Father Has Aggressive Prostate Cancer

[MollyJ1]

Hi, my dad (now 70 years old) was diagnosed with a rare, aggressive form of prostate cancer 22 months ago. His SPA never increased, so was not diagnosed as quickly or easily as other forms. He had bone mets by the time it was diagnosed. His first course of treatment was Taxotere and lupron, alobg with some radiation, which worked well for about 20 months. His last scan revealed tumors in the lungs, ureter, and some kidney issues because of blocked kidney stones which can't be passed because of tumors blocking the road, so to speak. He is diabetic and had heart issues in the past.

The doctor is starting him on zytiga and prednisone this week. Based on his past history, what should we look for/expect from this new treatment? When the Dr met with my dad originally, the Dr was downcast about the treatment options, but now seems to be much more optimistic. My reading indicates that Zytiga will buy little, if any, time since he already did chemo, radiation, and lupron. We are looking for quality of life more than quantity of life.

Thoughts?

Advice?

[MollyJ1]

I forgot to add that he has a line to help drain the blocked kidney, so will be living with a urine bag, unless the tumors shrink so the kidney stones can pass.

[MollyJ1 in reply to MollyJ1]

That should say his PSA never increased. Gleason scores were 9.5 and 10.

[cholly75 in reply to MollyJ1]

I think the Zytiga is likely to be very helpful. My cancer was at least as aggressive as your Dad’s and I was his age when diagnosed (Gleason 5+4). I’ve been on Zytiga for 6 years and am just now looking for a new strategy. I too had Taxotere and am receiving Lupron injections regularly. I think going on Zytiga is an excellent strategy and he should do well with it. My PSA remained >1 for 5 years on it with no new mets and prior mets disappeared. Good luck to your father in his battle.

[DaughterOnAMission in reply to cholly75]

Did you try anything else first? You went strait to zytiga after diagnosis? Should my dad start with lupron/Casodex or zytiga?

[ronnie1943 in reply to MollyJ1]

Hi Molly, my name is Lynn, my husband also had blocked kidneys. He went into kidney failure, o

Rested on. Had kidney bags, went through radaition to tumor blocking his kidney tubes and after that he was able to have the nerostomey bags removed. Taxotere and Zyriga/ Xdandi failed my husband, Just had LN removed, had mutations for a few drugs and going on a recently approved clinicial trail drug. There is always new treatments out there and more in the making. The drug Zytiga I was told by my husbands oncologist does work for many men, Xdandi may be taken without the steroid. My husband was 64 when first Dx and now is 74 young. Good luck and keep me and others here posted. We are all rooting for your Dad and for you too!!

Best wishes coming your way. Lynn. Pa.

[Tall_Allen]

I think his first response to Taxotere and Lupron was excellent, and trying Zytiga now is a great idea.

[YostConner]

Try not to be downcast yourself. It sounds like you're a great daughter, and I'm sure your dad appreciates what you're doing. I got 32 really good months from Zytiga. As Cholly75 notes below, some men get far longer. I'm glad your dad still wants to fight the beast. Best to you both.

[DaughterOnAMission in reply to YostConner]

Did you start with anything else? Or did you go straight to zytiga?

[YostConner in reply to DaughterOnAMission]

I have a long history of treatments. I’m 11 years into this. Zytiga followed surgery, radiation, ADT, and Provenge.

[DaughterOnAMission in reply to YostConner]

11 years is great. Trying to navigate and help my dad live as long as possible. Which adt?

[YostConner in reply to DaughterOnAMission]

I was originally on zolodex, but most of my time has been eligard. Just had a shot yesterday!

[jimhagood]

Ditch the Zytiga and prednisone. It will drain him pointlessly and make him indescribably more miserable. Fight the disease rationally. Get plenty of sunshine, h2o, good food, take short walks and embrace happy, uplifting interactions with friends and family.

[Dr_WHO]

Lupron turns off the testosterone (food for prostate cancer) produced by the testies. Zytiga turns off production of testosterone by the adrenal gland (why you have to take prednisone) AND testosterone produced by mutated cancer cells. You may want to ask about Xtandi. It prevents the cancer cells from absorbing testosterone.

I a so sorry that you are here, but I trust the people where with my life. They are good. Please know that not everyone here has all the answers (especially me), but we try as hard as we can to give good advice. We are realy one big extended family. After all, people like us we have to stick together.

[DaughterOnAMission in reply to Dr_WHO]

My dad was told to do Lupron, I asked the doc to look again at the bone scan as he initially said no Mets, then he suddenly said significant Mets. And said ok to Casodex and Lupron. I have been reading zytiga is better to start with instead, thoughts?

[RalphieJr64]

I start the Zytiga, Prednisone treatment next week. You can read my bio if you like. I think most of our brothers on this site lost that quality life that we remember before we were diagnosed. For me it's the quantity and learning and living the best I can with this disease. Hopefully there's a new type of quality for me. Don't give up yet. Please keep us up to date on how your Dad is doing with his new treatment.

Ralph

[Reptale]

Hi, Molly, your dad sounds a lot like me. Very aggressive cancer that didn’t raise PSA, bone mets when first diagnosed. I’m currently on Zytiga and Prednisone with no side effects. The only other treatment I can recommend is Xofigo, which is Radium 223. The body mistakes this radioactive compound for calcium and it goes right to the affected bones and delivers cancer killing radiation. Ask your Dad’s MO about it. It won’t do anything about the soft tissue mets, but there IS a good chance that Zytiga will help there. As to quality of life, I’ve found Zytiga with Prednisone to be quite tolerable with no real side effects I can identify. Your Dad is so lucky to have you in his corner!

[eggraj8]

I like your father have low PSA producing PC. I do not think it is rare but is a condition that Drs do not find because most of us in the past died quickly when found and they look for the the more easily treated cases. I have been on Taxotere along with Carboplatin and ADT for 14 months now, 19 infusions to date. I had radiation at an earlier time. I will continue on this chemo treatment as long as it works. I am not sure if your father was on Chemo for all the 20 months which would have given him close to 30 infusions or he only had a smaller number as many patients only do 6. If the Chemo worked and he only did a limited number of infusions I would think that Chemo using Carbitaxel and Carboplatin along with the lupron should be considered. I wish you both well, this is a difficult time for both of you.

[MollyMae1]

Hello, OP here to give an update. (I couldn't remember my user info and wanted to thank you all for your advice and insights.)

Zytiga worked for a few months, but my father's been in and out of the hospital for multiple infections and issues. He was just transferred into a care facility to regain some strength after a week-long hospital say for a bladder infection. His bladder almost ruptured because he was unable to urinate. Almost 3L of urine was drained once admitted.

His oncologist ran bone scans and the cancer is again active throughout his pelvic region with new bone cancer growth. Because of his heart issues, diabetes, and the state of his kidneys, the doctors don't believe any options are available. My dad is telling everyone that he is working to regain his strength so he can try chemo again (this is his idea, not his doctor's. LOL) His oncologist told my mother that further treatment will not be effective and can cause more problems and opportunity for infection. His plan is to make my dad as comfortable as possible and to let him go. I am not questioning the wisdom of this decision as I have watched his quality of life be impacted so adversely by the Zytiga (awful side effects ranging from severe constipation to explosive diarrhea that left him unable to leave his home. My mother, who is not well herself, spent most of the time doing laundry because he rarely made it to the bathroom on time.) We have hardly seen them because we are afraid of getting him sick (if one of my family has a cold or virus), so we waited for them to visit, but they couldn't due to the side effects. It has been no way to live.

My question is this...approximately how long does he have left to live because treatment is being stopped? There had been some cancer spots in his lungs at earlier scans, but no one has mentioned them, so I don't know if they are actively growing, or just in the bones and pelvic area. We are just trying to get a timeframe so as not to plan things for our kids (summer camp and vacations) during the times when we will need to be more flexible for his needs and my mother's. I appreciate any advice those of you who have walked this path can give. Thank you.