I have been reading posts on hete and my dad is very very sick. I hope it's ok to post about my dad. He was diagnosed with prostate cancer in 2012. He had radiation treatments for so many weeks. Then on his birthday in 2013 he got a clean bill of health. Then last fall he thought He had hurt his back lifting sonething. He had a few weeks of on and off pain and ended up in ER. Still thinking it was his back until it persisted. So then his urologist said let's do a scan to be sure. The results came in as cancer spread to back, hips and legs. The put him on firmagon last oct. He started to get better and better each month. I couldn't believe it. In March his psa started to go up and in April they basically said his cancer is progressing after a scan. The urologist said there wasn't anything else to offer but chemo. He didn't want chemo. End of may he went on hospice, but went off because his wife wanted him to try the hormone shot again. He got a 3 month eligard shot. Not firmagon this time. I told him about zytega and he mentioned to urologist. they urologist said he needed to see an oncologist. They made an appt with oncologist and they were pushing chemo. He really didn't want chemo. They asked about a zytega and she said that it's very expensive and that zytega is a chemo pill. She wanted him to do a scan before she would prescribe the zytega. He was weak and really didn't want to run around doing the scans. In the meanwhile he went back on hospice. The eligard shot wore off this sept. He has gotten weaker and weaker all summer. Now he's in a hospital bed and has fallen twice and now is bedridden and is so weak he can't even move as of just today I'm so sick over this. I see that many people have had a lot of success with zytega and other things. I think he doesn't have much longer to live. Is he too weak for any treatments? He has also been taking thc oil. Which I think we all thought would help slow down the cancer. I just don't know anymore. I think it might be too late. He's just 70 and had a great life with his wife. I can't stop crying. I'm so sorry I have to post this in here. It's not a happy post. Is it too late for anything or any treatments?
My Dad: I have been reading posts on... - Advanced Prostate...
My Dad
My zytiga is about $8500/month, so yes, it's expensive. It does come with a chemo label, though it's not what we traditionally think of as chemo. I don't understand why the oncologist wouldn't look at the existing scans. It doesn't sound like it's too,late for regular chemo, but it's of course his option to decline. When my own dad chose not to treat his final illness, the family had to learn to accept it. You're in a very difficult spot. My thoughts and well wishes are with you.
Thanks for your reply. He had said that she ( the dr) wanted new scans. It had only been 3 months. I felt like he was discouraged to get the zytega. I don't think he wants chemo. Do you think it's too late for zytega? The only thing is he's so weak. His wife said he can't move even with help. This is so hard to take. I feel like he's on his last days. It seems that way but I'm not sure. I'm praying for a miracle but without treatment I'm not sure that can happen. The thc oil is the only thing he has at the moment.
Hi Yost,
My Xtandi also came in chemotherapy wrappings, although it's not considered chemo. And they're both about the same price.
My Xtandi was about $8,000 per month, and the Xgeva and Firmagon injections were about $1,200 each, monthly.
The drugs are very expensive, but what are our lives worth?
I was amazed at the costs. My orchiectomy cost $35,000---part of which was $ 10,000 to remove the testicles and $16,000 for the prosthetics! If I'd known the cost beforehand, and the fact that I wasn't going to live all that much longer, I might have not had the prosthetics, though.
And Yost, please keep me informed about how you're doing.
God bless you,
Eric
Thank you. We really need it!!
Of course it's OK to post about your Dad! This site is not only for men who have prostate cancer but for all their families and friends who love them. There will now be many of us thinking of you and hoping for that miracle. And may the miracle of your presence and care for him bring him some comfort in this time, too!
I'm in a similar situation. I was diagnosed in 2012 with advanced metastatic prostate cancer, Stage IV, which had spread to bone and innumerable lymph glands.
And it's perfectly appropriate to write about your father. That is why we have Health Unlocked. We are here to offer and accept mutual support and information, anything regarding prostate cancer. I'm so sorry about your dad, but I know exactly what he's going through.
I was in treatment for almost four years, but now I'm so weak that my medical oncologist said that I'm too weak for chemo, and I agree, so I entered hospice at home care on August 25. I'm too tired to go on with treatments, and there are numerous other physical problems.
Sometimes it is necessary to accept that it is time to rest from the treatments and to prepare for the inevitable. I didn't like having to go into hospice care, but it was becoming increasingly difficult to take care of myself. I can still walk, with the aid of crutches, but I'm concerne that with the increasing back pain and leg pain that I'll lose the ability to walk sometime soon.
I don't have any immediate family, so there aren't relatives to help take care of me, and with new metastases, and a bone scan showing degeneration of my entire skeletal system, plus an abdominal aneurysm and an atrophic pancreas.
I was on Xtandi for a full 25 months, plus Firmagon and Lupron at times, but the cancer adapted to the Xtandi, and the side effects were very hard on me.
I'm just 68, two years younger than your dad.
Your dad has suffered so much, and sometimes it is better to stop treatment and try to enjoy what little is left of life. I'm thankful that I can still enjoy some of the little things---flowers, sunsets, music, and now it doesn't matter what I eat.
I also have some days when I feel very ill, which is much worse than the pain; at least I have the morphine and Dilaudid to control the worst of the pain, but nothing can be done about my feeling so ill at times.
I've had to accept that my life will be very limited past this point, and I know that I couldn't physically withstand any further treatments. I didn't even expect to last this long. It's sad, but I realize that it will be time to go before long.
I'll pray for you and your father in this difficult time,
CERICWIN
I'm sorry you are going through this especially without family. That is really tough. It's really hard for me, because I wonder what could be if he got to try the zytega or any of those drugs. It really has hit me hard. It's only been 1 year that he's had the bone mets. I feel he could've had more time. Thank you for praying for us. I will also say prayers for you.
CRICWIN,
So sorry to hear about your health you have been one person that has helped me through my PC issues. I will say many prayers for you, fight on my friend.
Walt
I'm not that long on this site. But from I what I can see and read, you are a huge inspiration and fountain of knowledge. Thank you. You have my prayers and I hope you continue to enjoy the sunsets, flowers, music. You're a very courageous man.
So sorry to hear about your Dad. He has made his decision and should be made to be comfortable. Check on any last minute items to get his affairs in order. I'll say a special prayer for your Dad.
Gourd Dancer
It is almost never too late for treatment! I was diagnosed as Stage 4 in August 2012 with extensive mets in lymph nodes--too many for either surgery or radiation. Last 4 years have been a battle with many drug combinations, including Lupron, Firmagon, Zytiga, and Xtandi. Not cheap, but worth it. Drug makers have programs to assist with costs if you qualify. What is your Dad's current PSA? If bone mets, doc's should have mentioned Radium 223 or Xofigo.
If you can convince your Dad, try a Medical Oncologist at a major teaching hospital or university for a second opinion. By the way, I am 69 and still going strong.
In the end, it is up to the patient to decide how to proceed. We are all different and prostate cancer progression and treatment has millions of variations. Stay strong and supportive.
Hi. My dad was on firmagon from oct -May. It wasn't working as well in March. Then he switched to lupron 3 month in June. The oncologist offered zytega and said it's very expensive. My father opted not to do it. I tried to convince him, but he just didn't want to. I tried to get him to go to a 2nd opinion. I think he wasn't feeling well and was weak and didn't want to run around. He hasn't had his psa done since March/April. He went on hospice, but I really think they were counting on the oil to work. He's so weak now I don't know if they would put him on treatment.
I am very sorry for your dad's condition and for the pain it causes for loved ones. I suggest you look into National Cancer Institute trials. Most, not all, bear no cost to the patient, and are at the forefront in treating this disease. Most of the trials look at extending life for patients such as your dad. Depending on where you live, there can be some distance to travel for care. cancer.gov/about-cancer/tre...
Where he is now bedridden I don't know if he could even do the trials.
I am so sick over this. He can't even move in the bed now. My sister is flying to his place for 11 days. It's very hard thinking what could've been. Anyone that's been on treatments were you still able to live your full life?
John, I underwent a chemo trial for six months over 12 years ago with PSA of 32.4 and mets to T3 & L2. I haven't had any treatment for six years with mets resolved and PSA undetectable. However, my body was strong and the tumor burden lessen. I was very aggressive in my treatment. After my PSA exploded after primary treatment, I sought out a medical oncologist from academia who researched prostate cancer. Unfortunately, the scenario is now different from your Dad' situation. Consequently, I am an advocate of early agressive chemo treatment; anything given by today's standards is merely pallative in nature. I just could not sit around waiting to die in 2-4 years without trying. I am 69 years old age and living a full productive life.
You mentioned that your Dad is in hospice and as such It may be too late for a consultation with Dr. Robert Amato in Houston. Usually when the decision for hospice is made, all pallative treatment is stopped and the patient is made pain free as much as possible.
My God give all strength during this period.
Gourd Dancer
I am not sure what his insurance coverage is but I do know that Zytiga offers an assistance program, I am on Lupron, Zytiga and Avodart and the Zytiga costs me $10 per month. I know your dad is bed ridden but something inside me is saying that with a good oncologist and help this doesn't have to be the end. That said I do respect that your dad feels any further treatment is something he doesn't want to deal with.
Please know that you are in my prayers and hope your dad is made comfortable. God Bless you
I feel the exact same way!!! I feel it doesn't have to be this way. I just don't know if the treatments or side effects would be too much on him. Then he has to leave hospice and get to these appointments. I feel time is the essence. I'm I mass he's in florida. It's very hard
JLS,
Where do you live and what insurance, if any does your father have?
Joel
He is probably on Medicare which will cover much of the drugs that are available if he also has Part D. Given his needs he should opt for a very high plan in December when he can change his plan, assuming that he does not have Part D or only has a low plan.
He needs to change to a medical oncologist who specializes in treating men with prostate cancer, not a general urologist. He should be on treatment as has been reflected by many others who have responded to you.
Joel
He went from the urologist to a medical oncologist in june. They offered him chemo and zytega, but the oncologist said it's too expensive. It was discouraging. I just don't know how he could do it now. He's so weak and can't even get out of bed to go now. It's so upsetting and frustrating. I don't kow what to do. When I've brought it up in the past he says no its too expensive. I don't know how to get through to him especially now.
This is a difficult time and sometimes family has a more difficult time accepting "the inevitable" than the patient does. It sounds to me like your dad has already decided for himself. When you ask "is it too late for treatments" of course you'll get responses that say "no". But if you consider the statistics, it might be a few additional months more. For the family, that might be an easy decision, but for your dad, maybe not. He doesn't want chemo, and I expect he understands what that means. So perhaps you can best help him by trying to understand his position, accepting his decision, and being there for him and helping him make the most of his remaining time. Making him as comfortable as possible, being with him and showing that you respect his decision might be the very best thing for him.
I know. It's so hard. I wish there was a cure for this horrible disease. It affects so many people and their families. I'm having a very hard time accepting it.
You and me both. 
I have to admit that I have had time thinking about the "what ifs" and I also would hesitate to try a treatment if it just meant another couple of months. But until I reach that point, I'm trying everything I can because I do believe that the landscape in 5 - 10 years is going to be extremely different so I want to stick around until then.
jls12 - work with the best Oncologist you can find for your dad who specializes in prostate cancer if the one you have now is not offering you quality care. Please know that everyone on this site cares about your father and you very much - bless you both.
George
It's hard because I'm in mass and he's in florida. They said the zytega was chemo and he didn't like that.
I can only speak for myself but the side effects on Zytiga have been minimal sure there is fatigue but for me at least its very tolerable. I would search for a top medical oncologist someone preferably that specializes in Prostate Cancer and find out from them yourself if your dad has hope. That said your dad has the final word and sometimes family have to accept his wishes. God Bless you and all your family
He had side effects from the ocycodone. He was throwing up alot from it.
Very sorry to read about your troubles. It is not a questionable subject for the format in fact it's appropriate. My input to you is; chemo was my shall I say latest therapy after ten years of failed or Tested trials I have been on watchful waiting until watchful has become try another thing. I had hormone shots in between which I and my body are against trying again Zitega was in conjunction with hormon IMRT and Chemo. My oncology doctor from USC is suggesting another study group. My LONG STORY has a point
There is always something else to try!
In the end we're all meeting in that next place stay strong for him it's important
The only thing I can think of that has no downside that I can think of is vitamin D. Many many people have low levels, and vitamin D is important. There are a few videos already linked to on this site talking about safety. The question is efficacy - what might it do?
Vitamin D is produced in the skin, and better in white skin than in dark skin. Humans began dark skinned and changed to white under evolutionary pressure - a survival advantage in creating Vitamin D most likely. What illnesses affect people with dark skin more than with with white skin? Sickle cell anemia. Not applicable. Sexual cancers - breast cancers in women and prostate cancers in men. So the idea is that vitamin D levels relate to prostate cancer.
Do white people have adequate levels of Vitamin D, from their diet or sun exposure? Beach lifeguards have a nice level, at least during the summer. That's not your case. Dietary? Not enough.
Then there are crazy things.
My attitude has been do everything that is reasonable, and one or two things crazy.
Hash oil is crazy.
He has been on rick simpson oil. It was working then wasn't working so well. He's trying a different strain, but he has just been very weak lately.
jls12 Please support your dad's wishes. When we're told it's cancer stage 4 with mets we know we have been given a death sentence. All any of can do is except it and start the battle. At some time or another we will all die. Your dad has decided it's time to end he's battle and to rest. He is tired and can no longer carry on the fight. Love your dad and tell him you understand his wishes and it's ok. Tell him his family will be devastated without him and his advice. Tell him how much you love him and will miss him. I'm sure the last thing he wants is to hurt you and his family. Let him go with love and dignity.
I will fight cancer with my last ounce of strength. When I am to weak to continue I pray my family can understand and leave me go and respect my decision.
Dennis
I had a dear friend who bought lock, stock, and barrel into the miracles of Cannabis Oil. For a year he railed against Big Pharm's conspiracy. He spent hours on end researching and watching video lectures on a cure! He refused all forms of chemo knowing full-well that six months of infusions saved my life over 12 years ago. I honored his beliefs yet worked on him to get medical advice that could be curative rather than palliative. Heck the oil made him feel good.... His Memorial Service is this week.
GD
My Dad didn't want to do chemo even before the oil became available to him. It was something he was trying, because the zytega was so expensive. I wish I found this board a little earlier, because I really feel that the zytega may have helped him. I thought if maybe he could've read some of these boards maybe that would've helped him decide if he saw others doing well. He's so weak. I'm not doing well with all of this. It's so hard. It's even harder knowing he may of been well with zytega.
I have no experience with zytega. Thank the Lord that I not needed it; yet it's nice to know should I need this that there is an arsenal available.
I use hemp oil products but not as a pc cure. I use 50 mg a day of CBD for pain control. It works better than the norco 10/325 for me without the narcotics. I also use turkey tail mushrooms as another supplement. I use these with my RX prescribed drugs. I feel it would be folly to count on them alone.
Dennis
Sorry your dad is so sick. Hash oil was worth a try I think. I do think that if he is open to stuff, vitamin D cant get in the way of anything else. Ice cream is also fun.
Hormone therapy seems to bring about the quickest and longest lasting change. So I'd say, just check the "modality" carefully to see that you are not missing anything. Basically the options are
1. LHRL agonists and antiagonists.
2. Then drugs that interfere with testosterone synthesis in the adrenals.
3.Then anything to block the testosterone receptor on the membrane of the prostate cell.
4. Then anything that blocks the transfer of tetstosterone to the nucleus of the cell.
Those are the main standard lines of treatment action.
Then possible things are treatments that
5. distinguish between the AR-alpha (androgen receptor "alpha) and AR-beta, a slightly different testosterone receptor. I am not up on these at all.
6. Then there are unconventional ideas that look at the estrogen receptor as being the problem again in an alpha and a beta variety, I cant keep straight which one is supposes to be good and which one is supposed to be not good. Estrogen is created in the male from testosterone. You can see that the two chemicals have a similar structure.
7. And there is something called BAT that uses an injection of testosterone to boost levels way up, and that has historically had (to my understanding) evoked some positive response. I have heard doctors say the would not try it if the possibility of flare could cause damage to the spinal chord, compressing the nerves there. It can be done variable number of times and with variable dosages.
He did try a lot of alternative supplements in April when his cancer started to progress.
It's so hard he is very down and he seems to be giving up. I guess when there's nothing to look forward to and you are so weak it's very hard.
Can you speak to your dads dr and perhaps a visiting nurse should be called in to access the home situation ..start comfort palliative care and hospice ...how is your mother tending to his needs ..DFZ4835 wrote a beautiful reply ...
Hi he is already on hospice. My parents are divorced and are good people just wasn't working for them anymore. She is wonderful and is taking care of him so well. She loves him so much. She is very worn out emotionally though. Very very hard on her. All of the families are in mass they are in florida
curious if they think steroids would give a short term boost?
Hospice did put him on steroids. He just recently went downhill. He went into a hospice place for a respite after he fell. It was to give his wife a break, but they had him in bed for 3 days. He got weaker and weaker. He was having physical therapy just about a week or so ago.
did he break a bone in the fall?
what was the physical therapy for?
No thankfully he didn't. It shook him up quite bad. They were doing the physical therapy to get him stronger. I was surprised that hospice offered that.
If your dad does perk up, what will you do?
It would be nice. It's a shame, because he was doing pretty good not too long ago.
Has your sister arrived in fla to see your dad yet ...don't beat yourself up with the what ifs ..we all do it ..the hospice nurses will make him comfortable and ease your moms worries...thinking of you ...
It's wonderful that they are able to be there ..it is sad ..life can change in a flash ..we have been in fla for months from Ma ..we too lived for fishing and boating everyday ..but things change ..and I thank God for the years and memories we shared ..everyday is a gift ..
Till Jan of this year we both worked .then life took a change ..we were under treatment here and I must say the treatment was positive and wonderful ..surprising as you often hear terrible things about fla care ..I'm a nurse so I critic everything ..after trying so many treatments of chemo and radiation and rejecting all ..we even joined foundation one for genetic study ....we were told there was nothing more they could do..there was one more option of xofigo ..he was excepted into that treatment ..Boston could not treat him till mid sept so in July Larry had his first treatment here(6 treatments only ) ..he had a terrible response at first but the second tx was wonderful ..this treatment is on hold ..his lab values were too low ..a side effect from this med ..we hope to restart next week ..however flying is not the best idea right now .our family is home ..they visit freq ..this is difficult thank goodness for FaceTime.the cold bothers Larry at home ..it's not cold here that's for sure ..sorry for rambling ..I know someday there will be a cure ...
Wow it sounds like he has done a lot of treatments!! Did you say if he tried zytega or not? I don't feel my dad got the best care there unfortunately. What part of Florida are you in? You don't have to say specifically. Where did he go for his treatments in Florida? Is he going to Dana Farber now? Do you think they didn't offer as much in Fla treatment wise. My dad loved the heat until he got so sick.
We are in southwest Florida ..we would of gone to the BI in Boston .but stayed in the suburbs for all his care ..trips to Boston are too much when you feel ill..casodex Zytiga ( the best .no side effects ) except a high psa ..Xtandi .the worst .taxotere .jevtana ..repeat of taxotere and now xofigo ..along w lots of radiation for tumors and pain control ..still taking lupron.xgeva and procrit ..we had and still do have been lucky with insurance coverage ..his radical robotic surg was in 09 ..the same treatments in Ma and here in Florida were the same ..I say they both used the same recipe ...
My dad had hormone shots started last oct. From urologist. The dr did give him casodex in February, but he had some rough side effects so dr said stop taking it. Then in April psa started rising. They only offered chemo, which he didn't want. When he went to oncologist and I asked him to ask her about zytega and she said that's a chemo pill and it's very expensive. Very discouraging. How long has he had this?
I got to do FaceTime with my dad tonight!!! My sister and aunt were there and he was feeling a bit better tonight. It was really nice to see him!!! Made my entire night. I had been feeling so sad about things. He didn't talk much, but it was still nice.
Thanks to everyone who responded to my post. Just praying for my dad and hoping for something good to happen for him.
Update on my Dad
Zytiga and Firmagon 
UPDATE on my dad. A story of hope.❤️ #advancedPC
Is my husbands treatment working?
CT or PET scan
