The fight

[MRT276]

Have you ever been told by your oncologist that there’s nothing he can do for you? Dad psa is 845 and he’s not willing to give up this fight. We are on a search for a new doctor in Florida who is not willing to give up on us. Also, any recommendations?

[Longterm101]

Where in fla?

[MRT276 in reply to Longterm101]

Central Florida , South Florida, Tampa region

[Longterm101 in reply to MRT276]

Try dattoli.com/

He will treat aggressively.

Beyond standard of care.

Good luck

[MRT276 in reply to Longterm101]

Thank you !

[MRT276 in reply to Longterm101]

I will get in touch

[Zetabow]

What stage is he, how much has it spread, how old is he?

Normally Doctors say this kind of thing if the patient is too old and frail and they think the treatments might cause more harm than good.

Certainly worth a second opinion but Doctors normally have a good reason for what they do and say.

[MRT276 in reply to Zetabow]

He’s 67 stage 4 Gleason 9. Has not spread to any major organs. He’s tried Casodex, Zytiga, Xofigo, Xtandi, Taxotere, Lupron, Jevtana, and 4 rounds of radiation. He walks with a cane because it’s painful without it.

[Magnus1964 in reply to MRT276]

He has certainly gone through a lot of drugs. What was the time frame for those treatments?

[MRT276 in reply to Magnus1964]

They all were given within the last 2 years

[Magnus1964 in reply to MRT276]

...and he failed all those treatments in 2 years.

[MRT276 in reply to Magnus1964]

Yes that’s what his oncologist informed us

[MRT276 in reply to Magnus1964]

He also has done genetic testing.

[Magnus1964 in reply to MRT276]

Any luck with genetic testing.

[ConcernedCaliMom]

Sounds like your Dad has had lots of relevant treatment. Good job there. My dad was the same age when diagnosed. After his radical prostatectomy & radiation, unfortunately it came back as bone Mets 13 years later. We got 4 more years with him, but sadly he passed at age 85, just this past August. The only thing we didn’t try is chemo d/t his age then (81) and QOL that that would entail. How long has he been battling this beast?

[MRT276 in reply to ConcernedCaliMom]

I’m sorry for your lost. What is QOL? He was diagnosed 2.5 years ago but by then it was already in his bones

[ConcernedCaliMom in reply to MRT276]

Quality of Life!

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

I wish to offer my sincerest condolences on the passing of your dear Dad. May he rest in peace with the angels.... God Bless to all.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/17/2020 9:13 PM DST

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

Thank you J-o-h-n, very much. I had been reluctant to post his passing here, I don’t know why.😢 I guess I didn’t want to pass any sad news while so many are fighting. My dad was a trooper, never complained and wasn’t in too terrible of pain. He also used cannabis for the last 3-4 years, which hospice told me helped with his bone Mets pain. He only had the hard pain killers (morphine) on his last 3 days of life, amazingly. Thank you all for the few years of wisdom I got here. I really found this group super helpful and grateful for that .

[6357axbz]

Moffitt in Tampa is ranked quite high for cancer centers. I remember some members here have recommended doctors there. Put Moffitt in the search window and you’ll probably find those doc rrcomendstions

[MRT276 in reply to 6357axbz]

Thank you so much

Currently, searching right now and will set an appointment

[6357axbz in reply to MRT276]

Several here have recommended Dr. Jingsong Zhang. I met once with Dr Jain. Not so impressed.

[MRT276 in reply to 6357axbz]

I agree with you Jain is not someone I want my dad to see at all. He read our previous doc notes and already was agreeing with him and was ready to write my dad off. Until he read the notes that says improvements is noted with his lesions.

[Tall_Allen]

What is his current diagnosis, and what treatments has he had already? Does he have any significant comorbidities that might preclude some treatments?

[MRT276 in reply to Tall_Allen]

He only has Hypertension.

Metastatic prostate cancer stage 4 Gleason 9. It did not hit any major organs. Previous treatments include casodex, zytiga, Xtandi, jevtana, taxotere, xofigo, lupron, and 4 rounds of radiation. He is not obese. Actually lost a lot of weight due to the previous treatments.

[Tall_Allen in reply to MRT276]

No Provenge? Have any of his metastases been biopsied? There are many clinical trials at Sylvester in Miami or Moffitt in Tampa Bay. If he can travel, he can get Lu-177-PSMA in Germany, India or Australia (Xofigo rules him out of US trials). There are also several BiTE or CAR-T trials in the US mentioned at the end of this article:

prostatecancer.news/2019/12...

[MRT276 in reply to Tall_Allen]

Thank you! I contacted moffit today . He hasn’t done those yet

[ConcernedCaliMom in reply to MRT276]

My dad really lost a lot of weight too, I’d say especially the last 4-5 months before he passed. However, he was still regularly exercising (walking) and light weights even his last month with us.

[j-o-h-n]

Tell that so called oncologist to take a long walk on a short pier.... What a crude man.... Take your Dad to see a good oncologist asap. God Speed....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/17/2020 9:16 PM DST

[MRT276 in reply to j-o-h-n]

Thank you 💕 That means a lot to hear you say that. I believe when a doctor is unmotivated to step outside of his box or consult another oncologist and just say “palliative care”, it just break my heart. Especially if the patient is not willing to give up.

[scarlino in reply to MRT276]

Your dad is certainly not old. I agree with others. Find another oncologist fast. You may like the oncologist but it doesn’t sound like he/she is interested in helping or their knowledge is pretty limited. Check with larger research hospitals (MD Anderson for example).

[CalBear74]

Please consider for your dad a medical oncologist Mark Robbins Of the Florida cancer institute, in Brandon and Sun city Center. Also for a radiation oncologist Randy Kahn of the Tampa Bay radiation oncology clinic which shares space with the Institute. The Florida Cancer Institute is the largest private cancer institute in the state of Florida. Both Men have Great credentials too extensive to cite here. Neither is the sort of Doctor who gives up on patients.

I am a Gleason 8, 79 years old and have been living with my wife in Lithia since 2016, Formally of Scottsdale, AZ. I should add that I interviewed several physicians at Moffitt including Dr. Zhang and decided to go with Florida Cancer Institute. Dr. Angelo Paola of Riverview is my urologist and I’m very pleased with him. Full disclosure: I spent 30 years in healthcare, half the time in hospital management and half the time in medical software, clinical triage.

[MRT276 in reply to CalBear74]

Ok I will request a consultation with them as well

[Kevinski65 in reply to MRT276]

Is he still working? Is he under stress? Do you know how many mets they said he has?

[MRT276 in reply to Kevinski65]

He is no longer working because of his pain limits him

[MRT276 in reply to CalBear74]

Thank you!

[VN6465]

Don’t know where you are in Florida? You might look in to Moffitt in Tampa. Don’t think they would give up on you!

[Kevinski65]

Oh yeah, forgot to ask, does he smoke? Does he drink alcohol?

[MRT276 in reply to Kevinski65]

No he does not.