I'm trying to find the reality of what the near future may look like with Ar-v7. (Bone scan is slightly worse than the previous and CT scan is stable.) I'm finding through a few articles that with chemo the most one may get (tons of variables) up to fourteen months without it, or if it doesn't work on the individual's cancer, seven months. We are looking to be proactive in preparing for what comes next. This does not mean we are giving up and settling, but living in reality and the inevitable can be a huge stress reliever knowing that we are prepared. Is it time to get the home set up for wheelchair, handicap, etc? Practical things I'm looking for some advice...
The MO is also looking at over 300+ mutations to add to the taxtotere protocol, so we aren't done yet.
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One thing to look into is Darolutamide. It's a new androgen blocker that is supposed to work with all known AR mutations. It's very close to being approved.
My post is clear that we are not "done yet" but we also want to be realistic and be prepared to relieve any added stressors if things turn quickly. So, have you seen any literature giving the overall survival for Ar-V7? Is the OS correct in what I mentioned in my post? Thanks.
I understand and appreciate the information. But, suggestions of ways of turning it off (which we are looking at) is not my question. My question is, what is the over all survival time with AR-V7?
Sorry, just seeing your question. Yes, my husband asked for the prognosis at his appointment a couple of days ago. MO seemed very uncomfortable to answer this question. He did say my husband's cancer is now moving a hundred miles an hour down the track, then shrugged his shoulders. We begin Taxotere next Friday and I'm busy trying to get all of the other suggestions gathered here to the MO because he has not mentioned anything else to add to the protocol.
Nala, it was a simple question, not a demand. I'm not asking for what only God knows, we fully trust in His timing and we know the time and day in His hands, as it is for every person. The time frame I stated is from a study, I was just wanting to know if I was reading it correctly AND practical things to do to be prepared for when we need it as we implement everything we can to reverse the AR-v7. I hope this clarifies for you my intentions of "sticking to my guns" in getting an answer to my question - what is in the literature/studies? If you don't know, that's fine, maybe someone else does. Thanks for your time and info, I certainly apprecitate it.
Here's an article on the subject of progression free and overall survival stats for ARV7+ patients in Circulating Tumor Cell testing.
I think they gave a median OS of 11.2 months, but don't take my word for that.
I really hate talking about these stats because they are hypothetical and we are all individuals. At the same time, I also understand your need to have some rough idea about time frame. We are all grown up enough to get an answer to that question. Please don't lose hope, there are still good treatment options left. Wishing you the best.
Thank you. Not losing hope or the fight but it's more stressful (for me) to not know or plan for when things may turn. When these things are off my shoulders then I can concentrate far better on the present fight. I appreciate your time thoughts.
It's funny because I was just reading a post where someone's doctor said they had 6-12 months to live and you can see some people jumped all over that, some saying how they outlived similar estimates, others commenting "Fire your doctor!" I'm sure this is a big part of the reason why doctors are reluctant to give people time estimates.
But I do think there is a solution and that is to just reference the best statistics available so it's not "my estimate" it's a statistical overall survival based on a large number of patients. Of course you have to throw in the usual caveats about everyone being individuals, etc.
Exactly! Some people fight harder seeing and knowing the stats and others don't. They prefer turning their head the other direction or ignoring such information...and that's okay, it's how they deal with the disease. I am a better caregiver if I am prepared, I don't handle things if there is stress from every angle...this is just me. This is not about a right or wrong way in how to deal with one's cancer but I do think if a patient asks for a prognosis from the doctor they should be given an answer (not as a "give up and die" but for preparation for the worst all the while expecting and fighting for the best). There's not an absolute here, it is about the individual and how they deal with the news. Both veiws should be respected by the doctor and by others. Just as we all are different so is the one's cancer - not all cancers respond in the same way as another...proof of this is all over this sight. Personalized medicine must be the way to go in the future. One size fits all cancer treatment is not ideal, it's just not cutting it. imo
My husband has mentioned that he isn't up to doing a clinical trial. I do plan to bring Niclosamide up to the MO. Thanks for responding, I appreciate the information.
The clinical trial uses a special formulation of Niclosamide that has a higher absorption rate than the regular Niclosamide. They use PDMX1001/niclosamide and the only way to get it is to enter the clinical trial. The regular Niclosamide does not work because of the low absorption rate.
Encourage him as best you can to keep up the fight...the chances of miracles happening keep improving by extending our individual OS’s furthering the ‘exceptions to the rule’....PC plays by no rules and it’s up to us to play out the clock hoping for an overtime win.
PCa is a heterogenous disease and I'd be very cautious interpreting the OS numbers at any stage for any patient. Have you explored other options such as BAT/Lu177-Act225/Immunotherapy (in addition to what is mentioned here)? Have you done genetic testing?
Yes, more blood was taken this past Wednesday for further genetic testing. The only thing our MO has discussed is Taxtotere. I'll bring up all the suggestions given here our next meeting. Thank you.
More than 3 years ago, my 78 year old brother was given less than 24 months to live. He is still well after 6 Lu-177 injections (many trials running in USA now) with at least two years before he might need to revert to other therapies.Treatment was in Sydney, Australia. Darulatamide just approved by FDA.
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Overall Survival
OS - Overall Survival, Implications
AR-V7 testing
