Advice: New Mets... VA Oncologist wan... - Advanced Prostate...

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Advice: New Mets... VA Oncologist wants to wait...But?...

DeanNelson profile image

Please see my last post for context:

So the VA Oncologist wants to wait with chemotherapy (docetaxel), says he doesn't want to use all his "big guns" yet... But I think earlier treatment would be better, I don't want to be too sick t have chemo...

Please share your thoughts...

24 Replies

Damn, hit it hard, hit it early seems to work best. Worked for me. Chemo.(taxotere) and half way through added Xtandi and all soft tissue mets disappeared and bone mets went either totally on mostly inactive. PSA stationary at 0.122. Also lupron until orchiectomy(my optional choice) at 68 with prostate already removed roboticly even with mets. VA paid for all meds after my med,ins. at work was done.

DeanNelson profile image
DeanNelson in reply to Shooter1

Thank you for your input!!

I agree with you. I don't believe in the argument of holding treatments in reserve because:

- treatments often extend life more if used sooner rather than later

- treatments often have fewer side effects if used when one is healthier, less sickened by cancer

- there will always be new therapies later

That said, it may be possible to use some treatments too early, before the full benefit can be obtained. Timing is important:

pcnrv.blogspot.com/2019/02/...

Thank TA!!!...I was hoping you'd share you input!!

IMO no reason to wait on chemo/ADT combo. Various studies have made this combo the gold standard for early treatment. go for it!

My 66 yo husband is having final round on Monday and has tolerated it well. Iced his hands and feet with packs, some fatigue, no nausea. a few low days but other than that able to live life close to normal.

Our next step is to have scans to see if his mets have reduced.- hoping so. I hope your wife is doing better. I am less of a wreck than I was, now going into month five, but I get it!

DeanNelson profile image
DeanNelson in reply to strummer

Can I ask why he Iced his hands and feet?... She is doing better thank you for asking. We have just get closer to each other every step of the journey..

strummer profile image
strummer in reply to DeanNelson

Some feel icing helps prevent neuropathy which is a possible side effect. We bought cooling mitts with built in blue ice to wear during infusion. ( amazon) So far so good. Best to both of you !

Ask your MO if he is aware of the CHAARTED or STAMPEDE trials -- which were stopped early because results were so good! They proved that early Taxotere of 6 rounds really helped. (Not sure where you started but it is now standard if you start with Stage IV to start with this 6-round chemo.) And . . . you can return to the "big gun" again if enough time has passed. There is also Jevtana, another taxane but designed specicfically to follow Taxotere if there's a need for a change.

Noticed sleeping issue from your last post. Have you tried taking meds at a different time? My husband switched Xtandi dose time and that helped with various sleep issues. Worth a try?

If your cancer is so systemic, trying chemo seems a really good option.

You might also seek out a second expert opinion (a research oncologist in prostate cancer) - this person wouldn't take over your care (they usually don't have regular patients) but is totally focused on prostate cancer. If you might have the neuroendocrine variant, I think you really want to have a research expert on your team? Husband's regular MO really appreciates having the expert from a research center to provide guidance and suggestions.

You might also see a pain specialist who can maybe help manage various meds so you're not in pain so much? Pain creates tension and stress, so reducing pain, I think (for what that's worth!) has all kinds of good effects.

Hope you find some relief.

- B

DeanNelson profile image
DeanNelson in reply to Caring7

Thank you

Without knowing the specifics of your case, I would say that for metastatic disease, earlier chemo is definitely better.

Like Shooter1 said, use the big gun(s) now why you’re still strong and can tolerate chemo side effects.

DeanNelson profile image
DeanNelson in reply to Cmdrdata

yep

Hit it hard, don’t wait for PSA to get back to >2.0...that’s old thinking.

Hi Dean, when diagnosed with Stage III A/B lung cancer 7 years ago, and facing at best 1 in 8 five year survival odds, we hit it hard from the start with everything available at that time: maximum heavy duty taxidere and cisplatin chemo, maximum radiation, then surgical removal of top right lung lobe ( lobectomy ), and then... another 1 1/2 years chemo ( avastin & Alimta, plus neulasta). My advice , unless it is too early for maximum effect of some treatment type as mentioned by Tall_Allen, I would insist they absolutely go for the kill shot now. Another reason is that the only thing certain about the future with cancer is that it cannot be predicted with certainty. Importantly, a positive forward looking mindset is essential to successful treatment, and my mindset pushed for maximum treatment now, not tomorrow. In fact, my cancer was only borderline operable and it was my insistence that ensured the surgery was done. Bottom line Dean , you have done so great so far fighting this beast, my advice is to keep the momentum and your positive attitude moving forward. All Best Wishes to You and your Wife, judg69

DeanNelson profile image
DeanNelson in reply to judg69

Thank you so much!!!!...I will tell them when I see them Monday I want to hit it hard

Okay Dean....Thanks for your time in and thank me too... Remember your first Sargent in basic training? Well bark at that doctor at the VA and tell him what YOU want to do, not what HE wants to do. If we doesn't listen to you....tell him "to drop and to give you ten" (just for now, more later if needed). I thought with the new VA policy you can go "out of network" so to speak and see some other more qualified oncologist. BTW what's your age and where are you located. All info voluntary.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 3:30 PM DST

DeanNelson profile image
DeanNelson in reply to j-o-h-n

I am 55 and located on Florida/Georgia border, off of I-95 in a town called St Mary’s GA.... and I will tell him that. Me and my wife talked about it I want to chemo while I am still strong

WAY TO GO, KILL THE M-F BEAST WHILE YOU CAN.... (smart wife too).

Spent some time in Ft. Gordon (now Camp) /Augusta for awhile.

Thanks for the info.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 3:43 PM DST

Attack hard while the body is strong and the tumor burden minimal. Ask your Doctor to read the papers by Robert J. Amato, DO on Chemotherapy and Hormone Therapy. I am one of his complete response guys......

Gourd Dancer

What do you mean complete response?

What do you mean complete response?

Dean, The disappearance of all signs of cancer in response to treatment. This does not always mean the cancer has been cured. Also called complete remission. in my case, I was metastatic and did so well that at my Doctor’s suggestion I was able to cease Lupron injections in February 2010. I remain undetectable. Since T did not return, so at my Doctor’s suggestion, I stated taking 4 mg of Androgel twice a week a year later.

I have been most fortunate.

GD

OMG... That's incredible. Good for you...

I would do the chemo and use the ice on hands and feet, or special mittens/ socks on Amazon for keeping hands/feet cold to decrease neuropathy. Dockam who posts here has gone through chemo a couple of times and advises fasting prior to treatment. You could also consider a vaccine trial perhaps...Provenge also...Good luck....

Fish

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