the other. Studies actually show the increased survival is close to the same adding either one and I thought chemo is free there so seems like that’s the one right?

Schwah

[olloreda in reply to Schwah]

Yeah! It is free...but since Covid19 quarentine it is hard to find a place to give him the chemo....and of course his MO need to check if he is able to get it (blood count, etc).

I already have one donated Abi bottle, and planning to get a year cicle before starting....so after his second 3month lupron, we can star Abi or chemo and then, 15 weeks later, Abi....

Thats the plan so far...there is no rush for him to know, since the decisions is not gonna be made inmediately...the trial gave a 3 months window I think...

[hansjd in reply to olloreda]

Oscar if you can convince your father to have Docetaxel I think it would definitely be the best course of action. a) it’s free for you b) it’s over in 15 weeks c) it usually has a great effect on lowering PSA and controlling cancer d) it can reduce bone pain significantly and e) it’s side effects are very tolerable and reversible after chemo ends.

I speak of side effects from personal experience. I lost some hair, mainly the beard, and was rather flat on days 3-5 after each infusion, but that was it. I didn’t experience peripheral neuropathy, maybe because I iced my hands and feet during treatment - start 10 min before, then 20 min on, 20 min off, repeated until 10 min after.

Wishing you and your father all the best. 👍

[olloreda in reply to hansjd]

I agree 100% with you. If I were him I would go for it...and probably next Abiraterone. I would fight with all we have.

It is very important for me to know your SE and precautions about Chemo. I was thinking to share with him most of the messages from here, not now of course, but when the time comes.

Thanks and the Best for You!

[Schwah in reply to olloreda]

Not that bad SE. chew on ice and finger tips in ice during chemo. Drink lots and lots of water before and after. Get up and out and walk. I had two days of flu like symptoms days 3-4. Not that bad for me.

[olloreda in reply to Schwah]

Questions: 1. Only ice finger tips or the whole hand and feet?

2. Chew an ice during all the infusion?

3. I read some place about an "ice cap" to prevent hair loss, do you know?

[Hidden in reply to Tall_Allen]

Culturally, one can not deal with “el machismo” through a psychotherapist.

Gourd Dancer

[Sunlight12]

Oscar,

First, wow - you have taken on a lot for your Dad. Best wishes to you both and stay strong! You already have recommendations as far as treatment from guys who know this stuff far better than I do, but in terms of helping you talk to your Dad about docetaxel, I can tell you that my Dad tolerated it very well, even with a compromised liver. He had very few side effects, never completely lost his hair. He said he actually felt much better on days 2-3 and then fatigue would set in on days 4-5, but that was really the worst of all he experienced. If your Dad is pretty healthy, except for the cancer, he has an excellent chance of his body tolerating the docetaxel well.

Sending many, many positive thoughts your & your Dad's way!

In solidarity,

Sunlight

[olloreda in reply to Sunlight12]

Dear Sunlight, I have read your story and I want to express my words of support for what happened to your father. I have been going through very hard days, but have found some spiritual relieve on oriental philosophy, like budism, taoism, etc. Half of my day is finding this kind of relieve, and the resto is planning everything for My dad.

Reading you make me aware of Hepatitis or any other liver condition. I Will check for everything when he has the next blood test (I was determined to do it anyway).

Losing hair is, I Guess, one of the first worries about Chemo (it is silly, but It is). I am glad to know that your father experience with chemo was good and tolerable.

I want to give you a special thanks, because you are still here with us, making us stronger. I needed all those positive thoughts!

[Sunlight12 in reply to olloreda]

Thank you so much for all your kind words - it is amazing how much they can help! It is very good that you are taking time to restore yourself. It is one thing that I did not do while I was helping my Dad and it would have been helpful. I'm very glad that I can contribute to this community and to others' knowledge in any small way - it makes some good come out of Dad's experience and keeps his spirit alive in that way.

Thank you again! Stay well and I will keep sending positive thoughts your way Please keep us posted on how you and your Dad are doing!

-Sunlight

[olloreda in reply to Sunlight12]

I realized that sharing, talking and reading help me a lot to manage anxiety and stress about my father...so I would say that being here, for both of us, is a very important part of our own process.

I hope to have some news soon, but covid19 is not helping, haha...anyway, I hope this will be a long journey, but I am prepared for everything...positive thoughts always, but also want to be with my feet on the ground, living and celebrating each say of life.

Your fathers spirit is with you for sure...and your time here honors him.

Thanks again and keep in touch!

[monte1111]

So sorry you are in this spot. I would certainly try to have your father give chemo a try. He doesn't have to continue if he doesn't want to. It's usually only 6 sessions. I had 8 sessions and then went to Xtandi. That was 3 years ago. I'm still walking and talking. I have extensive bone mets that are "stable". Lupron, chemo, xtandi and xgeva have worked pretty well for me. I did see that Zytiga may be preferred to xtandi, but don't know that it really matters all that much. Wish your father was more involved; you are carrying a heavy load. Be sure to take care of yourself. Best of wishes.

[olloreda in reply to monte1111]

Yes,it is a heavy load, and most of the time I see myself talking about the treatment and test with an "us", so I kind of feel this is also mine. I dont find that situation is bad, but I am aware I have to take care of me too. I have a very commitment partner of life, and she is doing a lot for me these days.

There are several reasons to prefer Abi for me: 1. Feeling; 2. It is better Abi THEN Enz, following some reports about crossed resistance; 3. In case we need to reduce the doses because economical reasons, there are some good experiencies (more documented than with ENZ); 4. I think it is cheaper in India and it has more generic option so far.

Happy to hear about your own path, I hope in three years we can both talk about my father three years and your six years with "stable" disease.

My father is involved, but not the way most of you here are...he is taking good food, doing all what I tell him to do and trust in the treatment. He is being very cooperative even when he doesnt know everything (he is not fool, he is a profesional, so he knows but he just decide not to see...that is my guess).

My best for you and keep in touch!

[onajourney]

Best wishes to your father, Oscar. AND best wishes to YOU as you take on so much of this for your father.

My experience with Docetaxil was not that bad. I continued to work during the treatments, although I was VERY tired much of the time. I lost all my hair, but it grew back. I am NOT sorry I did the chemo early and would recommend your father consider it strongly.

Maybe to prepare your dad for the decisions he needs to make, introduce him to this group. Let him read the information being shared with you. Hopefully it will make him feel better to know there is an international community sharing his experience and cheering him on for the best possible results.

Again, best wishes to you, Oscar, your dad and his wife. This is not a death sentence. All of us here are examples of that.

[olloreda in reply to onajourney]

Good to know about your experiencie with chemo. I have to say that reading all what many people say here about chemo tolerability make my easier the idea of pushing him to do so. I am aware of potential problems, but also of potential benefits.

My dad cannot speak english but as soon as the time comes you can bet that I am going to share all this experience with him.

Thanks!!

[2dee]

YOU and your father should apply for Genetic Counseling, that may likely lead to Genetic Testing. If positive for certain mutations such as BRCA1 or BRCA2 he may qualify for additional treatments AND you would then be more aggressive with your own Dx and treatments.

2Dee

[olloreda in reply to 2dee]

It would be great but they are expensive,so we have to follow SOC and stay with it...all the optio a you have there are hard for us. I only hope the best. If the treatment dont work, we can take a risk and take another path if there is time and availability...it would be like going blind to the fight.

Anyway, he is the first in the family with cancer. In all generations, and they are many...I think it has to be more with his stress and anxiety.

[Fiddler2004]

You may be able to obtain xtandi for free from the manufacturer --> astellaspharmasupportsoluti...

[olloreda in reply to Fiddler2004]

Will check...it would be great. In USA, Canada or Europe you can wait until treatment fail and change...here I have to be two or three months forward to be sure we are going to have the medicine on time.

Thanks!!

[Fiddler2004]

I was started on both Lupron and Xtandi at the same time... no other treatments prior

.. Pca Stage 4 with mets all over my

Bones... outcome with Xtandi is said to be comparable to chemo... so far numbers are good. Like your Dad..

I didnt want chemo.... treatments can be rough but at least Im home (Xtandi Pills) and manage to eak out 3-4 hours of work on most days... your MO will help with dosage. God Bless you...and your Dad... Since part of this battle is mental... it will help him relax while still.getting effective treatment... stay in touch

[olloreda in reply to Fiddler2004]

Yes,a good part is mental...for that reason I am taking it slowly for him. And I want him to keep relaxed, not looking for side effects, etc, just focused on the healing process...The quarentine allow/force us to do it this way, and I am taking advantaje of that. There is a strategy "acumulative truth", and everyday he know more and more about his treatment and everything he have to do (in fact he had radiation and he need others and he knows).

I understand your position and his about chemo, and since we have options like Abi or Enz, it is a good choice to take any of them.

I am sure your results are going to be great, as they have been so far. And I hope our decision (harder becauses the resources) take us for a similar path.

Lets keep in touch to learn from both experiences! Thanks for writing!

Ps:I read about your Zometa experience...what can you tell me about it? Since they want to put my father on it!

[Fiddler2004 in reply to olloreda]

My oncologist should have given me dexamethasone to help me get through the Zometa treatment. Both my sister and a neighbor both had Zometa... no major problems after the first day or so.. both were given dexamethasone prior to treatment. My experience was not a good one so I decided to wait 6 months before having another and will make sure they give me the proper medicines to protect me from the potential major side effects.

[Fiddler2004 in reply to olloreda]

Here's a FDA link to data sheet about Zometa

[Fiddler2004 in reply to olloreda]

Ooops FDA data sheet regarding Zometa

accessdata.fda.gov/drugsatf...

[Crmp55]

Sounds very similar to my journey with this devil. I started with Mets to bones, had radiation then on to lupron and exgeva shots to strengthen bones. Now7/1/2 years into this and in remission. Tell Dad there is always light at the end of the tunnel.

[olloreda in reply to Crmp55]

Your journey make me feel happy, not only for you, of course, but also for the hope you give.

Anyway, something I told myself from the day one, it was not thinking about time...I want to be prepared because you never know. But deep inside I would like my father to be with us several years, and sometimes I allow me to think about it....so far, try to live day by day.

Havent you taken other drugs for the disease all this time? Only Lupron? And did your bone scans change over time? Just curious!

Keep on that track!! Thanks for your words...

[Crmp55 in reply to olloreda]

My scans are almost none visible 7 years later

[2dee]

My bone scans changed dramatically over 2yrs. Fully encompassed at Dx stage4, PSA 1300+, scans showed reduced by about 2/3 recently with Leupron.

PSA at 1.2 about 8 months ago, feeling pretty good lately though PSA now spiking back up at 9.2. Starting Xtandi in a couple days.

No cure but gained some valuable time extension.

2Dee

[olloreda in reply to 2dee]

Good to know...hope Lupron make the same with my fathers cancer!!

The best for you with Xtandi...

[MarkBC]

Welcome to the group. You received some great advice above. I just wanted to add that I also had Docetaxel treatments and, as noted above, I also found the side effects to be much easier to cope with than I expected. I think other types of chemo used for other cancers have a much bigger impact on the human body. Docetaxel and ADT really hit my cancer hard. My PSA dropped from 103.0 to 0.17. Today, almost two years later, I feel great. My recent scans show the tumours are staying suppressed in their shrunken state. Good luck with your father.

[olloreda in reply to MarkBC]

Great job in your battle!! I hope the same for our...I know chemo could be great and have those results...and I hope with Abi too!