Decision time...looking for input - Advanced Prostate...

Advanced Prostate Cancer

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Decision time...looking for input

joekaty profile image
joekaty

My husband is post chemo and now has had 4 consecutive rises on Xtandi. His doubling time is 2.2 months though he is still at a low number- 2.5 (up from a nadir of .78). Dr. told us on Friday that we need to make a decision this week about what treatment to pursue next as his cancer has been very aggressive historically. We are being presented with two options:

1. Beginning docetaxel again. He had 9 rounds before with an extremely positive response. He began right at diagnosis and his last cycle was exactly one year ago.

2. A short cycle of high dose radiation. It would be 4 times over 2.5 weeks. There is no research to support this but the radiation oncologist and Dr. Courtney both seem to believe it could likely keep his PSA down for longer, not increasing survival time but increasing time until system treatment is necessary. Right now most recent PET, bone and CT scans basically show his cancer as not “active” anywhere other than his prostate.

Looking for input on choices above but also info on where we can get the most sensitive scans that are available. I know this would likely be paying out of pocket but if there is activity anywhere else that is too small to be picked up by the scans that he has had at his PSA level, I feel like we need to know this to make a truly informed decision. At diagnosis cancer was throughout lymph nodes up to diaphragm, and in bone marrow and bones throughout axial and appendicular skeletal bodies. We are confused, struggling, looking for guidance.

Thankful for this group and any thoughts, ideas, input!

23 Replies

There are a number of clinical trials listed belowi:

cancer.gov/about-cancer/tre...

There is some evidence that adding indomethacin to Xtandi can help:

jurology.com/doi/full/10.10...

always take indomethacin with food...

Good luck,

Fish

joekaty profile image
joekaty in reply to NPfisherman

Thank you

NPfisherman profile image
NPfisherman in reply to joekaty

If you could squeeze some extra time out of Xtandi with indomethacin, that would be great....sadly, we need more drugs and they just are not there yet... If that fails, sometimes people can go back on Xtandi after treatment with docetaxol--get sensitive again..

Best of luck,

You could consider to discuss the possibility of getting a Ga 68 PSMA or 18F DCFPyl PET/CT (the most sensitive tests) and if it is positive for metastasis you could discuss the possibility of getting treatment with Lu 177 PSMA. There are clinical trials for these studies and for the Lu 177 PSMA treatment.

clinicaltrials.gov/ct2/resu...

clinicaltrials.gov/ct2/resu...

clinicaltrials.gov/ct2/resu...

I don't understand why you're considering option #2. The recent STAMPEDE trial showed there was no benefit (and potential side effects) to treating the prostate when there are so many metastases. What do you mean by "increasing the time until systemic treatment" is needed? Chemo, Lupron and Xtandi have all been systemic treatment and I assume he is continuing on Lupron, no matter what.

There's no reason not to do docetaxel again, followed by a rechallenge with Zytiga. Sometimes chemo may re-sensitize a man to the second line hormonals.

Has he had Xofigo yet? What about Provenge?There are many clinical trials he may qualify for

I don't see any point to getting a more accurate scan - what could you possibly do differently? You already know he has multiple mets - what's the difference if there are more? It is a good idea to track progression using whatever you used before (probably bone scan/CT).

joekaty profile image
joekaty in reply to Tall_Allen

I just posted again but basically...the reason to not do chemo again is that he felt like shit, had multiple ER visits and some hospitalizations, but to him most significantly he looked very ill and it scared our two youngest sons- 5 and 6 at the time. I agreed that option 2 was a dumb idea but it was two UTSW physicians recommending it as an equal option to taxotere. By increasing “time to systemic treatment” he was talking about delaying time until docetaxel was needed- not the systemic treatments he was/is already on. We did do another scan and it actually was helpful as my husband is in total denial and although he had metastasis basically everywhere in his bones- a PET in December did not show increased activity- cancer appeared quiet- but the one two months later showed multiple areas of activity in his spine. He needed to make the connection between rising PSA and increased cancer activity in a concrete way which a further scan did show. I diligently follow your posts and responses for empirical, evidence based data and information...but as a therapist (and human) people’s decision making is far from being cut and dry. My husband went to Dartmouth but if you were to have a conversation with him about his cancer you’d probably seriously question his cognitive abilities. Denial is a powerful emotion.

Tall_Allen profile image
Tall_Allen in reply to joekaty

I read a book where the author described our consciousness as a man (intentional thinking) atop an elephant (emotions, unconscious instincts) who is under the illusion that he is in charge of where the elephant goes. We can justify anything. The elephant is really in charge but does rely on the man from time to time because he can see farther. I have learned that my elephant is in control, but have gotten, with practice, more adept at understanding where the elephant is going.

I would imagine that there is a prostate cancer support group in Dallas. I think it helps to hear other men's experience of the disease.

joekaty profile image
joekaty in reply to Tall_Allen

Yes there is and it would probably help. Regardless the rest of our family could use it so it’s probably time to revisit that.

Hard to argue with Tall Allen’s logic.

Schwah

Has he tried other ADT drug ie zytiga or casodex?

joekaty profile image
joekaty in reply to Magnus1964

Started with Casodex and didn’t work- went straight to taxotere as he was hospitalized in ICU at the time and needed a fast response urgently. It was risky but worked enough to stop the bleeding and get him out of the hospital.

Are you on adt. Lupron or eligard .?

joekaty profile image
joekaty in reply to larry_dammit

Yes on Lupron. Started in hospital with degarelix and on Lupron ever since.

Moving into the use of Immunology Trials, with verification of Mutational Defects may be next. More Chemo, to see if there is going to be re-sensitivity to 2nd line drugs , is more torture IMO. There is re-sensitivity in some cases, less that 20% of the time, and the use again of the 2nd line of drugs does not last very long--some get an extra 6 months.

LU-177, Actinium 225, and BAT, as well as PARP/Checkpoint Inhibitors, may be considered. There are multiple trials ongoing, and recruiting. Spending out of pocket money on more exotic scans is IMO, not necessary--there is plenty of evidence, that Pca is in multiple places in the body.

Using Foundation One to get a Gene Mapping can start a process, as there is a strong likelihood, that there are Gene Mutations. They have an 800 number at their site. Advocates/Geneticists have lots of info that can be discussed, as to the relativeness of Mapping. Also getting an Advocate, at PCRI, this will also give you another professional resource.

People like me are amateurs--get some outside free assistance.

Nalakrats

joekaty profile image
joekaty in reply to Nalakrats

Thank you for the input! We have had Foundation One testing yes. Nothing that helped with trials except potentially CHEK1

Nalakrats profile image
Nalakrats in reply to joekaty

Do you have a PCRI advocate--they really helped me in the beginning, even with everything I thought I knew.

Nalakrats

joekaty profile image
joekaty in reply to Nalakrats

We do not have one...and I can decipher the “PC” part but not sure if the “RI”?

joekaty profile image
joekaty in reply to Nalakrats

Also, I am very aware of how LITTLE we know, unfortunately, even with how hard I have tried to read, research, stay up to date with treatments, etc. it’s quite overwhelming.

Nalakrats profile image
Nalakrats in reply to joekaty

Sorry things are overwhelming. Just keep asking, we have lots of experts, but many times they refer you to studies/trials to read, which are hard for many to interpret.

Nalakrats

Sorry no advice but:

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/12/2019 7:38 PM EST

joekaty profile image
joekaty in reply to j-o-h-n

Advice isn’t always needed- right now appreciating just knowing that we have a good support group here as well as the wealth of information.

We may be in a similar situation ourselves in the next month so thank you Joekaty and to all those who replied.

joekaty profile image
joekaty in reply to NWLiving

Best to you too. Hang in there. Thanks so much to all who responded.

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