Haven't updated in a while...
Long story short: Dad diagnosed October 2017 with stage 4 PCa with bone metastases. Had a fresh biopsy done in February of this year after "flunking" both Lupron/Casodex, then Zytiga fairly quickly. Immunotherapy trial attempted in April after Foundation Medicine discovered a mutation in the ATM gene. Lots of radiation done since then. Issues with platelet recovery kept the cancer center from being able to initiate chemo, or the chemo trial they hoped to enroll him in (DORA--docetaxel + radium-223). Found out last Monday that there is some activity in the lungs and liver now, which is certainly not news we wanted. Oncologist said it isn't an imminent danger (organ function is fine), but he can't wait for a clinical trial anymore.
Docetaxel chemo has started, cycle #1 was Monday, a few days ago. Went fine. Waiting on side effects to show up now. So far, just tired!
Hopefully in five more cycles, I've got some good news to share! Just got to get through the six (or more if they decide that's what is right) cycles and see what may be available then. Lots of trial options for the future, I think, and Xtandi may show some usefulness after Taxotere. I did a LOT of research on THC via PubMed (medical cannabis is legal in our state) and its effect on DNA pathways, specifically in PCa and the ATM gene line, so we have started supportive therapy alongside chemotherapy--it should surely help with treatment side effects, and who knows, maybe even beyond just palliative effects.
I know what the internet says about visceral metastases, but we plan to do whatever we can to beat the odds. We'll tackle chemo, and then we'll tackle whatever comes next.
Hope all of you are feeling well and keeping your chins up!
Comments
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Guiding light
Hi Kid,
Sounds like your doing the right thing by sticking close to your Dad and helping him through this. Hopefully the chemo will kick the cancers a.. so he can recover from his journey and begin to look towards the future. Sounds like the doctors have a few more tools in their tool box to help your Dad. Good luck in the coming weeks and report back. Keep fighting, keep fighting, keep fighting.......
Dave 3+4
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Try avoiding anemia
Kid,
Thanks for sharing your dad's (and yours) journey. His status was advanced since it all started. The situation becomes critical when the lungs and liver are found to be affected. You have done the best in such conditions. I wonder if the chemo will do any good to your dad. I hope he manages to withstand the side effects.
Surely one needs to try and hope that something shows a difference. Medical cannabis seems to have some grip on pain and is friendlier than morphine which is what we PCa patients get on the list at the end of our journey. Be careful and avoid anemia. This has been a bad prognosis in most of advanced cases.
Your story is here; https://csn.cancer.org/node/319205
I hope that in your next post you tell us on improvements.
Best wishes luck.
VG
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thanks!
I imagine Xtandi will be next, but hoping to get into a Lu-177 trial (or perhaps it will just be available by then?) maybe since his cancer responds so well to radiation. There’s also Jevtana, and any number of immunotherapy trials for folks with DNA pathway issues. Just going to knock out docetaxel first.
Luckily pain has been manageable with lower doses of oxycodone, and appetite is still super which should help with some of the chemo risks.
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anemiaVascodaGama said:Try avoiding anemia
Kid,
Thanks for sharing your dad's (and yours) journey. His status was advanced since it all started. The situation becomes critical when the lungs and liver are found to be affected. You have done the best in such conditions. I wonder if the chemo will do any good to your dad. I hope he manages to withstand the side effects.
Surely one needs to try and hope that something shows a difference. Medical cannabis seems to have some grip on pain and is friendlier than morphine which is what we PCa patients get on the list at the end of our journey. Be careful and avoid anemia. This has been a bad prognosis in most of advanced cases.
Your story is here; https://csn.cancer.org/node/319205
I hope that in your next post you tell us on improvements.
Best wishes luck.
VG
Anemia hasn’t been an issue, he had a big ribeye yesterday. That should help, right? Haha! Prednisone seems to be helping with pain some and it is certainly helping the appetite.
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Very goodkidclutch said:thanks!
I imagine Xtandi will be next, but hoping to get into a Lu-177 trial (or perhaps it will just be available by then?) maybe since his cancer responds so well to radiation. There’s also Jevtana, and any number of immunotherapy trials for folks with DNA pathway issues. Just going to knock out docetaxel first.
Luckily pain has been manageable with lower doses of oxycodone, and appetite is still super which should help with some of the chemo risks.
kid, I'm glad that your dad's doctor is obviously working his case very hard. You do not mention what his PSA has been doing. With chemo, effectiveness is tracked pretty much directly from the PSA readings. As a guy who has done a lot of chemos, be aware that side-effects usually do not show instantly. Most patients need at least two infusions, and sometimes more, to feel the full blast. Extreme weakness and blood chemistry issues (neutropenia and anemia) are usually the first reactions felt. The Prednisone, as you know, assists with keeping an appetite and also energy levels.
Wishing you both great progess,
max
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PSAVery good
kid, I'm glad that your dad's doctor is obviously working his case very hard. You do not mention what his PSA has been doing. With chemo, effectiveness is tracked pretty much directly from the PSA readings. As a guy who has done a lot of chemos, be aware that side-effects usually do not show instantly. Most patients need at least two infusions, and sometimes more, to feel the full blast. Extreme weakness and blood chemistry issues (neutropenia and anemia) are usually the first reactions felt. The Prednisone, as you know, assists with keeping an appetite and also energy levels.
Wishing you both great progess,
max
PSA hit a low of 1.99 around this time last year after a while on Zytiga, hit an all-time high of 168 at last week's blood work. It was around 85 just after June radiation, but he hasn't had any sort of systemic therapy since probably December/January, so you'd think it would be higher than 168 (though I know it's not the only way to judge what the cells are doing--obviously the scans are more accurate in this case). I can update as docetaxel goes on what his PSA is doing!
This is just cycle 1, so I know more side effects are likely to show up, but we will count ourselves quite lucky to just have some fatigue and a little metal mouth for this first part of the chemo adventure. Perhaps we will be even luckier than expected! Grateful to be in good enough health to hit it hard. I know many others have not been so lucky in this same stage.
*edited to add that they will be doing weekly bloodwork throughout docetaxel.0 -
Friendkidclutch said:PSA
PSA hit a low of 1.99 around this time last year after a while on Zytiga, hit an all-time high of 168 at last week's blood work. It was around 85 just after June radiation, but he hasn't had any sort of systemic therapy since probably December/January, so you'd think it would be higher than 168 (though I know it's not the only way to judge what the cells are doing--obviously the scans are more accurate in this case). I can update as docetaxel goes on what his PSA is doing!
This is just cycle 1, so I know more side effects are likely to show up, but we will count ourselves quite lucky to just have some fatigue and a little metal mouth for this first part of the chemo adventure. Perhaps we will be even luckier than expected! Grateful to be in good enough health to hit it hard. I know many others have not been so lucky in this same stage.
*edited to add that they will be doing weekly bloodwork throughout docetaxel.kid,
I had a friend who had fought PCa about 13 years. His PSA hit 1,000 when they put him on Taxotere. As I recall (this was about six years ago), the Taxotere brought his PSA down to about 200 or so, for an 80% drop. The next year he went on Jevtana, which also did him a remarkable amount of good. The amount of benefit men get from these drugs varies dramatically, so there is cause for reasonable hope. And new stuff is comong out almost monthly it seems.
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Wowkidclutch said:UPDATE
Chemo #2 is a few days away! Blood counts are low but recovering. Side effects so far include hair loss, mild fatigue and nausea. Some pain relief. AND— the PSA is down to 76 from 172!
That is dramatic progress from one infusion ! Low WBC can be fixed with a Neulasta shot, which you can ask about later if incessary.
Chemo tosses CBC results around radically, so it is not to be surprising.
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They did mention Neulasta! MyWow
That is dramatic progress from one infusion ! Low WBC can be fixed with a Neulasta shot, which you can ask about later if incessary.
Chemo tosses CBC results around radically, so it is not to be surprising.
They did mention Neulasta! My sister had to use it when she went through chemo for breast cancer. Pleased about the PSA drop and hope it continues to fall, but more hoping for some shrinking on the next set of scans. Feeling pretty good so far. Monday is cycle 2!
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PSA of 708Friend
kid,
I had a friend who had fought PCa about 13 years. His PSA hit 1,000 when they put him on Taxotere. As I recall (this was about six years ago), the Taxotere brought his PSA down to about 200 or so, for an 80% drop. The next year he went on Jevtana, which also did him a remarkable amount of good. The amount of benefit men get from these drugs varies dramatically, so there is cause for reasonable hope. And new stuff is comong out almost monthly it seems.
My husband has been on taxotere, hormonal therapyand now back to Jevtana. Doctor said yesterday that this is the last FDA approved chemo they can give him. Next step is clinical trials. Anyone have an opinion on these. He says he doesn't really wanna be an experiement. Any suggestions?
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Clinical trialsJamesLana said:PSA of 708
My husband has been on taxotere, hormonal therapyand now back to Jevtana. Doctor said yesterday that this is the last FDA approved chemo they can give him. Next step is clinical trials. Anyone have an opinion on these. He says he doesn't really wanna be an experiement. Any suggestions?
Hi there,
Some men have done well on clinical trials, obviously they are by their nature experimental with new drugs that need to be taken through human trials but they have already been through extensive animal testing for effectivity against prostate cancer and toxicity so the risks are low and the chance of a good outcome quite reasonable.
I was for a few years a wild eyed lab rat cooking up new molecules to be used for treating patients by the white coated fraternity.
It is a sort of poetic justice that over a quarter of a century later I have had prostate cancer and although I am currently in remission it is likely that it will return and given my age I will finish up in a clinical trial! :-(
Best wishes,
Georges0 -
Z ?JamesLana said:PSA of 708
My husband has been on taxotere, hormonal therapyand now back to Jevtana. Doctor said yesterday that this is the last FDA approved chemo they can give him. Next step is clinical trials. Anyone have an opinion on these. He says he doesn't really wanna be an experiement. Any suggestions?
Lana,
I am assuming then that he has done Zytiga already ? It is also a post-taxane, castration-resistant drug.
http://chemocare.com/chemotherapy/drug-info/zytiga.aspx
.
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Something good to make up for the bad ... ... ...
Kid,
If I understood well, his protocol includes the Docetaxel fusions (6 sessions) plus Oxycodone to which you have added THC. The side effects were most noticed in hair loss, fatigue and nausea. Regarding risks, he has experienced low WBC. The PSA that at the start was 168 has declined to 172 by the end of the first fusion and now at the end of the second fusion it reached 76. This is something not just good but superb. I hope it continues this path of effectiveness towards the end of the chemotherapy and that it manages to keep such low profiles once out of the chemo.
You commented above wishing to participate in a Lu-177 clinical trial and I think that it would be in your father's favor if he could get involved in this trial after the Taxotere. The NCI trial (government covered) combines LU-177 with Pembrolizumab which is the drug used successfully to treat some forms of cancer involving the work of the Nobel Laureate Dr. James P. Allison. There are many restrictions for enrollment so that you need to be careful on the procedures done now while on the chemotherapy. You can read details in this link;
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-02993&r=1
Pembrolizumab have been on trials phase 2 and 3 for other cancers but it has proven to be reliable in PCa cases when used along side with some form of concurrent therapy (for instance enzalutamide-Xtandi). It is expected therefore that it will benefit the outcome of treatments with PSMA radiopharmaceuticals. PSMA stands for prostatic specific membrane antigen (present in all prostatic cells) and that constitutes a prerequisite for inclusion in above trial. Probably your dad will have to get a PET PSMA scan to confirm his eligibility.
Here is a link on the results of Pembrolizumab from ASCO;
This is still too early to get involved but it is a matter to consider and that requires your attention to the steps in the present treatment.
Best wishes and luck in this journey.
VGama
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Chemo dosage was reducedVascodaGama said:Something good to make up for the bad ... ... ...
Kid,
If I understood well, his protocol includes the Docetaxel fusions (6 sessions) plus Oxycodone to which you have added THC. The side effects were most noticed in hair loss, fatigue and nausea. Regarding risks, he has experienced low WBC. The PSA that at the start was 168 has declined to 172 by the end of the first fusion and now at the end of the second fusion it reached 76. This is something not just good but superb. I hope it continues this path of effectiveness towards the end of the chemotherapy and that it manages to keep such low profiles once out of the chemo.
You commented above wishing to participate in a Lu-177 clinical trial and I think that it would be in your father's favor if he could get involved in this trial after the Taxotere. The NCI trial (government covered) combines LU-177 with Pembrolizumab which is the drug used successfully to treat some forms of cancer involving the work of the Nobel Laureate Dr. James P. Allison. There are many restrictions for enrollment so that you need to be careful on the procedures done now while on the chemotherapy. You can read details in this link;
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-02993&r=1
Pembrolizumab have been on trials phase 2 and 3 for other cancers but it has proven to be reliable in PCa cases when used along side with some form of concurrent therapy (for instance enzalutamide-Xtandi). It is expected therefore that it will benefit the outcome of treatments with PSMA radiopharmaceuticals. PSMA stands for prostatic specific membrane antigen (present in all prostatic cells) and that constitutes a prerequisite for inclusion in above trial. Probably your dad will have to get a PET PSMA scan to confirm his eligibility.
Here is a link on the results of Pembrolizumab from ASCO;
This is still too early to get involved but it is a matter to consider and that requires your attention to the steps in the present treatment.
Best wishes and luck in this journey.
VGama
Chemo dosage was reduced today after my dad explained his fatigue. They’ll be “topping him off” with a bag of blood later this week, not an emergency. WBC recovering every time and platelet recovery very improved compared to over the last several months.
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oh, and
the PSA was 172 on the day of the first chemo, then dropped to 76 after the first infusion, crept up to 82 before the second, and is now back down to 77ish before yesterday's (third) infusion. Something is working somewhere. Scans in two weeks will give a better overview of progress.
0
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