I'm sorta new here (been around since 2017 but just decided to ask a question for the 1st time). My dad was diagnosed with Stage 4 prostate cancer back on December 26, 2017. I don't recall exactly what his PSA levels were at that time but I want to say high 700 or 800's? He is 77, has an ICD and Type 2 diabetes.
He started Lupron and Casodex in late January 2018 and PSA levels went down to 30's. A few months later he started on Zytiga with Prednisone continuing with the Lupron injections. He has never been at undetectable levels. In mid April, his PSA levels were at 8.6 with ALP levels are and have been within normal range for a while now. On April 14th, we took him in to the hospital because he was very sick and was diagnosed with bacteremia from E.coli (urinary). He was discharged 6 days later only for us to bring him back 2 weeks later unable to breathe! We were told he had a lung abcess on his right lung and were also told then that he had a mass or met to left lung. He was discharged 4 days later, significant improvement. Took him back again Monday with cellulitis.
So... today we had a meeting at the hospital with a palliative care team. The doctor who was part of the meeting basically said because his PSA levels went from 8.9 in APril to 12 on May 13th, the cancer treatment was no longer working. However, his PSA levels have been fluctuating no higher than 12 or 13 and back down to around 7. My older sisters have been in tears and I am trying to be the strong one for everyone. My older sister spoke to that same doctor on the side and she told her that looking at the entire picture, my dad had about 6 months to live. All his organs are working properly (he does have some heart failure, but again, an ICD in place). I do not want to pretend to live in La La Land as I know that a Stage 4 diagnosis is terminal, but he was doing okay before he ended up with sepsis.
Does anyone have any advice? My main thing right now is reassuring my dad that no one is giving up on him; at least I am not. We see his M.O. in July. Although I think we should be trying to schedule to see her sooner! Thank you all in advance for letting me vent!
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Really ridiculous that doctor said your father had only 6 months to live. It's going to be important to get an pet/ct scan to see if there is any progression of the cancer. Has he had a pet/ct scan lately?
It also sounds like he is in the earlier stages of treatment and still has other medication such as xtandi, docetaxel, radium and others. Is he Chemo naive? Chemotherapy can add many years to a persons life with advanced prostate cancer. If his PSA has been fluctuating within that range, I also don't understand how the doctor can claim that he is castrate resistant.
If these doctors are in the same group, it sounds like it's time to take your dad to someplace that will give him the care he deserved. There's this perverse mind state that some doctors have when dealing with older people - that they have lived their life and it doesn't really matter anymore because they are older. So I would definitely get him for a second opinion.
My father had sepsis and it knocked the shit out of him for 3-4 weeks. He had fatigue, brain fog, and trouble breathing during that time. He fully recovered though.
So if i were you, I would try to get out of that group of doctors and find someone you trust, get a PET/CT scan to see if there is progression, and find out what other medications he could try - such as xtandi. Also look for trials.
Thank you so much, BarronS. That is exactly how I felt! Just because he is 77 doesn't mean he is ready to go! He has had it rough for the past month and how do you think he felt with that meeting this morning having to talk about advanced directives and does he want to be on life support or die naturally?! His M.O. nor his urologist view him that way. His M.O. told me herself that when Zytiga stops working, there are other things in her arsenal, so no need to worry. I have read so many stories of healthy and younger people that dealt with sepsis without cancer and had a ROUGH time; some never made it out alive! But my dad did! I am not going to give up on him. Yes he's older and has other conditions, but I am not thinking he's expiring soon. I will put a call in to his M.O. here soon and see if we can come in sooner because I am a bit upset!
Forgot to comment on the pet/ct scan! Yes. He's had like 7 of them in the last month! The only thing that was different was the lung met on May 4th. All the other doctors before this one even mentioned that his bone mets compared to the 2nd one he had after diagnosis looked even better and that everything looked really good there!
That sounds great then. My father is going through this now and the hardest thing to do is to relax. I would just say try to relax right now. There's not going to be a big difference if you get him seen 5 minutes from now or 1 week from now.
That's great news that your father has been responding to the treatment and there has been a reduction in the mets and everything looks good. It could just be that the remaining mets are still giving off the PSA and there has been no progression. I know I've seen people on here with stable PSA's in the 20s and 30s for a year or more without progression of mets.
It sounds like the moron doctor still thinks we are in late 90's and early 2000's prostate cancer treatment. There are so many options left right now, so please don't be too upset. I know it's really hard not to get upset, because I sometimes just have days where I break down.
All the best though. Please keep me updated and if you ever need someone to vent to, you can just PM me.
Thank you so much, BarronS. I appreciate you!!! I will definitely keep you updated. Have you ever entertained CBD oil? My siblings wanted to start him on that to increase his appetite to get him stronger as he has not been wanting to eat much.
I don't know much about CBD, but I do know that THC increases appetite more than CBD. I really don't think CBD has a huge affect on appetite. medium.com/@cbdprofessor/wi...
I would just be careful with CBD craze as much of it is a marketing blitz. Not saying that there aren't benefits of CBD, just that it is the new cure all elixir with billions of advertising dollars behind it.
Yes, definitely look into THC - will help with the appetite. My husband takes a THC oil to sleep (medical marijuana license/NY) but CBD oil during the day helps mood without putting him to sleep. The big appetite boost he gets is from a weed butter our friend's son makes for him.
Like BarronS said, it sounds like there are many options still available to your dad so perhaps it is time to rethink his team. My husband was diagnosed in 2013 and told he had 5 years. So six years later. . . .
Thank you! I will have my niece look into that. I am hoping the CBD oil will be a good start! May your husband continue to be filled with great health and many many many many more years!! 💖💕💖
Being in California helps as you have many more options for THC / CBD. Good luck and we look forward to hearing from you in the coming months and years how your dad is thriving.
Also if you go to a medical marijuana pharmacy you should have access to a specialist pharmacist who can advise about dosages and strains for different ailments.
Do you make the RSO yourself or purchase online? Have been trying to figure out where to buy or if we will have to make a trip to a state/country that offers it.
I went to Germany for treatment they put me on rso oil with 4 my milkthistle firmagon zytiga and steroid found couldn't take zytiga due to some form of allergy to it when I came home had to purchase from person in dublin as illegal here then started my own grow and now make it myself keep looking for that cure everyone because it's thier somewhere
Drs come in many shapes and sizes and are subject to reactionary thinking by blaming the victim when they can’t figure out what next to do....
I’ve seen a pattern with higher nadir survivors....neuroendocrine or other exotic PC cells have the control Centre occupied.....it may be time to investigate the platinum/keytruda et al/Provenge avenues to lessen their grip on the handles.
I’m also heartened by the open acceptance of lutetium peptide ligand therapies including both dotatate and 617 peptides.....more are surely on the way....I believe that varied nuclide as well as peptide bonded ligand are begging to be trialed in combination.
The PSA is just one biomarker. They should also look at what his metastases are doing. Sometimes switching from prednisone to dexamethasone can give extra time on Zytiga:
After Zytiga, you can try Xtandi - it might work for a few months. Estrogen patches is also an option, if his liver is in good shape. Provenge may give him some extra months. There are also clinical trials that he may qualify for.
I assume he is not a good candidate for docetaxel because of his other conditions, but it's worth confirming that with his oncologist.
I always am inspired and look forward to your replies and I am happy to see your reply on mine, Tall Allen! Thank you! I will definitely discuss these options with his MO. I know his liver is not in very good shape from some heart meds he took years ago when he first had his ICD implanted. : (
If he has mets to the lungs one option is Provenge. From your description I can't tell if your Dad became castrate resistant to all of the ADT drugs. Also, he will have to careful with diabetes. Some of the ADT drugs can cause diabetes so they could aggravate his condition.
BarronS is right, if these doctors aren't inspiring confidence, find new doctors. Just the fact that they told him he had 6 months would be enough for me. My first doctor told me I had 5 to 10 years. That was 27 years ago. Never let anyone tell him how much time he has. I have fired a few doctors along the way, doctors aren't gods. Give 'em hell.
Magnus! You give me hope! He has not become castrate resistant yet that we know as he has only been on Zytiga and this dumb doctor at the hospital today told us with a sad face that the treatment is no longer working. I hold on to the facts. I have been at all of his appointments since day 1 so I have seen the PSA levels rise a few points and come back down the following month.
Hi Nalakrats!! Thank you for your input and advice. This is all so frustrating as many of you that go through this know. We are my father's advocate and won't just stop at what these doctors say or suggest.
We live in Southern California about 30 to 40 minutes from UCLA and about 20 minutes from Disneyland just to give you a bit of a location marker.
Our main concern right now and goal is getting him stronger again. His MO recommended to get him off the ertapenem because it was only making him weaker. I'm no doctor, but I suspect he was dealing with central nervous system toxicity from the ertapenem because he displayed alot of the signs.
I want to give him a week or 2 to get home and get stronger and keep attacking the cancer and continue to reassure him that there is nothing further. He does have Medicare so I don't know how that will affect finding another provider.
I have found Medicare in conjunction with Gap insurance has been the best coverage I have ever had. His gap insurance may have some limitations so you may want to check into that.
All excellent advice you might want to follow sooner than later. We do feel for you, wish we had more. NEVER QUIT.
I can say that full spectrum CBD will help with pain, thus improving appetite, and sleep without interfering with meds. About 100-200mg per day spread over 4 doses.
A little THC might also help, about 25-40mg a day again using a dose every 6hrs.
If it doesn't help in my experience it doesn't hurt.
I would get a second opinion for sure....since his PSA has fluctuated up and down from 7 to 13 then why are they convinced his zytiga has failed...you could watch another month or switch from prednisone to dexamethasone as Tall Allen suggested...get rid of the MO that said he has 6 months to live.... how many stories here of people told they had only so long to live....ridiculous...
My initial diagnosis in July 2017 was stage 4, Gleason 9, the quack I went to for the second opinion started the consultation by asking me how I wanted to spend the rest of my life. I have now been written off by more doctors than Carter has liver pills and I'm feeling better now than I have in a long time (when you're 77 recovering from the cancer therapies takes a while.) Don't believe any doctor who tries to tell you how much time you have. Even the best of them are just making educated guesses.
Attitude is everything. With all your (and my) problems, it's still a beautiful world out there. You are never defeated until you quit. Never quit.
Thank you. That quack yesterday just saw this his PSA levels went from 8 to 12 in a month not considering he was also on antibiotics during that time and went and told him "the treatment is no longer working". But this was never his MO talking, just the quack from the hospital. I am soooo angry right now at that establishment. And I will fuel that to fight them further.
Well, I'm not thrilled either. It was their "Standards of Practice" that got me into this mess and I got put in a clinical trial when they knew it wouldn't do me any good before they put me in. Got a nasty side effect out of that one.
But we're stuck with each other, me and the medics, so I try to make it as professional as I can. Being nasty doesn't help.
Of course. And I am being professional through it all. Being nasty gets you know where. But again, I am human, and only I know what I felt seeing my father so upset with how they were delivering what could be incorrect information. That is what I am upset about, and I have every right to feel it and work past the feelings... : )
Don't worry about it. We're all under stress and we wouldn't be human if it didn't come out once in a while. I blew up to a totally innocent nurse practitioner a couple of weeks ago. Apologized at once, but he understood. I wasn't the first. Take care of yourself.
my husband's PSA fluctuated like that just as his Lupron Shot came due...then it went down again. As casodex/lypron failed after 5 years, his PSA shot up into the 900s...then abiraterone came out and it went way down, can't remember how low..not quite as low as your dad's but it always went up a half dozen points as he neared the Lupron shot appointment. it did that for another 5 years.
This is reassuring. He hasn't had his Lupron shot for over a month because of his hospital admissions. Everyone here is right! There are so many other factors to consider. Then I get a call from Palliative care and they tell me it's because he has 6 months to a year left. I don't even want to answer any of Kaiser's calls anymore!! : (
I just want you t know that a stage 4 diagnosis s not always a terminal diagnosis. I started with 42 radiation treatments for prostate cancer (PCa) in 2007. I was 63 yeas old. My PSA increased to 23 in 2011. I was told I had stage 4 bone cancer (after a bone scan) and was given two years. I have diabetes insulin dependent, stage 4 kidney disease, and heart disease (fibrillation on right side and stint on the left). I had 30 additional radiations and started Lupron 3 month injections. During my second radiations my colon was perforated and e-coli caused sepsis so I was hospitalized. I had 2 weeks left on radiation so after week in the hospital I would get dressed, drive down to radiation, get zapped, and drive back to the hospital and given IV antibiotics. I stayed on Lupron (Eligard - generic) for 6 1/2 years. I am still alive to tell you about it. I am selling my Condo and moving into a rest home. I am 74 years old and doing well with 10 doctors. I am living on borrowed time and I wish you husband well.
Jim my dad was diagnosed in 2002 (he was 61). Had surgery and his urologist told him no need to keep seeing him anymore as he was cured. Somewhere around 2005 or 2009 (I can't remember) his PSA Levels were going up a bit, but my dad does not recall anyone talking to him about needed treatment, etc., or he would have gone as he has always been up to date with that. December 2017 we take him to the ER for a pain in his stomach and were told it was his gallbladder. Further tests confirmed the prostate cancer was back with bone mets, Stage 4. He was referred to Palliative care yesterday and the rep that called to do a survey said that he was referred because is reaching the end of his life. Until I see his MO and she says there are no treatment options, I will continue to fight them on their opinions and work with my dad to get him stronger to where he was pre-sepsis just a month ago. They weren't treating him like a carton of milk about to expire last month before this.
I wish you continued health and happiness and luck on your next venture in life!
I was taking anti-cholesterol drugs like Mevacor and Crestor and ended up with gall bladder sludge (millions of tiny kidney stones) that made my gall keep from coming out into the small intestine. I stopped the drug and got better in about 10 days. Now I am on a new drug. There may be answers for your husband, please don't give up on therapy.
Well you Dad has been through the wringer that's for sure. Forget the 6 month prediction.. He'll be around for a long long time. Get him to another M.O. and team asap. I am fighting my lung melanoma with Keytruda and it's working. Mention Keytruda (for his lungs) to his doctor(s). Stay positive and tell your sister to save her tears, cause the more she cries the less she pees.....
John! You're officially my new best friend! I just printed your note and am about to hand it over to my sister! God Bless you and keep on fighting! I will keep that Keytruda option on hand to discuss at his appt in July.
You know my hobby is humor... But it actually makes me joyful when I make someone laugh. I call laughter a mini vacation... It's too bad I don't know your DAD because with all he's going through I would enjoy making him laugh...
BTW many many years ago I had a serious bout with cellulitis of the "knee" so I know what your Dad went through.... I told my doctor that I had Kneemonia.... he didn't think it was funny...but I did... Most doctors don't have a sense of humor.... but I still mess with them anyway.
Your Dad might appreciate this:
A Man comes home and says to his wife "Let's play doctor".
Wife says "That sound like a good idea".
Man says "I'll be the doctor and you be the patient".
Wife says "Okay I'll be the patient".
So the Man left his wife sitting on the couch for two hours.
Hi Ellie, you should never give up. All the doctors are saying is a guideline. I am currently in the hospital and my PSA went up from 300 to 700. It does mean that your current chemo may not be effective anymore, because of the elevated PSA. But there should still be alternatives. I was told on Wednesday that I have a few months left. Let’s see. Wishing you and your family strength. Clemens
I am sorry to hear you are in the hospital. Prayers for a speedy recovery. I am hoping whoever told you that you have months left is wrong so you can go stick your tongue out at them and go neener neener!! 😊
Not giving up on my father, but he is just so down and cries daily. They gave him a referral to a palliative care team which is supposed to come out and assess him anytime this week. Really wish we could see his oncologist sooner than July.
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