Kidney failure and future treatments

[Yabaa]

Hello everyone, first of all apologies if everything is not very clear as English is not my first language (I generally speak it very well, however I'm not used to talk about medical terms).

I'd love to hear about my dad's situation.

My dad was diagnosed with Stage IV PC in September, 2022. PSA was 44.

The oncologist put him on Firmagon + Zityga until January, PSA went down to 22 by the end of December (still too high after several months of treatment, so the oncologist was planning to give him rounds of radiation in February especially targeting mets in the lower back that were starting to appear and which were not here before).

In January, he had a very severe lower back pain (at the point where he almost lost the ability to walk according to the doctors), so they decided to proceed with the radiation earlier than expected. He had "only" 5 rounds (only as I feel like usually people have more rounds but I guess this is because it was palliative here). After that, he started chemotherapy with DOCETAXEL as the oncologist declared he was castration resistant.

Since then, he had 3 rounds of chemotherapy and although he seemed to respond well at the very beginning, his PSA went up since this month (it was 10 by the end of March, and 23 now).

In addition to that, his creatinine level worsened (from 190 to 280 in less than 2 weeks), which made the oncologist ask for the installation of a double j catheter to improve his kidney functions. Because there were meds on the right side, the urologist did not manage to put the catheter there, but only on the left. They checked the creatinine level the day after the operation, and it was a bit more than 420. Because of that, the oncologist cancelled the DOCETAXEL treatment and said that as long as his creatinine level was too high, no treatment could be put in place. Regarding the right side, she said that a nephrostomie would help to make things better and then start another treatment with Cabazitaxel. My dad immediately refused it as he thinks it would be too painful to live with this and degrade his quality of life too much.

I asked her about LU177/provenge but she said that with the state of his kidney, this was totally out of question.

It is a bit difficult to talk with the oncologist as she does not necessarily take the time to explain things and makes me feel a bit "dumb" when asking about other treatments (for example LU177, which according to her does not make miracles, especially in my dad's condition, and in my country you can get access to it only after you tried hormonotherapy and chimio) and is not very talkative and empathetic (she stares at her computer screen 95% of the time).

Now with these elements in consideration, what do you think about:

- The nephrostomie? Anyone experienced this to be able to continue treatments? If so, how did you live with it?

- LU177: It would be too dangerous to try it even if his kidneys start "working" again? Considering all other treatments failed in a very short time (September 22 to May 23), I'm not sure a different kind of chemo would make a huge difference;

- Switching oncologist: has anyone changed oncologist, and was it for the better? Even if a new one won't give a miracle treatment, some extra positivity and humanity would help...

- His creatinine level were 420 last Friday, 405 today; Any chance this can continue to go down, even if the change is not that significative, or if the numbers stay relatively the same within 4 days, it means that it will stay at these levels?

- At the moment he is on Firmagon only, do you see other treatments despite of the state of his kidney?

If anyone has an insight to give me about this whole situation, I'd love to hear it thanks a lot. Not sure how long my dad will keep living and I'm obviously very worried, especially after my mother passed away only 2 months ago.

PS: Dad is a big smoker (more than 20/30 cigarettes per day, even with the chemo), not sure how this played in his overall reaction to treatments. His cancer seems to be among the agressive types but to me even if there was a 10% chance it would make things better if he stopped smoking, he should take this chance. He does not seem to be able to stop regardless and despite of all the information I give him about treatments efficacy and smoking, so I kind of gave up about this.

Thanks for reading me!

[GP24]

Discuss this with a nuclear doctor. If one kidney is still working, he should be ok.

[Yabaa in reply to GP24]

Thank you for the answer, I'll discuss this topic if I make an appointment with a different oncologist.

[GP24 in reply to Yabaa]

No, please make an appointment with a nuclear medicine physician. He would treat your father and therefore can advise you properly.

[Tall_Allen]

His oncologist is right about not giving him 177LuPSMA with poor kidney function. It is excreted through the kidneys and will damage them. If he loses kidney function he will die.

He should start on docetaxel or cabazitaxel immediately. Your father does not understand that it increases his quality of life.

His oncologist sounds like she is well-informed and knows what she's doing. If it is more important that she have eye contact and give more time, that may be your reason to change.

I know that smokers have poor bone healing. But at this point, with his kidneys failing, that may not be important. I'm sorry that you lost your mother and have to face losing your father in such a short time frame.

[Yabaa in reply to Tall_Allen]

Thanks for the clear answer, his oncologist seems competent indeed and knows what she is doing however her general lack of empathy is also having some Impact on my dad's mental well being... Maybe a simple meeting with a second oncologist would help to at least keep some hope within him which he kind of lacks at the moment, I'll see.

Regarding DOCETAXEL, the oncologist was worried it was not working as the PSA level was starting to go up again within a month and so even if his kidneys were working as expected, she would try a different kind of chemo. However in the current situation she stopped the chemotherapy as the creatinine level was too high. What my dad is afraid of is about living with the Nephrostomie, he is afraid of not being able to lay down on the back for example, which is why he was reluctant to do it.

But if it's the only way to get him back on treatment then it'll be my job to make him understand that it'd be better than dying... I'll discuss this with him if the kidneys keep failing during his next blood test.

[JGalt]

my husband had neph tubes in both kidneys for about 6 weeks during radiation and chemotherapy treatments. They can be uncomfortable but not unbearable. Best to wrap the ports that attach to the bags with old tshirts or fabric to minimize the discomfort. They were easily removed when his kidney function returned to normal

[Yabaa in reply to JGalt]

Thank you!

[jimreilly]

I have had two friends with life threatening conditions who were heavy smokers (one has died, and one is still with us). They both insist(ed) that it's necessary for their mood regulation (they don't use those words) and peace of mind. I finally gave up, maybe they're right, and they can't deal with the other terrible problems and give up smoking, too. But I have shared your frustration.

[j-o-h-n]

Would you be kind enough to tell us: his age? Location, country/city? treatment center? I would assume you're his daughter. I mentioned this to a different Father in this group. A lot of men feel intimidated by a female doctor and so they don't fully relate to them. Maybe the only way is to have her male assistant in the meeting with her.

As far as smoking is concerned, I was a heavy smoker myself, two and a half packs (50 poison sticks) of king sized un-filtered Chesterfield cigarettes a day. The only way to stop him, is to go "cold turkey" or kick him in the balls...... I stopped on June 25th 1968 and haven't had a puff since except when climbing stairs..... If possible add his data to his bio it helps us and helps him. Btw all his bio data is voluntary. Thank you and your English is better than mine.......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/16/2023 3:56 PM DST