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Post by redheadskier on Dec 10, 2014 18:10:25 GMT -8
Hello all,
My husband, Frank, had a consultation with Dr. Ryan at UCSF last week. Frank was diagnosed on 2/27/14
with Stage 4 PCa, mets to pelvis etc. and started ADT in March. The scans last month showed increased activity in
shoulder, humerus, all others stable. His recommendations for Frank differ from our local medonc, so I am somewhat uncertain.
Frank's PSA has risen from a nadir on 9/8 of .201 to .303 on 11/4 and .402 today. Dr. Ryan would like to see
Frank start docetaxel immediately and I agree. He stated that the window is closing on accruing the survival
benefits shown in the CHAARTED trials. He also would like us to not worry about Frank's PSA until it hits 1.0,
then withdraw the bicalutamide, add zytiga. When I mentioned Provenge, he didn't seem very enthusiastic about
using it. Also, because of the debilitating fatigue that is ruining Frank's quality of life, he is willing
for him to discontinue ADT in March(after 1 year), let his PSA rise to 9.0, then resume ADT. So, he might get to March before
adding zytiga to the mix...
Honestly, I am very disappointed to see today's PSA #. BTW, he's also receiving Zometa infusions monthly and
supplementing with Calcium and VitD.
Any thoughts?
Lisa
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Post by Allen on Dec 10, 2014 23:07:00 GMT -8
I'm sorry to hear about Frank's diagnosis with so many mets right off the bat, and doubly sorry that castrate resistance is starting to set in so quickly.
It sounds like Dr. Ryan is giving excellent advice, very much in line with current NCCN guidelines. He is quite right that the median survival advantage among patients who are diagnosed with a lot of mets and just starting ADT begins at around 17 months and eventually becomes just 4 months. What is it that your local medical oncologist recommended that's in conflict, and why is he recommending whatever it is? A lot of things may preclude Taxotere use in a patient, and I don't know anything about his performance status and comorbidities, so I really can't comment.
Another procedure that's generating a lot of interest in cases like Frank's is called de-bulking or cytoreduction. The idea is to use surgery to remove the prostate, or radiation on the entire pelvic area with the goal of eliminating the source of most of the mets. It's not curative, but it may slow things down. It's controversial, but worth a discussion, imho.
The rise in PSA in spite of hormone therapy has one advantage - it qualifies Frank for a lot of medications that he would otherwise have to fight to get. Zytiga, Xtandi and Xofigo may work well along with the Taxotere to attack the cancer on multiple fronts. I don't know about combining Provenge, an immune stimulant, with Taxotere, which often causes a reduction in white blood cells. There may be a danger that they cancel the benefits of each other - but that is pure conjecture on my part. I've seen no studies that use them at the same time. Given this lack of info, perhaps it's prudent to save immunotherapy until after the cycle of Taxotere is over.
One advantage of working with a major tertiary care center like UCSF is that there are a lot of clinical trials going on there. There are combos of Taxotere with growth factor inhibitors that look very promising. If that is of interest to you, you should let your oncologist know your feelings about that - they often take their cue from the patient.
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Post by redheadskier on Dec 11, 2014 6:05:38 GMT -8
Allen,
Thanks for replying. Our local medonc is a generalist. We find him very hard to talk with and don't feel we are part of a team.
Unfortunately, there is little choice where we live. Thus, the trip to UCSF with the help of Richard Davis of the Reluctant
Brotherhood. Many times, at Frank's appointments, I am more informed about current treatments for mHSPC/mCRPC then he is.
Currently, medonc only wants to continue Eligard/Casodex for the immediate future and doesn't advocate the docetaxel. This is
based on Frank's underlying gastro issues which include pelvic prolapse and gastroparesis. On the other hand, Dr. Ryan stated
that with current pre-meds used with docetaxel, this shouldn't be a problem. He also felt that Frank should try at least two rounds
and see how he tolerates it, then decide whether to continue with the additional 4 cycles. Seems reasonable to me. The survival
benefit to doing docetaxel is worth the risk, IMHO and Frank's also. So, I have my fingers crossed that local medonc will write
orders for chemo at our appointment tomorrow. I pushed him at our last appt. about what he is thinking about treatment going forward
and he was curt with me...I think he would just like me to keep my mouth shut. Got a flip answer about adding zytiga or xtandi but
no target PSA #'s at which point we'd change course.
Honestly, we are thinking of traveling the 1000 miles quarterly to see Dr. Ryan and searching for a medonc who will collaborate with him.
I am very interested in debulking and Dr. Ryan brought it up. He felt if Frank did this, it would have to be surgically because
of gastro issues. Again, we are pursuing this idea.
Adam, the Fellow working with Dr. Ryan, has created a profile of Frank and will contact us with clinical trials that might be of
benefit...
Thanks for your time,
Lisa
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Post by Tony Crispino on Dec 11, 2014 8:03:01 GMT -8
The centers best known for debulking are MSKCC and Mayo. They may be a helpful consult.
Chuck Ryan is a good oncologist and has a terrific plan set up. If you want a consult with a co-author and investigator of the CHAARTED trial I can hook you up with Nick Vogelzang. He has been a very strong investigator on all the recent drug releases and can easily confirm Ryan's approach. Nick is here in Las Vegas.
Rick Davis is a good man. Keep him close. He has some great connections at UCSF.
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Post by redheadskier on Dec 11, 2014 10:35:44 GMT -8
Tony,
We had dinner with Rick while we were in San Francisco last week. He left the next day for the USToo
Awards in Chicago, then on to England for his mom's 90th birthday. I thoroughly enjoyed meeting him
in the flesh rather than email. I thought he was a scotch man but was drinking a nice rye!
When you had the webinar with Nick Vogelzang, I listened to the entire presentation and took pics
of his graphs as they were presented. We are usually in Vegas for the Antique Arms Show in January,
uncertain about this year because of the docetaxel.
Thanks for responding.
Lisa
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Post by Allen on Dec 11, 2014 16:39:11 GMT -8
Lisa-
Ryan's plan sounds prudent to me - try it and observe, but I have no understanding of those muscle wall issues, how radiation affects them, and how docetaxel affects them. 1000 miles! Where are you? There are many excellent urologic oncologists - is that the closest?
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Post by Tony Crispino on Dec 11, 2014 20:26:37 GMT -8
Lisa I hope he is one of the guys that tolerates the chemo well. There are some guys that do well. Then we can meet here in January.
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Post by redheadskier on Dec 12, 2014 6:39:02 GMT -8
It's not the closest but I grew up in Mill Valley, CA and still have family there so
it's cost-effective to drive and stay with my sister. Plus, Rick Davis and Dr. Ryan live in Mill
Valley too so it's a win-win. Could see docs at OHSU in Portland or Seattle Cancer Care
but at those we are just another patient. At UCSF, we had a more personal welcome because
of Rick. Dr. Ryan has reached out to some of his colleaugues to find an oncologist who is
willing to let him be the quarterback. We'll see...in our area in Idaho, there are two
medonc's so we'll probably have to travel for monthly appts. and infusions into Washington,
we'll see...
Unfortunately, while so many men do very well with ADT, my husband is not one of them. This
treatment has been extremely debilitating for him. In March, when he began ADT he weighed
111 pounds because of gastro, now 114. I was hoping he would gain weight. He is unable to
farm anymore. So, lots of changes in a short period of time. Frank wants quality of life,
not quantity, if he has to choose.
So, thanks for responding. It helps us see the future more clearly.
Lisa
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Post by carolinacherry111 on Oct 13, 2023 17:48:11 GMT -8
Hello all,
My husband, Frank, had a consultation with Dr. Ryan at UCSF last week. Frank was diagnosed on 2/27/14
with Stage 4 PCa, mets to pelvis etc. and started ADT in March. The scans last month showed increased activity in
shoulder, humerus, all others stable. His recommendations for Frank differ from our local medonc, so I am somewhat uncertain.
Frank's PSA has risen from a nadir on 9/8 of .201 to .303 on 11/4 and .402 today. Dr. Ryan would like to see
Frank start docetaxel immediately and I agree. He stated that the window is closing on accruing the survival
benefits shown in the CHAARTED trials. He also would like us to not worry about Frank's PSA until it hits 1.0,
then withdraw the bicalutamide, add zytiga. When I mentioned Provenge, he didn't seem very enthusiastic about
using it. Also, because of the debilitating fatigue that is ruining Frank's quality of life, he is willing
for him to discontinue ADT in March(after 1 year), let his PSA rise to 9.0, then resume ADT. So, he might get to March before
adding zytiga to the mix...
Honestly, I am very disappointed to see today's PSA #. BTW, he's also receiving Zometa infusions monthly and
supplementing with Calcium and VitD.
Any thoughts?
Lisa
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