Stage 4, Hormone Therapy-Resistant: What happens after Chemotherapy?

Posted by cal77 @cal77, Dec 15, 2024

Hi

We went to the Oncologist last week. He said it was up to us whether we go for Chemo now or wait a few more months. Apalutamide and Eligard don't seem to be working any more. He was diagnosed April 2023.
My husband has no pain but the cancer is spreading into lymph glands and bones.
The Oncologist said is was 12 sessions of Chemo and it's done every 3 weeks. That's 9 months of feeling really awful after Chemo!!
Is that the standard? 9 months??

Then the Oncologist said if he has no pain, we could wait a few more months and re-do the CT scan and bone scan..

We thought the hormone treatment would last a few years, not just one year.
After Chemo, then what?? Does the cancer go away?

This is all so scary.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Anyone tried radio wave technology?

REPLY

Based on our experience...do the chemo. My husband finished 10 rounds of docetaxel in September. A 21 day cycle - so 5 months of chemo. 1-hour infusion every 21 days. Things have changed dramatically, and the side effects are much more manageable than even 2-3 years ago. The anti-nausea drugs that are now standard care really work. Invest in cold-pack mitts and socks to wear when being infused to reduce/eliminate the impact of neuropathy in hands and feet. Drink ONLY cold drinks while getting chemo to reduce/eliminate mouth sores. I kept a spread sheet of side-effects day-by-day, and it turned out to be quite predictable. Day 1 and 2 – on steroids – so lots of energy. Days 3 fatigue sets in, spikes about day 5-6 and is mostly over by day 8-9. But not “go-to-bed” fatigue. “Park yourself with the remote in front of the tv and take a nap in the afternoon” fatigue. In a 21-day cycle, he had about 12-14 days of "relative" normal and 7-8 days of being a permanent fixture in the recliner. But felt okay. It was definitely NOT what we feared and expected and was quite manageable. We were extremely cautious about being exposed to bugs and wore masks when in shopping malls or at theatre, etc. but otherwise maintained a version of normal life and social contact.

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The Oncologist said Chemo would be every 3 weeks for 9 months!
This is almost a year of feeling awful!
Does Chemo work? What happens after Chemo?
My husband is at Stage 4 and the hormone treatment is no longer working and this is after only a year.

Do people get Chemo and then they feel okay?
We are scared..

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@cal77

The Oncologist said Chemo would be every 3 weeks for 9 months!
This is almost a year of feeling awful!
Does Chemo work? What happens after Chemo?
My husband is at Stage 4 and the hormone treatment is no longer working and this is after only a year.

Do people get Chemo and then they feel okay?
We are scared..

Jump to this post

Chemotherapy extends life, but how long is an unknown. Everybody reacts differently. Some people with very serious cases stay on chemo for years. For most people, it’s just a series of treatments.

After chemo there is Pluvicto which, for some people can shrink or eliminate many metastasis. It works real well on 1/3 of people OK on 1/3 of people and not at all on 1/3 of people. It is, however, the next step in treatment.

Where are you being treated? Switching over to a center of excellence could help getting more targeted treatment. You don’t mention the severity of his case. What was his Gleason score? What was his PSA when he was diagnosed? What treatments did he get, What order? Did he get a decipher test, if so, what was the result? After biopsy or surgery, what was found, that can be a major factor in treatment.

It is somewhat unusual for people to have only one year of hormone therapy before it stops working. Most people with prostate cancer live many years, but there is no standard.

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@cal77

The Oncologist said Chemo would be every 3 weeks for 9 months!
This is almost a year of feeling awful!
Does Chemo work? What happens after Chemo?
My husband is at Stage 4 and the hormone treatment is no longer working and this is after only a year.

Do people get Chemo and then they feel okay?
We are scared..

Jump to this post

I just found out about these two studies. They discuss the fact that if you don’t have the right oncologist treating you, you may not be getting the correct treatments. Specifically if you are not working with a Genito urinary oncologist, you may not be getting the correct treatment. It seems that 43% of people are not getting the correct treatment because their doctors do not understand what treatments can be used and how far the PSA should be brought down after initial diagnosis. It is a real problem for people with advanced cases.

Here are the studies

CSPC
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2827619?mc_cid=64e0c6d12c&mc_eid=99575fc699
This is more information on the above study, Maybe it makes it more understandable.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2827616?mc_cid=64e0c6d12c&mc_eid=99575fc699

REPLY
@s3w

Based on our experience...do the chemo. My husband finished 10 rounds of docetaxel in September. A 21 day cycle - so 5 months of chemo. 1-hour infusion every 21 days. Things have changed dramatically, and the side effects are much more manageable than even 2-3 years ago. The anti-nausea drugs that are now standard care really work. Invest in cold-pack mitts and socks to wear when being infused to reduce/eliminate the impact of neuropathy in hands and feet. Drink ONLY cold drinks while getting chemo to reduce/eliminate mouth sores. I kept a spread sheet of side-effects day-by-day, and it turned out to be quite predictable. Day 1 and 2 – on steroids – so lots of energy. Days 3 fatigue sets in, spikes about day 5-6 and is mostly over by day 8-9. But not “go-to-bed” fatigue. “Park yourself with the remote in front of the tv and take a nap in the afternoon” fatigue. In a 21-day cycle, he had about 12-14 days of "relative" normal and 7-8 days of being a permanent fixture in the recliner. But felt okay. It was definitely NOT what we feared and expected and was quite manageable. We were extremely cautious about being exposed to bugs and wore masks when in shopping malls or at theatre, etc. but otherwise maintained a version of normal life and social contact.

Jump to this post

@s3w, such a helpful and hopeful post for @cal77. How are you and your husband doing?

REPLY

5 Years in. Year 1, Radiation, Chemo, Hormone, lots of scans. Years 2,3, PSA remained below 2. Year 4 PSA started a slow upward trend. Hormone resistance diagnosis became official on the 11th month of year 4. We start Pluvicto next month.

Side note. Year 1 was weekly and gradually became monthly oncology office visits. Years 2 to years 3.5 oncology office visits switched to every 3 months + labs. Which felt great. Now I am back on monthly labs and oncology office visits. Looking forward to starting Pluvicto. Honestly, when I started this aPC journey, back in my year 1 days, I never thought I'd make 5 years. Back to work; exercise, nutrition, mindfulness + oncology office visits.

REPLY
@s3w

Based on our experience...do the chemo. My husband finished 10 rounds of docetaxel in September. A 21 day cycle - so 5 months of chemo. 1-hour infusion every 21 days. Things have changed dramatically, and the side effects are much more manageable than even 2-3 years ago. The anti-nausea drugs that are now standard care really work. Invest in cold-pack mitts and socks to wear when being infused to reduce/eliminate the impact of neuropathy in hands and feet. Drink ONLY cold drinks while getting chemo to reduce/eliminate mouth sores. I kept a spread sheet of side-effects day-by-day, and it turned out to be quite predictable. Day 1 and 2 – on steroids – so lots of energy. Days 3 fatigue sets in, spikes about day 5-6 and is mostly over by day 8-9. But not “go-to-bed” fatigue. “Park yourself with the remote in front of the tv and take a nap in the afternoon” fatigue. In a 21-day cycle, he had about 12-14 days of "relative" normal and 7-8 days of being a permanent fixture in the recliner. But felt okay. It was definitely NOT what we feared and expected and was quite manageable. We were extremely cautious about being exposed to bugs and wore masks when in shopping malls or at theatre, etc. but otherwise maintained a version of normal life and social contact.

Jump to this post

s3w,
Thanks for all the info and tips...
The Oncologist is doing another CT scan in February and then we talk to him again whether it is time for chemo..
It's horrible to have this 'gray cloud' over us, waiting for what is going to come next.
Helps that you said you were still able to have a 'normal life'.

Thanks for your reply

REPLY
@proftom2

5 Years in. Year 1, Radiation, Chemo, Hormone, lots of scans. Years 2,3, PSA remained below 2. Year 4 PSA started a slow upward trend. Hormone resistance diagnosis became official on the 11th month of year 4. We start Pluvicto next month.

Side note. Year 1 was weekly and gradually became monthly oncology office visits. Years 2 to years 3.5 oncology office visits switched to every 3 months + labs. Which felt great. Now I am back on monthly labs and oncology office visits. Looking forward to starting Pluvicto. Honestly, when I started this aPC journey, back in my year 1 days, I never thought I'd make 5 years. Back to work; exercise, nutrition, mindfulness + oncology office visits.

Jump to this post

Pluvicto only works really well for about 1/3 of people. It works OK for 1/3 and doesn’t work at all for 1/3.

One thing you should do is get a somatic genetic test on your tissue. Also a hereditary genetic test on yourself,, this one is free at prostatecancerpromise.Org

If you have the genetic problems of RB1 or PTEN then Pluvicto will not work well. If you have BRCA Then it normally works very well. It would be helpful to find this out before getting treatment.

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@jeffmarc

Pluvicto only works really well for about 1/3 of people. It works OK for 1/3 and doesn’t work at all for 1/3.

One thing you should do is get a somatic genetic test on your tissue. Also a hereditary genetic test on yourself,, this one is free at prostatecancerpromise.Org

If you have the genetic problems of RB1 or PTEN then Pluvicto will not work well. If you have BRCA Then it normally works very well. It would be helpful to find this out before getting treatment.

Jump to this post

I checked out prostatecancerpromise.org but it looks like a no-go, probably because I reside in Canada.

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