Where to go next for clinical trials? Sloan or Dana Farber

[SaratogaNYAnthony]

I am on my 7th treatment of 10 with cabazitaxel with advanced pc and trying to figure out what the next game plan is (I've tried all treatments out there; zytega, doc, cabazitaxel, radium)

I'm centrally located to both as I live in Albany ny. We recently went to Mass Gen and left feeling it was a waste of time as they only confirmed Albany oncology was doing a good job and didn't have any clinical trials. I was hoping to leave with some sort of plan other than " don't worry about the numbers, it's how you feel".

Where would you go?

Thank you!

[Hidden]

Thats a tough choice, both are world class. If it were me, I would Google the top prostate cancer doctors at both and make a decision based on who I felt most comfortable with. good luck.

[Dan59]

Anthony, that is a tough choice, I think I would go to Clinicaltrials.gov put in CRPC and either Boston or NYC and take a look at the trials offered by both, I am close to where you are both with my Cancer and Geographically, Just 70 miles down the road. At this stage in my Cancer I am looking for a phase 3 trial that has shown to be helpful, after chemo. I have noticed that due to the drugs I have already been on , I do not qualify for a lot of trials. How has 7 cycles of Cabitaxel been for side effects. There are some excellent Drs. in both locations. I wish you the best.

Dan

[SaratogaNYAnthony in reply to Dan59]

I'm tolerating the Jevtana well with side effects of constipation and fatigue for a few days. PSA went from 313 now up to 398 though. That is why im searching for the next step.

[Dan59]

Anthony, Here are some phase 3 trials to look through in NYC, I will search Boston and post below clinicaltrials.gov/ct2/resu... Here are some phase 3 trials from Boston that are accepting new Patients clinicaltrials.gov/ct2/resu... Truthfully I did not see much in these studies, Have you had Genetic testing?

Dan

[SaratogaNYAnthony in reply to Dan59]

Thank you for the helpful information. Will definitely take a look! No genetic testing has been done.

[Dan59 in reply to SaratogaNYAnthony]

Anthony, I certainly think Genetic testing would be a next step, Foundation 1 is the lab that does the testing, there is a 33% chance they will find a mutation of some type that will have a targeted medicine. At Dana Farber Mary Ellen Taplin is very good , and quite honestly probally the only reason I am alive after 11 yrs with stage 4 dx, though they could not find a clinical trial I was happy with, Dr William Oh at MT Sinia in NYC is world class prostate researcher, just google Scholar, wk OH and prostate Cancer and see how much research he has been involved in over the last 25 years. I also like Dr Dan Petrylak at Yale medical center he has done a ton of research, I saw a post by Myers where Petrylak was saying radium 233 may bring up a PD1 inhibition, that would be found by genetic testing,and they are doing studies to see if Keytruda will work then. I have thought of reusing some of the old therapies that did work , like xtandi, I am currently going for my 10th Docetaxol Tuesday, and not sure myself what to do next, So I know how you feel to some extent.Lets keep in touch with whatever we find out .Half of my Ancestors are buried at St Peters in Saratoga. I wish you the best.

Dan

[wifeofvet in reply to Dan59]

keytruda works like a wonder in the men it will actually work in...and in most others not at all. the oncologist we saw the other day said, (provenge excluded) they are working on other targeted immune therapies and it is showing some promise, unfortunately, years down the pike.

brca 1 and 2, and pdl-1 would be a good place to start.

[Dan59 in reply to wifeofvet]

Who does Keytruda work for ? Is it just the men with pd1 mutations? Thanks for your response

[wifeofvet in reply to Dan59]

i asked the onc. that same question and he shook his head and just said, they don't know...but, HE hsuspects so. however, AND THIS IS A BIG HOWEVER, my husband suffers from both PCA AND throat cancer. the keytruda is doing amazing things to his stage 4 neck tumor but at the same time his pca is getting worse. doubling time is two weeks..he's close to psa 800...all happened during his treatments with opdivo and keytruda (similar) for the neck cancer.

no one knows for sure why this is happening. they suggest his Xtandi just quit working.

[SaratogaNYAnthony in reply to Dan59]

Dan,

Thank you for all of the information. My wife and I are looking into this. We are familiar with St Peters in Saratoga. Small world. Saratoga springs is a favorite of ours.

[bb66hotflash]

I also go to Dana Farber with Dr Taplin. Been 5 years, currently on docetaxel with carboplatin, indefinitely. Other than cabitaxel, not many options left. Been thru a phase 1, 2 and 3 clinical trials. Had genetic testing at Foundation 1 which led to a phase 1 with AZD-8186, which was a failure due to liver toxicity. I have reviewed the current available trials for my genetic results. Only trials ongoing are for other cancers, which disqualify. Xtandi worked for me for 32 months, will get 5th round of doc w/carboplatin next Wednesday. Currently this combo working, PSA down to 1.5(note carboplatin is widely recommended for neuroendocrine PCa, which I likely have for my liver mets). My dosage started at 60mg/m2, since it was a combo. Reduced to 50mg/m2 due to extreme side effects after 1st round. Had to take some dexamethasone to make side effects tolerable and have a reasonable QoL. Ginger for nausea works for me, peppermint chewing gum helps settle stomach, some times. Tums helps at bed time.

[SaratogaNYAnthony in reply to bb66hotflash]

Thank you for the helpful information. Let's keep on fighting the good fight!

[j-o-h-n]

To Anthony,

Try Memorial Sloan Kettering Cancer Center located in NYC 68th street and first avenue (Kimmel center, specializing in Prostate and Bladder cancer).

KEYTRUDA INFORMATION.

Besides my Pca I am also fighting a lung melanoma with immunotherapy using Keytruda (at $30K per treatment) as follows, if you're interested:

After 2 treatments the nodule is now 1.2 x 1.0 cm. which was previously the original size 2.4 x 2.2 cm. (reduced in half)

After 5 more treatments the nodule measures 0.6 x 0.6 cm. which was previously 1.2 x 1.0 cm. (reduced in half again)

I had my eighth treatment on 07/18/2017 and scheduled for my ninth on 08/15/2017 (every three weeks). One half hour per treatment.

Only side effect so far after eight treatments was that last week I had a slight rash on the left side of my body (mild itch) which is now gone.

Good Luck and Good Health!

j-o-h-n Saturday 08/12/2017 12:32 PM EST

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

Keep fighting the good fight. It sounds like this treatment is working for you and the only side effects are a rash!

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

Yeppers Peppers I will.

BTW Regarding NYC, you don't have to drive in Manhattan, use our subway system to get around. I meet lots of patients from upstate NY. If you need help getting around just ask me.

Again Good Luck and Good Health to you!

j-o-h-n Tuesday 08/15/2017 7:16 PM EST

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

Thank you for your suggestion. I'm looking into both, weighing out the pros and cons. I'm definitely dreading the commune into NYC as I don't drive in the city, my family doesn't either.

[Dan59]

Anthony, Have you looked into low dose DES, or Oral Cyclophosphamide(cytozan) onlinelibrary.wiley.com/doi...