update on state 4 met: last year my... - Advanced Prostate...

Advanced Prostate Cancer

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update on state 4 met

Mejb65 profile image
36 Replies

last year my father was diagnosed with stage 4 metastatic prostate cancer. He had surgery to remove tumors on spine that were breaking vertebrae. Psa was 3,300. Was on casolex at hospital then switched to zytiga and prednisone xgeva. Also did targeted radiation therapy. Numbers remained below 1 for about a year. Numbers went up to 3 and they changed medication the xtandi. Worked a month then stopped. Then Provenge. Just finished but no noticeable results. My dad wants to try zytiga again with prednisone because he’s having terrible side effects with xandi and doesn’t want to do chemo right now.

Also, Testing for the brac to see if he can take different medication in that realm.

If zytiga does not work the doctor mentioned chemo and/ or Lu 177

is there a new requirement you have to have chemo before lu177?

Anyways, just looking to see if anyone has any input into the doctors course of action. Not doubting him, and obviously returning to zytiga is my fathers request, but is there anything else out there we are missing?

Thank you.

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Mejb65 profile image
Mejb65
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36 Replies
Mejb65 profile image
Mejb65

Current psa is 9 fyi

Tall_Allen profile image
Tall_Allen

There is a requirement to try chemo before Pluvicto, except in some clinical trials.

Zytiga won't work after it has failed - the cancer has learned to work around it.

Docetaxel is his best shot. It is tragic when patients who can benefit from it (survival,freedom from progression, freedom from pain and quality of life) refuse it because of what they imagine it is like.

Mejb65 profile image
Mejb65 in reply toTall_Allen

I agree. Can you provide any experience with the docetaxel for people who resist everything else? What about the Lu 177?

Also, what about this brca testing?

Tall_Allen profile image
Tall_Allen in reply toMejb65

Put those words in the search bar

AlvinSD profile image
AlvinSD in reply toMejb65

I had dose 3/6 last Monday. My hair started to fall out about 14 days after my first dose. Generally, for me (my infusions are on Monday) I’m very tired Tues-Thursday of Infusion Week but much better on Friday.

During my infusion, I’m careful to ice my hands / feet and eat ice chips. Hydration also really helps me so I take a lot of water in the days after.

I’ve not experienced nausea or loss of appetite. Unfortunately I think I’ve gained weight since starting chemo. Effects from ADT are far more impactful.

Mejb65 profile image
Mejb65 in reply toAlvinSD

Thank you for your reply

in reply toAlvinSD

I wonder if an 'ice cap' along with a complementary very short haircut could have prevented the problem with hair loss. No experience myself, just repeating a suggestion that I've heard.

AlvinSD profile image
AlvinSD in reply to

I considered that But, I’ve worn my hair very short before and it’s not bad. It’s also so warm right now so going without hair is actually cooling.

Woodstock82 profile image
Woodstock82 in reply toMejb65

I had six infusions of docetaxel, each three weeks apart. It was not nearly as bad as I had feared before I started. I had many of the most common side effects.

The steroids before and during each treatment meant that I was wired that day and the next, and then my mood and energy crashed for the rest of the week.

I didn't get thrush or mouth sores, but my tongue did feel like it had been scalded for that first week after each treatment. There were significant taste perception changes, none of them pleasant. Some people chew ice during treatments to reduce the mouth problems. I like the theory, but I don't know whether it really works.

Nausea became more of a problem as treatments progressed. Ginger (ale, tea, candies) helped somewhat, but eventually I needed the prescription anti-nausea meds.

Neuropathy in fingers and toes built up over time. Some people chill the feet and hands during treatment. Again, I like the theory, but I don't know whether it really works.

Fatigue became a problem with the later treatments as well. It was an odd feeling when walking to have my knees wobble and my legs shake, but not be out of breath at all.

I had the expected hair loss. Body hair first, then scalp hair. What surprised me was when I lost eyebrows, eyelashes, and nose hair. It took a few months, but eventually it all grew back.

I didn't lose any fingernails or toenails. I am glad to have been spared that.

Week 1 starts great, then finishes awful. Week 2 usually has gradual improvement. Week 3 is almost back to normal. Then you get to do the cycle all over again.

It's a marathon, not a sprint.

Mejb65 profile image
Mejb65 in reply toWoodstock82

Thank you for sharing your experience

joeguy profile image
joeguy in reply toTall_Allen

Mayo lists 45 "common" side effects for Docetaxel, so without even counting the serious and rare side effects, I imagine it can be pretty bad in some cases.

Tall_Allen profile image
Tall_Allen in reply tojoeguy

Most of those (losing hair, fatigue, palor, loss of appetite, nail changes, muscle soreness, edema, etc.) are not serious, and there are things you can do to prevent the most serious ones (e.g., Neulasta, prednisone, antihistamine, ice fingers and toes, ice chips in mouth, anti nausea and anti-diarrhea medicine, moisturize skin, hydration).

joeguy profile image
joeguy in reply toTall_Allen

That’s true, personally I will be most concerned about permanent neuropathy

London441 profile image
London441 in reply tojoeguy

Neuropathy? Personally I would be more concerned about dying prematurely of metastatic disease.

Most drugs have a long list of side effects. Among chemo drugs Docetaxel is relatively mild, and it tends to work.

The folklore around chemo in general is archaic and unfounded. Medicines to minimize the side effects have come a long way. I found ADT easily more challenging to tolerate.

joeguy profile image
joeguy in reply toLondon441

I actually watched my father die from chemo, not cancer, but chemo, so I am well aware of how dangerous it is.

London441 profile image
London441 in reply tojoeguy

I’m sorry for your loss. Chemo is poison for sure, and it’s a strange caveat that one has to be healthy enough to endure being poisoned to treat illness. Then it often is repeated, when one is less healthy still.

I still stand by what I said, but you are not wrong. Someday hopefully the ‘carpet bombing’ aspect of chemo will be replaced by drugs that target only cancer cells. My hunch is that immunotherapy will advance to the point of replacing all of it. In the meantime we have this, and it is very sad when it costs us loved ones and possibly our own lives. Best to you.

joeguy profile image
joeguy in reply toLondon441

Thanks London, my fathers chemo was for colon cancer and I understand that it is usually stronger than what is used for prostate cancer, but as you say, none of it is without risks.

Mejb65 profile image
Mejb65 in reply tojoeguy

Thank you

Matthew2022 profile image
Matthew2022 in reply tojoeguy

I’ve just completed 6 Docataxel cycles and have, thankfully, managed to avoid any serious side effects. The tiredness, breathlessness and hot sweats were more prevalent in my case during my last two cycles.

Mejb65 profile image
Mejb65 in reply toMatthew2022

Thank you for your reply

joeguy profile image
joeguy in reply toMatthew2022

good to know....... I am trying to get LU177 in a trial before chemo, but at some point I will probably have to try chemo as well.

Gabby643 profile image
Gabby643 in reply toTall_Allen

T-A 👍

Mejb65 profile image
Mejb65 in reply toTall_Allen

Do you know why they changed the protocol to chemo before lu 177

Tall_Allen profile image
Tall_Allen in reply toMejb65

It wasn't changed. It was always that way. That's how the VISION trial tested it, so that's how the FDA had to approve it.

There are some clinical trials that do not require chemo first:

prostatecancer.news/2020/08...

Mejb65 profile image
Mejb65 in reply toTall_Allen

Thank you for that.

In 2004 at age 57, I had nine Taxotere infusions alternated with nine Adrimyacin infusions over a six month period. Before every infusion neuropathy was discussed and checked. Blood draws were fine every week. Part of the trial was to take Erustamine alternated with Ketoconozole and 30 mg of Prednisone. Hot everyone was able to complete the trial. However, if your body is strong and the tumor burden minimal, it is the way stop and kill micro-metastases. I enrolled in the clinical trial as soon as two metastatic lesions were found on my spine. The protocol for this trial is not being used today in prostate cancer, however, it is being used in breast cancer. I never worried about any side effects as most are countered with other medicines.

I know it is a tough decision, but listen to your Medical Oncologist; hopefully he is a geniturological cancer pro,. If side effects cause problems, he will deal with it or stop chemotherapy. I wish you the best.

GD

Mejb65 profile image
Mejb65 in reply to

Thank you for your reply

Mw921000000 profile image
Mw921000000

My dad refuses to do chemo because his current treatment (Zytiga/prednisone and Lupron) has been working. However if it wasn’t, it seems Chemo would be the next best option. Since it seems you’re already in this boat I would try to encourage he do the chemo now rather than down the line. Worst case if the side effects are Intolerable they can stop it. There’s a lot Of information on here about other men’s experiences with chemo and what’s helped them get through it. I would read through some of that information and try to mention to your dad the positives of it. Good luck to you! I know how hard this is, stay hopeful.

Mejb65 profile image
Mejb65 in reply toMw921000000

Thank you so much!

moguzzi profile image
moguzzi

I was a Zytiga failure and ended up with ten sessions of docetaxel to address the constellation of bone mets that showed up on my scans. Did end up with mild neuropathy but otherwise only had to deal with manageable side effects - edema, hair loss, fatigue. No nausea, and I was able to do some exercise (lap swimming/long walks) throughout treatment to maintain my sanity. That was nearly two years ago. Situation has been stable since. Of course everyone's experience with docetaxel is different but based on mine I would encourage your father to give it serious consideration. I was a nervous wreck before the first infusion but I was carefully monitored and in the end felt it bought me more time, quality time. Tall Allen is right about not letting fear of chemo get in the way of considering a valuable, time-tested therapy.

Mejb65 profile image
Mejb65 in reply tomoguzzi

Thank you so much!

Matthew2022 profile image
Matthew2022 in reply tomoguzzi

Diitto, I have just completed 6 cycles of Docataxel chemotherapy with the same side effects. Very manageable in my case.

CocoTheAlphaCat profile image
CocoTheAlphaCat

What Tall Allen said. My journey started with six rounds of docetaxel over 5 months (mets through my entire spine, so surgery/radiation is not an option) and aside from the usual hair loss and skin pallor, side effects were really not an issue. Of course, every case can differ, as lots of others here have pointed out.

Mejb65 profile image
Mejb65 in reply toCocoTheAlphaCat

Thank you so much!

Catfish21 profile image
Catfish21

Hello Mejb65,

I got 8/10 docetaxel infusions. Yes, tiredness, insufficient oxygenation, and excessive tearing also occur. The help of ophthalmologist sometimes is needed. They flush tear canals in the eyes. But in general, it is possible to tolerate docetaxel treatment. I have multiple metastases at different levels, and after 8 infusions they became sclerotized ( bone replaces metastases). PSA decreased from 6.6 to 1.0. Chemo treatment is not so bad option. Good luck.

Mejb65 profile image
Mejb65

Thank you so much for sharing!

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