Precision medicine- hype and hope

[Darryl]

Article about precision medicine. Please read and comment below nyti.ms/2Mk1rWc?smid=nytcor...

[Grumpyswife]

Your link is timely for us after hearing pretty much the same from my husband’s new pCa MO yesterday.

Also recently read that MSK medical director has not been disclosing his financial ties to companies they are being supported by. He said he will be forthcoming and has urged staff to disclose as well.

This is big business with Guardant going public. We have been sucked in by the testing but it’s so far gone nowhere.

[Magnus1964]

Targeted gene therapies are expensive but still in beginning stages. As long as drug companies are willing to pay the expenses for patients in advanced stages to try them I see no problem. It provides hope for the patient and just may work. But if they expect people to drain their savings on treatments with little chance then I would say they are blowing smoke.

[Hidden]

Now i'm really depressed. What's the use, I'm stage 4 and this stuff is going to take me down. It's not a matter of if, it's a matter of when.

[Hidden in reply to Hidden]

Hey Bill don't dispair, we are all dying out here just some a little faster than others. Slap a smile on your face and go out, if possible, and do something you enjoy each and every day. Be strong brother!!

[tallguy2]

Sobering...

[teamkv]

I have to say it just confirms my lack of trust in medicine. It’s a sell job. You have got to be your own advocate or have someone who will advocate for you. I think this sight is the absolute best thing going for support, information and learning what our options even are. Thank you for posting this Darryl. Hard to read however it is important to have a clear picture of reality.

[Dayatatime]

Having a serious disease such as cancer is like navigating a minefield when it comes to treatment. My own experience throughout this has shown me how medical practices will take advantage of the patient and the financial resources they have to fight it. It is absolutely financially draining even with insurance. I've had doctors pushing treatment options on me that didn't apply and had I not known any better would've fell for it. One kept pushing Provenge when cancer was dormant and I had an undetectable PSA. Come to find out he was a spokesperson for it and had just helped institute it into a hospital. He finally backed off when I questioned him as to why he thought I needed it. The best advice I can give anyone is educate yourself and don't be afraid to question anything when your instincts are telling you something is not right.

Ron

[Emak1]

I believe they are heading in the right direction, genetics, immunotherapy, CAR-T is the future, and it takes the treatment to the cellular level versus cut, burn or poison on a broad basis, which is what we have now.

Unfortunately the hype has outweighed reality. The fact that some of these treatments have shown durable remission/curative levels in patients that otherwise had no options, is very exciting. The hype machine that makes it sound like this will be for everyone on a consistent basis tomorrow, is what makes people disregard the stats.

[Hidden]

Excellent article, thanks for sharing. My husband is struggling to qualify for a trial that has been presented as a "might help extend life" option. He is emotionally drained, apprehensive and even told me that he had a bad feeling about it. Then he shuts down, won't discuss it any further (I've learned not to take this personally) and is now out of town for the next test to see if he qualifies. When told that this is the next best option, the vulnerable say yes to things they might otherwise question. Personality type plays into it as well. He doesn't want to be seen as one who is quitting.

Financially, we have traveled back and forth 9 hours from our home to Mayo, Rochester for 5 years, every 3 months sometimes more. Sometimes for a one-nighter and sometimes more. Add in co-pays for really expensive drugs and really good but expensive medical insurance. Now add in travel for treatment/follow-up every 4-6 weeks for a minimum 6 months if he gets into this trial (the drug company pays for the medical side plus hotel). I can see why the article suggested $500,000 out of pocket! (Don't get me wrong, seeking the experts and trying the more aggressive treatment route has extended his life by a few years already. There is no dollar amount to put to that.)

Then there are the side effects of trials that can seem rather vague because of the newness of the treatment. But if people don't try it, how do we find the cure? That's another tough question. Take the hit for the rest of humanity and hope for the best or say no and enjoy the remaining quality of life left?

I have a friend who successfully navigated the logistics and side effects of a trial drug for a different cancer, who now feels pretty good and can ride his bike again. He dreads the next test to see if the cancer is back but he's still in the game and that's important to him. Maybe my husband will find himself in the same place if he makes it into the Vision trial through Mayo. I'll let you know, either way, and until then I'll keep supporting the path he chooses - emotionally, physically, logistically, financially. As Dayatatime said, educate, question and go with your inner knowing. Advocate for yourself and seek support. And so here we go again, one day at a time. My best to all navigating these decisions.

[Ssullivan19706]

I have exhausted all options. I am now in a trial taking Keytruda. What do I have to loose.

[j-o-h-n in reply to Ssullivan19706]

to Ssullivan19706: As I've posted many times... I'm being treated for my "lung melanoma" using Keytruda and it's working. Hope it works for your Pca.

Good Luck and Good Health.

j-o-h-n Thursday 09/13/2018 6:46 PM EDT

[Grumpyswife in reply to Ssullivan19706]

It works for some and when my husband has exhausted all options he might want to go for it as well. Time will tell and good luck to you.

I see the medical director at MSK who did not disclose his financial ties to drug/medical companies has resigned.