So, I'm slowly (or quickly) learning the normal in PCa is a rollercoaster. Good reports, PSA declining to immeasurable, "dormant" cancer, feeling like you can finally breathe -- then bad news of heart disease to the point of needing a quadruple bypass and turned down for that due to bone mets to the sternum. Good news (quite providential) that a top cardiologist would successfully place stents where the bypass was needed. Bad news - PSA begins to rise while taking care of heart issues. Remaining on Zytiga all the while being off Lupron because of the heart risk. Good news, we decide to try Firmagon since it seems to hold less risk for heart disease. Bad news, Firmagon is no longer an option due to a positive AR-V7 result. The new normal is overwhelmingly -- good news/bad news.
Questions - My husband is the second AR-v7 patient his MO has had...what questions do we ask to help him out? What does the AR-v7 actually mean? What is the prognosis? I've read few articles and do not really understand much of what I'm reading.
Thanks!
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Sorry to hear about the AR-V7 positive. There are still treatments available that will work such as chemotherapy agents Taxotere and Cabazitaxel as well as Radium 223. There is another drug in trials called Darolutamide (ODM-201) that is showing good results with all known AR mutations. Another drug in trials showing promise specifically with AR-V7 is called Niclosamide. Here's some information. You can also search for more
He is set to begin Taxotere, but the MO has told him to stay on Zytiga until that begins. I'm wondering why stay on it if the cancer is now resistant to it...any thoughts?
Even though there is resistance, primary ADT agents such as Firmagon and secondary ADT agents such as Zytiga are still effective since not all the cancer cells are resistant. It's likely that Zytiga is still working so that's why his doctor wants him to stay on it.
He's still on Zytiga. He is set for Taxtotere the end of May. I'm more than a little concerned because he needs to be on aspirin and Plavix because of the stents. MO mentioned to us that it can reverse on chemo, but that's about all the info he offered. Thanks.
The heart was taken care of this past March needing five stents, the cardiologist was/is phenomenal, truly a Godsend. Even the MO is shocked my husband is still alive, it was that critical.
My husband was already on naturopathic care, he now has to stay on Plavix and aspirin (not supposed to take while on taxotere, another issue to think about) to keep his blood thin. Nattokinase (he was taking) was not enough to keep it as thin as it needs to be. The cardiologist said he can place a stent within a stent IF my husband were to go on firmagon (the risk is still great) but he will not issue a clearance letter to the MO if we choose to do so.
Chemo is the only option given to us at this point. I'm not sure the MO is familiar with raising the T, I'm sure it's out of the box for him. We will look at some clinics that work outside the box that use fractionated chemo genetic specific...we'll see.
Just be aware of too much thinning of your husband's blood may cause hemorrhagic stroke. Plavix is a potent (blood tinner) and low dosage aspirin will add more effects. I know one of my relitives who had hemorrhagic stroke, because he toked too much ginger while he was on Plavix & aspirin (few months after coronary arteries Stent placement), he is 65 and diabetic on insulin. Just be careful and check with your cardiologist about the added supplements! My best wishes of good health to your husbend.
We have a naturopath on board and she took my husband off supplements that could cause more thinning of the blood. The cardiologist does have a list of all the supplements as does the MO, but I'm not sure if they read it all regularly. Thanks for the heads up.
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