AC 225 PSMA: They have my husband... - Advanced Prostate...

Advanced Prostate Cancer

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AC 225 PSMA

Blair77 profile image
22 Replies

They have my husband scheduled to start cabizataxel/ cisplatin in a week. He has extensive bone mets, bone marrow suppression due to mets and small nodules in lungs of metastatic spread. I’m terrified he will die from the chemo. I am exploring getting him AC 225 PSMA treatment abroad instead of starting the chemo. I’m terrified of choosing one treatment over the other cause I’m unsure which one will offer him a longer life. Does anyone have an opinion which regiment will work better?

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Blair77 profile image
Blair77
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Tall_Allen profile image
Tall_Allen

There are no comparative data on either efficacy or safety. How PSMA-avid is his cancer? I'm sure his oncologist has minimal allowable blood counts (RBC,WBC and platelets) for either therapy. I think Neulasta would be a good safety measure with either therapy.

Blair77 profile image
Blair77 in reply to Tall_Allen

Any ideas where we might get a PSMA scan outside of trials?

Tall_Allen profile image
Tall_Allen in reply to Blair77

In the US, you can't get it outside of clinical trials.

Rkoma profile image
Rkoma in reply to Tall_Allen

You can get it in Germany, i.e Berlin at DTZ. Costs about 1800 Euro for 68Ga PSMA PET/CT. Also available in other Cities like Munich, Erlangen, Heidelberg, Homburg.

regards

Rkoma

NPfisherman profile image
NPfisherman in reply to Tall_Allen

Tall Allen,

There is a question of whether PEG-Filgrastim doesn't provide the same question of use as Neupogen/ Filgrastim in those that have bone mets. See below:

bloodjournal.org/content/10...

I could not find any definitive studies regarding safety with prostate cancer bone mets. and I am interested as I have a drop in neutrophil count courtesy of Abiraterone. I will be asking my MO about the use, because if safe, I will ask him to consider a dose for me in the fall. Are you aware of any studies showing clear safety--not generating bone mets. Thanks in advance for your reply.

Be well...

Don Pescado

Tall_Allen profile image
Tall_Allen in reply to NPfisherman

How much prednisone are you taking? Maybe your dose is too high for replacement.

I wouldn't take that 2007 reference too seriously - it's just based on a mouse test. Neulasta has been used for the very serious/life threatening side effect of febrile neutropenia. There is just no question that it should be used.

NPfisherman profile image
NPfisherman in reply to Tall_Allen

Thanks for your reply... I just could not find any other references to safety with bone mets-- I see my MO in 3 weeks for testing and will ask because I don't want to be immunosuppressed through fall/winter...Take care...

Don Pescado

NPfisherman profile image
NPfisherman in reply to Tall_Allen

I take prednisone 5 mg--will talk to my MO about my WBC count at the end of August...Take care,

Don Pescado

If his mets are primarily in the bone, Xofigo should be an option. I think it's a better option than AC-225 because it's already approved so it's available outside of trials and it's been proven to work. Because of the short range of the alpha particles, Xofigo is also less risk of myelosuppression when compared to chemotherapy. But they may not want to do Xofigo because of the visceral mets in the lungs. It's something you could discuss with his doctor.

If you are considering AC-225 PSMA, I would want to get a PSMA PET scan to see how much PSMA is being expressed by his cancer. That in part is going to determine how effective it is. I'd want to know that before planning a trip abroad.

Blair77 profile image
Blair77 in reply to

I keep wondering why they never suggest Xofigo. I’ve asked about it several times but the doctor always acts like it would be of no use to Mike. I’m not sure why..

in reply to Blair77

My understanding is Xofigo is a treatment for the bones only... if there is cancer outside the bones, it may not be an option??? I sure hope someone can clear this up, as we haven't been offered Xofigo either, but Koy has csncer in his liver, lung and pelvic lymphnodes...

in reply to

If you have significant visceral mets, they won't give it to you because as you said it only goes to the bone. Sounds like Koy has significant visceral mets in lung and liver. I don't know how extensive the poster's lung mets are, but I'm thinking that's the reason why they are not getting offered Xofigo.

AlanMeyer profile image
AlanMeyer

Hello Blair,

Having no knowledge of chemotherapy toxicity I looked up the FDA drug label for docetaxel. See: accessdata.fda.gov/drugsatf...

If I'm interpreting what I read correctly, patients can be killed by docetaxel chemo, but the vast majority of the ones who died in the clinical trials had liver damage BEFORE they took chemo. Search through the FDA document for "death", and for "LFT" (which stands for "Liver Function Test"). There are statistics listed for "adverse effects" for patients in clinical trials that show the number of deaths, which were 0.6% for patients with normal liver function test results but much, much higher for patients with pre-existing liver damage. The document says that liver function should be tested before each chemo session, and also gives warnings about other tests that should be performed.

The document describes docetaxel treatment for many different types of cancer. In the clinical trial for prostate cancer there were 332 patients tested. No deaths at all were listed in the adverse effects section for those patients - which I assume means there weren't any, however there were other serious side effects, so the patients need careful treatment and monitoring.

If it were me, I think I would try the chemo first. It's available everywhere, it's well understood. It's known to work to some extent for most PCa patients and spectacularly well for a few. However, I would want to assure myself that the people performing the treatment are deeply committed to patient safety. I'd want them to offer all of the recommended tests before and after chemo, use ice baths for hands and feet to reduce peripheral neuropathy, an ice cap for the head and ice chips for the mouth, and maybe also Neulasta and other treatments. I get the impression that some places that administer chemo don't give a damn about the patients and they just stick in the needles and run in the standard dose without any concern for side effects and without careful monitoring or follow-up. So do some research on the hospital offering the chemo.

I wish you the best of luck.

Alan

Blair77 profile image
Blair77

Here is the UCSF response I got when asking his doctor about safety:

Hi Blair and Mike

We will be giving weekly chemotherapy therefore in this scenario we are not able to give Neulasta as it lasts for 14 days. The risk of neutropenic sepsis with weekly chemotherapy is very low. If the neutrophil count drops below 1000, we will give Neupogen which lasts for 24-48 hours.

Best,

Rahul

AlanMeyer profile image
AlanMeyer in reply to Blair77

A fellow I know had ADT + weekly chemotherapy with 1/3 the standard dose each week as opposed to a full dose every three weeks. He said he had no significant side effects and his PSA went way down to near undetectable.

Searching Google for info on dosage and schedule I found a lot of articles discussing biweekly vs. triweekly and some discussing weekly vs. triweekly. The articles were technical, discussing issues like half-life, build-up, and clearance of drugs, changes in side effects, and so on, in ways that I don't feel competent to summarize or draw conclusions from. However I think it's a good idea to discuss the issues with an oncologist before starting treatment. If the side effects can be significantly reduced with no, or only a very small, reduction in efficacy, I think I'd want the lower side effect approach. But then I haven't discussed any of this with an oncologist, much less a scientist, and my ideas about it are not conclusive.

Alan

Sxrxrnr1 profile image
Sxrxrnr1

Ask your treating MO what is median overall survival benefit for chemo(Taxotere or Cabazitaxal).

Having experienced each, I suspect not even as long in months as the time required to undergo the usual 6 infusion treatment cycle of 18 weeks total to completion.

However some do much better, others no benefit at all but still experiencing all/most of the debilitating and damaging side effects.

MeliaQuinn profile image
MeliaQuinn

Hi Blair,

My husband has tolerated Docetaxel very well. He had 8 infusions (every 3 weeks) beginning last fall. After a couple of months of being off it his PSA began to rise again and he started it again. He has had 4 infusions (every 3 weeks) but with the continued rise of PSA we are looking at the next possible treatments. I don’t know if the LU-177 clinical trial would be a good option for your husband or not. Maybe someone here can comment. Best to you both!

snoraste profile image
snoraste

One issue to consider for you is that the efficacy of Ac225_PSMA (or Lu177) goes DOWN for patients pre-treated with chemo. So you need to think about your sequencing. As others have suggested, do a PSMA scan first to determine the avidity. You can do this at UCLA (about $2700), or in Europe (similar cost). You also maybe eligible to participate in a Lu177 trial in the US (depending on the criteria).

If you have not done so already, do a genetic test as soon as you can. Perhaps there are mutations that can be targeted.

Another option would be looking into BAT. But I'd focus on the PSMA/genetics first.

j-o-h-n profile image
j-o-h-n

Just to remind everyone, Mike is 49 years old and we all pray he will be around to see his 79th birthday. Tell him we are all pulling for him whichever way he chooses. God Bless...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/06/2019 8:48 PM DST

Blair77 profile image
Blair77

Thanks j-o-h-n I have that wish too 🥰🥰🥰🥰

Mauvemood profile image
Mauvemood

From what I have seen with my husband is the the medical oncologist ( MO ) will try proven prostate cancer regimes until they find something that works. There are side effect to all of the treatments. The hardest part is fear of the unknown each time you start a new treatment. This is a wicked disease. If your provider has a portal, monitor all tests and scans yourself so you can be more guided in your conversations with the MO. Sending hugs and prayers that you find something that works for your husband. Hang in there!

Cheerr profile image
Cheerr

Hi Blair,

Have you made any decision yet? And how are his blood levels? [RBC, Platelets].

I wish him the best in which ever treatment you choose :)

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